Faith's Place

Look who's 3!

2011-11-20T22:12:00.001-07:00

Sometimes it's hard to remember where she started...

It's hard to remember because Faith is doing amazingly well. She is pretty much completely caught up with everything developmentally; her latest skill is jumping!
On a slightly less positive note, we found out this week that Faith's little sister, Selah, has Vesicoureteral Reflux. Basically, the tubes from the kidneys to the bladder (ureters) are supposed to be one-way, protected with a valve-type system where they go into the bladder. Selah's ureters apparently go into her bladder in a different way, so the urine is able to travel back up to the kidneys from the bladder. She has about a 30-40% chance to grow out of it, so for now she is on antibiotic prophylaxis to prevent her from getting UTI's (because they could cause kidney infections/damage/scarring). In 6 months, she'll have testing again to see if it's gotten any better, and if not, we'll talk about options.
And, because Faith has also had at least one UTI, she will need to have the same testing done ASAP, because there is a 1 in 3 chance that she actually has the same thing. I am finding that to be the most disturbing part of this... Selah will get better, whether she grows out of it or has a procedure to fix it, and she won't remember any of it, so I'm really not worried about her. Faith has been through so much already, and thankfully to this point she has been too young to really remember any of it. I'm afraid she will remember this testing though... it was traumatic for me/Selah, and I'm imagining it will be significantly more traumatic for Faith :(
The test is a VCUG, where they put a catheter in, then fill her bladder with contrast, then take pictures under fleuroscopy as she pees to see if it is refluxing up to the kidneys. Not fun. Holding her down for testing as a baby was one thing, because babies have short memories and the hugs at the end of the test usually erased the trauma. Holding down a (really strong!) three year old is my idea of torture, for both of us. I am crossing my fingers that we might be able to get a sedative for her to take before the test...
Anyway, I will post her results after she has the testing!

Big Sister!

2011-09-25T11:30:00.000-06:00

It's a little belated, but we are happy to announce that Faith officially became a big sister on July 21!

Selah Jean was born in our bedroom at 2:18 AM on July 21, after a quick 3 hour labor.

Faith celebrated with a delicious piece of chocolate Birth Day cake at about 3:30 AM :-)

Both kids are enjoying their new sister very much, and Faith is such a great big sister :)

A long overdue update

2011-01-29T15:41:00.000-07:00

It's amazing to me to look back at this blog and everything we've been through in the last 2+ years... reading my post from September 11 makes me cry, so I don't even want to go back and read the posts from the beginning, and the times when Faith was the sickest... Instead, let's focus on the positive, the happy news, everything that's good, and how far we've come :)

Faith turned 2 in November. We had a small party this year, nothing major, and I actually was late getting to it because I was at a birth (working as a doula). Thankfully, Dave and a couple of very good friends were able to get everything done while I was working, and it all went smoothly. I don't honestly remember much of the party, because the birth I was at had been over 24 hours, and I was totally exhausted... but we were surrounded by family and good friends, all of us thankful for the new milestone Faith was reaching. And, she didn't throw up her birthday cake this year :)

In December, a number of friends and loved ones donated to help us get to Boston for Faith's scheduled check-up, and her surgery to remove her g-tube. On December 10, 2010, for the first time in her life (except for a couple of minutes right when she was born), Faith became 100% tube-free! She did remarkably well with the surgery- originally they had said we'd be admitted and staying overnight, but she was barely in post-op recovery when Dr. Puder told us he thought she'd be able to go home. We stayed an extra day in Boston just in case, and then made the LONG drive home. Yes, we drove from Colorado to Boston. In December. Yes, we are insane. No, we will probably not be driving that trip again, at least not in December... On the bright side, it cost us about half as much to drive as it would have to fly...

Faith recovered well from her surgery, and happily showed off her tube-free belly when we got home to CO. It was cute, if anyone asked her where her button was (that's what we called it), she'd lift her shirt and say, "Gone!" And then she'd say something about how buttons are for babies... She's gotten quite a bit more vocal. Before her CAIR appointment in Boston, we were able to go out to lunch with some short-gut friends, and one of them asked how long it had been since we'd used her tube, and Faith responded that she eats with her MOUTH! Pretty amazing for a little girl who just barely a year ago would gag and throw up if she had any real food in her mouth...

She also started walking sometime this past fall. I can't remember exactly when it was, and with her being the second child and all, I'm sure we didn't write it down... She stood on her own for the first time over Labor Day Weekend, so I know it was after that, but before Halloween, because she walked for this cute picture of her in her costume...

Faith as Madeline!

It wasn't too long before Halloween though, because she was pretty unstable still...

Anytime she falls, she acts like it was on purpose and starts paying attention to whatever is on the ground, like she was just trying to sit down and look at something...

Other big news we learned in October- Faith will be a big sister in July! Other than lingering morning sickness, this pregnancy has gone very smoothly and I am very healthy. We heard a strong, healthy heartbeat at our 12-week midwife's appointment, and I've felt the new baby wiggling around in there a bit. I'm in my second trimester now, and thankful to be having such a peaceful, non-stressful experience with our wonderful midwife again, like we had for the first 2 trimesters of my pregnancy with Faith.

We are planning another homebirth, and I am confident that everything will go as planned this time. I've heard that a lot of women who've had babies with gastroschisis or other birth defects or complications are considered "high-risk" in subsequent pregnancies, and I'm so thankful that we are able to skip the high-risk route. We will be having an ultrasound in a few weeks, just to be sure everything is good, but everything feels completely different this time, so I'm sure it will be fine. With my pregnancy with Faith, something just felt "off" the whole time... I never had the confidence that I have this time around that I'd actually have a homebirth, I just knew deep down that something wasn't right. And, in retrospect, we're able to say that I wasn't high-risk last time, Faith was. Sure, at the time we were afraid I had a serious medical condition, but now we know that my symptoms were diet-related, and since I changed my diet and the symptoms are gone, I'm not high-risk.

Faith and Noah are both excited to have a new sibling, although I don't think Faith really understands... she loves babies though, and anytime she sees my belly, she yells, "Hi Baby!" One of her favorite games is lifting my shirt to see my belly, saying "Hi baby", "I love you baby", and then pulling my shirt down again and saying "Bye baby". She talks right into my belly button, just like Noah used to talk to her :)

Another big update, and one that is very recent, is that Dave has finally gotten a permanent, full-time job! You may remember back in February of 2009, while Faith was still in the NICU, that he lost the job he had then as a DUI probation officer. Then in the end of May 2009, shortly after we returned home from Boston, he left for his basic and advanced training for the Army National Guard... he got home from that last February (2010), and was able to work a seasonal job with a friend's landscaping business over the summer, but we were really struggling with trusting God to carry us through the extended unemployment... Thankfully this past Thursday, he was hired to a full-time position with the National Guard! This will be a great step forward for our family, as well as a huge weight lifted from our shoulders. One of the benefits of this job is that we will have the active duty army insurance, which will actually pay for our travel to Boston for check-ups! Most likely, they'll pay for it as reimbursement after the fact, since the one time we had them pay for it up front, they flew us on United and it was a NIGHTMARE (remember that?). That's not an experience I'm looking to repeat... especially considering the next time we go for a checkup, I'll have a newborn as well...

Other than that, there's not too much to update about. I guess that's why I don't update often- Faith's healthy, growing very well, doing regular 2 year old things, and there's just not that much exciting to say... Hopefully the next update will be in a couple of months to announce that she's potty trained- that would definitely be nice!

What September 11 means to me

2010-09-10T23:39:00.000-06:00

September 10, 2010
This post is a reflection, a way for me to remember and process the events that happened on September 11, 2008, and how our lives have changed since then. If you don't read all the way through, please at least scroll to the end of the post, to see how you can help others during their gastroschisis journeys. It will only take a minute, and it's free! Thank you to everyone who has read the blog, commented, and supported us through these past couple of years!!!

September 11, 2008:
On September 10, I had an ultrasound and a midwife's appointment. I was 28 weeks pregnant, planning a homebirth, and everything in my pregnancy was going perfectly. But I had a fear I couldn't shake that there might be something wrong with the baby, which was what prompted the ultrasound. The ultrasound was first, and it was sort of strange... they had told us to be ready for it to take about an hour. It took 20 minutes. The tech moved around a lot, and never kept it in one place for too long. We got 4 pictures of our baby's head, and no full body profiles. And afterwards, they had us wait while the radiologist looked at the preliminary report to decide if they needed to do anything else. I brushed it all off as nothing... (I was still having morning sickness at that point and wasn't feeling well, and was mostly just disappointed that it had gone so quickly, and we didn't get a DVD of it like I had with Noah.)
I went to my appointment with the midwife. She said they had called about the ultrasound, wanting to talk to the other midwife and trying to figure out how to get them the report or something, but it was weird... she said to try not to be worried about it, and it was probably just because they weren't used to working with homebirth midwives. My appointment was fine, everything continued to be perfectly normal.
The more I thought about the ultrasound and how strange it was, the more I worried. I called the midwives a few times to see if they had gotten the report yet. They said no, but if it was something to worry about, they were sure they would have heard it already...
September 11, I had an appointment with my family doctor. She had done some bloodwork to try and figure out what was causing my constant pain and fatigue. The bloodwork was fairly straightforward, except that my CRP (a measure of inflammation) was elevated, and my ANA (an autoimmune marker) was positive, with a pattern that suggested I may have Lupus. I asked if that would risk me out of a homebirth... she said she didn't think so, but that it would depend on what a rheumatologist thought. I am very blessed to have a family doctor who supports homebirth
At the end of the appointment, we mentioned how strange the ultrasound had been, and that we still hadn't heard anything. The doctor called over to get the report, while we went out to the waiting room. (Dave was at work, my mom was with me.)
A few minutes later, the nurse came and got my mom and I, and sat in the waiting room with the boys... It confirmed what I had suspected, I knew something was wrong. My doctor told us the baby had gastroschisis. She said that I would have to transfer care to a high-risk OB practice, and that the baby would have to be at Children's Hospital in Denver, because there are no pediatric surgeons in Northern Colorado. She said I would probably have to have a c-section scheduled around 36 weeks... I think she was nearly as heartbroken as I was to have things go completely in the opposite direction of how I wanted them to go.
I was a mess. My mom took me to see Dave at his office, so I could tell him in person... We stood in the parking lot, hugging and crying. I knew at that moment that if the baby was a girl, her name would be Faith (which I had thought all through my pregnancy, but Dave had fought me on).
I couldn't sleep or eat after that. I called the midwife to tell her the news. She was amazing, and offered to support us as a doula (an offer I wish I would have accepted, in hindsight!). I was so crushed at the moment, and so sure that my only option would be a scheduled c-section, that I turned her down. I stopped reading the birth books I had been reading, and told Dave he didn't have to read anymore, either, because I was sure that we wouldn't get to have any semblance of a birth I would be happy with, anyway, and I didn't want to continue preparing myself if I was only going to be disappointed in the end.
I searched and found a program through University and Children's Hospitals in Aurora that connects high-risk moms with all of the providers they will need, before and after birth, and I scheduled an appointment with the perinatologists at University. I was shocked when they said they wouldn't be able to get me in for nearly an entire month! I spent the next month in worry, not knowing what was going on, constantly afraid that my baby was going to die, or that I was going to go into preterm labor and we would be separated.
The downside of educating yourself is that you learn all of the bad things that could happen... and gastroschisis and lupus both have their own sets of very real risks for babies. There is a 10% risk of stillbirth with gastroschisis, and a source I found cited a 25% risk of stillbirth or premature labor with lupus. I figured if you added them together, my baby probably only had about 65% chance to make it to full term and live... probably not good math, but it's how my pregnant, worried brain worked.
Finally the perinatologists saw me at 32 weeks. They made me feel completely stupid for having planned a homebirth, and acted like I really had nothing to worry about. The good thing was, they did a much more detailed ultrasound, and it showed that other than the gastroschisis, there was nothing wrong with our baby. And it confirmed that the baby was a girl. (We originally didn't want to know, so we hadn't found out at the first ultrasound. But we decided gastroschisis was enough of a surprise, and with how sure I was in my mind that the baby was going to die, I wanted to have a name picked out.) They also assured me I could have a vaginal birth!
I continued having weekly appointments, weekly ultrasounds to check bloodflow through the placenta and cord, weekly checks of the amniotic fluid level, twice weekly NST's, and bi-weekly ultrasounds to check growth... During this time, my mom and I lived with Nathan and Noah in my parents' camper, in a campground near the hospitals. I had decided that I wanted to be there, so that if I went into preterm labor, I would be able to be at the hospital right next door to Faith, so that I would be able to be with her as soon as possible after she was born. I didn't want us to be separated more than I knew we already would be.
I was completely cut off from my normal life, from my friends, and from everything I had wanted. I'm sure I was depressed, but I was also so tired and in so much pain from the "lupus" that I attributed most of it to that. I saw a rheumatologist who said she thought it probably was lupus, but that she didn't think it was smart to start me on medication until after the baby was born, since I was 32 weeks pregnant and most gastroschisis babies are born around 36 weeks... 4 more weeks wouldn't hurt anything, and it would probably be better for Faith not to expose her to anything additional.
36 weeks came, and I fully expected the perinatologists to schedule me for an induction. They didn't. They wouldn't, even when I asked them to (because the research I had read related bowel damage to prolonged exposure to the amniotic fluid, especially in the presence of meconium, which the risk for greatly increases the longer you are pregnant). They did an amniocentisis at 37 weeks to check for lung maturity. It was very painful, in such a weird way... It felt like someone punched me in the uterus- like *directly* in the uterus. Like they took it out and punched it. They also poked Faith in the process of collecting the fluid (she actually had a mark on her back from it for over a month after she was born!). I hurt for the whole rest of the day, while I waited for the results that I was hoping (for the baby's sake) would mean an induction the next day. They called to say it was "negative". No number result, nothing beyond the word negative. Oh, and they said they had a hard time testing it, because there was meconium in the fluid. The very reason I was wanting to be induced. (I wonder now if they thought I was just sick of being pregnant... but honestly, would a mom who had been planning a homebirth *really* be begging for an induction? Any educated mom knows an induction greatly reduces your chances of having a vaginal birth, in addition to being incredibly more painful than a natural labor...) And of course, this was on a Friday afternoon.
I spent the weekend worried about the baby, looking up research study after research study that supported my wishes to be induced (especially in the presence of meconium) and writing down the citations to take to the doctor, to try and talk them into it. I actually ended up going to L & D for something (I can't remember what), where they explained that it WASN'T meconium in the fluid, it was actually just bile, which you would expect when the intestines are freely floating in the fluid. I was scheduled for an induction the following Friday, at 38 weeks. I was planning a drug-free induction, using a foley bulb and nipple stimulation, if needed... thankfully it didn't come to that. (Apparently, if you threaten me with induction, I go into labor...)
On Wednesday I went in for my 38 week appointment. I told the OB I had lost my mucus plug, and that I thought I was in early labor. She checked me, and said my cervix was exactly the same as it had been (which wasn't much of anything in terms of dilation or effacement), and that I probably wasn't in labor, and they'd see me on Friday for the induction. Wednesday night around 10, I told my mom she'd better get some sleep, because I knew I was in labor. I managed to sleep until about 2 am... I woke up to go to the bathroom and was having regular painful contractions. I waited about a half hour before waking my mom up. If we had been somewhere more conducive to laboring, and less likely to wake up two 2 year old boys with my moans, I'm sure I would have waited much longer to go to the hospital... especially since we were so close. As it was, Dave and my dad had an hour drive to get to us, so it was about 4 by the time Dave, my mom, and I got to the hospital.
The labor was so intense. I was sure I was going to be at 6-7 cm, because it felt like I was in transition. I recognize now that the intensity of my labor probably had a LOT to do with all of the fears I had surrounding this birth and what would happen to Faith afterwards. One of the many reasons I should have taken Kim up on her offer to be our doula... I was only 4 cm, but contracting regularly, so they admitted me. I had to be on the monitor continuously. I didn't even know telemetry monitors existed, and never asked about it, so I was essentially "chained" to the machine, and had about a 2-3 foot radius for mobility. Of course, because I was on the monitor, that meant I couldn't use the tub or shower for relief...
I had SO much hip pain. I never really focused on how Faith was positioned while I was pregnant... it's funny, I could draw you a picture on my belly to show you exactly how Noah was positioned, but I honestly have no idea of where Faith was. I knew she was head down, and that is pretty much all that mattered at the time... and because I knew her intestines were floating around in there, I was very hesitant to feel around like I had with Noah to figure things out... thinking of how much pain I was in, and knowing after the fact that she had been tangled up in her cord, which kept her from descending, I'm sure she was positioned pretty funky. Also, my cervix was dilating even though it wasn't effacing, which may have had something to do with it as well...
Sometimes I'm still amazed by how present God was in the whole situation. Probably at least 6 or 8 times during labor, they checked me to see if they could break my water and help things progress. Faith was still floating each time, so they couldn't. The one time they thought they could, the doctor actually had the hook in hand before deciding at the last second not to... I think that decision not to do it saved us from a cord prolapse and emergency c-section, since we knew after Faith was born that she'd had the cord all wrapped around her head (she had bruising across her face from it, and it was around her neck at birth).
Since I wasn't making any real progress, and they weren't able to break my water to see if it might help, they started mentioning the possibility of a c-section. I decided that if they were going to end up doing a cesarean anyway, I might as well get the epidural and see if it might help... Because I was high-risk, the anesthesiologist had been required to come up and introduce himself, and explain the epidural to me when I was admitted. At the time, I had blown him off, assuring him I wouldn't need his services because we were planning a natural birth... so when he came back to give me the epidural, I think he felt sorry for me. He gave me a VERY light one, so I could still feel every contraction, only they were painless. I could still move and feel my legs, all the way down to my toes. I just didn't have the awful pain anymore.
The epidural allowed me to relax. I was so exhausted, and the pain had been so bad... the relief from it was enough to make me stop thinking about everything that was going to happen after Faith was born, and suddenly my body started making progress. My water broke on its own about 20 minutes after the epi was in. Probably 15 minutes after that, I started pushing the "boost" button on it, as I was feeling TONS of pressure. They came in and checked me, and I was complete and ready to push. I loved that I could feel everything- I totally had the urge to push, and I felt Faith sliding down and out...
I only pushed a few times before Faith's head was born, with the cord wrapped tightly around her neck. (Interestingly enough, despite all of her cord antics AND the epidural, her heart rate stayed perfectly stable throughout the entire labor.) As the doctor went to unwrap the cord, the rest of her was born, and the cord broke right where it attached on her belly. Immediately she was whisked away to be assessed by the 20 or so neonatologists and neonatal nurses and nurse practitioners, while they simultaneously worked to stop the bleeding from her severed umbilical blood vessels (there was NOTHING there to clamp!). All my mom, Dave and I noticed was how HUGE and purple her intestines were... none of us could imagine how they would be able to get them into her tiny body.
A little while later, they brought her over to show her to me, before they took her away to the NICU... I was able to touch her head and give her a kiss before she left the room. Within 2 hours, she was baptized and on her way to Children's for her first surgery. Less than 12 hours after her birth, I was discharged and next door at Children's with her. The road since then has been a very winding one, with lots of ups and downs. None of us could have predicted how things would go, or where we would end up...
The most amazing thing to me is that it has already been 2 years since all of this started... It seems like it was just yesterday. A lot of parents who have been through similar struggles with their children say that once you are on the other side, it will all be a distant memory... I'm wondering when that is supposed to happen. It is all so fresh. The feelings are right there, and as we go into September 11, I can remember exactly how I was feeling 2 years ago...
We were lucky to have the support of family and friends through everything we experienced. But I didn't have anyone really who had been through what we were going through. There were a couple of blogs that I found and read, but that was about it. Thankfully, families going through this journey now have a wonderful organization called Avery's Angels to support them. I am proud to be a part of this organization, to offer new parents support and advice as they travel their own twisting, turning roads through a gastroschisis pregnancy and NICU stay... If you would like to do something to help these families, please consider voting for Avery's Angels in the Pepsi Refresh campaign, spreading our story, and asking your friends to vote, too. Go to www.refresheverything.com/averysangels4gastroschisisbabies EVERY DAY and vote, or text 101825 to 73774...
And as you remember your own experiences from September 11, think of ours, and how in an instant, our lives turned upside down. Be thankful for what you have, hug your kids, and remember to live in the moment... while also knowing that if something unexpected does happen, you will get through to the other side, and hopefully you will be a stronger, better person from the journey.

Faith at birth:

Faith today, September 10, 2010:

HELP! Please vote!

2010-08-02T18:30:00.001-06:00

Avery's Angels Gastroschisis Foundation (which I am a member of/volunteer for) is currently campaigning for a grant from the Pepsi Refresh program.
The grant would be $250,000, and would be an amazing opportunity for the charity to fund a symposium for the surgeons and other doctors and professionals who deal with gastroschisis on a regular basis, to get everyone on the same page and create standards of care that work well and help these babies get better and go home, with the easiest recovery possible. It would also create more opportunity for the group to be able to help the many families affected by this birth defect.
http://pep.si/acD4Ir PLEASE visit the link and vote every day in August!!

Baby Genevieve

2010-06-13T00:58:00.003-06:00

Saturday, June 12
So, yesterday was my birthday. Faith and I had a wonderful time at dinner with Blaise and her parents, and Ellie and her parents! I love being able to get together with parents when we all can understand pretty much exactly what everyone else has been through. The good news is, we will get to see them again tomorrow, as we all walk in the NSTAR Walk for Children's Hospital!
I mentioned a family in my last post that was coming up from Jacksonville, so that their little girl could get on Omegaven. I met Tiffany, the mom, today, and immediately all of my feelings from March of last year came rushing back, and I remembered everything I felt then, and was overwhelmed by how far Faith has come in that time... We talked for over 2 hours, and will hopefully get together once more before Faith and I go home.
As probably everyone who reads this blog knows, I believe everything happens for a reason. I didn't schedule Faith's appointments for this checkup, they were scheduled by Alexis, and I just bought plane tickets accordingly. When I found out the checkup was so close to the walk, I decided we might as well stay out a couple of extra days. And now, it just so happens that this family, whose story has been so similar to ours (and yet in many ways, so much more difficult!), comes to Boston on the day that we otherwise would have gone home!
Tiffany is here with Genevieve alone. Her husband, David, is home with Genevieve's twin sister, Gwendolyn, and her three older siblings, Jocelyn, Nathan, and Zachary. I remember how difficult it was to be here, in this huge strange city, by myself, with a sick baby... knowing that my son and husband were at home, going on with life without me. It was the most difficult, yet necessary, thing I have ever done.
I also clearly remember the costs of it all. Housing is not cheap, even in the patient housing ($30/night). Gen is in the NICU, so Tiffany can't just stay with her at the hospital, like I could when Faith was inpatient. And if you think groceries are expensive where you live, you should go shopping here sometime! On top of that, Tiffany did not have the "luxury" of flying commercial- they came on a Leer jet as a medical transport- so she had to pack pretty sparingly, and probably doesn't have a lot of the supplies she would have packed for when Gen is eventually outpatient, if she'd had room to pack them. (I was able to bring Faith's bouncy seat and a nice stroller, and we were fortunate enough to have a pack & play with a bassinet donated to us by one of our blog readers.)
I'm telling you all of this because Baby Genevieve and her family need help right now. They have been through so much, and they have so much of the journey still in front of them... I am going to copy their story into this post now, and I want to ask that if you have ANYTHING at all that you can give, anything from $5 to even being so generous as to donate a pack & play w/ bassinet for Gen to use when she is outpatient, please contact me, or go to one of their websites to make a donation: www.prayforgenevieve.com or www.brorsfamily.com

Genevieve Brors is a 3 month old little girl, born with gastroschisis. She is a twin sister to Gwendolyn and little sister to Jocelyn, Nathan, and Zachary, and daughter to Tiffany and David Brors. Genevieve was at Wolfson’s Children’s Hospital in Jacksonville from when she was born on Feb 17^thuntil June 11^th. She is now at Children’s Hospital Boston.

This is her story, as told by her mother, Tiffany:

Genevieve has had a lot of complications in her short life. She was born with gastroschisis (her entire intestine on the outside of her body). A portion of her small intestine had died off and therefore was not attached to her stomach. Because the actual intestine was not attached to anything at one end it did not develop normally and was shriveled and full of holes. At 3 hours old, she had her first surgery to repair all of the holes in her shriveled intestine.

She spent 8 weeks with an ostomy bag (a bag to collect everything before it goes into the bowel) so that nothing would pass through her intestinal tract, allowing it to heal. When Genevieve was 8 weeks old she had her second surgery, which reattached her intestine to her stomach and closed up her belly.

Things kept going along well, then we would have a set back, then they would get better, then we would have a set back. Finally we thought we were about ready to take her home. She was eating well and going to the bathroom like she should! We were so excited to have her coming home.
On Mothers’ Day I was there visiting with her and she was acting strange, crying a lot and just seemed uncomfortable. It was just out of character for her, she is a normally happy alert baby who is easily comforted. About 7pm I left and on the way out the door I mentioned to the nurse that she seemed gassy and to please ask the doctor for something to relieve her pain. By the time I got home Genevieve was almost dead.

I called the hospital when I got home just to check on her and I couldn’t get a hold of anyone. It took about an hour and the doctor called us to say that she was really sick and they were calling in the surgeon immediately. She said to get there as soon as possible. Surgery called us shortly after to get permission to take her back to the operating room over the phone because they were pretty sure she wouldn’t live long enough for us to get there and sign it. When we got to the hospital the priest was baptizing her and doing her last rites. We were in a daze. They rushed her into surgery and left us by saying that they didn’t expect her to live through it so say good-bye. I was absolutely devastated.

Genevieve made it through that surgery alive with only a 10% chance. Her intestine had twisted and died inside her. It caused her to get a deadly infection called NEC that basically kills the affected tissue and starts decomposing it while you are still alive. It is horribly painful. She was too sick and swollen to put what was left of her intestine back into her body so they put it into a plastic bag called a silo on the outside of her body. She was tremendously sick but she was still alive against all odds.

Her surgeon came to check on her the next morning and noticed a few areas that didn’t look very good on the intestine that was in the silo. She scheduled Genevieve for her 4th surgery the next day to investigate those areas. The next morning she was taken back to surgery. Her surgeon thought there would be a few inches of not so good tissue that needed to be removed. We were not so lucky. When the surgeon began to investigate her bowel she found that most of it was dead. It was so bad that the surgeon herself called us during the surgery and told us that she was in even worse shape that the previous surgery where she only had a 10% chance of surviving it. Her odds of surviving we so low that she couldn’t give us a percentage for survival.

When she had finished salvaging what she could of Gen’s intestine we all had a meeting. The news was devastating. Genevieve didn’t have enough intestine left to survive and what was left was sick. The surgeon had to sew live tissue to dead tissue because of where the bowel had died. She was 100% sure that it was going to leak stomach acid into her abdomen so she left her cut open and put a vacuum over the wound to pull out the acid so that she wouldn’t start digesting all of her internal organs.

Her liver was also failing because she had been on IV nutrition for so long. IV nutrition is not designed for long term use and causes acute liver failure. She needed a liver and bowel transplant if she even made it through the night. She said that we couldn’t even go day by day because it was minute by minute with her. She was deathly sick.

But Genevieve hung on. We were counseled to make her comfortable and let her pass because the life of a transplant patient is hard and she didn’t have much of a chance anyway, and because we have 4 other children to care for. Genevieve refused to give up. She was not ready to die. We agonized over that decision and decided that if Gen was willing to fight for her life then so were we.

Within a couple of days Gen was fighting against the ventilator but her doctor didn’t want to take it out incase she needed another surgery. It was really bothering her though so she grabbed it and pulled it out herself. Everyone was amazed that she was breathing perfectly on her own. Three holes opened up in her intestine, but her surgeon expected that and the wound vac was keeping her from getting an infection. Gen was healing so aggressively that her belly wall actually started to close under the wound vac. Her body is so incredible!

Anyway, over the last two weeks in Jacksonville, some amazing things happened. She was able to have 2 drains removed from her, she is breathing on her own, she came completely off antibiotics, the wound vac was replaced by an ostomy bag, and one of the holes in her intestine closed on its own. All of the doctors were astounded at her progress. The only problem with all of this was that she was still on the IV nutrition that was causing her liver to fail. Everyday her liver got worse because of it.

The doctors in Jacksonville did their best to minimize the damage and only gave her the lipids (what causes the damage) 2 times a week. However, this wasn’t enough calories for her to grow and develop, so it was a balancing act to keep her alive on the medicine that was killing her.

Thankfully, there is a different kind of medicine for the IV food (called Omegaven) available at Children’s Hospital in Boston, and it has been shown to reverse the liver damage in over 200 children with similar conditions. After three appeals to the insurance company, they finally approved us for a transfer to Boston for 30 days. On June 11^th, Genevieve and I transferred to Boston.

The costs for transport, long-term hospital care, relocation, medicine and transplant are astronomical! Just the one medicine (Omegaven) is $75.00 a day. So far we have been paying for minimal expenses in dealing with all of this but even now it is adding up. We have 4 other children who are out of school and we have to pay for care for them because we have to spend so much time at the hospital.

We were commuting an hour each way to the hospital sometimes several times a day while Gen was in Jacksonville. My husband’s mother passed away on Memorial Day, so we have had to buy plane tickets to Chicago and deal with those expenses. The list goes on and on.

Still tube free, and staying that way!

2010-06-10T17:32:00.000-06:00

Thursday, June 10
Today was our CAIR appointment here in Boston. Faith and I have been here since Tuesday night, and now we are done with appointments for this trip. We had appointments with Dr. Rodriguez (motility specialist who did Faith's endoscopy and antro-duodenal manometry study back in March/April of last year) and Dr. Puder yesterday. They were very impressed with her progress.
Dr. Rodriguez actually remembered us (or pretended very well that he did) and he explained that unfortunately it's pretty common with a gastroschisis kid for them to have motility problems pretty much forever, and for the gut to completely shut down when they get sick for at least the first few years. He anticipates that she will gradually get better about that, and most likely when she is older it will be more like IBS symptoms, rather than complete gut shut-down. He wasn't too happy with her growth though, and expressed concerns that one of the things that contributes to poor intestinal health is poor nutrition/malnutrition... but he pretty much left it up to whatever CAIR wanted to do, just leaving us with a strong suggestion to get Faith onto a nutritional/formula-type drink that she would actually drink.
Dr. Puder pretty much agreed. He didn't have much to say (there's really not much to say with how well she's doing), but was very curious about her development, as usual. She showed off some tricks for him and Danielle and Alexis, and gave Danielle hugs, but recognized that Dr. Puder is, in fact, a doctor, and therefore could not be friendly to him. She has a real issue with anyone who is easily identifiable as a medical professional. Danielle and Alexis wear normal "street" clothes, so I don't think she knows who they are... but anyone wearing a white jacket or scrubs is pretty much the most evil person in the world, as far as Faith is concerned. They ordered labs, just a basic CBC, LFT's, and a vitamin panel. It'll be a couple of weeks until the vitamin labs come back, but I will be interested in those results.
Getting her labs drawn was an adventure, as usual. She has very little peripheral access, and what access she does have is just little tiny veins that blow easily. They had to stick her in each arm, and each stick involved actually sticking her, and then digging the needle all around inside her arm to actually get the vein. Unfortunately, Faith is really observant, and she knows what is coming as soon as the phlebotomist pulls out the little blue rubberband thing, and freaks out accordingly. It took two phlebotomists and both of Faith's arms to get all the blood they needed for the labs, and an assistant and me to hold her still enough for them to actually draw the blood. I would wistfully remember the ease of having a central line to draw blood from, except that to prevent infection we didn't actually draw from it... and life without a central line is infinitely easier!
We (Faith and I) met a new Omegaven family for lunch today before our CAIR appt. They are from NY, and little Bradley has Microvillus Inclusion Disorder, just like Sam and Bo. Bradley is a little cutie, and it was great to meet them! I enjoy being able to talk to new families and help them or answer questions, just like people did for us a year ago when we were in those shoes.
CAIR was a long appointment, as usual... our appointment was at 1:30, but we were there early, since we walked over with Bradley and his family and their appointment was at 1:00. We got taken back to a room right away, and proceeded to sit there for a LONG time waiting for someone to come in. Faith played on the rolling doctor's chair, practiced walking while holding my hands, and made friends with Jacob, another little Omegaven graduate we know from an online support group. She also talked and practiced signs with me, and then finally the nutritionist came in and started quizzing me on Faith's eating and what's gone on since September.
The nutritionist wasn't all too happy with Faith's growth... I explained that she was sick back in March and had lost a pound and was still sort of recovering from that, and that we had stopped g-tube feeds but that Faith was only drinking water. She left to go get us some flavored drink samples for Faith, and Julie (the nurse) came in and asked about how everything else has been. She also wasn't that happy with Faith's growth.
Apparently Faith dropped a few curves on the growth chart since we were last here. The nutritionist pretty much wanted to put Faith back on her tube feeds... I said I didn't want to do that until after we tried having her drink the Pediasure they brought us. She tried it right there in the room, and really seemed to like it- she has almost had an entire bottle already! She only has to drink 1 1/2 bottles of it a day to equal the amount of formula she was getting through her tube overnight, so I think we will easily accomplish that (we'll probably give her 2 bottles a day). I am optimistic that she will grow just fine on this...
We waited a little more, a few other people popped in to say hi and talk about how big she is and how awesome she looks, and then a GI doc I had never met came in with Julie to wrap things up. Julie mentioned that the nutritionist thinks we should consider restarting the tube feeds, but that it would be ok to try the Pediasure first and just watch her weight closely. Faith has her 18 month checkup with our family doctor next week, so we will have her weighed there and report back to Boston.
At the end, Alexis came by, and I was able to tell her what I really thought about it all. I'm not sure if I've ever really clarified that the CAIR appointments are sort of just a technicality, honestly I'm not entirely sure why we even still go to them, other than to get the input of the nutritionist... But, I have trust issues with doctors who *aren't* Dr. Puder (or our family doc), and actually the CAIR doctors have told us stuff before that was contradictory to what Dr. Puder had told us, so I've never actually really followed with the CAIR doctors have told us. From the start, I've sort of smiled and nodded my way through CAIR appointments, listening to whatever they said, but knowing all along that I would just keep doing whatever I was doing, or whatever Dr. Puder and I had already talked about doing.
I think am kind of a "naughty" sick kid parent, because I am not afraid to do whatever I think is best, without clearing it with the doctors first... but you know what, it's worked! I got Faith off all of her meds, I got her off TPN, and now I've gotten her off her tube feeds, without much input from the doctors at all... usually I've just told them what we've done after the fact...
So basically, I explained to Alexis that they had mentioned possibly having to re-start tube feeds, but that I WON'T be doing that, unless it's clear that having her eat and drink 100% isn't going to work. I'm not going to only give her a week to prove herself, either. We have a scale of our own, so I will weigh her once a week if I need to. But I don't really think I need to weigh her every week to know that she's doing ok! So what if she's below the 3rd percentile? So was I as a baby, and so was her big brother.
Anyway, I forgot to bring up her apparent bacterial overgrowth, so we didn't discuss any solutions for that... We briefly talked about it yesterday, but didn't come to a decision... I would like to try probiotics and see if they help take care of it.
We didn't really talk about taking her tube out... the general consensus is that it's safer to leave it in, even if we're not using it, than it is to take it out and have to put a new one in the next time she gets sick and stops tolerating feeds. We will be back in Boston for our next checkup in December, and we will probably discuss taking her tube out a little more seriously at that point.
Now that we are done with appointments, we have a couple of days to just have a little fun... I think we will go out shopping tomorrow (I need some new summer shoes) and then we will be meeting Blaise and Ellie's families for dinner. Not sure what the plan will be for Saturday... and then Sunday is our fundraising walk, and Monday we are headed home!
Hopefully somewhere in there, we will meet another new gastroschisis/short gut family, who should be getting to Boston to put their little girl Genevieve on Omegaven in the next couple of days. This family's story is very familiar to me, as it is really close to what we experienced! Honestly, one of Faith's doctors in Denver actually told me that he was surprised that she never got NEC, he said of all the complications that happened, that would have been the one they would have actually expected... The weird thing about this family is that I actually was told about them by one of my "normal" friends at home, who has nothing to do with gastroschisis or short gut!
I love it that I have been able to use our experiences (which seem SO negative) to help other families going through the same type of difficulties! I really LOVE the bible verse from 2 Corinthians at the top of the blog, and the blessing of helping these families makes me feel like we are living out God's will, and helps me to realize the big reason for it all!

Awesome news!

2010-06-02T09:55:00.000-06:00

Wednesday, June 2
We're not using Faith's g-tube anymore! We stopped about a week ago, with the exception of one night, before we headed to a Rockies game and didn't want her to get dehydrated from being outside all day. But she is doing awesome, drinking at least 20 oz every day, and eating like a pro!
She amazes people with how fast she can wolf down a banana, and she LOVES meat! She can polish off half a cornish hen, or an entire chicken breast, all by herself! She regularly eats at least as much (if not more) than her big brother at meals. Not such a big fan of veggies though... we might have to try giving her some green smoothies and seeing if she'll drink them...
So, not using her tube means she's no longer getting *any* formula. And while the strong anti-formula side of me wants to do a happy dance, she's also almost exclusively drinking water... she's lactose intolerant, so we have to give her Lactaid milk, but she really doesn't seem to be a big fan of it... So the worrier side of me wonders what the nutritional implications are for a toddler who doesn't drink anything but water, and won't eat her veggies... I think we will try a flavored formula when we are in Boston next week, to see if she will drink it, and if she will, we might switch her from her baby g-tube formula to big girl flavored, drinkable formula! (not that her Neocate isn't drinkable, but if you smelled it, you'd understand why she won't drink it!)
I'm looking forward to our week in Boston, to seeing our Boston friends again, and to walking in the NStar Walk for CHB! Please consider donating to our team, the work they do at Children's Hospital Boston, and the support they give to families there is absolutely amazing!

Our old TPN/Omegaven/tube feed backpack setup

2010-05-24T12:02:00.002-06:00

We're walking again in June!

2010-04-20T00:09:00.000-06:00

Faith and I will be spending a week in Boston in June. While there, we'll be seeing Dr. Rodriguez from the Motility Clinic, Dr. Puder, and the docs at the CAIR clinic. We'll celebrate my 26th birthday, and then we'll stay a couple of extra days, so that we can participate in the NSTAR Walk for CHB! Check out our page, and donate to help me meet my goal! (This walk has a minimum fundraising amount, so please consider donating!)
Children's Hospital Boston - NSTAR's Walk for Children's Hospital Boston 10 - 's Page
I am looking forward to a week in Boston, and hoping that June in Boston is actually summer... unlike July in Boston last year!

What one year looks like

2010-04-15T12:00:00.004-06:00

Thursday, April 15
One year ago, I took this picture of Faith and published it on the blog just for Papa:

Also on April 15, 2009:

Faith's bilirubin levels started to plummet! She went from a total bili of 10.8 and direct of 7.2 on April 9, 2009, to total bili of 7.1, and direct of 4.6!
Faith started breastfeeding, at 5 months old, after having only previously breastfed for about 2 weeks when she was 2 months old! She was allowed to breastfed four times a day, for as long as she wanted to.
Faith was hooked to TPN and Omegaven for 18 hours each day.
Faith's tube feeds were continuous, running at a rate of 16 ml/hr.

On April 15, 2010:

Faith's bilirubin levels (and all of her other blood tests) are completely NORMAL! She's not even slightly yellow anymore, and definitely nothing like that picture! It amazes me that I thought she looked so GOOD and pink there!
Faith is eating only by mouth during the day, and has started to figure out drinking, now that we've figured out what kind of cups to use for her! (the cheap take & toss cups with no valve- not spill-proof so the liquid just comes out when she tips the cup) Her favorite food so far seems to be butternut squash :)
Faith has been off ALL TPN for 8 months!
Faith's tube feeds run only at night; she gets one 500 ml bag, which runs at a rate of 65 ml/hr.

I can't believe an entire year has gone by, and I am continually amazed at how far this amazing little girl has come! I think God must have something huge in store for her!

Update on Faith's illness

2010-03-27T23:40:00.003-06:00

Saturday, March 27

So, finally I'm posting about our experiences a couple of weeks ago. Faith was sick, throwing up green, as I last posted. We spent the night in an observation room at Children's ER, and they sent us home, calling it a "gut bug".

I left bright and early Thursday morning (March 3) to fly to Wisconsin for the weekend to help my grandma after back surgery. Dave's sister and soon to be brother-in-law kept Faith for the weekend, because it just so happened to also be Dave's first drill weekend. We had assured Steph and Terry that Faith is the easiest baby in the world, she almost never cries, she eats like a normal baby, and is only hooked up to her feeding tube at night... at least, that WAS true before she got sick.

Anyway, everyone made it through the weekend ok. I got back to Colorado on Sunday night. Faith still wasn't doing well, and so on Monday afternoon, Dave and I took her back to Children's ER. She hadn't been awake for more than 2 minutes at a time all day, hadn't pee'd, and was just really limp and lethargic, totally not herself AT ALL.

The hospital was so insanely busy, it was horrible. We waited over an hour in the ER waiting room, then got taken back to a room. (I mentioned on the way back to the room that if we'd been in Boston, we could have called Faith's doctor and probably completely bypassed the ER altogether... and the guy walking us back said, "Yeah, we'd never do that here"... yet another reason to LOVE Boston!)

The ER doc came in, he agreed that Faith was severely dehydrated (we found out when they triaged her that she had lost an entire pound over the course of the week!) and that she should most likely be admitted. He said that they would start an IV and give her some fluids, do a couple of x-rays just to be sure there wasn't anything else going on (still green throw-up), and get us admitted.

We waited... and waited... and waited... OVER 1 1/2 HOURS LATER a nurse FINALLY came in to start the IV. Until then, not a single nurse even popped her head into the room. The nurse who did come in to do the IV was making me so mad, I had to leave the room. I was mad to the point that there were tears welling up in my eyes, and I honestly thought I would punch her, or at least say something really horrible, if I didn't leave the room. She kept going on and on about Faith being tired, saying stupid things like, "Hey sleepyhead, don't fall asleep!" Faith wasn't sleepy. She was severely dehydrated and completely INCAPABLE of staying awake.

Anyway, she got the IV started, but couldn't get it to draw blood, so she decided it wasn't important to get blood to run labs, so she didn't.

Then our actual nurse came in, and sort of apologized for the situation, by telling us that there were too many other really sick kids who needed her more. BAD idea at that point to say anything like that to me. I set her straight- I told her to NEVER tell a parent of a medically complex child who is all but UNCONSCIOUS from dehydration that their child isn't SICK ENOUGH to have the nurse come in to the room and start an IV when the doctor says it's necessary.

They got the IV going, and then we waited some more. I was getting more and more frustrated and upset, and finally asked them to send a doctor in. The same one who had agreed that Faith should be admitted (like 3 hours earlier) came in, and I told him everything that had happened, and I told him how upset and angry I was, I told him that the ONLY doctors at Denver Children's that we even *sort of* trust are the surgeons, that I'd been assured that we'd see a surgeon we knew when we came in, and that by the time they actually got us back to the room our surgeon was gone for the day, and then I told him that if they didn't hurry up and get Faith admitted to the surgery floor, we would consent ONLY to them giving her a bag or two of fluids, and then we'd be leaving and getting on the first plane to Boston.

After that, they admitted her pretty quickly. It was her first hospital admission since getting discharged from Boston on April 4th, 2009. We got her settled in a room on the 6th floor. She was inpatient from Monday until Thursday, and during that time they figured out that she had RSV and a urinary tract infection. She was on oxygen for a couple of days while she was in the hospital, but was able to wean off of it before coming home.
This admission was an important learning experience for us. I had assumed that "short bowel syndrome" and "immune-compromised" didn't apply to her anymore, because she had been doing so well and was on her way to being completely "normal". I have felt bad, because so many of our friends' kids are physically, structurally short gut, and I felt like Faith's short gut was "healed"... But, one of the days when the surgeons came around on rounds at some crazy early hour in the morning, they made it very clear to us that it is very likely that Faith will have her bowels shut down pretty much anytime she gets sick. At that point I came to the realization that Faith will always be short gut, even when she is doing extremely well and seems "normal".
She is doing better now. She is back to eating real food, drinks water from her Sigg bottle, is SO close to drinking from a straw (she gets it halfway up!), and gets from sitting to crawling position and rocks on her knees in crawling position... the closer she gets to actually crawling, the more I question why we have cared this whole time that she doesn't crawl... We have some definite baby-proofing to do, and we're probably running out of time to do it!
Sorry it took so long to update about all of this!
Please check out Faith's page for the March of Dimes' March for Babies coming up in April! www.marchforbabies.org/faithsplace If you are near us, we would love for you to join our team and walk with us! If you can't, please consider donating!

Home!

2010-03-03T16:11:00.002-07:00

Wednesday, March 3
We are home. I don't have much time to update right now, but will try to come back either tonight or in the next few days to post about our wonderful night in a Denver Children's ER trauma room and sleeping in the ER Observation Area (for the second time now). Thanks for all the good thoughts and prayers, obviously since we are home there was nothing seriously wrong so no need to worry anymore. We appreciate everyone who reads this though and thinks of us during these stressful events!

Green vomit

2010-03-02T17:54:00.002-07:00

Tuesday, March 2
Faith went to bed late last night (around 9:30pm) and Raeanne ended up going in and waking her up at around 1:30 this afternoon. When Raeanne picked her up to get her out of bed she realized that Faith was laying on a big green puddle. Since then she's thrown up at least 3 more times, now we're in the ER at Children's in Denver waiting to see what is going on. They've drawn labs, and done x-rays, a rectal exam and now have her hooked to fluids. We'll post more when we get home.

No more milk...

2010-02-26T17:28:00.003-07:00

Friday, February 26
So, milk is definitely out of the question for the time being. Every time Faith has any significant amount of milk (even just the 1-2 oz she gets when practicing drinking), she projectile vomits! Yogurt is ok, which is good news, because she loves it, and the nutritionist said cheese should still be fine. I'm planning to introduce soft cheese sticks as finger food pretty soon, so I was glad to hear that, too.
Speaking of finger food, Faith is back to eating real solids! I've been making these Oatmeal Banana Drop cookies for the kids, because I'm trying to eliminate excess sugar in snacks and they don't have any sugar added, and she LOVES them. We've also added old-fashioned cooked oatmeal to her regular food, cream of wheat, and we've tried brown rice too for some extra texture for her to work on. She's handling crackers and those boring little dissolvable puffs again, too, and even holding and eating chunks of banana and avocado!
She is completely cordless during the day; we are only hooking her up for her g-tube feeds overnight now and giving her one full 500mL bag of formula while she sleeps. We've been doing this for a month now, and yesterday when the nutritionist was here we weighed Faith, and she hadn't gained any weight, but she did maintain, which the nutritionist was super happy with, considering she's getting WAY less calories than she was when she was first starting to eat again and still hooked up to continuous feeds at around 50 mL/hr most of the day, and she's gotten super active and is burning more too. Now if only she could figure out the drinking thing, we'd be so close to getting rid of the tube!!
Still not really any more progress with crawling... but we've been too nice and haven't made her wear the torture device lately. She has started pushing herself backwards more when she tries to crawl, which the OT says is really good and is an important step to learning to move forwards. She's also signing "thank you", "all done", "more", "love you", "hat", and probably a couple of others I can't think of right now, as well as starting to try and actually verbalize some of those words, and she can shake her head "yes" or "no" at times when it would actually make sense for her to do that. All in all, she is doing awesome! I think she is waiting to crawl for us to get some baby-proofing done, because even with her limited mobility so far, she gets into EVERYTHING! Her favorite activity has progressed from pulling all the shoes off the rack by the door to now pulling everything out of my purse, unzipping my wallet, and scattering its contents all around the living room. Why do we want her to crawl again?!
Still no job for Dave, although he has put in applications for some good ones. Please continue to pray that something will come through soon on that front!

Long time, no post!

2010-02-09T16:07:00.002-07:00

Tuesday, February 9
Happy Birthday to Nathan, 4 years old today!
Faith is doing great, getting huge and doing more and more new things every day. I apologize for not being more regular with posts... but with Faith things are pretty much "no news is good news". It has been pretty much more of the same.
She was sick over Thanksgiving, and pretty much all of the progress she had made with feeds was un-done at that point. She had been doing awesome with eating, and would even eat 3+ pancakes in one sitting! Now she is doing well with baby food consistency things, but no chunks, no crackers, and definitely no pancakes. Still figuring out the drinking thing... she doesn't really understand sucking to drink at all, but will drink from a straw cup that we can squeeze to make the liquid go up the straw, and will drink from an open cup with our help. Milk is questionable at this point, she tolerates it fine, but gets hives anywhere it touches her skin. Weird, especially since I've been giving it to her to practice drinking pretty much since her birthday... I've never tried giving her formula to drink, it smells so nasty I wouldn't drink it, so it doesn't feel right making her drink it.
She is a master roller- that's how she gets around and she is very fast and efficient with it. She gets into everything, and I'm constantly questioning whether I actually want her to crawl or walk... she's really quiet too, so I never know she's gotten into something until she's made a big mess! She is obsessed with shoes... Dave and I have joked that we're not going to buy her presents anymore, we're just going to buy her shoes in every size she'll ever need, because that will make her just as happy as any gift we could buy her! I have made her a "torture device" to try and help her crawl, basically it's a T made from PVC pipe and I use a long strip of fleece to tie it to her back, which keeps her from being able to roll over. Because she's so motivated to move, I figured that if I could keep her from rolling, she'd start crawling just to be able to move. She doesn't appreciate it much, but she is making steps towards figuring out the crawling thing.
Dave got home to stay last Thursday. We are still adjusting to having him here all the time, and probably as soon as we get adjusted he will find a job and start working, and we'll have to re-adjust all over again. It's always something :) We are incredibly thankful to all be together finally and are enjoying every minute.
Please continue to think of us, pray that Dave will find a job soon, that Faith will be able to eat and drink normally and catch up with her gross motor skills, and continue to read about and pray for all of Faith's friends and their families, too!

One Year Old!!!

2009-11-12T22:50:00.001-07:00

Dave wrote this posting:

As I reflect on the past year with Faith it has been filled with an immense amount of stress, worry, concern, joy, excitement and at least a thousand other emotions with the roller coaster Raeanne and I (and our family and friends) have been through. Both Raeanne and I are SOOOOO grateful for all the love, support, prayers and help that we've received over the last year from everyone. If we have not personally thanked you let me be the one to pass along our thanks your love and prayers have definitely been felt!

It has been a year since I got the call in the middle of the night from Raeanne's Mom that Raeanne was in labor. I was at our house in Loveland and the two of them were with Noah and Nathan at the campground just East of Children's Hospital. I think I got the call at about 2am and immediately woke up gathered myself, made coffee and raced to Aurora. I still remember the excitement and nervousness that I felt the WHOLE way down there just like it was yesterday. To be honest I'm really surprised that I didn't get a speeding ticket on my way down to Aurora.

Once I made it down to the camper to meet up with Raeanne and Toni (Raeanne's mom) to head over to the University of Colorado Hospital (where Faith was born) we had to wait a few minutes for Raeanne's dad to come so that he could be with the boys while they slept. When we did finally make it over to the hospital little did I know what a long and exhausting process it would all be. And I wasn't even the one giving birth!!! Thinking back on those hours when Raeanne was in the midst of giving birth to Faith I think of how proud of Raeanne I was and still am to this day. She did such a great job enduring the long delivery. I think all told we were at the hospital for over 14 hours before Faith was finally born. Over that time I remember Raeanne was in and out of the tub, which I'm quite sure she'd have stayed in if it weren't for the fact that some doctor somewhere said that Faith needed to be constantly monitored. Raeanne was also on the birthing ball and sitting in the chair next to the bed. I really think she spent more time sitting anywhere and everywhere she possibly could to avoid spending time in the bed. Which to be honest I can't blame her because I know she wasn't comfortable and was trying desperately to do anything and everything she could to get comfortable. All the while Toni and I were doing anything we possibly could to make her comfortable.

Once Faith did finally come that's when the fun REALLY started!!! (Please attempt to sense the sarcasm that I fully intend here) As many of you already know when she was born Faith's umbilical cord actually separated and caused a lot of additional bleeding than expected. Raeanne had warned me that this could happen but to be honest I had forgotten prior to it actually happening. In a number of the first pictures that we have of Faith there is also one nurse in particular there as well... that's not coincidence. She's there because she's actually holding the tiny piece of cord that was left to prevent Faith from bleeding out. Once the nurses were able clamp what needed to be clamped off and get Faith stabilized we were able to get her baptized and get her set for transport to Children's.

I rode with Faith on the ambulance to Children's from University hospital which is literally across a parking lot! Talk about the most expensive ride I've ever seen in my life. If we would have paid per mile for the drive over there I think I figured out that it would have been something like $4500 a mile just for that trip or more. We then went inside and took the elevator to the 4th floor NICU and went directly into the first room that Faith had in the NICU. At the time I remember not having a clue where I was even though weeks before Raeanne and I had done a tour of the NICU in preparation for Faith's birth.

Once we were in the room I remember how crazy everything was and how overwhelming it all seemed. I had nurses shoving papers in my lap to fill out and I had a bunch of doctors, surgeons and nurses introducing themselves to me asking me a million and one questions all while I was trying to make sure that Faith was okay. I look back on it all now and think that perhaps they were purposely trying to distract me so that they could give her a full evaluation and not let any of their concerns for her condition be noticed by me. All the while I was trying to keep and I on her and keep in contact with Raeanne about everything that was going on. When everyone was done evaluating her and doing what all they needed to do (at around 7:30pm) I met Dr. Sandoval for the first time and he told me that they would be taking Faith to surgery at about 10pm that night and he had me sign the first of the many waivers that Raeanne and I have signed for Faith's surgeries over the past year. He then suggested that I go get something to eat which was a GREAT idea as I had barely eaten anything all day up to that point.

So I heeded his advice and went to the cafeteria to hang out with my two oldest sisters Stephanie and Laura in an attempt to eat something. I say in an attempt to eat something as I still had the surgery and all the worry associated with it to get through in a few hours. Not to mention Faith was upstairs, though being monitored, by herself in the NICU. Steph and Laura were great company prior to the surgery as my parents had headed home, Raeanne was still admitted over at University hospital until the next morning and her parents were with her and/ or the boys.

After a little while of hanging out down in the cafeteria I decided that I wanted to go back up to the NICU to be with Faith. Both Laura and Steph came up and met their newest niece for the first time. They both hung out for a short time and then headed to their respective homes to be with their own families. At around 9:30 or so the team came in to get Faith ready to go downstairs for her first surgery and to have the silo installed which would hold her intestines for the next 6 days until they were finally able to do the final closure. I had every intention to remain awake for the full 2 hour surgery... until I got to the really quiet surgical waiting room and then I just crashed! The next thing I knew I had Dr. Partrick waking me up to tell me that the surgery was done and she would be back upstairs in about 15 to 20 minutes and that was at about 12:45am or so. Still not knowing completely where I was going I proceeded to go back upstairs to wait for Faith and to make sure that she was settled before I went to bed.

The next morning around 8:30 or so Raeanne called to tell me that she was going to be released from University hospital and she, her parents and both boys should be over at Children's around 9 or so. When Raeanne, Toni and Dana (and both boys) arrived I went down to greet them and bring them up to the NICU to see Faith post surgery.

This is obviously a small snap shot of all that Raeanne, Noah, Faith, and I (along with our families) have been through over the course of the past year. It's funny looking back on Faith's first 12 to 18 hours of life and at the time thinking how overwhelming it all was and then comparing it to all that we've gone through since that was NOTHING. I want to take the quick opportunity to publicly tell Raeanne what I tell her every day. And that is how much I love her and how amazing a wife and mother I think she is. Raeanne you are the love of my life and I thank God everyday that he brought you into my life. Even with all we've been through in the past year I wouldn't change it for the world.

Thank you all again for all of your love, support and prayers over the past year and please keep up with Faith's blog as I'm sure that we will have more to update everyone on in the months and years to come!

little update, prayer request, and cool new song

2009-10-01T00:48:00.003-06:00

Wednesday, September 30
Our time since being home from our latest Boston trip has been fairly non-descript... Faith did end up with a site infection around her g-tube a day or two after we got back. I am fairly sure I know why she got it, but I'm not going to go into it here. It is pretty much better now after a round of Keflex antibiotics, and that is what matters.
We have met our nutritionist and our OT from Early Intervention. We've actually had two appointments now with the OT. It is so nice that they come to the house and I don't have to figure out what to do with Noah and drag Faith out to appointments, especially with all the H1N1 hype.
We have been incredibly busy the past couple of weeks, with appointments at least 4 days a week, and usually more than one appointment on any given day. I am looking forward to things settling down a little, and really hope we won't have so many appointments soon.
We all got our flu shots on Monday, and will get the H1N1 vaccine as soon as it's available (the kids should be able to get it right away, and because of my underlying health issues, I should be right up there on the list of who can get it right away, too...), but I still don't like taking the kids out so much when the cold and flu are going around.
I got Faith a shopping cart cover the other day... I had never let her sit in the cart before, even though I always wipe them down. I am a weirdo I guess (or maybe it's just because of being a former TPN parent), and I have actually read the Clorox wipes canister, and know that in order to actually disinfect and kill the germs the surface has to stay wet for 3 minutes or something like that, and with a 17+ lb baby to hold and a crazy active 3 year old to wrangle, there's no way I can wait in the grocery store entrance to truly disinfect the cart... She is sitting really well now though, and she really likes riding in the shopping cart. I love to wear her in all the different baby carriers I have, but I am just starting to not be able to as easily anymore... (partly because she's getting so heavy, and partly because my pain is getting worse).
This is Faith's blog, so I don't want to go into detail about my health, but I do think it pertains to some extent... If it weren't for my health issues, we would most likely never have gone in for an ultrasound, and would not have found out about Faith's gastroschisis before she was born. We would have most likely had our planned home birth, and because her cord ruptured at birth, she most likely would have died. So, as strange as it is, I actually am thankful that I have these issues. What I am not thankful for is the fact that no doctor, as yet, has been able to determine what exactly to call it.
I have now seen two rheumatologists and a neurologist, I've had lots of bloodwork, an MRI of my head, and EEG, and EMG's of all 4 extremities as well as the muscles in my legs. Other than the fact that I have a positive ANA (1:640 and speckled pattern), all the other tests are either normal or inconclusive. Which on one hand is a good thing, because it might mean I don't have anything really wrong, but on the other hand really isn't good, because it means I have all these symptoms and no one knows why.
The rheumatologist I am currently seeing did put me on a medication used to treat lupus, pretty much because he doesn't know what else to do or what exactly is wrong with me, and he is using it to try and more definitively diagnose me. Basically, if the medication makes me feel better, he'll feel more confident either saying it's lupus, or "undifferentiated connective tissue disease", which would probably lead to lupus. If the medication doesn't work, he won't know what else to do with me, and will probably tell me that he doesn't think I have lupus or UCTD, despite my symptoms. I am sort of hoping the medication works... at least then we'll have more of an idea what's going on. If it doesn't work, he'll probably be done with me, and I'll have to continue on with other types of doctors.
I am going to see another neurologist at the end of October, and I am planning to insist that this doctor do some more testing for MS. Many of my newer symptoms aren't typical lupus symptoms, but are pretty common MS symptoms (my grandma has MS and I've talked to her about it, and a LOT of my symptoms are very similar to hers when she first got it), and if I have MS, the medication the rheumatologist has me on isn't going to help or keep it from progressing. The neurologist I am currently seeing said that 80% of the time, if you have MS it will show up on an MRI, so since my MRI was normal, she is assuming I don't have it... but 20% seems like a pretty big chance to still have something and not know for sure... especially since my chances of having a baby with Faith's birth defect were 1 in 5000, which is WAY less than 20%.
Anyway, that's enough about my health. If you pray, please pray that God would just heal me... that the lack of definitive tests could be a sign that total healing is in store for me. I don't want to need medications for the rest of my life, I'm awful at taking pills and don't want to be dependent on meds forever. I want to be able to do the things a normal 25-year old should be able to do, I want to be able to make a trip to the grocery store without limping by the end, I want to not have my hands and feet go numb countless times a day for no apparent reason, I want to not have days where I have to concentrate just to speak normally or write, I want to be able to hike a 14-er with Dave and the kids someday! Please pray that God would ease my stress, bring resources into my life to help me manage everything that needs to get done, and that by having my stress relieved, I could feel better.
I heard an awesome song on the way home from Bible study last Wednesday. It was one of those "meant to happen" things... I had a passing thought that I should get off the interstate one exit before the one I normally would get off at, but didn't. It turned out that my usual exit, as well as the three after it, were blocked off for road construction (gotta love that stimulus), and I had to go 2 towns past my exit, get off the interstate, and get back on going in the opposite direction. I was a little ticked, and kicking myself for not listening to that little voice in my head that said I should have gotten off early. Then, I pulled into the driveway, and this song came on the radio, and I knew then that God had brought those obstacles into my drive home so that I could hear this song and be encouraged. I can't add the song to the blog playlist, so I am going to just post a link to it on YouTube, since that's the only place I can find it right now: http://www.youtube.com/watch?v=fzV_O927Vi0
Speaking of music, if anyone local to me happens to be interested in going to the Casting Crowns/Matt Redman concert in Denver on Friday night (Oct 2) I would LOVE to go, but have no one to go with... email me if you'd want to!

We're home... and our flight in the NOT so friendly skies

2009-09-18T19:51:00.003-06:00

Friday, September 18
Well, Faith and I are home. I apologize in advance if I start ranting in this post. It has been an incredibly long day.
I, being the procrastinator that I am, didn't start packing our things to go home until probably 2 AM, went to sleep around 4:30 AM, intended to wake up at 6-ish to finish getting things together,hoping to get to the hospital by 7:30 to drop off our extra Omegaven and pick up my camera after I forgot it at CAIR yesterday. I figured we'd drop off the Omegaven, say goodbye again to everyone, and catch a cab by 8:15 at the latest to get to the airport.
I actually ended up waking up at 7:33, hurried to get dressed and get everything together, and then walked as quickly as I possibly could to get to the hospital. As quickly as I could wasn't all that quick, since I was wearing Faith in a sling, wearing her backpack with a feed running, pushing a stroller with our 2 carry-on's and her carseat on it, and pulling our big suitcase along with me, so it was almost 8:30 when we got to the hospital.
We got my camera and headed back to Dr. Puder's office, where we were able to say goodbye to Dr. Puder, Danielle, Alexis, and Dr. Gura. Then we headed downstairs and caught a cab to the airport, and got there just shortly after 9:00.
We had absolutely the most horrible airport/airline experience I have ever had. I will NEVER fly United again, even if it does save us money up-front since our insurance buys the tickets with them. I have always flown JetBlue before when we've gone to Boston; it's cheaper, you can check a bag for free, you have your own TV and plenty of legroom, and they have good customer service and are super helpful and accommodating of Faith's (and my) needs.
United was awful on the way to Boston on Monday, and they were even WORSE on the way home. The only reason we flew United this time was because we didn't have the money to buy our ticket up-front and be reimbursed by our insurance company, and the travel agency that books flights for our insurance used United. I can guarantee the next time I talk to Faith's insurance case manager, she will be getting an earful about our experience. The fact that the airline made no attempt to make accommodations for the fact that I was travelling alone with Faith and all of her needs and the stuff we need to travel with her, seems enough reason to me for the insurance company to think twice about using that airline next time.
It all started last week, when I called United's customer service line to get our seats changed, since they had us assigned to row 32. I've done the same thing every time we've flown JetBlue, and even when the flight is full, they've always moved us up to the front, where it's easier to get on and off the plane, and the flight attendants are right there available if we were to need them. Well, the United customer service line is not a real person, and it's not even a push-button phone tree... it's one of those annoying computers that you talk to. After the third time it didn't understand what I said, I was pretty upset and used some choice words... apparently they've programmed it to understand those words, because as soon as I called it a stupid [non-abbreviated] POS, it transferred me to an actual person. Not that it helped, because she promptly told me that I'd just have to wait and ask at the ticket counter when I checked in on Monday. So then I asked what their policy on medical baggage is, and I was told that medical bags can be checked for free (good news when they charge $20/bag!).
Monday, when we got to the airport, I stood in the check-in line to see that they don't actually have PEOPLE there, either! I told the lady who was directing everyone to the next open computer that I was travelling with a medical needs baby, and would need to talk to a person when we checked in, and she very rudely said, "I am a person!". Ok, well you're not standing at the counter, why would I think you'd help?? So she directed me to the next open computer and I told her we needed to change seats to a more accessible part of the plane, and she said if there wasn't anything on the screen, there wasn't anything she could do, and I'd have to ask at the gate. She did check our bag for free without much of a struggle when I told her it was full of medical supplies, and then I went to go find our TSA escort.
Travelling is SO much easier and nicer when you get a hold of TSA at the airport ahead of time. Denver has a really good security process anyway, but having an agent to walk you through really helps. Your escort makes sure that everyone knows you need special screening, that all the bins your stuff goes in get sanitized, that everyone wears fresh gloves, etc. When we fly out of Denver, they hardly even look at our stuff. I never have to take Faith out of the sling, and I never have to take her backpack off. They never even look in her backpack, they just swab it for explosives and call that good enough.
So security was a breeze, and we got to our gate almost 2 hours before our flight was due to take off. I went to get a coffee, and some food to take on for lunch since we were flying United and they don't do free snacks. When I got back, there were customer service people at the gate, so I went to the counter to tell them about our needs and ask if they would move us.They said there was nothing they could do, so I said if they weren't going to move us, then we would definitely need help getting on the plane. Then the rude counter lady said that only a wheelchair pusher would be allowed to help me, so they'd have to call and see if one could come.
So Faith and I went over and sat on the floor to wait until it was time to board. In the meantime, I noticed the dressing on her line was starting to come up, so I pulled some tape out of her backpack to tape it down and keep it occlusive. A lady standing nearby asked if we were travelling alone, and when I said yes she said something about how brave I must be. A few minutes later, she asked me what was wrong with Faith, and I gave her the "short" version of the story (there's really no such thing as a short version...). For the most part, I find it offensive if someone asks what's "wrong" with her; I feel like compared to how she used to be, there is absolutely nothing wrong with her, and other than her tube she's just a "normal" baby. But I didn't say anything about it this time, because the lady was being nice. Then, she said she wanted to help me when it was time to get on the plane, to get all our stuff on and get to our seat. She told me I should bring my stuff and stand by her and her husband so they could help us. They were flying first class.
When it came time to start boarding, the rude counter lady realized these first class passengers were going to help me, so SUDDENLY she forgot she had told me they couldn't help me, and ran over to say she'd help me get our stuff on the plane. Once we got on the plane, the flight attendants were all rude, except for one older guy who asked every time he saw us if I needed anything. So that was our Monday experience. Enough to tick me off, and make me not want to fly United again.
Then today, it was even worse. I was more mad than I have been in a REALLY long time. Probably since Faith was in Denver and I had to deal with Dr. Potter. We got to the airport, went in and stood in line to check in, and went to the little computer, just like we were told to on Monday. I went through all the steps, saw that there weren't any seats near the front of the plane and knew based on Monday's experience that they wouldn't care, and then got to the step where it wanted to know if I was checking a bag. There was a young guy behind the counter, so I told him it was a medical bag so there wasn't a charge for it. He said he had never heard that, and that he'd have to ask a supervisor about it. I said ok, that it's what I was told when I called the customer service line and that we weren't charged in Denver, and then the "supervisor" came over and proceeded to pretty much say I was full of crap, that they always charge for bags, and even if they didn't charge for medical bags there's no way they'd let me check that big bag for free (it wasn't overweight... it weighed 45 lbs...). I told her the same thing I told the kid, and she said she'd ask a supervisor about it. I thought she WAS a supervisor, so that ticked me off.
So she had me follow her down to this other lady, who also told me I was full of it and that there was no way they'd let me check that bag for free, so once again, I repeated what I was told by the customer service line, and that we hadn't been charged in Denver. Once again, I was told that they'd have to ask a supervisor, because none of them had ever heard it. This was TWICE that they led me to think I was talking to a supervisor... finally they took me down to this other lady, who told me the same thing, and that they'd have to open the bag to see that it was actually medical supplies. Then, she looked it up on the computer, and read out loud the policy- "Bags containing medical assistive devices and supplies may be checked free of charge." At that point, I was yelling that that's what was in the stupid bag, and that I didn't care if they opened it, but all they'd see is that it had MEDICAL SUPPLIES in it. Note that the policy doesn't say that it has to be ONLY medical supplies, it says it has to "contain" medical supplies. So even though I had other stuff packed in there too, I did have almost all of her medical stuff in that bag, so it qualified. Technically, I could have put one freaking enteral bag or saline or heparin syringe in each of my bags, and according to their policy, they'd have had to check them all for free!
So then, the last lady said I still had way too much to carry on. It was NOT a good idea to mess with me at that point, and I loudly told her the purpose and contents of everything I had to carry on- the carseat Faith was going to ride in, the stroller that is free to gate-check, a carry-on with medical stuff in it, my computer bag carry-on, and Faith's backpack, which she was about to get hooked up to. The lady at that point was like, ok, whatever, and told me to go ahead to security.
The thing that probably made me the most mad about all of it was that these awful women were being rude and acting like I was stupid, embarrassing me in front of other passengers!
And since I came home, I looked on their website for verification of their policy... they don't have anything on the website I can find about medical baggage, BUT Faith and I are active duty military dependants, and since our health insurance (through the military) bought our tickets, we were travelling on orders. So I found this policy on their website, which makes me even MORE mad about it all, because they shouldn't have given me a hard time about ANYTHING- "You are exempt from the above fees for checking your first two bags if you are: active U.S. military personnel and/or a dependant with ID and traveling on orders" and then on this other page, there's this chart that says we could actually check THREE bags that weigh up to 70 lbs each! And, since Faith and I were both on the orders, that means we could have checked SIX- 70 lb bags and they COULDN'T have charged us!!
On top of that, I didn't contact TSA at Boston ahead of time, and Boston's security is not run nearly as well as Denver's. I had to tell 3 different people that we needed sanitized bins and fresh gloves before they actually did it, and the dumb guy by the metal detector was yelling at me for not putting Faith's backpack, which was attached to her, through the x-ray. (She wasn't actually running, but it makes security a whole lot easier and less to explain when she's hooked up.) The dumbest thing is that they made me put Faith's leather-soled baby shoes through the x-ray, and then they didn't even look in her backpack!
So finally, I got to the gate, and at that point I was obviously not happy. I didn't even try to be nice to the not-helpful ladies at the counter. I pretty much just said that I knew they wouldn't care and it wouldn't make a difference anyway, but that I was travelling with a medical needs baby and needed to be moved if at all possible, but that I knew they wouldn't move me, and since they wouldn't move me, I would need help to get on the plane and I needed to pre-board. They took the stroller and one of my carry-ons, and I left the carseat behind the counter so I could go get something to eat for breakfast and lunch. By the time I got back, it was pretty much time to get on the plane, and in the 15 minutes since I had talked to them, they already forgot that I needed help. I guess those counter people don't have common sense, because here I was, with Faith in the sling, wearing her backpack, pulling a carry-on, and they thought I'd be able to carry her carseat down the 10 inch wide aisle to row 31!!
The flight itself was pretty uneventful... then we got to Denver, it took forever for our bags to get to the carousel, and the only real road to leave the airport was closed because of a car accident. Needless to say, I hope our next trip is better than this one, and I pray that we'll have the money to buy tickets with JetBlue and just have the insurance reimburse us. Oh, and on top of all of that, I think I lost my driver's license somewhere along the way today...

A long, strange journey for sure...

2009-09-16T16:14:00.022-06:00

Wednesday, April 16

I've been doing a lot of reflection the past few days, just really looking back at where we've been and how far we've come, and I've really realized how oblivious I've been through the vast majority of this experience... so I want to do a post of pictures, from the beginning until now. Looking back at the nearly 2000 pictures of this whole experience, especially now that we've finally come out the other side, makes it all really sink in.

Ten months ago, we honestly believed we had a good chance to be home for Christmas. We figured she'd get closed up, we'd wait a couple of weeks, start feeding her, get her breastfeeding, and go home at the short end of the 6-12 weeks we were told to expect. Most of the gastroschisis stories I read were like that, and a lot of the babies were home in just a month or less! I remember when I first started reading Caleigh's story and I actually stopped, because she ended up with short gut and I was like, "Oh, that won't happen to us, so I don't need to read that one." Ironic, huh? Never would I have dreamed that we'd go through any of this...

I think one of the most important things anyone can do is remember where they've come from and keep things in perspective... so without further ado, here are the past 10 months in pictures.

First born, nurses trying to stop the bleeding from her ruptured cord

First day with the silo

Last day with the silo

All closed up!

First time being held, 8 days old

First sponge bath, 9 days old

All swollen, and no one knew why...

Faith's first Thanksgiving, chest tubes and a PICC line were her gifts

(and we didn't get to hold her for 2 weeks!)

Skimming breastmilk... I spent probably 4-6 hours a day doing this!

The first few batches of skim milk I took to get tested for fat content

Extubated the day after she turned 1 month old

The first time we ever saw her face without anything on it!

First time wearing clothes, the shirt was preemie-sized

First time doing kangaroo care

First time in a crib, all decked out for her :)

Already looking yellow, barely a month old her direct bili was already over 3...

First tub bath! No one told us anything about not getting her line wet... and this was when all she had over her insertion site was a band-aid!

We decorated her room for her first Christmas

I was so glad her chest tubes came out in time for her to wear her Christmas dress! The bib was mine when I was a baby.

First time in the sling

Getting one of her first oral feeds... I think there were maybe 3 ml of milk in that syringe!

Right after her first time breastfeeding, at 2 months old!

Her first time being "cordless". It felt so weird to be able to hold her in the middle of the room!

Her first time in her carseat, doing the test the first time we were supposed to go home back in January. (Notice how orange she is- this was maybe 2 days before the labs when her direct bili was 11.8)I think this is the night they drew the 11.8 DB labs...

First time wearing a cloth diaper

Valentine's Day

Her awesome NICU friends made her a pretty sign for her door when she turned 4 months old

Post-op after getting her g-tube

Getting ready to go home for the first time!

First time in the car... she didn't like it much!

First time in her own bed

At the airport, waiting for our flight to Boston

All of our stuff we took to Boston...

Admitted in Boston

Her first Omegaven!

A visit from the clown doctors

Pink feet!

With the crazy manometry tube in her nose... it reminded me of an octopus or something

Flat lines... not what it's supposed to look like...

We went all over Boston in the stroller. I had to put a sign on it that said "Please don't touch me! I am just as cute from a distance!"

Her "after" picture. This is the week her direct bili hit 2.0, after 30 days on Omegaven.

First time trying to eat solids... she didn't think it was a good idea.

At the aquarium. This is the tank of menhaden, the fish they make Omegaven from.

Faith and Daddy, and the Prudential Center after we went up to the top

Faith and Mommy with the mama duck at the Public Garden

All of us with Ben Franklin at Fanheuil Hall

Faith and Daddy by the Mayflower replica in Plymouth

All of us as shadows at the Pilgrim Memorial Park

Faith practicing sitting in her bumbo-type chair at home

With Daddy and Noah the night before Daddy left

Passed out post-op after her scar revision in July

Hanging out at Boston Common this trip... totally TPN free, and sitting up unsupported!

Pre-op waiting to get her line taken out

Pushing up on her hands on the bed in our room at DNH!

Eating! Munching on a strip of dried banana and some fruit puree and actually LIKING it!

Faith has come SO FAR in the past 10 months... Like I said above, I would never have imagined that we'd go through all of this, but honestly, I'm glad we have. I have learned more, and met more wonderful people, than I ever expected to in my entire life. As hard as it's been, I am so thankful that we've been blessed to have had this experience!!

Finally, some pictures!!

2009-09-15T22:45:00.005-06:00

Tuesday, September 15

I really should be sleeping, considering it's 1:15 AM and we have to be at the hospital at 6:45, but I wanted to get these pictures posted! I know it's been FOREVER since I posted any pictures, and I do intend to do at least one post with a bunch of the pictures I never posted from when Dave came out before we went home the first time, and we did all of our "tourist" stuff, since I see those while uploading these and it makes me feel guilty for never posting them...

Anyway, here you go!

This picture is post-op after Faith's scar revision surgery in July, the last time we were in Boston. Like her dress? We bought the t-shirt it's made from shortly before we left Boston to go home for the first time. I searched everywhere when we were here last time trying to find another one, because the dress I'd made her was getting too small, and I couldn't find one! Imagine my excitement then today when I walked into the store where we'd purchased the first one and saw that they had a whole stack of them! I can't wait to make her a new, bigger Boston "Got Fish?" shirt! I think this should be the official Boston Omegaven club shirt ;)Keeping Faith contained while getting settled in our room at DNH :)It was a good plan while it lasted! She figured out how to escape pretty quickly...This little photo shoot was just today, hanging out at Boston Common, trying to figure out what movie they were filming there. (From what I can find, it's a new Ben Affleck movie called "The Town". I didn't see anyone famous though, just a bunch of crew people.)

A little perspective... compare her color between that last picture and this one. And I thought she looked REALLY GOOD here!! (This picture was taken April 15, exactly 5 months ago to the day!)This is my picture of Faith with the "Make Way for Ducklings" ducks... look closely, she's the cute one in the stroller parked in the shade!

Then a nice lady realized I was trying to get a decent picture of Faith with the ducks, and offered to take one of the two of us...

Here's Faith with the Swan Boat at the pond in the Public Garden:And here is my blurry picture of the movie star trailers and the craft service truck...Last one for tonight- Faith with Samuel Adams in front (or really, in back) of Fanheuil Hall. My favorite useless fact I learned when Dave and I did the self-guided audio Freedom Trail tour through Boston- even though probably 99% of people only know Sam Adams' name because of the beer named after him, he actually was a failure as a brewer!I will post more tomorrow, including pictures of beautiful Faith with NO CENTRAL LINE!!!!!

In Boston

2009-09-15T00:45:00.005-06:00

Monday, September 14
Faith and I arrived in Boston this afternoon for what may be our last appointment with the Boston team. We will miss them, but we're glad that we're at the point where we really don't need to see them anymore.
Friday was September 11... which last year gained a new significance for us. It was September 11, 2008 that we first found out that I may have lupus, and at the end of the same doctor's appointment, found out that the baby we had been looking forward to birthing at home had gastroschisis. We were obviously devastated, but could never have imagined that we'd go through everything that's happened in the year since. As awful and stressful and difficult as it's been though, I don't know that I'd change a thing. I can't speak for Dave, but I know that I have grown immeasurably in the past year, both in my faith, and in my ability to educate myself and stand up for myself and my family and what I believe is best. Before all of this, I would never have thought that anyone would ask me if I had a background in the medical field (which I now get asked on a regular basis)... now I entertain the idea that maybe someday I will go to school for nursing or something along those lines.
Faith is scheduled to have her Broviac removed Wednesday morning. I can't even begin to say how excited I will be to get rid of that thing!!! To some people it might not seem like that big a deal, but it affects virtually every part of our daily life- no swimming, baths are such a pain we just don't do them, her thigh (where her line is) has to constantly be covered or she's pulling at it... I can't wait for the first time she can wear a dress without either having to wear legwarmers or having her thigh wrapped in the Coban dressing I sometimes use to cover her line.
She's been off TPN for nearly a month now; in her first 2 weeks off, she gained over 1 lb solely on enteral feeds! She is getting so big- she sailed through size 3-6 month clothes in just a month or so, and is starting to outgrow her 6-9 month clothes already! She is finally sitting on her own (when put into a sitting position on the floor), she finally pushes up on her hands when she's on her tummy (and she's rolling onto her tummy on purpose!), she waves, and she's learning to clap! She's also fairly regularly taking around 10 bites per meal of some baby foods (mainly thick but smooth consistency- think prunes, bananas, etc) and continues to munch her non-typical favorites of beef jerky and dried fruits... she especially loves dried pineapple lately, and I'm looking forward to trying some new varieties I picked up tonight at Trader Joe's (pears and flattened bananas).
Faith and I are looking forward to a day of sightseeing and tourist-y stuff tomorrow, and I am hoping/planning to have a whole bunch of new pictures to post, so stay tuned for that!

Exciting news!!

2009-08-16T19:24:00.002-06:00

August 16, 2009
Just a quick update... Faith had her first PT and OT/feeding appointments last week. She did very well at both; she scored about 3-4 months below her age for gross motor skills at her PT appointment, which was expected; and I learned some great tips that seem to be working well at getting her to eat at her OT appointment.
The other thing that came out of her OT appointment was the suggestion to transition Faith to bolus feeds during the day (3 hours worth of milk going in at once in 30 minutes, instead of a small amount constantly going into her stomach). Since I've always ultimately been in charge of her feeds anyway, I decided to give it a try, and I'm excited to say that Faith is officially getting 120 ml's of formula every 3 hours and tolerating it very well!!
I am still going to be increasing the amount every other day or so, just because she isn't tolerating her overnight feeds very well, so I've had to cut her normal amount in half, which means that even though she's at her "goal" amount, she's really not getting that much since she is only getting half that much at night. More specifically, since I've got her continuous overnight feeds going at 20 ml/hr, and her goal is actually 40 ml/hr, I have to make up those 20 ml/hr that she's missing over the 8-9 hours overnight during the day instead, so she will have to get an extra 160-180 ml during the day. Which means she'll eventually need to get up to taking about 150 ml every 3 hours to really be at "full" feeds. We're also still thinking about Cisapride to help her tolerate those feeds better, I'm hoping to hear whether she'll be getting that in the next few days.
Our other big news is that we should be getting a baby scale at home in the next week or so, and I'll be able to keep much closer track of her weight and growth... which means, we can do a trial week off TPN and see if she keeps growing, and if she does, we can probably get her line taken out when we are in Boston next month! This is HUGE... she has made so much progress so quickly!
To go from continuous to bolus feeds is a big step on its own, and then to be done with TPN is awesome! She's had her line for 9 months (well, this is her second one, and she got it at the end of January, so she's had this one for almost 7 months...) and she's NEVER had a line infection, and it's looking very likely that she'll get her line out without ever having a line infection!
Anyway, that's our news for now... I'm hoping to post again soon to say we're all done with TPN!

general updates and great news about feeds!

2009-07-30T20:11:00.003-06:00

Thursday, July 30
Faith continues to do really, really well! Sorry I've neglected to post any new pictures, I'm really too picky for my own good I think. Faith has two adorable teeth on the bottom, and an awesome smile that shows them, and I really want a picture of that smile to replace the yellow title picture at the top of the blog. BUT, my camera is too slow and she blinks in every single picture. So, I'm hoping to catch a good one soon on my parents' camera, and until then, everyone will just have to be patient! ;)
She's had a pretty nasty cough and been really stuffy since right around the time we went to Boston, so we went in and saw our family doctor this week. She thinks it's probably something viral, and ordered an x-ray to check just in case. Hopefully we'll make it to get the x-ray tomorrow, although I'm sure it won't show anything.
She's been doing great on feeds, she's almost exclusively on Neocate formula now as my milk supply is horribly low and she isn't very interested in breastfeeding anymore. She doesn't have much interest in anything to do with oral feeds, unfortunately. I had thought we dodged the oral aversion bullet, because she was so good at breastfeeding, but it seems she's just a little later than most kids with it. So, we'll be seeing an occupational therapist mid-August for a feeding evaluation, and hopefully they'll be able to give us some pointers to get her eating. Every time I try to give her solids, she gags until she throws up. Every time, that is, except the times I let her lick my ice cream cone. I don't do it much, because I'm pretty sure her docs wouldn't approve, but she eats ice cream like a pro, sticks her little tongue out and everything! No gagging, no throwing up. Dave's parents got a couple of good pictures the last time they were over for dinner, as soon as I get copies I'll post them. I think I need to get an ice cream maker and just make her some baby food ice cream.
I should be hearing soon what her current goal for feeds is, the last time I heard it was 40 mL/hr. She's currently at 36 mL/hr, so we are REALLY close! I'm hoping to get a call about it tomorrow, otherwise I'll be calling to find out what I'm supposed to be working towards, since I am hopeful that I will get her there in the next week or so! I don't really know how it works, because we've never even been close to her goal before, but I'm hoping we'll be able to work something out to get her some free time off of the tube during the day.
She has started really moving around, she's incredibly social, she's babbling more and more every day and now makes the "m" sound. She scoots all over the place (as far as her tubes allow) on her back, with some rolling thrown in for good measure, rolls from back to tummy and tummy to back. She sits up in a booster seat (but isn't very close to unassisted), even just a regular one and not the Bumbo-type one I had originally gotten her. I've started putting her in her seat at the table when we eat, but it doesn't seem to be making much difference... I really hope the OT will help with that. She'll be getting PT too, to help get her caught up and on-track with motor development, since she is definitely a couple of months behind in that department.
I almost would prefer her to just be still for a little while longer though. More than once, in the mornings when she's still hooked up to her TPN/IV pole, I have left her in the living room for a minute while I go into the kitchen and come back to find her across the room, and her Broviac stretched much longer than I would ever have thought possible, or her feeding tube wrapped around her neck... I've started using her line cover now at night to keep her from touching her tubes, and I secure it to her IV pole and her pj's so that she can't get further than the length of the line cover. I need to make her some more line covers...
I'm hoping after I hear about her current goal for feeds that I'll have a better idea of when we'll be done with TPN, but I am VERY optimistic that at our appointment in September she might be able to get her line out! At this rate, she just needs to be able to control her hydration once she's at full feeds, and then we won't be using her line at all... so hopefully we'll have at least a few weeks before the September appointment for a trial run before we make the move to take the line out. If things stay how they've been, she could very well get her line out without EVER having a line infection! (knock on wood!)
We will be leaving soon for a very long drive to South Carolina, just me, the kids, and my dad, for Dave's graduation from basic training. We are all very excited to see Dave and get to spend a little time together before he ships to AIT!
I will update more as soon as I'm able to, hopefully with news that Faith is at her goal for feeds!

formula and older brother perceptions

2009-07-11T21:57:00.003-06:00

Saturday, July 11
Faith started on formula tonight for her tube feeds. I'll be supplementing what breastmilk I'm still pumping with Neocate, at least until she's one and we can try transitioning her to regular milk. I hadn't expected at all that she'd be able to take regular milk that early on, but the nutritionist at our CAIR appointment in Boston this week said she thought we'd probably be able to try it. Noah couldn't drink regular milk until he was about 15 months old, it gave him really bad eczema on his legs, but maybe she'll be able to handle it easier. With Noah, he already had eczema when he was just nursing from the milk in my diet, and Faith hasn't had any issues like that, so my fingers are crossed!
Speaking of Noah, I'm really not sure how much he comprehends about Faith's stuff, but I think it's really interesting. He knows she has tubes, and will actually tell me when we're in the car if Faith is playing with her "tubey". He also noticed that Faith didn't have a belly button- he'd list everyone in the family, saying they each had a belly button, and then he said "Faith doesn't have a belly button, Faith has an owie." And a pretty funny assumption of his that I just found out tonight- we were on the tollway driving past the airport, and saw a plane taking off. Just for fun and to make conversation, I asked him where he thought the plane was going. His answer- "To the doctor." Because he knows Faith rides on the airplane to go to the doctor. And we saw more planes take off after that one, and sure enough, every single one was going to the doctor. I know Faith won't remember any of this, but I do wonder how much, if any of it, Noah is going to remember...

Awesome labs!

2009-07-10T17:56:00.002-06:00

Friday, July 10
Faith and I are home after a long and bumpy flight. She's still a little rockstar after her surgery yesterday, just like nothing ever happened, and she made many friends with her flirty eyes and smiles on the flight home.
I just had to post some of her lab results, because they are so awesome I can't believe it! Her liver enzymes are great- AST 32, ALT 20, and her bili levels are amazing too- total bili 0.3, direct bili 0.1!! To put it in perspective, when we got to Boston less than four months ago, her AST was 436, ALT was 318, total bili was 9.9, and direct was 6.7... !!!!
I honestly can't believe how much better she is, it doesn't seem like it was just 3 1/2 months ago that I took little orange Faith on our first flight to Boston... How anyone could deny Omegaven's effectiveness is COMPLETELY beyond my understanding. I'm excited to take these lab results to share with Dr. Soden when we follow up with him in August... it will be our last appointment with him, because we will probably be done with Boston soon and will need a doctor here who I trust to make decisions, and I will never trust him... but it will be worth it to see him one last time, to show him just how wrong he was!

great news!

2009-07-09T18:59:00.003-06:00

Thursday, July 9
Faith had surgery this morning to fix her scar where the Denver surgeons went into the same one three times. Dr. Puder did it, and it ended up being a little more involved than he anticipated, so he was concerned that she might need to stay in the hospital overnight to help control her pain. Fortunately, as soon as she really woke up from the anesthetic, she gave the nurse a big smile and showed us she was going to be just fine. We got out of the post-op area around 12:15 or so and headed over for our CAIR appointment, and by the time the docs came in, she was squirming and rolling all over the place, lifting her legs up to her stomach, and acting like nothing had happened at all! She had a little while earlier when she needed some Tylenol and wasn't too happy, but even then, it wasn't bad at all, and she has been her usual smiley self.
The best news of all- she's over 60% enteral feeds now, and growing well, so we are going to be dropping from 6 nights a week of TPN to FOUR!! So instead of just hooking her up to replacement fluids on Thursday night, now she'll just get fluids Thursday, Saturday, and either Monday or Tuesday. Everyone was SO impressed with how great she looks and how big she's getting. They're still waiting to hear from the manufacturer about Cisapride, and the best estimate is that it will be 3 weeks or so until they do, so hopefully by then we'll know for sure if she needs it. Because she has done well with the more aggressive increasing schedule for feeds, I'm going to keep that up for as long as she tolerates it. I'm planning to go up by at least 2 mL/week, if not 3, depending how well she does.
The only bad/disappointing news is that we are going to be introducing formula now. I am out of frozen breastmilk at this point, and not getting enough when I pump to keep up with her bag. I am hoping to keep her still on as much breastmilk as I possibly can, but when I don't have anything to fill her bag up, she'll be getting Neocate. They are optimistic that she might actually be able to transition to regular milk when she's a year old with very little issue, too, which was a surprise to me.
Our dinner tonight didn't work out as planned, unfortunately Ellie wasn't feeling well and had to head in to the hospital to get checked out, and the other family that was originally planning on coming got some bad news today I guess. I also ran into Blaise and her parents in the hospital lobby, but they weren't able to join us either, so it was just Faith and I and Sam and his family. It was still great to visit with them though and I really enjoyed meeting them and having a good chance to chat after having talked to them online for quite awhile.
Well, Faith and I have a pretty early flight tomorrow and have to go to the hospital first so Dr. Puder can change the dressing on her incision... it was brought to my attention today that I need to update the picture on the page title, which I had noticed awhile back but didn't get a chance to do. I will get rid of that old yellow picture and replace it with our nice pink girl as soon as I can though! It amazes me now looking back at old pictures how bad she really looked, and then to think that I thought she looked really GOOD then... Now that she really truly does look good, no one even can tell she's not just a normal, healthy baby! We've come a LONG way in not a very long time....

long time, no update

2009-07-08T22:02:00.003-06:00

Wednesday, July 8
Wow, it's been a long time since I've posted an update! Don't worry though, no news is good news! Faith is doing great. We are in Boston until Friday morning for her first follow-up appointment since going home. She is having surgery in the morning to fix her scar (and give her a belly button), it's minor enough that she can have the surgery in the morning and her clinic appointment at 1:00.
Then tomorrow night should be fun, it will be almost like an unofficial Omegaven reunion because a bunch of families are planning on getting together. It's so nice to get together with other people who've been through similar stuff.
I haven't updated because not much has happened. In the past month and a half, we've been to Children's in Denver 4 or 5 times for various appointments and the NICU reunion. We've been to our family doc once for Faith and once for me, for a check-up for Faith and to order about 10 different blood tests for me to figure out what's going on and hopefully come up with some kind of definitive diagnosis that can lead to treatment.
Faith rolled over for the first time on June 5, from her stomach to her back. She hasn't really done it again since, although I know she can... she doesn't like being on her stomach so I don't think she has much desire to roll over! She also got her second tooth, so now she has two cute little teeth on the bottom. She continues to grow like a weed and charm the socks off of everyone who meets her.
Faith got up to 27 mL/hr on feeds a couple of weeks ago, then backed down to 24 mL/hr because she was having diarrhea. The hope is that we'll get her on the Cisapride soon and be able to push feeds a little more aggressively to get off the TPN, but the concern with excessive pooping associated with higher fees is that she's not really absorbing the higher volumes, so even if she takes more in, she won't grow because she won't be getting what she needs from it.
Then last week, I found out she was being overdosed on her Ursodiol! Apparently there was some kind of mistake when the prescription was transferred from the pharmacy in Boston... her real dosage is supposed to be 30 mg/mL, and the dosage the pharmacy at home made her was 300 mg/mL!! Luckily it's a medication that doesn't have any serious side effects in high doses. The only negative side effect is... you guessed it, diarrhea!!
So, in the last week we have made it from 24 mL/hr back up to 27 mL/hr, with high hopes of continuing to increase feeds faster than we have in the past. (We've always only gone up by about 1 mL/week, but since she's tolerated going up by 3 in the last week I think I will try to go up by at least 2-3/week from now on.)
I am hoping to find out more about where we stand with Cisapride tomorrow at clinic, although I'm sort of hopeful that maybe she won't need it after all...
There has been talk between me and some of the other Omegaven families about trying to start a charity to help families whose insurance won't pay for them to go to Boston. Once they are here, the Omegaven is covered by a grant, and housing is available for free, it's just travel and the hospital bill that keep people from coming, and that really sucks. If anyone who reads this wants to help get a charity established or raise funds, let me know!
I'll try to be more regular in posting updates, although really nothing exciting has happened, so I don't have much to post about! That is a change I am perfectly happy with, though, and something I hope doesn't change anytime soon.

home at last!

2009-05-21T00:44:00.002-06:00

Wednesday, May 20
We finally got home Monday night. We flew out of Boston the morning of the 13th, the day Faith turned 6 months old. Dave flew home, and my mom, the boys, Faith, and I went to my brother's, before taking an unplanned side trip to introduce Faith to my grandparents and Gram in Wisconsin. Faith enjoyed meeting everyone, and Gram got Faith to laugh out loud for the first time, and a few times after that!
The drive from Wisconsin to home wasn't bad, although it was long. We stopped one night in Omaha, and since we were there we decided it would be nice to take something to Emerson's mom. We were happy to meet her, and glad to be able to pay forward some of the kindness and generosity others have shown to us.
Now we're working on getting into a routine and getting used to being at home for really the first time, other than that one short weekend before heading to Boston. Faith's already had her first appointment with our family doctor, and continues to grow well. She's up to about 13 1/2 lbs now, which means she has gained 4 1/2 lbs in less than 2 months. She's starting to have chubby baby cheeks and looks really good.
She'll have her first appointment with Dr. Soden next Tuesday. I'm trying to be optimistic about how that will go... I'm planning on taking her by the NICU to show her to all of her nurses after our appointment, and I'm hoping maybe we'll see Dr. Sandoval too, so I can show him that Omegaven works! I'll probably take a meal in to leave in the kitchen in the NICU, since I remember how nice it was not to have to worry about what to eat while Faith was there. I can't wait for everyone to see how much better she is, she's like a different baby!
I hope to be able to post some more updates soon, to tell more about the last month and everything we did in Boston, and post some pictures!

Please pray

2009-05-01T23:30:00.002-06:00

I think many of you who read our blog also probably read about Emerson White. If you don't, she recently had her second multi-visceral transplant (5 organs) and is having some serious post-transplant difficulties. She is only a few months younger than Noah... Please keep Emerson and her family in your prayers this weekend!! Pray that God will bring healing to her little body, and continue to give strength to her incredibly strong mother and the rest of her family!

contest

2009-05-01T15:57:00.003-06:00

Check out this contest at Cloth Diaper Tips to win three bamboo all-in-one cloth diapers. But don't enter unless you're going to share with me! ;) I can't wait until I know for sure Faith's c-diff is gone (I'm pretty sure it is, but they won't re-test until her course of vanco is done) so I can get her back in cloth! Her butt can't wait either, I had to switch to "natural" disposable diapers because she's breaking out in a hive-like rash :( Noah had the same thing with disposables, which is what led me to cloth in the first place.
Dave will be here tonight, and I really will come back and post some more!

2009-04-29T19:22:00.001-06:00

2009-04-23T20:08:00.000-06:00

Transplant?!

2009-04-23T19:29:00.004-06:00

Thursday, April 23
One month ago tonight, I took Faith (and way too much stuff!) and got on a plane from Denver to Boston. I was afraid, but I knew I was doing the right thing, and I was excited to get her on Omegaven and start things moving in the right direction. One month ago tomorrow, Faith was started on Omegaven.
Faith had her weekly labs drawn today after her CAIR clinic appointment. Dr. Puder is out of town, so I figured I would probably call Danielle or Alexis tomorrow and ask about them. A little while ago, my phone rang and it was a number I didn't recognize. I answered, and it was Dr. Puder, calling to talk about Faith's labs (have I mentioned lately how much I love him?).
He started off by telling me that her white blood cell count is normal, her hematocrit went from 25 last week to 30 this week (yay iron!), her platelets went way up (a good thing), her triglycerides are normal, and her CRP (an indicator of inflammation/infection) is normal. Then he said, "Her bilirubins are at a level where you can go home." At that point, I went into shock mode, I was stunned! Her total bilirubin, which last week was 7.1, this week is 3.5! And her direct bilirubin (4.6 last week) is 2.0!!! NORMAL levels for bilirubin is anywhere from 0.3-1.2 for total, and 0.0-0.4 for direct, so we have a little bit to go to be able to say she's in a normal range (she's actually NEVER been in the normal range in her whole life), but 2.0 is AWESOME!
Other good news from today- she doesn't need her blood pressure meds anymore, she gets to nurse 5 times a day now, and we are going to start increasing her feeds by 2 mL every other day.
I am SO thankful that we have not had to go down the transplant road! I can't wait to get back to Colorado and show her to the doctors who thought we should take her to Pittsburgh to be put on the transplant list! And I can't wait for all of her nurses at the hospital in Denver to see how great she is doing now!
I really AM going to get some pictures posted tonight!

Updates and pictures

2009-04-22T09:07:00.003-06:00

Wednesday, April 22
Well, it's been a week again since my last real update. Sorry! Where to start...
Faith's first appointment with the CAIR clinic a couple of weeks ago was a little overwhelming. I had been told to expect that, so I wasn't surprised, but I'm not sure I could have really been prepared for it, either. I'm sure it was extra overwhelming for Dave, who was meeting everyone there for the first time...
The nutritionist made mention of Faith's age now and that we could start thinking about introducing solids, but I told her I don't think Faith is ready yet and I intend to put it off for awhile still. While I don't usually live by what the American Academy of Pediatrics guidelines say, I do agree with them when it comes to introducing solid foods, and they have changed their guidelines to recommend exclusive breastfeeding for the first 6 months. There also are the recommendations based on development, like that the baby should be able to support and lift its head and sit up supported, neither of which Faith can do yet. She's getting there on head control, but I think it'll be awhile for the sitting, so we won't be thinking about solids for a couple of months, probably.
The nutritionist also asked about Faith's oral eating, so I told her what I had been doing with the bottles, and she thought it was great that Faith was tolerating it. I told her I had breastfed her the one time, but was worried because I didn't know if she was getting too much... but she thought it would be better to just breastfeed and not do bottles at all! She talked the docs into it, so they decided that I can turn Faith's g-tube feeds off for an hour at a time, four times a day, and breastfeed her as much as she wants! She is doing great, but still dependant on the nipple shield, which I hate. Anyone who has advice on how to transition her away from that, please let me know!!
She also got decreased to 18 hours on TPN. Still the same volume, but 2 extra hours free, so now she has 6 hours off each day. I try to breastfeed her at least once or twice during those 6 hours, so that I have a little time every day where she is cordless. I love how it feels to hold her without anything attached!
We started giving her an iron supplement through her g-tube, since she is pretty anemic. We should find out with this week's labs if it is working. She seems to be tolerating it ok, it hasn't made her throw up that we've noticed. She did throw up three days in a row last week, with green throw-up on Friday, which was pretty nerve-wracking (green throw-up is never good!). She only did it one time though, so they said not to worry too much about it. And she hasn't thrown up since then, so I think it was a fluke.
I already talked about her appointment last week, where her bili numbers were so much better. She also had GREAT weight gain, from about 4.8 kilo's (a little over 10 1/2 lbs) to 5.0 kilo's (11 lbs)! It's still not enough to land her on the growth chart, but it's good news, and I can't wait to see how she does this week, with increasing her time off TPN and taking those breaks from her continuous feeds to breastfeed... I've got her continuous feeds at 17 mL/hr now, and she seems to be doing great, so I'll probably try to bump her to 18 in the next couple of days.
We had a great visit with Dave, the boys, and my mom. They left early Monday morning to go home. Faith and I are taking a couple of "down" days now to recuperate- neither one of us is used to doing as much as we did in the past 2 weeks! We didn't end up going to the circus, but we did go to the aquarium... We got a pass from the library on Hanscom AFB that got us in for $8/each, and I'm glad we did, because we all left pretty disappointed. I think it's just because we've all been to the aquarium in Chicago, but none of us thought this one was anything special, and we didn't think it was very handicap/stroller accessible, either.
Speaking of things not being accessible- I emailed a complaint to the director of the Green Line of the T here the other day. Probably at least 5 times in the second week that everyone was here, we had to carry the strollers up the stairs to get on the train, because there was not a car that didn't have stairs. My mom's not even supposed to do stairs, let alone hold the stroller so we can get it up. Thank goodness she and Dave were there, when it is just Faith and I we won't be able to get on the train at all if it doesn't have accessible cars. And then, in order to get to the aquarium on the train, you have to transfer from the Green Line to the Blue Line. The station where you have to transfer has no elevators! You have to go down a level to change trains, so we had to carry the strollers down the stairs (and it was a big flight of stairs). I still haven't heard anything back from them... but depending what I do hear (if anything) I might be contacting the ADA on that stuff too.
Let's see, what else...
Faith is doing great, you can hardly tell she's jaundiced anymore. She's alert and attentive and loves to play with toys, she recently discovered her hands and will stare at them throughout the day... she's fascinated by hands in general and will grab your hands if you put them near her and stare at them. I think she's getting another tooth finally, she's been chewing on anything she can get to her mouth (mostly her shirt, blankets, and other fabric stuff). She's bitten me a couple of times nursing, which is not cool and hurts even through the nipple shield.
We have our next appointment at the CAIR clinic tomorrow afternoon, can't wait to see how much she weighs and what her bili numbers will be this week!
(I will come back and add pictures later!)

Hey Papa...

2009-04-15T10:49:00.004-06:00

Public Service Announcement:

If you are offended by the three-letter word that is a synonym for "donkey", don't look at this picture.

This one's for you! :)

Months ago, when Faith was first born and being such a fighter through so many hard things, my dad was having a discussion with a coworker about Faith, and they decided she was going to be an "ass-kickin' princess". My dad said something about making himself a shirt with a picture of Faith on it, that would say "Papa's ass-kickin' princess". So, I made her this shirt, just for him :)

And, just for color-change comparison- that picture was taken today, and this picture was taken 6 days ago!

Hooray for fish!!

2009-04-15T10:09:00.002-06:00

Wednesday, April 15
WOW... Faith had an appointment with Dr. Puder this morning. The last few weeks Faith's bili numbers have been higher than they were when we got here. Her bloodwork from Thursday's appointment at the CAIR clinic came back with her total bilirubin at 10.8 and direct at 7.2, which was the spike we expected. This week though, we noticed that she is looking more and more pink, so we were excited to find out what her numbers would be this week.
So this morning, they drew her blood (from her line this time, since they had to poke her three times last week to do the peripheral draw, so we're going to alternate instead of torturing her every week). Dave and I went and got breakfast in the cafeteria while we waited for the labs to come back, and then they called us to come back to talk about them.
We got to Dr. Puder's office and the first thing he said was "Her direct is 4.6." It didn't even register with me, I thought he was talking to Danielle or Alexis, since they were in the office too... then I saw their excitement and I realized he was talking to me! Her TOTAL bilirubin this week is less than her direct was last week!!! Her total is at 7.1, and her direct is 4.6. To put it in perspective, we can go home when her direct gets to 2.0! He estimated probably another 2-3 weeks for that. Then we may still be here for a bit waiting for the Cisapride, if Dr. Duggan still thinks it's necessary. But then we can go home, and just come back every 2 months for follow-ups!
I have WAY more to update, but I've been really busy since Dave, my mom, and the boys are visiting. I will do that as soon as I can! Oh, and at her appointment last Thursday, they said I can nurse her 4 times a day! After almost 2 1/2 months of not nursing at all, she is back at it and doing great! :) Her continuous feeds are at 16 (they were 13 when we got here, we are increasing very slowly as she tolerates), she is off TPN now for 6 hours every day, and she is gaining weight well! It's all very exciting news and HUGE steps in the right direction!!
I will do a picture post in the next couple of days to show off our pretty pink girl :)

2009-04-08T22:25:00.002-06:00

Wednesday, March 8
Today was a very busy day. Faith and I took the train for the first time and met Dave, my mom, and the boys at the station where the train closest to them meets up with the train by us (Park St.). It was much easier than I expected, and I foresee many train rides in our future here in Boston! Faith and I got there first, so we went up to ground level to wait. The station is right below Boston Common, so we got to see that. Unfortunately, Faith's not a big fan of wind, so we didn't stay out long, and ducked into a Dunkin' Donuts for a snack to wait. I think when the weather warms up more, we'll be returning for walks.
We did get an awesome new accessory this week that has made life much more pleasant! It's called a Peekaru, and its inventor, Melissa, who I know from CAP (a local to Denver online group) generously sent us one (she sent us an awesome new carrier too!). I have a feeling I will be handing out a LOT of her business cards, as every time I wear it, at least one person asks me where I got it! I don't know how I lived without it... Oh wait, yeah I do- I buttoned my coat around both of us, and now have buttons to sew back on! Everyone who uses a baby carrier when it's cold out needs one of these!
Anyway, I'm so glad they were all able to come out. Noah and I have never really been apart for more than a couple of days, so he's been acting out more and I have missed him so much. It is so nice to be able to spend time with him and with Dave, my mom, and Nathan. We went to the Children's Museum and spent a couple of hours letting the boys run and play there. We'll definitely be back, since we get in for free with our military ID's, and it was really easy to get there on the train. We also saw the circus tent while walking trying to find somewhere to eat, I think we'll take the boys there, too. It's the same circus that the clown doctors at the hospital are from, and it's actually a non-profit that has a lot of neat community outreach programs. We're looking forward to enjoying all of the local attractions. Hopefully the weather will look at the calendar and see that in fact, it IS spring, and start being a little better for us!
Unfortunately, we thought they would be able to stay on the air force base while they are out here, as that's what we were led to believe when we initially called to ask about it, but now they found out that they will have to renew their reservation every single day, and if someone else needs a room, they will lose their room. So pretty much, every day they could potentially find out they don't have anywhere to stay. We are trying to figure out another arrangement, but it's hard. They're not allowed to stay with Faith and I (and honestly couldn't fit if they wanted to!), and we were really counting on the AFB since it is so affordable, about $40/night. Instead it seems that we may be paying almost 3x as much for them to stay in a hotel, so we may have to dramatically shorten the length of their visit :-( I hope we can figure something out, it sure would be depressing to have them come out, only for them to have to go home again right away because we can't afford for them to stay!
In other news...
Faith's C-diff isn't gone... in fact it's back full force, so she restarted her antibiotic for it. I won't go into details about how I knew it wasn't better, but I will say the guy at the lab when I took the sample in for them to test said something about how they didn't have orders for urine, if that gives you a clue...
We had a nurse out last night to watch me prep Faith's TPN and get her hooked up. I was having issues with air backing into the tubing as I went to hook her after priming (I forgot to clamp the Y!), and then with blood backing up into the tubing after I hooked her up. The first time the blood backed into the tubing, I freaked out and didn't know what to do... it was Sunday night so there was no one for me to call, and I ended up calling Abby Brogan, Ellie's mom, hoping that she'd know what to do since she has a couple of years' worth of experience with this stuff... she calmed me down and suggested I call Dr. Puder and the homecare company. So I called Dr. Puder (well, had him paged). He called me back within 5 minutes of me having him paged (have I mentioned how awesome he is?) and calmed me down even more. He told me it wasn't a big deal as long as I didn't see any clots. I think he may have been slightly concerned since Faith was screaming in the background like I cut her arm off... In my flustered state I dropped every single one of her pacifiers and was in the process of sterilizing them in the bottle warmer (I love that thing!) and she was NOT happy about it. He asked a couple of times if she was ok, and if I was sure everything else was ok... I think I got him reassured though. Finally I called the homecare company and asked what the heck was going on, and why it was happening, and the nurse on the phone said I needed backcheck valves and that she'd send some out the next day. Well, I didn't get any... and it happened again a second night. The second time it happened, I was just plain mad, and called and asked again what the heck was going on. The nurse the second night said she wasn't sure but was able to talk me through it to get Faith hooked up, and got the ball rolling to get the nurse out last night. The nurse last night watched and said I'm doing everything right (since I remembered to clamp the Y last night) and I added a backcheck valve to the tubing right at the end before where it hooks up to her, so no more bleeding back! It was good to have someone watch and reassure me that I'm doing everything right. The only bad thing was, as I pushed the spike into the Omegaven bottle, I pinched my finger on the metal rim of the bottle and cut it, and now I have a big nasty blood blister there.
We had a bit of an "Oh NO!" moment as we were changing Faith's Broviac dressing. The way they do it here is quite the process- there's a fancy little sterile kit with everything you need. The whole process is sterile, with masks, sterile gloves for me, the whole deal. We got the old dressing off, then I put the sterile gloves on and could no longer touch anything without being contaminated. I got her site cleaned with the chloraprep, and was standing there waiting for it to dry. The nurse was holding Faith's line up to let it dry all the way (holding by the clamp, which is ok, since it's not important for that part to be sterile) and Dave was standing at the end of the bed holding the sterile kit. The next thing we knew, the lights went out! I think I said something along the lines of "Oh shoot, what do we do now?!" It was absolutely one of the worst possible moments the lights could ever go out. Luckily, they came right back on, and we hurried and finished before they could go out again.
I've been gradually increasing Faith's feeds. On Saturday (the day after we were released from the hospital) I increased her to 15 mL/hr, then today I increased her to 16 mL/hr, and she's tolerating it! I also latched her on and let her breastfeed for a little while Saturday night, although I'm not sure how much she got... I did see her swallow though so I know she got something. She tolerated that well, so the next day I gave her some milk in a bottle (didn't measure because I wasn't really thinking about it!) and she kept that down too, so then the next day I measured out 10 mL and gave her that in a bottle, and she drank it all and kept it down! She did get worse reflux afterwards, and I thought she was going to lose it a couple of times, so I think next time I try, I'll do 5 mL a few times a day, instead.
My hope is, if I could get her to take 5 mL maybe 4 or 5 times a day, that would add an extra 20 or 25 mL to her daily intake, and maybe it would improve her weight gain a little. And if she starts gaining weight better, we'll be able to start knocking hours off of how long she's on the TPN every day, which means more time when she ONLY has her feed running, and she's a lot more portable. If I get her to take 5 mL without increasing her reflux and thus her discomfort, then I might try 7 mL and see what happens, and if she does well with 7 mL, then I might try 10 mL again. Even 7 mL 4-5 times a day would add 28-35 mL to her daily intake, which at her current continuous rate would be like adding an extra 2 hours to the day. At 10 mL it would be like adding 2.5-3 hours to the day. Every little bit will help, especially since she's never gained weight very well for more than like a week at a time, so she has some catching up to do. And maybe when she gets on the Cisapride, her stomach will work a little better, and she'll be able to tolerate more for feeds.
I haven't really gotten to talk to her team about specifics for plans in terms of increasing her feeds or doing oral feeds. I did get the ok from both Dr. Duggan and Dr. Puder on trying oral feeds, which is why I figured it was ok to do it. I'd like to aim for at least 4 bottles a day, starting at 5 mL and working up depending on how she tolerates it, and I'd like to try to nurse her at least once a day. Dr. Puder pretty much told me to increase her continuous feeds whenever I feel like it's time and just go by her signs in terms of tolerance. I've seen her not tolerate things enough times now that I know exactly what to look for, and I'll know right away if she does stop tolerating feeds, so I can back her down to where she's ok again. I like having the control over how her feeds progress. I really kind of always have had control, since I was ok telling the doctors when it was time to stop, but it's nice to be able to do it on my own without having to fight with doctors.
We have our first appointment with the CAIR clinic tomorrow, I look forward to seeing where we go from here! Faith's last blood draws before we left the hospital were her baseline Cisapride labs, and Dr. Puder told me the other night that her direct bilirubin was down to 7.0... I'm not holding my breath to believe it's already coming down from the Omegaven, since most of the time it takes a couple of weeks to really even spike... but it sure would be nice! She'll have her next labs drawn after our appointment tomorrow, and we should know the results pretty quickly to see what her numbers are really doing, so stay tuned for that! It is definitely exciting to see her getting better, her color is better (although still yellow) and she has started to have a lot more awake time during the day. Thankfully, she's still sleeping through the night! Hopefully I can get back into that routine soon, too, and get out of this insomniac routine I've fallen into lately! I am falling asleep, so I should go now! I'll try to get on and post more recent pictures sometime tomorrow!

2009-04-06T23:01:00.002-06:00

Monday, April 6
Well, technically it's Tuesday now. I'm sorry for not posting more updates. This has all been much more difficult and time consuming than I anticipated! Faith's med schedule isn't as condensed now as it was when we left Denver, so she has meds a lot more often, 7 different times throughout the day. And then I have to take her off the Omegaven in the morning, and then off the TPN in the afternoon, and then mix and hook up the TPN and Omegaven at night (and that's not working out as easily as it was at home, either!). Throw in some pumping (not nearly as much as I should), a shower, and maybe one or two meals, and there's not a whole lot of time left!
Faith had an upper endoscopy on Wednesday, trip #7 to the OR. I almost wonder if the surgical nurses think it's weird that I'm not nervous before she goes to the OR anymore... The doctor also placed a manometry catheter to do that test on Thursday. Dr. Rodriguez, the GI who did the endoscopy, said that visually everything looks normal. There wasn't any visual damage to her esophagus from her reflux, which is good. He did say her pylorus (the opening from her stomach to her intestine) is a little tilted or something, but he didn't think that was something that should be causing her issues. They took some biopsies, I haven't heard anything yet about how those looked.
Thursday's manometry test was a measure in patience. Well, really all week was, as every day when I woke up, I heard something different about when we'd be getting out... it seemed like every day they said it would be that day, and then an hour later they'd tell me it would be the next day. But anyway, Thursday morning they started the test at 6:30. I stayed at Devon Nicole the night before (I started staying there Tuesday night, since I had no real idea when we'd be discharged, and figured it would be better to get the room set up- and CLEAN- before taking Faith there), so I had to get up really early to be there. When I got there, she was hooked up to the machine and it was running, but there was no one in the room. The end of the catheter down her nose looked like an octopus, with 8 tubes coming together into the one that went into her. The 8 tubes were hooked up to this machine, and the machine had a computer screen with 8 lines on it. Each line corresponded to a different place in her digestive tract. No one was there to tell me which lines were what, but I figured it out anyway. For the most part, the lines were pretty straight, but then she would swallow, and the first three lines would have some action: first the top line, then the second one, and then the third. I figured that was probably good. The other 5 lines stayed flat. I figured that was probably bad. Then later, Dr. Rodriguez came in and explained it all to me. I was right about the first 3 lines, and I was right in my assumption that it was bad for the other lines to be flat. There was water running into the catheter, and that's how it measured what was happening. He explained that they would also feed her and give her some motility meds, Erythromycin and Octreotide, while the catheter was still in, to see what would happen. I spoke up then and said if they fed her without giving her motility meds first, she would throw up, and they would probably lose their catheter... After I said the same thing to three different people, they finally listened to me, and decided to do the meds before feeding her. (I have seen her vomit up way too many NJ tubes to believe that she wouldn't do the same with a manometry catheter!) They gave her some IV Erythromycin, and we started to see a little action in her intestine (it was an antro-duodenal manometry test). Then she threw up three times. By that point, the test had put as much volume of water into her as she normally takes in a day in feeds. Next, they gave her a shot of Octreotide. I had heard of it being used as motility, but never really looked at it more closely... but I remembered it from when Faith was on it for her chylothorax. The Octreotide didn't seem to do that much for her. Next they fed her. A little action in the intestine... then it was time for her regular Erythromycin dose. That was interesting. I watched the monitor closely, anxious to see if this drug we're giving her actually does anything. Sure enough, about 10 minutes after we gave it to her, there was a little action in the intestine! You may notice I never mentioned any action in her stomach... that's because there was none, other than when she threw up. This means she has a new diagnosis- gastroparesis. If you read about it, it makes some things make a lot more sense, like why when she was eating, it was hard to get her to keep eating and get to the amounts they wanted her to be taking because she acted full, and why when she did throw up, it was never right after a feeding, but actually was usually just a little bit before a feeding. I honestly have NO idea how she can eat to her stomach when it's not working...
Well, I am falling asleep since it's 2 AM. I will post the rest of the update later!

Sorry!

2009-04-05T11:56:00.002-06:00

Sunday, April 5
Sorry to everyone for the lack of updates! We are out of the hospital, and I have spent the past couple of days just trying to get into a bit of a routine and get things organized in our room here at Devon Nicole... I really need to take advantage of the fact that Faith is sleeping right now and take a nap, and then we will be going for a walk to find Whole Foods because my milk supply needs some help and that's the only place I know for sure I can get what I need. On the bright side, it is a pretty nice day out for a walk.
I WILL post a longer post and some pictures, probably tonight!

5% day

2009-04-03T09:57:00.002-06:00

Friday, March 3
Just wanted to post quickly and remind everyone about Denver Diaper Co's 5% day today! Thanks again to Amy for sponsoring us!! Take a look at her store for awesome cloth diapers and lots of other things, I'm sure you'll find something you need :)

more update coming later- we are getting out today!

Omegaven magic!

2009-03-31T18:35:00.004-06:00

Monday, March 31 evening

Kathy Gura, the Omegaven pharmacist, delivered a whole box of Omegaven to our room today. Makes it seem a lot more real, for some reason... maybe because it's in the bottles instead of a syringe like it's been (which is the same as the regular old lipids come in), maybe it's because now I know she'll be on it, even when we're not in the hospital anymore... either way, it's pretty cool :) Speaking of Omegaven- I was looking at Faith's feet today, thinking how cute they are and how I need to take one of those artsy black & white pictures of them like you see in frames. A little while later, I looked at them again, and noticed something. Look at this picture and tell me what I noticed: (hint- look at her foot in comparison to my hand)

That's right! Her feet are turning PINK!! It makes me tear up to look at the picture! I remember reading on Max's blog that the yellow goes away from the feet up... Tomorrow is day 7 on Omegaven.

delay, part 2

2009-03-31T10:49:00.002-06:00

Tuesday, March 31
We're not getting out tomorrow, either. Dr. Duggan wants to get an endoscopy and manometry test done, and we have to be inpatient for that. Apparently I guess those will be tomorrow, so maybe Thursday or Friday we'll get out? I am going to go to the Devon Nicole House this afternoon anyway and get checked in, I think it will be easier to take stuff over in little bits and get it organized than to take a whole truckload at once. Ok, we don't have THAT much stuff... but still, it's a lot, and will probably take 3 or 4 trips walking over there.
Abby Brogan, Ellie's mom, is coming by in a little bit to visit. I'm excited to meet her! :)

2009-03-30T18:27:00.003-06:00

delay...

2009-03-30T17:57:00.000-06:00

Monday, March 30 evening
We're not getting out until Wednesday. They're trying to get private-duty nursing arranged, so they won't let us out until the insurance company approves it and it's all set up. I don't even know if I really want/need it, but I figure I'll give it a try and see what I think, and if I think I'm ok without them, I'll just let them know I don't need them anymore. The only time I think I would need someone to help is when I'm prepping Faith's TPN before I hook her up, and maybe at night to help make sure her feed bag stays full.
Speaking of feeds... We increased Faith's rate to 14 mL/hr today. I think I'm going to ask about maybe introducing a bottle or two during the day, too... Maybe if she got a bottle once or twice, she could have a little time unhooked from the feeding pump, and be completely cordless for a short time every day. It's amazing how good it feels to hold a cordless baby, when you're so used to some kind of tubes all the time.
We got our new feeding pump over the weekend, and the lady came to teach me how it works today. It's a Zevex Infinity, and it is about 500 times nicer than the Kangaroo we had. Even the bags the milk goes in are better. On the Kangaroo bag, the tube coming out of the bottom of the bag came straight out, so you had to sort of loop it to get the bag to go down into the pocket for it in the backpack (which the backpack was actually made for an Infinity, not a Kangaroo, so it really didn't work anyway). The darn thing was always alarming for one reason or another, a lot of times relating to this stupid tube from the bag. On the Infinity bags, the tube coming out the bottom of the bag is actually almost flat/parallel to the bottom of the bag. So putting it into the pocket in the backpack is a breeze, with no worries of kinking tubes and no looping to do.
Also, the lady who came to teach me the pump showed me how to get all the air out of the bag, which makes a HUGE difference (and was one of the other reasons our other pump alarmed all the time) and means there won't be a zillion air big old bubbles in the tube going to Faith's stomach, which means she'll be about a million times more comfortable. They also brought a new backpack with the pump, even though we already had one from the old pump, but it's ok because it has some color to it so it's cuter :) I'm still on the look-out for a bag that can hold her TPN and feed pumps, and both bags, and maybe some of her other stuff too, in an effort to reduce how much stuff I'll actually have to carry. But, we'll be down to just 2 pumps during the day when we're out of here, since the Omegaven runs over 12 hours at night, so it will be a little lighter to carry, at least, even if I do end up just hooking the feed bag to the TPN bag with carabiners, like I was before. A backpack would be nice though, and more comfortable than the 1" webbing the TPN bag strap is made from... I may have to see what I can find next time I'm at Target.
I went to Target today. Heather gave me a ride over her lunch. I'm pretty sure drivers here must not have to take driver's ed before they get licenses. Or maybe it's just hard for them to drive in their rubber rain boots...

labs

2009-03-30T07:43:00.002-06:00

Monday, March 30

Faith's bili is up. When we got here, direct was 6.7 (up from 5.8 at her last labs in Denver) and total was 9.9 (up from 8.9 in Denver). This week, direct is 8.0, total is 11.8. This is actually a good thing. Dr. Puder said he gets nervous when the numbers don't go up. When you start Omegaven, the numbers first spike, and then start going down, usually really fast. Her AST/ALT have gone up to match, but should also go down as her bili's do. The exception, Dr. Puder says, is their other Omegaven baby in Denver, Max, whose AST/ALT have stayed elevated...
As I looked at the lab printout Dr. Puder gave me, I had a little freak-out minute when I saw a hand-written note at the end that says "has MRSA +". I was like, "WHAT?!" and thinking, when this kid does infection, she really goes all out with the ones that take the big guns to treat. Thankfully, her preliminary cultures (from her incision) came back positive, but the final result was negative.
In unrelated news, Church at Calvary Chapel last night was great. It was very small, but I guess when you're looking to make connections, small is good. I talked to the pastor and his wife, who also have a daughter named Faith, who had a very large brain tumor and was treated at Children's. She is better now, and just as our Faith has done for us, she was a great strenghtener of their faith and trust in God. They have a women's Bible study on Tuesday nights right next door to the hospital (which is only a couple of blocks from DNH) that I think I will check out, and I think I will continue to go to their Sunday night worship. You can never have too much worship...

icing on the cake

2009-03-29T21:02:00.011-06:00

Just in case 40 pictures isn't enough to satisfy you, here are three more videos :)

The cutest baby in the world

2009-03-29T19:17:00.011-06:00

I am WAY behind on posting pictures!! Here we go- from leaving the hospital in Denver until now :-)

Our last wagon-load of stuff. We had four of these, plus one giant suitcase...Goodbye NICU Room 60!Getting in the car... it's starting to get more real! (Too bad we're looking at different cameras...)"I don't like the car!""Maybe it's not so bad...""Zzzzzzz....."Faith got to go home on the first day of Spring, complete with pretty crocuses blooming!"Where are we?"The cutest big brother in the world is happy baby sister finally gets to come home!"Mom, I don't ever want to do that again!"Going into our house for the first time!In case you were wondering what your house might look like if you moved in, then moved to be near the hospital less than a month later, then lived at the hospital for four months after your baby was born, and suddenly had to pack to go to Boston for an indefinite amount of time, feel free to look at the background of this picture...Faith's first time in her own room!Showing off her pretty outfit again :)

Modeling the belly and Broviac bands I made her to keep her tubes covered and away from curious fingers!

First time sleeping in her own bed!

"I think I might like this place!"

The cutest baby in the world...

... and the cutest big brother in the world!

This is my OCD organization of TPN supplies... each bag has one day's worth of one part of the process (tubing, additives and needles, flushes and hep-locks)

Meds, dressing change stuff, and med schedule. It's amazing how normal this stuff can look when it's mixed in with regular baby stuff...

Her coat's still a little big...

Daddy and Faith at the airport

This is all the stuff I actually carried on or gate-checked! (I had a big old rolling duffel in addition to this stuff!)

The first thing the nurse said to me when she saw her feeding tube- "Why did they do it like that?" The first thing she said when she saw her Broviac dressing- "They use a BAND-AID?! I am in AWE!" Yes, they do use a band-aid, and little miss Faith has been infection-free with her line for all 132 days she's had a one!

"Mommy, I'm on Omegaven!"

Miracle #115

"Must you always flash that thing at me?"

"Seriously, Chloe (that's the monkey's name now), it's like she's never seen a cute baby before!"

Our private room. I find it fitting that Faith is getting her fish oil magic in a salmon-colored room, with a picture of mountains on the wall :)

Sleeping in her really big crib

She's getting awesome at maneuvering the pacifier to and from her mouth

Some clown doctors tried to entertain Faith on Friday

"I know those weren't real doctors, Mom..."

"You mean, I get to leave my room and I didn't even have to pull any tubes out?!"

Faith has become quite a fan of chatting with Daddy and Mama on the phone lately...

We switched to her fish pacifier today. We're gonna start showing the fish some love, and maybe they'll start working their magic!

Shirt idea

2009-03-29T15:06:00.003-06:00

I want Faith to have a shirt that says, "I'm famous in Switzerland." Seriously, I still for the life of me can't figure out how people in three different places in Switzerland found us and are reading about us, but I see at least one Swiss reader on our map just about every day. Uster, Andwil, and St. Gallen are Faith's Swiss fanclub. And I think that shirt would be great. I want her to have one with something catchy about fish, too, any suggestions?

Seriously?!

2009-03-29T14:25:00.006-06:00

Sunday, March 29, afternoon
I just stepped out for a little bit to go get a coffee and some lunch, like I had said I might in that last post. While I was wandering around the Longwood Galleria trying to figure out what to eat, I was on the phone with Dave. I told him I had to go, so I could order some food, and the next thing I hear after I hang up is a man's voice saying, "I've been trying to find you." Freaked the crap out of me, especially since I don't know anyone here. I turn to look, and it's Dr. Puder! Seriously?! I go from having to chase down a doctor in Denver to tell me what's going on, and here, the doctor comes to find me?? I didn't expect to see him until tomorrow. We never saw doctors on the weekends in Denver, and he was out of town this weekend. I guess he got back this afternoon and stopped by the hospital to check on his patients, and got to Faith's room right after I had left, so the nurse told him where she thought I went, and he came to find me! I wanted to burst into tears and give him a big huge hug right on the spot, but I controlled myself.
It turns out, all he wanted was to check in with me and see how I thought Faith was doing. He let me know he'd checked in on her, and asked if she was acting any differently, or if I'd noticed any color changes yet. I let him know that she's still as sleepy as ever, and that she's not as smiley as she had been, but that I figure it's just because she's surrounded by unfamiliar people and misses all her favorite nurses in Denver. She perks up and pays attention any time someone comes in the room, I think she's hoping one of these times it'll be someone she knows. I still think I need to get a cardboard cut-out of Jan to stand by her bed, then her smiles will come back!
Anyway, that's that. Totally surprised me and freaked me out. Oh, and I might go to church again in a couple of hours; I saw a sign for a Calvary Chapel here, right next door to the hospital. I really enjoyed our time at Calvary Aurora, so I thought I'd check it out. You can never have too many connections...

no news...

2009-03-29T12:02:00.003-06:00

Sunday, March 29
Nothing new to report today. We didn't end up switching rooms, which is probably a good thing, because from what I hear we have the best room on the floor. Faith has had a really low-key weekend. I'm watching and waiting for the Omegaven to kick in, and for her to be awake more. She is still sleeping most of every day.
We're working on getting her 4 hours off the TPN every day to be during the daytime, so that when she is outpatient, we can go and do things during the day and only have her feeding pump/bag to take along. Although, the more I think about it, the more I think it might be easier to just keep her on the schedule she's on, since right now she's getting hooked up in the evening hours, when we'd definitely be back from whatever we might choose to do... We might end up unhooking her then when we were out, but the unhooking is the easy part, and I always carry a ziplock baggy with everything I'd need for that in the diaper bag, just in case. So, I think we will keep her "free time" from 3-7, or maybe even work on pushing it to 4-8, just to be sure we can go and do things, and not have to rush back to get her hooked back up to TPN.
From everything I've heard, the best way to do the Omegaven is over 12 hours at night, since it's a pain in the butt and has to stay upright on an IV pole. I hope they give us a pole for that, because the pole that came with our feeding stuff sucks! I'm assuming we'll get a new pump to replace the lipids pump we have, hopefully one with a pole clamp, because our TPN and lipids pumps don't have clamps, so I have to keep them in the bag in her bed with her.
I ventured out of the hospital for the first time today since Tuesday. A family from the Vineyard church here picked me up and gave me a ride with them to church. It was nice, and not that different from our church at home. And she invited me to join her at a moms' group, which I may take her up on. You can never have too many connections.
I think I may venture out again in a little while, this time to get a coffee and some non-hospital food. I paid attention and saw the Starbuck's across the street as we were coming back, and I know there's a big food court right around here somewhere, so I'll try to find that, too. Directions are so impossible here, I get so turned around. None of the streets are straight, and there aren't any mountains to tell me which direction I'm actually going! I think we'll be doing a lot of walking while we're here though, so I figure I might as well start now.
Oh, on a side note- it was rainy here this morning. Never have I seen so many people actually wearing rubber rain boots. (It really doesn't rain at home, and when it does, 90% of the time it's a fast-moving storm, so it will rain really hard and heavy for maybe 20 minutes, but then it stops. No one would have a use for rain boots at home.)

Video!!

2009-03-28T19:54:00.003-06:00

another room change...

2009-03-28T13:25:00.003-06:00

Saturday, March 28, afternoon
Well, we're going to be switching rooms again... another private room on the other end of the hall. I'll do a picture post when we get settled in there.

a big thank-you

2009-03-28T09:30:00.005-06:00

I wanted to post a huge thank-you to Amy from Denver Diaper Co. Every month, she runs a fund-raiser on the first Friday, called 5% Day. On that day, she gives 5% of every sale to a charity or family that she chooses ahead of time, and her customers get 5% off, or they can choose to donate their 5%, making the total donation 10%.
This month, Amy chose our family to be the recipients of the donations. She had me write up a little guest-post on the DDC blog, giving a short summary of everything we've been through so far. It was hard to shorten it down, because there is so much to tell, but here is the blog with my post. http://denverdiaperco.com/blog/
We really appreciate any fund-raising help we can get. While our insurance does help a lot in paying for Faith's medical care, we still have a lot of medical bills from pregnancy stuff and actually having her, and our deductible and co-pays for all of her stuff. And the cost of supporting essentially two households is outrageous and really hard to do, especially now that Dave lost his job and is just working part-time. We'll have to pay for our room at the Devon Nicole House, as well as groceries and other general needs while we're there. I'll have to pay for public transportation to get around in Boston, and Dave still has the car at home to put gas into, along with our rent, utilities, and groceries for them at home. And it's a long, fairly expensive trip for Dave and my mom to bring the boys out to visit, since they'll have to stay over 3 nights on the way out. Luckily, my brother's house will be one of those nights, but that still makes 2 hotels, on top of gas and food to get out here, and lodging, food, gas, and parking once they are here. We have multiple flights to pay for, and when we do finally get to go home, we'll have to fly back out every 2 months for as long as Faith stays on Omegaven.
I'm not trying to make everyone feel bad for us, or give us money... I just wanted to say thanks again to Amy for sponsoring us with this fundraiser, and to Ashley for the pack & play, and to everyone else who has helped us along the way so far. Your love and generosity are greatly appreciated!!

the long update, for real!

2009-03-28T09:14:00.006-06:00

Saturday, March 28, morning
Get comfortable, this is going to be a long one!
We are settled in our new private room (room 42). No bathtub, but it's nice and big, with a large bathroom. I love that there are showers in the bathrooms, no more having to walk down the hall in my pajamas with crazy morning hair.
We met Erin (Blaise's mom) briefly the other day. I also met Dr. Duggan, Dr. Jaksic, Dr. Jennings, the central line lady, the CAIR nutrition lady, the OT, our case manager, and I'm sure others I'm forgetting. I am awful with names. I have a ton of business cards from everyone, not that I can match the card up to the person in most cases... Oh, and a couple of the surgery fellows came by the other night, one of whom knows Dr. Potter (lucky him!).
Faith had an upper GI/small bowel follow-through Thursday afternoon as the first diagnostic test to try and figure out what exactly is going on with her motility. Dr. Duggan also suggested a possible endoscopy, and maybe some small bowel manometry testing, where they'll put a manometry catheter in through her g-tube and it will tell them more about how her intestines actually work. I really hope we will be able to get to the bottom of things and really find out what's going on, and what needs to be done to get her gut working and get her eating like normal. Dr. Duggan and Dr. Puder are also talking more about trying Cisapride. They'd want to wait a bit, because the Omegaven is investigational, and they don't like to do two investigational drugs at once without knowing the first one isn't going to cause any issues, and then once we decide if we want to do it, they have to petition the FDA (Dr. Duggan said it's like a 15-page consent form!) and that takes a couple of weeks to a month. I need to read more about it and decide what I think, but I think it might be worth a try...
So. More details about the events of the past week...
Last Thursday Jan and I spent awhile on the phone with Coram (our homecare TPN company) trying to make it clear to them why Faith needed her TPN and pumps delivered to the hospital that night, instead of delivering it to our house the next day. To clarify- Faith is on TPN 20 hours a day. At that time, we hung her new bag at 10PM, and she came off at 6 PM. So, if they wouldn't have delivered it on Thursday, we would have had to stay at the hospital unitl 6 PM on Friday, when she would be disconnected from the hospital's TPN and pumps, and then we would've had to get home and get her new TPN made and hung to start at 10. Not ok, since we wanted out that morning.
So they delivered it Thursday night. I wish someone would've taken my picture when I opened that box, I'm sure the look on my face was priceless. Talk about overwhelmed... it made me completely question whether I could do any of it, and had me thinking a medical transport to Boston probably would have been a better choice. Not to mention the nurses at the hospital aren't familiar with homecare stuff, so Maree really didn't know anything about mixing the TPN or putting the tubing together, and no one came to the hospital to teach me any of it. So, we had to guess. I can cook and read a recipe, so I figured out the TPN mixing easily enough. When it came to the tubing, that was another story. They sent a little diagram of how it was supposed to look, but when we tried to go by that, we realized we were missing pieces. So Maree had to get some substitute pieces from the hospital's stuff and we had to figure out how to put it together our own way. It was interesting... but it worked.
Friday morning Faith had her carseat test, and Jan helped us get the last few things figured out. Finally around 10:30, everything was done, and we were ready to leave! Dave took one last wagon-load down (I think all together, we had 4 wagon-loads and one big suitcase of stuff that we'd accumulated there during our 4 month stay...) and tried to get it crammed into the car. We ended up having to leave one cooler of breastmilk at the hospital for him to pick up Monday night after dropping us at the airport, because there was just no way we could have fit it.
Our nurses were so fabulous, I miss all of them already (and so does Faith!). I made sure we got pictures of Faith with everyone, we only missed one nurse, Becky, because we got out on Friday and not Saturday. We will have to go back and visit some weekend though so we can get Faith's picture with her. Our primary team got us a great basket full of goodies and my favorite flowers (I don't think they knew they were my favorite flowers, but it was cool anyway!). If all of you nurses are reading this- don't forget to post comments!
Faith didn't think the outside was that great. She doesn't like wind, and she doesn't seem to be a big fan of the sunlight, either. We're going to have to work on that... Then it came to putting her in the car. Yeah, she didn't think that was real fun, either. But she calmed down fairly quickly once we started moving.
I read a lot about taking care of kids with feeding tubes and TPN before we went home. I talked to lots of parents online, asked a bunch of questions, and felt like I had a pretty good handle on it. Our home health nurse came by the house Friday afternoon and went over things with me, showed me the right way to put the tubing for her TPN together (well, as right as it could be, considering the company neglected to send two important pieces), and left saying she thought I had a good handle on everything, too. She was impressed that when she arrived, I was in the process of creating an organization system, separating the different pieces and parts into bags with one day's worth for each step in the TPN process.
Nowhere in there did anyone tell me that when you have a kid on tube feeds and TPN, and a bunch of different meds, you don't get to sleep. I had to prep her TPN, starting at about 9 PM, to be ready to hook her up at 10. She had a med at 10, and then another at midnight. Her feeds lasted 4 hours before I had to fill the bag up again. She had meds at 6 AM and 8 AM. So, if I timed everything right, I could get 4 solid hours of sleep from midnight to 4, then 2 more from 4-6, and 2 more from 6-8. At least, that's how it would be in a perfect world. In reality, I didn't get that much sleep. Her feed bag was empty at 3 instead of 4, then alarmed again at 5, then we had to get up at 6 for meds and a diaper change... I realized that the darn feed pump was alarming when the bag wasn't really empty, because the bag wasn't positioned good enough and it was getting air in the tubing. I now hate that feed pump, and have told our case manager here that I want to switch to the one everyone who's had them had recommended in the first place. The Apria person here is going to be bringing me a Zevex Infinity pump on Monday to trade for our awful Kangaroo.
Sunday we had a baby dedication and prayer for healing at church. Unfortunately I don't have any pictures to post, until the people who took them email them to me! Faith was beautiful in her dress and bonnet, though.
Monday I ran around like a chicken with its head cut off, just positive that I was going to forget something important and feeling like I wasn't even slightly ready for our trip. It all worked out though, and we actually got to the airport before the check-in counter was even open to get Dave's gate pass. The TSA agent was waiting for us at the counter, and practically held our hands through security. The whole process was very smooth and easy. I had so much stuff along! I took a huge rolling duffel that I checked, a rolling cooler full of frozen breast milk and extra TPN, a rolling computer/carry-on bag, her carseat (in a rolling bag), a stroller (worked well to carry everything!), my breast pump, a big fabric bag that had Faith's diaper bag and a bunch of other stuff in it, and my pillow with a couple of Faith's favorite things and her blanket in it. And Faith and her pumps/bags, of course. I wore her in a wrap.
When our flight got in on Tuesday, Heather, our ride to the hospital, was waiting for us. Fitting everything into her car was an adventure, but we got it all, and then she gave me a mini-tour on the way to the hospital.
We got to the hospital around 7 AM, but couldn't be admitted until noon. The lady at the info desk let me put a bunch of our extra stuff behind the desk, and told me how to get to the cafeteria to get some breakfast. I was so tired, when I sat down all I wanted to do was go to sleep. I needed to pump, so I went back to the info desk to ask if there was a place I could go to pump. The lady took me to a pumping room. Then I went back to the cafeteria and called my mom and told her how tired I was and how I really felt like I needed to get some sleep. Faith also needed to be plugged in, since her feeding pump battery was dying. I had found an outlet in the cafeteria, so Faith was plugged in, asleep in the stroller. My mom suggested checking out the Center for Families. They didn't open until 8, so when that time rolled around, I headed up to find it. I asked the lady there if she knew where I could go to sleep until it was time to be admitted, but she said I couldn't use any of their rooms, because I had Faith with me and babies weren't allowed. She suggested going to admissions and seeing if they would admit us early. So, I went down the hall to the admitting office. The lady there was super rude, just saying there was no one in the office to even ask about it, and then walking away. I made my way back to the cafeteria at that point, fighting tears the whole way. I sat back down on a bench, plugged Faith back in, and tried not to completely break down. Then I thought to call Stephanie, the social worker, and ask if she had any suggestions. She didn't answer, so I left a message, and she called back about 5 minutes later. She said they had a room at the Devon Nicole House where I could sleep for a couple of hours. She met us in the lobby, and took us to a shuttle that drove us over. I got to sleep for about an hour and a half, and it felt so good! Faith slept in the stroller the whole time.
Around 11:30, I woke up and got our things together, and walked back to the hospital. I could have had them get a shuttle, but I figured it would be good to walk, that way I'd know how long it takes when we're outpatient and have to go to clinic appointments. We went back up to admissions, did all the paperwork, and then headed up to 10 East to be admitted. The rest of the day is kind of a blur, I was so tired still. I remember Dr. Puder coming in and talking to me, along with his team, and then he said they'd come back the next day so I could get some rest.
Wednesday was another busy day, meeting all of the different doctors and talking about a plan. Everyone seems optimistic, although no one has dared to mention coming entirely off TPN or tube feeds. That will probably be awhile...
Thursday she had her upper GI, and the first thing the tech said was that her tube (that was supposedly in the lower part of her duodenum) was in her stomach. That was good news to me, because that meant we'd been feeding her to her stomach all along, or at least for awhile, since I don't remember when they last did an x-ray in Denver to confirm tube placement... when we had thought she couldn't tolerate feeds to her stomach. Thursday night the tube clogged, and nothing they tried could get it un-clogged.
Friday morning, Dr. Jennings came in and said he thought they could switch her tube out for a real GJ-tube. Then Dr. Puder came in a little while later, and he and I both agreed that if we'd been feeding to her stomach, and she was tolerating it, we should just keep feeding to her stomach, and just pull the Corpak tube out and use her g-tube. The other option he presented was to put an NJ tube down, but like I said, she was eating to her stomach anyway and doing just fine, so we decided not to do that. He told the nurse to have a resident come in and do it. Apparently when he left the room, some controversy erupted about whether the g-tube would even be functional anymore, and what should actually be done, so the next thing I knew, he came back in the room and took it out himself. The nurse hooked up the extension set to Faith's button, and it works just fine. They re-started her feeds at 6 mL's/hr (at that point she'd been NPO for almost a full day), and an hour later bumped her back up to 13 mL's/hr with no problems.
The one thing the upper GI did show was that Faith's reflux is still really bad. They didn't give her any barium by mouth, only through her tube, but they were able to see it reflux up into her esophagus. Unfortunately there's not a whole lot they can do for that, short of a Nissen fundoplication (which I had mentioned before awhile back, it's where they wrap the top of the stomach around the bottom of the esophagus). Dr. Puder does think that getting her motility going with the Cisapride will help though. Overall, it took about 10 hours for the barium to make it through this time, which is about half as long as it took last time, and a lot shorter than the time before that (in the beginning of January, when they did it on Saturday, and she had barium in her stomach still on Wednesday, and they never put barium in her stomach in the first place...).
So, she is gradually improving on her own. The thing is, without the Omegaven to save her liver, she wouldn't have had time to just gradually improve. But Dr. Puder said yesterday that forcing feeds on her doesn't help either, and can cause more problems in the long run. I wish Dr. Sandoval could sit down and learn from Dr. Puder, since he seemed to be the surgeon most open to other ideas in Denver... So many of the things they did in Denver are the old way of doing things, and there is reason to believe that there are much better ways. I wish everyone believed in what Omegaven does, so that no one would have to force feeds in a race against liver damage... All I can do is hope that when they see Faith get better, they might believe it actually works, since then they'd have her and Max as evidence... I'm not holding my breath though. It might be able to make a believer out of Sandoval, but I still doubt Partrick or Soden would believe in it... I heard Soden actually did a presentation about how it doesn't really work...
I heard there was a blizzard in Colorado the other day. Makes me glad I'm not there... winter is not my thing! It is still definitely winter here in Boston. I haven't really gone outside at all since Tuesday. It's not snowing or anything, but it's not nearly as warm here as it had been at home.
I am hoping to venture out tomorrow morning to try to go to church. There is a Vineyard here, the same kind of church we go to at home, and I hear it's not too hard to get to by public transportation. I figure tomorrow will be a good time to try, since then next week when I have Faith with me, I'll already know what I'm doing. I hear there's also a Trader Joe's, and I think it's not that far from Devon Nicole, so that will be nice to get some good groceries.
Anyway, there's the long-awaited long update. I have a bunch of pictures to post, but I'll do them separately because it's easier that way!

really fast note

2009-03-27T10:25:00.003-06:00

Friday, March 27
Faith's being fed to her stomach. And she's tolerating it. And she was being fed to her stomach all along, even through her "supposed" j-tube. I'll elaborate more later, but I just had to post that. It's good news, because it means that eventually we will be able to work back up to eating by mouth!

the long update...

2009-03-26T10:13:00.002-06:00

... is coming! I promise! I had the whole thing written and then clicked "publish" and got some stupid error message, and unfortunately even though Blogger saves drafts, only about half of what I had written was saved. I need to pump though before we go down for Faith's upper GI in about 45 minutes, so I will have to do it later!

Here's a picture to hold you over ;) This is Faith in her own bed at home!

positive...

2009-03-25T12:00:00.004-06:00

Wednesday, March 25
Today has been busy so far, meeting all the different doctors and everyone... Faith's labs came back last night, her bili and LFT's are up, which wasn't too surprising since I did think she was looking yellower... Dr. Puder came in and talked to me about the results, and he said that some of the other things they tested (coagulation) came back good, and those are a good indicator of overall liver health. So he is optimistic that her damage will be reversible. They also tested her poop yesterday when they did all the cultures, and it came back positive for C. diff. So, that explains her runnier than normal poops, which we had blamed on the antibiotics... Her other cultures aren't back yet, but the C. diff buys us a private room! I'm hoping maybe it's one of those rooms with a tub I read about on Carter's blog...
I will post more later today!

We're here!

2009-03-24T15:58:00.003-06:00

Tuesday, March 24
I am completely exhausted, but I wanted to post quickly and let everyone know that we got here ok. Going through security at the airport was a breeze, thanks to an awesome suggestion to contact the TSA manager before flying (thanks Paige!). The flight itself was ok... I really don't like flying much, and it was the longest flight I've ever been on (about 4 hours), and there was turbulence for probably 2/3 of it. I think I may have slept for about an hour. Faith did awesome, and slept pretty much the entire flight.
We got admitted right around noon, and are now in room 36-A on 10 East. It's going to be interesting getting used to everything being so different (we're in a shared room, I'm allowed to eat in here- in fact, since I'm breastfeeding/pumping I get to order meals for free!, there's a shower in the bathroom, I can sleep in the bed with Faith, plus about a million other things that are completely different!) I already met Dr. Puder and his team (Danielle, Alexis, and Kathy Gura) and signed the consent for the Omegaven, they will start that tonight and Faith will be Omegaven baby #115. Tomorrow we should meet a number of other doctors, including docs from the motility clinic and a feeding team. Dr. Puder seems optimistic that when we get her liver healed, her gut will work better, and she might even be able to eat by mouth again. He also was optimistic that we might not be here that long, since in the scheme of things her labs aren't that bad, and she has almost all of her intestine.
Anyway, I am having to fix typos pretty much every other word, so I am going to get some rest now and will post more later! I have a bunch of pictures to post, too.

T-minus 7.5 hours...

2009-03-23T15:56:00.002-06:00

Monday, March 23
Trying to make sure I've got everything together... I have a much longer post about our weekend (with lots of pictures!) planned, probably for tomorrow night after we're settled in the hospital in Boston, if I can stay awake long enough to do it.
I wanted to post and ask if anyone reading in the Boston area might have a pack & play or a bassinet we might borrow for Faith to sleep in while we're there. I am super OCD about taking care of things, no stains or anything beyond normal wear and tear on any of my baby stuff, so you would get it back in the condition you lent it! Please post a comment or send me an email if you have my email address.
Thanks, like I said, I'll have a much better update tomorrow!

2009-03-20T10:21:00.000-06:00

Homeward Bound!!

2009-03-20T06:33:00.004-06:00

Friday, March 20

I am packing up the last of our things, Faith took another carseat test, we're loading up the wagon... we are getting out of here this morning! I've done all the learning, I know how to work the feed pump, the TPN pump, and the lipids pump, I know how to mix the TPN, I can't say I know how to hook up the TPN tubing since Maree and I sort of had to guess at it last night, and we're pretty sure there are pieces missing... but there will be a nurse coming to our house tonight who will help with that. Technically, I'm already ahead of the game since I know how to mix it, because she was supposed to be showing us all of that tonight, but I had to figure it out last night on my own. Not that hard, I can cook and read a recipe, and it's basically the same thing, but with a lot more needles and alcohol swabs.

We have our room in Boston and a ride from the airport to the hospital, I've talked to the airline and TSA about our upcoming flight, I have the TSA Operations Supervisor's number to call as soon as we get to the airport on Monday, and there's a gate pass already arranged for Dave... I think all our bases are covered there... We've got one more nurse for Faith to take a picture with, and then we are done!

It is going to be strange to be home after living here so long, I've gotten so used to popping my head out the door to ask the nurse a question... I'm going to miss all of our nurses, they've been almost like a surrogate family while we've been here. The surgeons came by on rounds for the last time a little while ago, I'm pretty sure they said something like, "Thank God these guys are finally getting out of here!" ;-)

I probably won't post much over the weekend. It's going to be insanely busy with packing for an indefinite trip halfway across the country, and we're doing a last-minute baby dedication on Sunday at church. I will do a quick post just before we leave here today, with pictures of Faith in her going-home outfit, but otherwise stay tuned for an update when we get to Boston Tuesday morning!

Prayer request

2009-03-18T13:53:00.002-06:00

I just met a grandma in the family lounge while I was eating lunch, and her granddaughter (and her family) could really use some prayers. They didn't know that anything would be wrong with her before she was born, but she has an issue with her heart (some kind of a septum defect), that unfortunately the doctors can't do a whole lot for. There is a chance that when she gains a little more weight, they can go in and look around, and they might be able to make use of some arteries and give her some more time, but they said she probably won't live to be big enough for a transplant, and if they could do a transplant, it would be a heart-lung transplant, and I guess that's harder to get organs for. Anyway, I don't know what anyone can do for this family, other than pray for a miracle. I forgot to ask the baby's name, but it is a little girl, so please remember her and her family in your prayers, and pray that God would strengthen and be with them during this time.
I feel so incredibly blessed and thankful, that even if Faith's intestines never really work right, she can still have a full life... I can't imagine facing the type of decision this family may be facing all too soon... please pray for them.

Coming together!

2009-03-18T09:55:00.002-06:00

Wednesday, March 18
Things are definitely coming together! Jan is back today as our nurse, so we are going to try to get everything done that needs to be done for us to discharge (all the learning about the Broviac, meds, etc). I dropped Faith's prescriptions off at the Walgreens downstairs, and they'll be ready in about an hour. (Can someone who's been in Boston let me know if there's a Walgreens there?)
I talked to Julie from the Devon Nicole House, and we have a room starting on the 27th, with a three month reservation. I hope we won't be there that long, but I figured it's better to have it and not need it, than it is to need it and have them be full. And I'm not going to believe anyone's timelines ever again most likely, since we were told to expect a 6-12 week stay when she was born, and we're on week 18 now... I'm going to run to Target and get the last couple of things I need for the trip, and we're going to be all set!

The insider's guide to Denver Children's

2009-03-17T23:56:00.004-06:00

Tuesday, March 17

So, it's official. We'll be out of here on the day that starts with "F"... we're not telling Faith any specifics, don't want her to pull any tricks or decide the docs here need one more lesson from her. And, St. Patrick's Day isn't a real holiday since we're not Irish, so Faith will be out of the hospital by the next holiday, like we told her she needed to do at Valentine's Day.

Dave and I got almost everything packed up tonight. He took three boxes, a big suitcase, and a bunch of miscellaneous bags home (good thing he had the truck!). Both of us commented that we don't think it will feel real until we pull into our driveway. And I'm pretty sure Boston won't feel real until I've been there at least a week... even knowing we have our ticket, it still doesn't feel like it's going to happen.

So, in honor of the 4+ months I've lived at the hospital, I decided to do a post sharing all of the little things I learned along the way that would be helpful to someone else in this situation.

-The best magazines are in the surgery waiting room, on the second floor. I'm pretty sure they put the new ones out on Mondays. Not that they're actually new, but if you haven't read them, who cares if they're from Thanksgiving and it's actually Valentine's Day. They're free, and if you're like me and you enjoy cooking and trying new recipes, it doesn't matter when the magazine was printed. I don't understand why, but the NICU waiting room has a very odd assortment of magazines, very rarely is there anything I would read. They have magazines like "Avid Golfer", "AARP", "OT Practice"... not magazines I think most of the people with kids here would be interested in. Down on the second floor they've got all the "Better Homes & Gardens", "Woman's Day", "Cooking Light", and I even found a couple copies of "Real Simple". Good recipes, neat ideas for things I wouldn't think of on my own, and overall just a good distraction. So, make your way down to the second floor on Monday nights (I always go after hours, so there's no one at the desk to think I'm a weirdo stealing magazines!) and pick up some reading material. :)

-The best food in the cafeteria is the "Beast" breakfast burrito. Dave and I heard rumors that it existed, 4 months ago when we first got here, and the dad from the room next to us was telling us about it. He said the cook was a rather large woman, and something about not trusting a skinny cook... He said it was like $5 and he couldn't eat the whole thing (and he wasn't a small guy!). He got to meet John Elway at his restaurant, by the way... it was a cool story. But I digress. The burrito. Maree had told me about it once too, and how this woman down there at night would cook you pretty much whatever you wanted, and how this burrito was so gigantic she couldn't even eat half of it, and took the rest home for her husband... So, this one day when I was down there at breakfast time, I decided to try the breakfast burrito. It wasn't big at all, and I was thinking, seriously? This is what everyone's making such a big deal about?? I mean, it was good, but it wasn't huge, I had no problem polishing it off, and it just didn't live up to the stories about it. Tonight though, since Dave and I were busy packing and missed dinner, we decided to have a "last supper" of sorts at the hospital cafeteria. We headed over there, and saw a "late night" menu I had never seen before. And sure enough, on the menu- the Beast, for $5. So we each had one. The large woman I had heard about (I think her name is Stephanie) cooked them fresh for us. And let me tell you, that was one GOOD burrito. It came with salsa, green chile, and guacamole. I only ate half, I saved the other half for tomorrow. Dave and I could easily have split one. So, when you're here late at night and you're hungry, head down and have her make you a Beast. You won't regret it! (The only thing I regret is that it took us 4 months to have one!)

-If you need something to snicker at, go outside in front of the hospital towards Colfax around lunch time. That is when everyone goes out for their lunch time cigarette, and stands and smokes about 2 feet from the sign that says Children's is a smoke free campus. Every time I have gone past the people standing there smoking, I have wanted to take a picture. I laugh every time. Maybe I have a weird sense of humor. But I just can't help finding it amusing that they seriously stand right by the sign and smoke. I think the only thing that would make it more amusing to me, would be if someone actually leaned on the sign while they smoked.

-Room 60 in the NICU is a 3G dead zone. You know the ones they talk about on those TV commercials that try to spoof scary movies? Yeah, that's where we are. Dropped calls, random voice mails without the phone ever ringing, cutting out to the point where you swear the person on the other end has started speaking another language... But, room 60 has its advantages. It's the corner room, I'm pretty sure it's bigger than the other rooms, it's nice and quiet... but 55 has a better view of the courtyard area out behind the hospital. Whatever room you're in, if you're going to be there awhile, buy a cheap universal remote for the TV. The TV's don't have remotes, and it's super annoying. When we moved from 55 to 60, we lost probably 4 or 5 channels on the TV because for whatever reason they aren't programmed, and since we don't have a remote, we can't just go directly to that channel. I wish I would've just gotten one way back in the beginning...

-It might seem like the kitchen in the Family Hospitality Suite on the second floor should be really nice, since it's big and open to everyone, but really, it kind of sucks. There aren't plates, the coffee maker doesn't work, and there is no microwave. But there are microwaves and even a toaster on the first floor between the cafeteria and the day care.

-Tuesdays are fresh fruit and juice days in the NICU kitchens. I always grabbed a couple of apples and saved one for later, because they're always gone the first day, and I'd find myself wanting an apple later in the week when none were left. Tuesday is also free lunch day, when the March of Dimes comes in and does a little lunchtime talk on some topic that applies to some NICU parents, and they have free food and drinks. And, they give out a door prize. The first time I went, it was just me and one other set of parents, so we both got door prizes, and I got a $25 gift card for King Soopers! Definitely worth the time to go sit in the conference room for an hour, and sometimes the topics are actually interesting. And they do scrapbooking once a month, I went to that this month for the first time, and it was a very nice break from things. And it felt good to get some pages in Faith's book done.

I think the biggest thing I can say for advice, that really applies no matter what hospital you're at, is to always remember that YOU are your baby's parent, not the doctors and nurses. And really, they can't do anything to your baby that you don't agree with. Informed consent applies, even in the NICU. Don't let them pressure you into doing things you don't really want to do, and don't be afraid to say no. And, just because it's never been done before, doesn't mean it can't be done. Probably all it means is that you'll have to do the extra work to figure out how it can be done without causing extra work for the doctors and nurses, and then just tell them it's what you're going to do.

And on that note, here are some fun pictures!

Nathan and Mama picked out this apple for Faith. It's great, and the best part is, it's almost like her tubing in feel, so she's already used to it!Someone suggested on rounds today trying to see if Faith would wear a mask for the flight. Yeah, probably not.Worn out!All smiles :)I have more cute pictures to post, but right now, I'm falling asleep, so I have to put the computer away!

Boston hopes

2009-03-16T11:52:00.003-06:00

I've been looking alot at Boston Children's website in the past couple of days, just doing everything I can to familiarize myself with the hospital and the services available there, both for Faith's healthcare and for my own sanity (and the sanity of whoever joins me there). In all of my reading, I've found that not only do they have the Center for Advanced Intestinal Rehabilitation (the CAIR program) that I've mentioned before, but they also have a Center for Motility and Functional Gastrointestinal Disorders. Technically, Faith would fit under the scope of both programs. So, I am feeling very hopeful and positive that with the help of the experts in these two programs, we will be able to get Faith's gut working like it should, and maybe even get her eating by mouth!
Anyway, that's all I wanted to say :) Click on the links, read more about the programs, and some of the things that might be in store for us!

playtime :)

2009-03-16T11:09:00.002-06:00

The latest in developmental news- if we hang toys above Faith that she can reach, she has figured out how to move her arms to touch them! She's still working on using her hands and getting them to open up and grasp things, I think that'll be awhile. These pictures are from yesterday, so you can see, she really was feeling better already! (and many big thanks to Gram for the monkey, Faith LOVES it! I think monkeys are her new favorite!)

"I really want to touch that monkey!""I think I can, I think I can...""I did it!" A side note- when she tries to work her arms, her little legs go like crazy! I think the next thing we need to get her is one of those kick toys :)

map curiosity...

2009-03-16T10:56:00.002-06:00

Monday, March 16
So, I am a very curious person. I look at Faith's visitor map every day (usually multiple times a day!) to try and guess who's reading the blog. And I notice a few places showing up on there pretty much every day. Places where I don't know anyone, so I can't figure out who it is. Would any of you care to introduce yourselves by posting a comment? The thing I'd most love to know is how you're finding us, because I've tried googling a few different ways and the blog doesn't come up. I LOVE that people all over the world are reading Faith's story, and hopefully getting information that will help them or someone they love improve their health and quality of life :)
So... Uster, Switzerland - Oslo, Norway - all of you various Canadians - Escondido, CA (I see you a lot, but can't for the life of me figure out who you could be!) - and Sarah Palin up in Wasilla, AK ;-) ... who are you and how did you find us?

Pre- and post-op pics

2009-03-15T11:10:00.004-06:00

Sunday, March 15

Here are some pictures from the last couple of days, pre-op and post-op. Faith is feeling much better already this morning, needing less pain meds, and even giving us smiles! They are starting feeds now, at 5 mL/hr.

Faith's last night with the nasty nose tube and tape mustache!"Please God, let the surgery go well, so they can get this yucky tube out of my nose!"Our room, pre-op. They have to take Faith down in a warmer instead of her bed.Pre-op, downstairs in the OR holding areaMommy and Meema in the pre-op holding area... Faith's looking pretty yellow here...First post-op back in her room, not feeling too great...Post-op, trying to rest but we still had messing to do (getting the orange off of her)This is a close-up of her tube. I have no idea what it will look like for real, because right now they just have the Corpak tube taped in place, but I know it can't stay that way or I won't be able to change the gauze under the g-tube...Post-op last night, resting with the help of some Ativan...Feeling much better today!

Post-op, surgery #6

2009-03-14T14:21:00.004-06:00

Saturday, March 14
Well, everything went fine. They got her tube put in with less trouble than they thought it would be (just from scar tissue/adhesions from her prior surgeries). She isn't big enough for an official G-J tube, so hers is a little different. They put in a regular G-button and fed a Corpac tube (just like the ones they put down her nose) into it and down to her intestine, and then taped the Corpac tube in place. I don't really know a whole lot about it yet, but I'll have to take a class this week, probably on Tuesday, so I should know more then. (Although I wonder how much of the stuff will apply, since her tube is different...)
I told Dr. Partrick our scheduled departure date, so everyone who needs to know is now aware (Jann the case manager talked to Dr. Soden the other day.) And Dr. Sandoval was there for the surgery, which was reassuring, knowing that the same people who'd done all of her surgeries were taking care of her again.
I'm slightly overwhelmed by the amount of stuff that needs to get done this week to be ready to go, but I know it'll get done somehow. Please everyone pray that her recovery from this goes smoothly and that nothing unexpected (negative, anyway) happens so we can take our trip as planned!

2009-03-13T18:06:00.000-06:00

The flight is booked!

2009-03-13T15:14:00.004-06:00

Friday, March 13
I just booked our flight to Boston! We will be leaving at about 11:30 PM on Monday, March 23, and getting to Boston at about 5:00 AM on Tuesday, March 24! That's only 10 days away!!!

Four months old!

2009-03-13T12:02:00.004-06:00

Friday, March 13

Faith is four months old today! It's hard to believe... she's starting to act more and more like a four-month-old though, and I know from what I've read of others' experiences that once she's on the Omegaven and her liver starts getting better, she'll be even more like a "normal" baby.

She loves the little fishies on her swing (the mobile) and gets so mad when they stop! And she's started holding her hands together a lot more, playing with her fingers... and she's started trying to reach for toys hanging in front of her! She's started trying to roll over from back to tummy, and she's getting better with head control, but is probably a little behind there... I think once I can start wearing her more in the wrap that will help.

I am asking a million questions a day now, just trying to learn all of her stuff at a more gradual pace, rather than the cram-session that usually accompanies NICU discharge (or so I hear). I find it all intimidating, but I think it'll be ok... there's just SO much to remember, and some of the stuff (especially involving her Broviac) is SO important to keep her from getting an infection! She's made it 4 months now without ever having a line infection, which is amazing and wonderful, and I want to keep it that way!

Faith will be having her surgery at about 9:00 AM tomorrow. I've been searching all over for pictures of what her tube will look like, but can't find anything, and really can't picture myself what it will be like. Dr. Potter explained it yesterday (as best as Dr. Potter can explain anything!) and it will be like a regular G-tube with another tube like the one she has in her nose fed down it and to her intestine. I've seen pictures of the regular G-tube, but never anything quite like what he described.

When we were debating the G-tube before, everyone whose kids had them said they weren't a big deal, and when you eventually take it out the hole closes up and looks like another belly button... so I thought it was kind of funny, Faith doesn't have a "normal" belly button, and as it is now what the surgeons tried to give her probably won't look much like one with the extra times they've had to go in that incision, but she does have two scars from her chest tubes that look like belly buttons, and then she'll have a third one from the GJ-tube. So when she's older if anyone says anything about how she doesn't have a belly button (kids are mean!), she can come back and say she actually has three :)

I heard from the Boston social worker (Stephanie) today; I had emailed her asking if they had resources for getting from the airport to the hospital. Thinking about the flight, flying by myself with her and all of her "accessories", is kind of scary... please pray that I'll have peace with that. I'm not a big fan of flying anyway, and have only flown alone a couple of times, and have never flown with a baby... and I'll have to make sure that everything is timed right that she'll be all taken care of for meds and TPN and feeds and everything... her feeds last 4 hours, so I'll have to start a new one right before we leave and then the next one right after we land... and then I have to make sure that I've pumped right before we take off and pump again right after we land... I'm looking at booking a red-eye flight so that it's non-stop (it's the only non-stop we can afford), so we'll be leaving Denver around 11:30 PM and getting to Boston at about 5:00 AM. I find all of this slightly overwhelming... so many things to think about all at the same time!

I'm still waiting to hear from our case worker here (Jann), she's supposed to be talking to a case worker there today hopefully, to find out more about the insurance stuff, like how likely it is that they'll pay for everything if we go out there on our own. I'm holding off on booking our flight until I hear confirmation from her that the insurance most likely will pay. We know they might not pay for the Omegaven, but that's not a big deal b/c the hospital pays for it if the insurance doesn't, but theoretically they could deny everything else (labs, inpatient stay, etc) saying it has to do with the Omegaven. So I want to know they probably won't do that before I book the flight, since we can't afford to do this if the insurance won't pay anything.

Anyway, I could go on all day about all the little things that have me nervous/worried right now, but I won't, I'll just post some cute pictures instead :) Stay tuned tomorrow for cute pictures without the tape mustache!

Faith got all dressed up for her four month "birthday" :)

Faith was feeling spring-y yesterday :)

2009-03-11T16:16:00.003-06:00

Wednesday, March 11
Well, things are seeming to fall into place and become more definite. Faith will be getting her G-J tube on Saturday. She has to be NPO for that, but hopefully re-starting feeds after that will go smoothly, and we will go to that place that starts with an "H" soon after that. From there, we will most likely go on to Boston on our own.
Our case manager came in this morning to tell me that Boston Children's is a non-network provider for our insurance. They also are refusing to cover anything for Faith until she is discharged from the hospital. SO, what that means is that if we did a hospital-to-hospital transfer, the insurance won't cover the transport, or the initial inpatient stay in Boston. (The transport alone would be $26,000!) That's the bad news.
The good news is, they seem to really want to send us home from here anyway, and then we'll be able to fly commercial to Boston. We have pretty good insurance, and they'll pay once Faith is discharged, so even non-network, we can make it work and just pay the out-of-pocket costs. I was never very worried about the healthcare costs associated with the Boston trip... it's the rest of it- eating, living, getting around- that's going to be a drain on us financially. We are very blessed to have this insurance available to us now.
There seems to be an interesting power struggle going on with Faith's doctors right now (well, for the past week really). Surgery has followed us and been her primary doctors the whole time we've been here. But pretty much since Dr. Sandoval switched to his urology rotation, I haven't seen a surgeon. The last time a surgeon talked to me was when we had our conference with Dr. Partrick. And neonatology has gotten more involved, with Dr. Kinsella making decisions and writing orders about Faith's feeds. So last night around midnight, when I posted last, he bumped her feeds to 17 mL/hr. This morning, Dr. Potter bumped her feeds to 18 mL/hr. Of course she threw up and was just generally unhappy and uncomfortable, since anyone who really knows anything about her knows that it's NOT smart to increase her twice in 12 hours... So Kinsella said to back her down and hold her at 17 mL/hr. So Dr. Potter must have seen that, and he wrote another order to bump her back to 18 mL/hr, and then increase to 19/hr tomorrow and 20/hr the day after that.
So Donna the NNP came in and asked if I thought she'd be ok increasing like that, and explained that they couldn't hold her at 17 if surgery wrote to increase to 18... so I asked whether we could hold her at 17 if I said no to increasing her, since realistically they can't do much of anything without me agreeing it's ok. I told her that Faith was really uncomfortable and threw up this morning when she was at 18, and I don't see a point in making her uncomfortable when we're planning to go to Boston anyway and if she's going to get pushed to take more, it'll happen then. So she called surgery to talk to Dr. Partrick; he and Potter were in the OR together, so she was able to confirm with both of them that we're holding Faith at 17 mL/hr.
All I can do is hope that we get out of here soon, and that the doctors in Boston have slightly better communication skills than they do here... Still no more definitive word from them...

not even sure what to think

2009-03-11T00:31:00.003-06:00

Wednesday, March 11 (technically)
I just had to post quick, it's after midnight so technically it's Wednesday...
Dr. Kinsella (the neonatologist) just came in and asked how Faith is doing. He explained that the tube they put down in fleuro this morning is bigger than any feeding tube she's ever had before (8 french) in hopes that it would be able to get further down and that it would be harder for her to vomit out. (I already knew that, since I was there when they put it in!)
Anyway, since it's apparently against the rules to let her have more than one full day comfortable and without any throw-ups, he wants to increase her feeds to 17 mL/hr and see what happens. He has said before and pretty much said again that they'd be happy with getting her to 17 mL/hr and making the rest up with TPN (not that we'd be happy or willing to settle with that, since it's only about 65% of her goal of 26 mL/hr, and in reality her goal should be increased to 27/hr based on her current weight, which makes it 63% of her goal). He said something about her not needing to be in this room anymore at that point... I think he's hinting at the "H" word- that one that rhymes with "Rome"...
I'm not letting myself go there though, and honestly even if we did get to, how much would it really matter if we're only there for a short time before leaving for Boston? 65% isn't enough for me to feel confident that her liver status will improve. I think she'd have to get to 75 or 80% before I'd feel ok about it... we'll see I guess... maybe she will prove us wrong after all, and miraculously get to full feeds or something... (but God save us if we have to go home with an NJ tube, and have to drive 45 minutes to have it put back when she pulls it out every other day!)
We'll be at 120 days, 4 months, on Friday...

a little yellower, field trip, and more info

2009-03-10T17:18:00.003-06:00

Tuesday, March 10
We thought towards the end of last week that Faith's eyes are looking more yellow than they had been, so we knew her numbers would be different again. Her labs this week are a little worse, her direct bili is back up over 6, and her ALT (liver enzymes) went up to 325 from 299... I really hope the Boston stuff can happen quickly!
We took a field trip this morning to fleuroscopy again. I think Faith has a thing for Fleuro Room 1, she's down there at least once a week. As much as we don't want her to have a more permanent feeding tube, we don't want her to have NJ tubes put down every other day. So, we're hoping they'll decide soon to put in a G-J tube to save her some of that stress. They've said they won't even think about it for another couple of weeks, though.
We don't like the idea of tube feeds, but really until they figure out why she's not able to tolerate feeds to her stomach anymore, it's our only option. So we've come to terms with the fact that she may be on tube feeds for awhile... and realistically, she may be on a combination of tube feeds and TPN for quite awhile, since there's no magic wand to wave and suddenly make her tolerate full feeds.
I've been paying more attention to her Broviac care, since I know I'll have to take that over soon. And I've been asking more questions about everything, too, just to try and prepare myself for all of it.
I realized the other day I haven't really posted much info about the Omegaven, even though I've talked about it alot. There is a good amount of information on this website. It's not the only reason we want to go to Boston though, we are really looking for a second opinion on all of Faith's issues, and we're hoping that since there is a whole team of doctors there that specialize in issues like hers, maybe they'll have some different ideas and will be able to get things working like they should.

funny

2009-03-10T00:52:00.002-06:00

Monday, March 9
Dave and I got back to the hospital late tonight, because we went to Daddy BirthChat tonight... I wanted to go since it will probably be my last chance to go for quite awhile. Anyway, so when you get to the hospital late, they make you check in at the security desk, even if you have a bracelet.
So we go up to the desk, and the security guard says, "Do you have wristbands yet?" We were like, "Yet? We've been here four months!" I think it's funny when people ask things like that... another time I was validating a parking ticket and the guy asked if I'm here a lot... I just said "Yeah, I live here!"
Thinking about being outpatient in Boston is slightly liberating... as scary as it is, and as much as it's TOTALLY not like being home, it will still be pretty cool to have Faith to myself and take care of her, and be able to do what I want with her...
Anyway, it is late, and I've got caffeine and exhaustion working against each other...
Please keep praying that the insurance process will go smoothly and we'll get a transfer date SOON!

Cool new thing!

2009-03-08T12:19:00.002-06:00

I had to post quick and tell everyone to go look at the map at the bottom of the right column. I added it on Friday (I think) and it is so cool! You can click on it, and it will show you where everyone is who's looked at our site! Seeing that people from Switzerland and New Zealand are reading about Faith is so cool! :)

Sunday fun

2009-03-08T12:11:00.003-06:00

Sunday, March 8

Nothing big to post today, just some fun new pictures! :)

a little more certainty

2009-03-06T09:52:00.005-07:00

Friday, March 6
I told Faith yesterday that it would be nice if she could just make it obvious if we were going to need to go to Boston or not... I said I wished if we were going to go, she'd just throw up or something so we'd know. Well, she listened to Mommy...
Yesterday I asked the docs on rounds if we could switch her back to oral Prevacid from the IV Protonix, since I had felt like that worked better for her. I didn't know it was going to be a gigantic dose (almost a full teaspoon)! We tried to give it last night, and she threw up about 20 cc of milk. (which shouldn't happen, considering her feeding tube is past her stomach...) Then around 2 AM, she threw up again... then this morning we tried to give her Prevacid again, and she threw up a bunch. This morning's throw-up didn't look like milk though... not sure if that's good or bad.
She's being fed at 15/hr right now, and I had asked that since we're going to Boston anyway, maybe they could just back off to 12, where she was tolerating it better with no throwing up... but they want to rule out that the Prevacid is causing it first, and confirm the placement of her tube, and just hold her at 15 and see what happens. We're going to try giving the Prevacid through her tube instead of by mouth, and hope that she tolerates it that way. (I had thought it had to go to her stomach to work.)
So we'll watch her for a day or two and see if she throws up more, and then maybe try to slowly increase her again. I told them I really don't care if she gets increased in feeds, because I don't think she'll get high enough anyway to get off the TPN, and that's what she'd have to do to rule out Boston. But it is important to try and get her feeds as high as we can, because the higher they are, the less damage is done to her liver, and since we don't know exactly how long it will take to get the Boston transfer organized, we need to do what we can to keep her liver fairly stable.
So it has become pretty apparent now that Boston is going to happen. (As long as the insurance approves it!) Please pray that the insurance approval process goes smoothly and quickly, with no denials, so we can get her to Boston, on the Omegaven, and start healing her liver!

update

2009-03-05T15:59:00.004-07:00

Just wanted to post a quick update- I got an email response from the nurse practitioner in Boston about whether there is a limit on eligibility for Omegaven, since that would affect our decision of whether or not to transfer to Boston if feeds continue to progress. She said that as long as Faith is receiving any IV nutrition (and has a direct bilirubin of 2.0 or higher), she is eligible. So unless she miraculously gets to 100% feeds and her liver is cured before the Boston transfer is organized, it looks more like that is going to happen!

Please pray that the insurance approval process goes smoothly and quickly!

Boston bound... maybe...

2009-03-05T14:23:00.004-07:00

Thursday, March 5
Well, we've officially started the process of organizing a transfer to Boston. We haven't talked to Dr. Soden or Dr. Partrick since making the decision and getting things going, but we can pretty much guess how they will react, and we don't think it will be terribly positive... It's a lot of work to figure out the transfer, but we think it's the right thing to do. I've talked to the social worker and the nurse practitioner in Boston now, in addition to Dr. Puder, and filled out our intake form, and we talked to our case manager here to get her on board and working towards our goal of a timely transfer. She'll be assembling the documents they need to find out if our insurance will cover the transfer, and faxing them to the NP in Boston so they can start working on that. Then the social worker said it usually takes a couple of weeks to get the insurance approval (they deny a lot because since Boston does the Omegaven, which is experimental, it raises a red flag for insurance companies when babies transfer there). So, if all goes well (and she still needs it) we could leave for Boston by the end of the month.
I say if she still needs it because right now Faith is being fed at a rate of 15 mL/hr, which is about 58% of her goal of 26 mL/hr. They are going to hold her at 15 overnight (instead of increasing to 16 at 11, like they normally would), and increase to 16 tomorrow, and then hold her there through the weekend. 16 mL/hr would be about 62%; the idea is to get her to the highest rate she can possibly tolerate, preferrably at 75% or above, which would be about 20 mL/hr (obviously 100% is ideal, since every day that the Broviac is in increases her risk of developing a central line infection, which she's luckily not had at all so far, but can be very serious). On Monday we'll have her latest liver numbers, and we can re-evaluate the plan and how much we should continue to push her to tolerate. From what I've read, I think they have to be at 40% or less for feeds in order to qualify for Omegaven, so she'd have to stop tolerating the amount she's currently at... (although I'm waiting on confirmation on that from Boston)
So, as of right now we're unsure of whether she'll truly need to go to Boston. If she doesn't qualify for Omegaven, I'm not sure we'll go, because we can go to Omaha if she is discharged on a TPN/continuous feeds combo and work on intestinal rehab there, a lot closer to home. But, we're still going to make sure we have everything organized and set up, so that if she does need to go to Boston, we're ready for it. I think of the time when we were all set to go home, and then she stopped tolerating feeds and we had to stay, and I think that the more work we do, and the more we're set to go to Boston, the more likely it is that she'll just keep tolerating feeds and we'll end up going home instead.
I wish I would've known about intestinal rehab a month ago... I think we would've had her transferred then and it would have saved some of the strain on her liver... but hindsight is always 20/20, and I know now that if I ever read about another family going through the same struggles we've faced, I can direct them to the resources they need to get their child better.
Please pray that God will direct us in the way we should proceed, and that he would let Faith show us what she will need... if she's going to stop tolerating feeds, let it happen soon, and not get our hopes up yet again, and let us know we're making the right decision in getting her transferred to Boston...

pictures

2009-03-03T17:22:00.009-07:00

Sleeping like a little angel... the only reason she's tolerating a hat on her head is because she had a dose of Ativan shortly before this, to replace her feeding tube after she pulled it out!Showing off new jammies she's finally big enough to wear! Her new shirt, and woolies that have become capri's now that she's grown

Happy girl :) Broviac scar. This one shouldn't show much after awhile...

Chest tube scars

Using her tongue to feel her new tooth, and showing off a new diaper cover

This picture was an accident, she wouldn't look at me... but it shows just how yellow her eyes are (the picture gets bigger if you click on it)

Faith loves her monkey! The monkey needs a name, though...

Her incision from her latest surgery... she's not liking the stitches this time, and it isn't healing very nice because of it!

decisions...

2009-03-02T20:01:00.004-07:00

Tuesday, March 3
This is just going to be a quick post, as I realized I haven't updated in awhile... We are in the middle of a difficult decision right now that will most likely result in Faith being transferred to another hospital out of state. Right now we are leaning towards Boston, for a number of reasons (Omegaven, their CAIR program, the great doctors). The doctors here aren't necessarily supportive of that plan... we have to wait a couple of days for our insurance to kick in and then I'll be in contact with them (and have our case manager talking to them, too) to see what they'll cover if we have Faith transferred to Boston for intestinal rehabilitation. We won't mention Omegaven, it will just be a happy extra if we go to Boston, but for all insurance purposes, we will be going there for intestinal rehabilitation.
Either way, we will likely be going somewhere with an intestinal rehabilitation program, although Dr. Soden feels it is much more important to go to Pittsburgh and get listed for a transplant, and that we'd get a second opinion and a rehab evaluation while we are there... but I've heard a couple of things now that make Pittsburgh not sound like the best plan... I've found a great deal of support and information from speaking with other short-gut families. Even though Faith has almost all of her intestine, that's essentially what they're classifying her as for now. They say she has "functional" short-gut.
I spent most of last week reading all about Max Munakata, a short-gut baby from Boulder who is also under the care of Dr. Soden and Dr. Partrick. He is an Omegaven success story, and I hope that we'll be able to get together with his family soon to talk about everything and learn all we can from them.
Faith will be 50% to full feeds tonight, if she continues tolerating them. We recently re-started Erythromycin, since we can give it to her intestine, and not her stomach, so it isn't making her vomit like it was before. But her reflux has gotten progressively worse as we've gone up on feeds. Still, her poops have also gotten bigger and more frequent, so maybe things are working better than anyone gives her credit for... Maybe she'll make us go through all of this trying to get things figured out to transfer to a different hospital, and then get better and not have to go. We're not holding our breath though...

Museum, playtime, and surprises!

2009-02-27T22:53:00.005-07:00

Friday, February 27 (evening)

Well, I accomplished everything on my "to-do" list today. I spoke with both Dr. Soden and Dr. Partrick today. Dr. Soden is a nice guy. He really is. But his favorite word seems to be that yucky "T" word. We spoke for at least 10 minutes or so this afternoon, and I think he said it at least 15 times during our conversation. When he left, I really had the impression that his opinion is that Dave and I should talk about it and go to Pittsburgh for the transplant evaluation.

When Dr. Partrick came to talk to us tonight, he was much more moderate in his approach to things. He is optimistic that we will be able to get her to at least 50% enteral feeds, if not more than that, by just taking things slow with the continuous NJ tube feeds. If this is the case, and her liver numbers stay stable and/or get better, we won't have to talk about a transplant or Omegaven. He said that even if she fails this attempt at feeds, it doesn't necessarily mean total failure, and they will just take it down to whatever amount she did tolerate and send us home on a combination of continuous feeds and TPN. We felt much more optimistic after talking to him.

Yesterday we took Noah to the museum with Dave's parents and Noah's cousin, Jordan. Noah LOVES the museum, especially the dinosaurs. Next time I think we will save the dinosaurs for last, because once he's seen those, it's hard to get him interested in anything else. It's nice now that we have military ID's, we get in for free. Noah also likes spending time with Faith, he is a good big brother.

Faith has been very happy the past few days, just full of smiles for everyone! We took advantage of her good mood earlier today and spent at least an hour playing on her mat on the floor. We're working on getting her to realize she can control her arms and reach for the toys that hang over her. She seemed like she was starting to understand, before she started to be too tired and lost interest. Hopefully next time, Sheryl the PT will be able to come and give me some more pointers on how to help Faith start doing some of the things that are developmentally appropriate for her age.

For the past couple of days, I had said we should feel in Faith's mouth and see if she's getting any teeth yet, since she's about 3 1/2 months old now, and Noah got his first tooth right around 4 months. So tonight, I stuck my finger in there and was shocked to feel that Faith has her first tooth!! We think it's the bottom left tooth, and it probably came through a few days ago, based on how much of it is already through the gum.

On a much more negative note, we also got an unpleasant surprise today. Dave lost his job. They gave him the impression that he would still have a job until he leaves for basic training (which has been pushed back now until August, for the time being), and told him to come back today and be there at 8:30, and by 9:00 he had called me to tell me they let him go. Please keep us in your thoughts and prayers during this tough time, and if you know anyone who's hiring or looking for someone with 2 bachelor's degrees in Criminal Justice and Social Work, let us know!

Wake-up call

2009-02-27T07:23:00.004-07:00

Friday, February 27

Wow. I just got woken up by a phone call from Dr. Puder in Boston (the one running the Omegaven trials). I emailed him last night, just to sort of update him on the situation and the fact that it's looking more and more like Omegaven may be our next step... and he called as early as he possibly could without being considered rude (7 AM our time).

Once again, he said that if we need to go to Boston and get Faith on Omegaven, just to let him know and he will get me in touch with the people there I need to talk to (the social worker and intake nurse). He said Tricare has paid for it in the past, so that was good news since that is what Faith will have for insurance as of the 1st of March. He explained the process a little more, too.

We would go to Boston. There would be an inpatient stay of about 48 hours (that's nothing!) and then we would stay somewhere else (he said there is hospital housing that is around $20/night but sometimes free). We would have to stay in Boston (or the area) until Faith's direct bilirubin measures less than 2. Just to give you an idea, right now it is 6.1 (which is high enough to qualify under their compassionate use guidelines!). Then we would have to go back every 2 months, or until Faith is off TPN. But he said they would work like crazy to get her off the TPN, and that they have experimental drugs for motility and stuff, too.

He thought they were crazy for bringing up the small bowel transplant, and was surprised that Dr. Soden is the one who mentioned it. He said he couldn't believe it, and that the thing with the small bowel transplants is that they don't even really work. He said he would be much more in favor of turning things around for her liver so that she can have the time to get the rest working.

SO- on my agenda today:

Talk to Dr. Partrick and Dr. Soden about what we do if feeds don't work. Ask if we can get on Omegaven here, and if we can't, let them know we're looking into our options for that as our next step.

Email the leaders of the trial in Omaha to see what they have to say.

(Oh, and go to Target and pick up my new glasses.)

I spoke too soon...

2009-02-27T00:58:00.004-07:00

Thursday, February 26
Well, we tried to give Faith a bottle earlier today. (Actually, Maree tried last night, Jan tried this morning at 9, and then I did at 11.) Faith threw up in the night/early morning and threw up her feeding tube, so they took it out and replaced it, but just to her stomach. It only took until the bottle I gave her at 11 (and the resulting huge throw-up and having her throw up her feeding tube again) for us to realize that feeding to her stomach just isn't going to happen right now. Even if she could eat orally, she doesn't remember how to eat from a bottle anymore. She still has the desire to have things orally, but doesn't remember how to suck right, and mostly just plays with the bottle.
So, they took her back down to fleuroscopy to have the tube placed transpylorically again; now it is 8 cm past the pylorus. She is being fed continuously at a rate of 5 mL/hr right now, and they are going to try and raise it by 1 mL/hr two times a day... if she tolerates it. Her goal for full feeds is 27 mL/hr. Her reflux seems to be worse again, they are going to add the Zantac back into her TPN, in addition to the Protonix and Reglan she is already on.
We need all the prayers and positive thoughts everyone has to spare right now. If they aren't able to get her up to full feeds and off the TPN, there really aren't a whole lot of other options and that awful "T" word will be brought up again much more seriously, and we will have to probably go to another hospital, probably either Omaha or Boston, depending where we will be more likely to be able to get her on Omegaven and hopefully save her liver.
On a slightly more positive note, Faith seems completely oblivious of everything. She has been so happy the past few days, just smiling and laughing at everything. I hope to have more smile pictures to post soon, although she seems to know what the camera's for and stops smiling and just stares at it as soon as I get it out...

Progress, and the "T" word

2009-02-25T17:40:00.006-07:00

Wednesday, February 25

Well, I'm happy to say that some progress has been made since my last post. Faith no longer has the tube down her mouth to keep her stomach empty, and is getting 4 ml's of breastmilk per hour down by feeding tube. And, I finally got everything put away at our house, so all that's left to do there is the actual real cleaning that's been neglected for the past 5 months...
They stopped feeds on Saturday night, because her output from the OG tube (the one down her mouth) had increased, so they interpreted that as not tolerating feeds. They gave her a couple of days of rest, but her liver numbers for this week were still pretty bad (although not quite as bad as they were last week).
Over the weekend, the GI doctors came to see Faith, and for some reason they decided to mention that if things don't turn around soon for Faith, she might need to be listed for a small bowel transplant. That would mean first going to Pittsburgh to be evaluated, and then transferring to a hospital that can do a small bowel transplant (the closest one is Omaha, although if it came to that, I think we'd rather go to Boston, because at least there it would be more likely that we could get her on Omegaven for her liver). Pretty much everyone thinks it was WAY premature for them to bring up the "T" word, though. There are still a number of options that haven't been explored, not to mention Faith has pretty much acted like she has short bowel syndrome (aka "short-gut"), and not all short-gut kids have to get transplants... So we don't seriously think that will happen.
On Monday Faith went to fleuroscopy (where they do the Upper GI studies) to have them confirm the placement of her feeding tube, and advance it past the area they operated on, so that they could re-start feeds and get her off the TPN. I wish they would have taken her down there a week ago! I was looking forward to seeing it, to see what her intestines look like now that they tapered them (does that make me weird?). Well, pretty much as soon as they put the barium down her tube my spirits lifted. It was neat to see her intestines all nice and narrow and the same size, and we could see the staples where they did her tapering. And right away we could see that what they had assumed the whole time about the feeds and her intestines was completely wrong!
Assumption #1- The feeding tube was in the part of her intestine that they operated on. Which led to Assumption #2- The part they operated on wasn't working, or was actually working backwards. Assumption #3- Since the feeding tube is transpyloric, the pyloric sphincter (the opening from her stomach to her intestine) can't close all the way, so the milk they fed her through the tube could easily go backwards into the stomach, where it was being sucked out by the OG tube hooked to suction.
Well, everyone knows what they say about assumptions, and it has rung true yet again. In reality, we could see right away that the feeding tube was doubled in her stomach, so they thought it was quite a bit farther than it really was, and it actually was just barely past her stomach! I immediately got a million times happier, because suddenly everything made sense. The feeding tube was just past her stomach, so it made perfect sense that the milk would come back up the tube into her stomach that was hooked to suction! And what little bit of milk that was going through when they were doing the feeds was coming out as perfectly normal breastfed baby poop! Once I saw that, my mood changed dramatically and both Jan (the nurse) and Rose, the CA (clinical assistant), could tell that all I wanted to do was see the doctors and tell them they were wrong!
As soon as I saw Dr. Sandoval, that's what I did, and I told him I wanted the OG tube put to gravity, and that they should re-start feeds. He agreed to put it to gravity, so then Jan convinced him to just take it out. They re-started continuous feeds at 2 mL/hr through the feeding tube. Then he took some tissue samples from her rectum for them to biopsy to rule out Hirschsprung's disease.
Last night, they tried to increase her feeds to 4 mL/hr, but she got really fussy so they backed them to 3 mL/hr. Then at noon today they put them back up to 4 mL/hr, and they will continue to increase by 1 mL/hr every 24 hours. They are taking it extra slow this time to really give her intestines the chance they need to get used to working. She threw up one time last night, just a little, as Joanna was doing a diaper change and moving her around. She hasn't thrown up since then. As long as she doesn't throw up tonight, I told Dr. Sandoval today that I want to be able to try to feed her by mouth tomorrow and see what happens. If it works, we'll have them take the feeding tube out and work her back up on oral feeds.
Faith has grown quite a bit over the last couple of weeks, and is now about 9 lbs. She's starting to outgrow her newborn-sized clothes, especially her sleepers, so we brought down a bunch of her 0-3 months clothes. I really didn't want to, but it makes more sense to have her wear them here than it does for them to sit at home. I hope that she will still fit her going home outfit when that time comes...
We are hoping and praying that maybe this time feeds will work... I don't know that we'll make it home for St. Patrick's Day (the next holiday on the calendar), but we are really praying that maybe we'll be there for Easter, which to us is the next REAL holiday... that gives us 46 days...

100...

2009-02-20T23:04:00.003-07:00

Friday, February 20
Well, tomorrow is 100 days. Kind of depressing... I think what's worse though is that we're no closer to going home than we were two months ago. They don't exactly know what's going on, why Faith's intestines/stomach still aren't really working right. The lower part of her intestine is working fine, it's the part that they operated on that still isn't working. And since it isn't working, the stomach doesn't want to empty, because if it empties into that part of the intestine, and that part isn't working, it just comes back up. When I asked Dr. Sandoval tonight what the back-up plan is if that part of intestine doesn't start working right, he pretty much said they don't have one, but that he's optimistic that it's just a matter of time and it will wake up and start working.
Faith is really growing. It's hard to tell if it's true growth or just retained fluid... she doesn't look super swollen, but the headband that was too big on her last week is fitting this week, and her hands definitely swelled up around her thumb splints tonight... She weighed over 9 lbs tonight. As much as I want her to grow, I still hope she doesn't outgrow the clothes she has here (all her newborns) until we are ready to go home... We have lots of 0-3 month clothes at home, but I think it will be hard to have to bring them here for her to wear. Her going home outfit is 0-3 months, so hopefully she won't grow too much and it will still fit when she gets to finally go home.
Anyway, I don't have too much else to say... Like I said, no one really knows what's going on, no one has any idea when she'll be able to start eating by mouth, and no one has the slightest clue when we'll ever get to go home.