The insider's guide to Denver Children's

Tuesday, March 17

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

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

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

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

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

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

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

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

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

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

And on that note, here are some fun pictures!

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

Boston hopes

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

playtime :)

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

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

map curiosity...

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

Pre- and post-op pics

Sunday, March 15

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

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

Post-op, surgery #6

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

The flight is booked!

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

Four months old!

Friday, March 13

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

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

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

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

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

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

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

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

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

Faith was feeling spring-y yesterday :)

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

not even sure what to think

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

a little yellower, field trip, and more info

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

funny

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

Cool new thing!

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

Sunday fun

Sunday, March 8

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

a little more certainty

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

update

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

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

Boston bound... maybe...

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

pictures

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

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


Chest tube scars

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

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

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

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

decisions...

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