God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.
(2 Corinthians 1:3b-4, NLT)


Tuesday, March 31, 2009

Omegaven magic!

Monday, March 31 evening
Kathy Gura, the Omegaven pharmacist, delivered a whole box of Omegaven to our room today. Makes it seem a lot more real, for some reason... maybe because it's in the bottles instead of a syringe like it's been (which is the same as the regular old lipids come in), maybe it's because now I know she'll be on it, even when we're not in the hospital anymore... either way, it's pretty cool :) Speaking of Omegaven- I was looking at Faith's feet today, thinking how cute they are and how I need to take one of those artsy black & white pictures of them like you see in frames. A little while later, I looked at them again, and noticed something. Look at this picture and tell me what I noticed: (hint- look at her foot in comparison to my hand)
That's right! Her feet are turning PINK!! It makes me tear up to look at the picture! I remember reading on Max's blog that the yellow goes away from the feet up... Tomorrow is day 7 on Omegaven.

delay, part 2

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

Monday, March 30, 2009

video

delay...

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

labs

Monday, March 30

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

Sunday, March 29, 2009

icing on the cake

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

video

video

video

The cutest baby in the world

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

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

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

First time sleeping in her own bed!

"I think I might like this place!"

The cutest baby in the world...

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

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

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

Her coat's still a little big...

Daddy and Faith at the airport

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

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

"Mommy, I'm on Omegaven!"

Miracle #115

"Must you always flash that thing at me?"

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

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

Sleeping in her really big crib

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

Some clown doctors tried to entertain Faith on Friday

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

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

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

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

Shirt idea

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

Seriously?!

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

no news...

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

Saturday, March 28, 2009

Video!!

video

another room change...

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

a big thank-you

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

the long update, for real!

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

Friday, March 27, 2009

really fast note

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

Thursday, March 26, 2009

the long update...

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

Wednesday, March 25, 2009

positive...

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

Tuesday, March 24, 2009

We're here!

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

Monday, March 23, 2009

T-minus 7.5 hours...

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

Friday, March 20, 2009




Homeward Bound!!

Friday, March 20
I am packing up the last of our things, Faith took another carseat test, we're loading up the wagon... we are getting out of here this morning! I've done all the learning, I know how to work the feed pump, the TPN pump, and the lipids pump, I know how to mix the TPN, I can't say I know how to hook up the TPN tubing since Maree and I sort of had to guess at it last night, and we're pretty sure there are pieces missing... but there will be a nurse coming to our house tonight who will help with that. Technically, I'm already ahead of the game since I know how to mix it, because she was supposed to be showing us all of that tonight, but I had to figure it out last night on my own. Not that hard, I can cook and read a recipe, and it's basically the same thing, but with a lot more needles and alcohol swabs.
We have our room in Boston and a ride from the airport to the hospital, I've talked to the airline and TSA about our upcoming flight, I have the TSA Operations Supervisor's number to call as soon as we get to the airport on Monday, and there's a gate pass already arranged for Dave... I think all our bases are covered there... We've got one more nurse for Faith to take a picture with, and then we are done!
It is going to be strange to be home after living here so long, I've gotten so used to popping my head out the door to ask the nurse a question... I'm going to miss all of our nurses, they've been almost like a surrogate family while we've been here. The surgeons came by on rounds for the last time a little while ago, I'm pretty sure they said something like, "Thank God these guys are finally getting out of here!" ;-)
I probably won't post much over the weekend. It's going to be insanely busy with packing for an indefinite trip halfway across the country, and we're doing a last-minute baby dedication on Sunday at church. I will do a quick post just before we leave here today, with pictures of Faith in her going-home outfit, but otherwise stay tuned for an update when we get to Boston Tuesday morning!

Wednesday, March 18, 2009

Prayer request

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

Coming together!

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

Tuesday, March 17, 2009

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!

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