What September 11 means to me

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!

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

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^th until 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!

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!

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

We're walking again in June!

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

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

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!

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

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...

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!

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!