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!!

Finally, some pictures!!

Tuesday, September 15

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

Anyway, here you go!

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

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

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

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

In Boston

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

Exciting news!!

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

general updates and great news about feeds!

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

formula and older brother perceptions

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

Awesome labs!

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

great news!

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

long time, no update

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

home at last!

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

Please pray

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

contest

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

Transplant?!

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

Updates and pictures

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

Hey Papa...

Public Service Announcement:

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

This one's for you! :)

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

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

Hooray for fish!!

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