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!

One Year Old!!!

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

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

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...

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!!