Sunny day in the NICU

What is this stuff they call sun?

Ok, so I will start with Caleigh's feeds. Here we go...

Last post, we had stopped her continuous feeds once again. The next day we started up again at 2ml an hour. As of today we are at 4ml an hour and tomorrow we will go to 5 ml again. We started 'cycling' if you want to call it that today. This means 4 hours of continuous feeds and 1 hr off, 4 hours on, 1 hr off. We are trying to see if this will give Caleigh time to move the formula through during this break time and give her tummy a rest. So that is the scoop on the never ending drama of Caleigh's feeds.

On to the rash......it's almost gone. Just a few little speckles left over and in a day or two it should be a thing of the past.

On to the TPN, aka... Caleigh's total source of nutrition. With the GI docs advice we have decided to stop cycling Caleigh's TPN off for 4-8 hrs a day. She still isn't growing well and it doesn't make sense to take her nutrition away during the day when she really needs the calories. We are still giving her Lipids (fats) only 3 times a week. Lipids are really hard on the liver and even though she needs the fats to grow we are going to hold off on that. We are still holding out for Omegaven which would replace the Lipids. Once we get on Omegaven Caleigh will be able to have fats everyday. Since Eric and I expressed the importance of Caleigh growing her TPN has been adjusted. She gets more calories, sugar and more time on the fluid. As a result, Caleigh's hair has started to grow, she seems to have more energy, she appears to be sleeping better and she has started bringing her hands up to her mouth and cheeks! It's amazing when someone is malnourished because all their body can focus on is growing and surviving. It's been nice to see these small changes. Everyone assumed that as soon as we added the calories and sugar back into the TPN that Caleigh's liver levels would get worse, but to our amazement her Bilirubin this week is 1..... which is absolutely a god send!

wow those eyes are big

On to the long list of meds......
I'll kinda briefly explain SBBO, short bowel bacterial overgrowth. In Caleigh's tiny belly she has damaged areas of small bowel. These areas don't push and pulsate like they should. This is where her motility problems come in. Once formula reaches these areas, it sits for longer than it should because the muscles are permanently injured. This brings on the bad bacterial overgrowth. Caleigh has been on many antibotics, probiotics, etc. for this in the past. We've tried everything and that darn bacteria shows up every 1-2 wks. This makes Caleigh very gassy, makes her have watery stools and is the reason why she gets a big belly every time. So what to do? Our GI docs consulted with Cincinnati Children's and they came up with an antibiotic mixture that they use on their 'tough' kids. Tobramycin, Colistimethate, & Amphotericin......otherwise known as MUD, an intestinal decontaminate. These are normally very serious IV medicines, but in Caleigh's case she gets them through her G-button. Caleigh will be on the MUD for 10 days and then off for 10 days to see if it keeps the bacteria at bay. She's on day 3 so we will see how it goes in a week or two.

We are sending Caleigh's 3 ft stack of medical records to Pittsburgh Children's for evaluation. They are going to deal with our insurance and then we will try to set a date to take Caleigh up for an evaluation. As soon as I get more details, I will share the news.

I was asked today "what have you learned from Caleigh?" Of course my immediate response was patience, but then I thought about it all day and added some more to that answer......
patience, understanding, coping skills, bravery, strength, endurance, I've learned that I can't control everything, life isn't always fair, and life is definitely uncertain at best, live each day, God is everywhere, and most of all... unconditional love

Rash be Gone, NPO, Car Seat Test

Who fell asleep in their Bumbo chair?

Caleigh's rash seems to be going away slowly. It looks a lot better than it did a few days ago. On Friday, we started using Oxisat cream, another antifungal and it has been getting better ever since. Were still going to wait to change out her CVL dressing just in case there is still the possibility of the rash spreading.

Some more mirror time......

Unfortunately, Caleigh's tummy isn't looking so good despite the rash healing. This morning we tried a glycerin suppository to try to get Caleigh to stool some more. She has been stooling just fine but her belly is big again and it was worth a shot. She did have a few dirty diapers with the suppository but her tummy distention just wasn't getting better. She was also having yellow residuals when we burped her G-button. We called the GI docs and they stopped her feeds. So once again Caleigh is NPO (nothing by mouth). Tomorrow morning the GI doc is supposed to come by and see about starting her feeds again. Caleigh has been on Flagyl, a probiotic, for 10 days now. Eric and I think that it isn't working to keep the bacterial overgrowth from taking over. There are other probiotic options and we will probably start looking into those. She just may be resistant to the Flagyl after all this time.
And finally, after all this time and two failed attempts, Caleigh passed her car seat test! Yay!
You may be wondering 'what in the world is a car seat test?' Well, the test is required of all babies before they leave the NICU to go home. It is to make sure that they can keep their oxygen saturation up and heart rate up. Our NICU requires 90 minutes....... The first 2 times we tried to do this......it was HORRIBLE! Caleigh got so upset, crying and screaming that she could barely breathe. She turned as white as a sheet, started to sweat and because she was crying so hard and couldn't breathe her oxygen sat dropped. I'm talking...... blue lips! So today we gave her a bath, adjusted some of the cushions and straps, got Caleigh to sleep first and then tried the car seat test. Notice the pacifier holder strategically positioned..... Success! Caleigh slept the whole time and then some, ultimately passing the test. We will be practicing car seat time everyday though, just in case this was a fluke occurrence. One more thing off the list in our quest to bring Caleigh home.

yeast..or is it?

Caleigh holding her pink hippo (aka paci holder)
Look how clear the whites of her eyes are & we have a pink baby! Caleigh's bili was 2.8 this week!
She has also started growing just a bit. Caleigh weighs 9 lbs 1 oz as of today.

Well, the ball is still out on whether or not Caleigh has a yeast infection all over her chest. The Nystatin cream doesn't seem to be helping at all and we have been using it since Tuesday evening. So today we started putting Lamisil cream, another anti fungal, on the area. You may have heard of it.....it's used for athletes foot, yep Miss Caleigh will have the shiniest tootsies (or belly) in the unit. Yesterday we did blood work and Caleigh's white blood count is normal. This means that she doesn't have an infection in her blood. We have been closely watching her CVL and so far so good. There are a few questionable spots under the dressing but we aren't going to change the dressing just yet because that just opens the area up to infection.

This morning our GI doc came and met with us about Caleigh going to Pittsburgh Children's Hospital. We got a lot of our questions answered and we just love that man! Eric and I still have a lot of research and discussing to do, but we are at least in favor of taking Caleigh up there for an evaluation and also to get a second opinion on feeding, meds & just general gut stuff. We aren't sure of a date yet and we have to wait on her records to be evaluated, insurance to be taken care of, etc. etc. Until then our docs are going to consult with their connections across the country to get as many opinions as they can about Caleigh's care.

So the plan is to watch the rash, stay at 5ml an hour, and definitely research & educate ourselves.

Holding steady with a bit of yeast

Yep, your eyes are not deceiving you...the dreaded yeast infection. Caleigh has a yeast rash all around her g-button and it is dangerously looming closely to her CVL site. Bad..very bad... If the yeast infection gets into her line we may have to pull it...again, very bad. Her CVL is her life line nutrition wise. We are praying that the yeast goes away, very, very far away! We started putting nystatin all over her torso to prevent the rash from spreading and to also heal the yeast already there. Yeast be gone.....

So we are still holding steady with 5ml an hour. Our GI doc is brave and wanting to up her rate by 1 ml every week. So on Monday we will go up to 6 ml an hour. Caleigh's tummy is still very soft and her stools are looking great. Fussy but manageable.

We got some news from Pittsburgh Children's Hospital today. They are willing to look at Caleigh's medical records and consider her case for a small bowel transplant. They don't seem to think that her PVL is a problem. Eric and I need to talk about the possibility of transplant further. We hadn't even considered the subject because we had always been told she wasn't a candidate. Who wants to believe that your child needs a transplant anyways? If we agree to a consult, we would be flown up to Pitt for 2 weeks and then return home on a waiting list for transplant. It could take months to years for Caleigh to get the transplant. Again I'm stressing this here...... we haven't decided on anything for sure. This is life changing, life altering and most of all just plain scary. I thought I would share this news so that everyone could pray for us to make the right decision and to follow our instincts. Plus here's the moral to the story (and I've said it before)..... if you don't like the answer, ask the question again. Someone will always have a different answer for you.

5 ml

Caleigh made it to 5 ml an hour this morning. She seems to be doing well so far. There will definitely be a waiting period to make sure she is tolerating the increase. Her fussiness has calmed down a bit which is a welcome site lately.

Saturday night the nurses said that Caleigh didn't sleep a wink and was upset the whole night. So on Sunday, I roomed in with her all night long. She fell asleep around 11pm and then woke up at 2:30am went back to sleep about 20 minutes after that and then slept until 7:30am! 7 1/2 hours of sleep! I think the difference was the dark quiet room. As soon as she fell asleep I put her in her crib and then when she woke up at 2:30 I rocked her back to sleep and then put her back in her crib. So the fact that she loves being held isn't the problem. She is a restless sleeper mainly from her gas pains. So when you add the lights and typical noises of the NICU it just doesn't equal a good nights rest. It was a great experiment and a look into what might be in store when we get to bring Caleigh home. I didn't get much sleep, maybe an hour or so, but that's what mamas do.

I had a thought this morning with the weather getting warmer by the day....
I remember when I was pregnant how excited I was about all the firsts that were to come and one of the more exciting was taking our baby swimming for the first time. Whether it be a tiny pool in the back yard or infant swimming lessons, it was something that I dreamed of. Silly to some, I'm sure. I thought about that this morning and was heartbroken because Caleigh can't get in the water due to her central line and g-button troubles. She of course doesn't know the difference and her first time will still be her first time. All of these firsts seem to be on hold and always have rules & restrictions before we can even attempt them.

Just a thought....

Valentines & a Half Birthday

Happy Valentines Day & Happy Half Birthday to our little girl!

Caleigh's very first Birthday cake! Too bad mommy & daddy got to eat it....Thanks Linda & Caroline!

I know, I know...I always say it, but wow, I can't believe Caleigh is 6 months old already! What a whirlwind year it has been. We are so blessed to be able to celebrate such a milestone with Caleigh, but even more so are the moments each day that brought us here.

Here's to 6 more beautiful months to make a year!

Here's Caleigh not impressed with picture time.....

So we've made it up to 4ml an hour and today is our last dose of Xifaxan. So after today we sit and wait...waiting for Caleigh's tummy to show signs of the bacterial overgrowth that makes us ultimately stop feeding her every time and then start from the bottom all over again. We are just trying to figure out a good probiotic that will work with the bacterial overgrowth. Trial & error seems to be the game. We still have a lot of tricks up our sleeve if this particular one doesn't seem to work out.

We hope everyone had a lovely valentines day..... xoxo

26 wks

A lot has happened in the past few days. Talking with potential transfer hospitals, meeting with our doctors and speaking for the March of Dimes Signature Chefs Kick Off. So lets get down to it.....shall we?

Other Hospitals: Pittsburgh Childrens, Boston Childrens, & Miami Childrens

So each of these hospitals offer the same kind of care we are receiving at Cooks except the fact that they are large transplant centers. We still don't know if Caleigh is a candidate for transplant because of her PVL. Our doctors are calling around and discussing the options with these institutions. Transplant would be LAST RESORT and there is still so much to do before then. Boston Childrens is one of our first choices because they have Omegaven (read this link....it's uber important) and a protocol set in place. A few months ago Eric and I brought the info about Omegaven to our Neo. We have approval through Harris Methodist, but we are still awaiting approval from Cooks. We have the best neonatalogist there is fighting for Caleigh and succeeding in getting Omegaven for her. We have a few more hurdles to overcome with home health (since Caleigh would be going home on it)and then she should be able to get on it within the next few weeks. Caleigh's direct bilirubin is 3.5 this week. This is amazing! At the begining of January her level was 13 so we are making some great progress. BUT, and this is a big one, Boston's protocol states that the direct bili needs to be at or above 2.0 to be able to get Omegaven. In the time and effort it will take to get up there, probably 3 or more weeks, Caleigh's bili might possibly be lower than their limits and therefore she wouldn't be able to get on it. Theoretically making our transfer in hospitals not logical at this time. So what does this mean.....? Well, we are holding tight for awhile, looking into transplant hospitals if necessary and still waiting to bring our little girl home.

Next item of business is the Care Conference.....

Tuesday at 1, Eric and I sat down with all of our 'team.' Neo, GI, Case Worker, Nurses, Pharmacist (surgery couldn't make it, but sent their thoughts) So what did we get out of the 2 hour meeting? Well, Caleigh is loved and cared for by the best. With a lot of thought and prayer we entered the meeting hoping for the answers we were looking for. After all, this is our daughter's life we are talking about here. We didn't want to make any rash decisions. Everyone was extremely helpful; we talked about other hospitals, the good and bad of transferring Caleigh and our expectations as her parents. As I always say: Doctors are people too. They don't always have the answers, no one will know when Caleigh will be able to get off of IV nutrition. Every child is different. It could be months it could be years & possibly never. We expressed our concerns over her growth. Caleigh hasn't really gained weight in the last month or so, she's 8lbs 13oz today. GI is going to watch her growth, monitor her TPN, and increase the calories that she gets through her IV. Lately they have been optimizing her IV nutrition to benefit her liver function and it has worked wonderfully, but at the same time we need Caleigh to be growing strong. We also voiced our opinions about one of the GI docs that hasn't been helpful, useful or available at all. This person is probably the main reason Eric and I started looking elsewhere for care. As of now we don't have to deal with that doctor anymore. Which makes our decision to stay close to home ideal. We talked a lot about the what ifs, Omegaven and the future. It's hard on a day to day basis to talk with most of the doctors because of the noise, trying to keep Caleigh happy while talking and hoping your at the bedside when the docs come by. 6 mths in the game though we can pretty much get in touch with whomever we want whenever we need. All in all, Eric and I were very pleased with how things went. It's so nice to sit down in a quiet room and converse with the people that care for your child.

On to the fun stuff...well sorta

I was asked to speak at the March of Dimes Signature Chefs Kick Off. This is where all the committee members get together listen to our stories, have a little breakfast and then they toured the NICU. Lets just say that I'm pretty sure I didn't get a word out straight with all the blubbering, crying & tears. Have you ever tried to talk while crying? Not pretty.... Anyways, the Signature Chefs Event is amazing. Last year they raised over $250,000 dollars for the March of Dimes just at that one event. Hopefully when I'm more removed from the situation, and the emotional reality of our premature baby isn't so fresh months and years down the road; maybe then we will be able to tell our story to more people and make prematurity & birth defects a thing of the past. Trust me, I will be giving out more info on this event as it gets closer. It's a must!

A little bit about RSV.....

Caleigh has been getting RSV shots since October, these are not quite vaccinations, but rather infusions of live antibodies subcutaneously that are designed to protect---though not vaccinate you against---respiratory syncytial virus, which is what causes a common cold in most of us but can land preemies and others who have lung damage, on ventilators. This is a preemie parents nightmare. With Caleigh's immune system weak we just can't chance things. RSV season runs from October through April. We would love for everyone to meet and snuggle Caleigh, but at this time we just want to bring our baby home and be able to stay there. This all comes from dear NICU friends of ours who recently had to return to the hospital due to RSV. We pray that their son gets better soon and all returns to normal within their home. So we hate to be the barrier of bad news but we promise that Caleigh will be able to come out and play soon, but only when her little body is ready. Wouldn't you do the same?

Last but not least... how's Caleigh?

We are currently up to 3ml an hour continuous feeds. The goal is still up to 5ml an hour but she must be tolerating it and her medications need to be stable before they see her out the door. I could guess a date or two, but I'm just not going to do it right now. She is still very ill, fussy most of the time and can't sleep. The NICU is so loud for a big baby to be sleeping in. I can't wait to get her home and get a routine started with her. The end of last week we did an abdominal x-ray, just part of the routine when her tummy is distended. Anywho, the radiologist report came back that there might be a possible femur (thigh bone) fracture just because part of her leg was showing in the tummy x-ray. So they ordered her arms and legs to be x-rayed and what'ela know there it was. Caleigh's left femur and right radius (which is her wrist) has been fractured at some point in the past. It is old, straight and healed up. We don't recall her favoring theses areas at any time & there wasn't any swelling. So there is nothing we can do at this point but be very careful with her. Caleigh's bones are fragile due to the lack of nutrition from not eating. Just another side effect of TPN that we have to deal with. Other than this new issue to add to our long list of things to watch, Caleigh seems to be doing about the same. No dramatic improvement, but at the same time she isn't back sliding.

Wheeewwww, it's been a long few days, thank you to everyone that offered help and support to our family. It truly means a lot to us. Your prayers have helped us make the right decisions for now and we are blessed to have so many people that care for us on a daily basis. xoxo

2ml & a Trip to Holland

Checking in with everyone after our lonnnngggg post last time. We started Caleigh back on her feeds, 2ml an hour. She still seems uncomfortable and fussy, plus she isn't sleeping well. Our care conference is scheduled for Tuesday at 1pm. We are going to talk about our options and a possible move to another hospital. I don't want to go into a lot of details just yet, but we are working really hard and focusing all of our time on this matter. God willing, we make the right decisions for our little girl. Thank you for all the advice and references. And most of all the prayers that continue for our family.

Here's a story with a lot of metaphors and a great description of what we are going through...
Welcome to Holland

10ml's & back to the starting lines

All of these pictures were taken on Monday, in Caleigh's new Bumbo seat. She has great head control and can hold herself up the whole time!

So I didn't want to jinx it, but on Monday we made our goal of 10ml an hour. Talk had turned to us going home this coming week and then Caleigh did what she always does......got her big distended belly today. So in an effort not to jinx the situation, I hadn't posted in a few days, but with Caleigh we just never know what turn she will take.

Yesterday, I thought things weren't working, told the proper nurses, doctors, etc, etc. and what'ela know this morning I showed up at shift change and stopped her feeds. Green stuff coming out of her g-button, yellow stool coming out from around the button. Once I notice a change in her it usually takes about 2 days for everything to come to a halt. We went for another contrast study at Cooks, a barium enema. Nothing new, dilated loops of bowel... yadda... yadda.... yadda. Same ole, same ole. So what do we do??? No really..anyone know out there? Eric and I are obviously frustrated, tired and about a million other emotions right now.
So Caleigh got some morphine for the pain today, had to have an arterial stick to draw blood, leaked watery stool all over me, stopped her feeds, & put her button to gravity drain. GI came and changed some of Caleigh's meds. Took her off of the Flagyl, they think it isn't working, and started her on a different type of probiotic, Xifaxan, that isn't absorbed into the bloodstream so it hangs out in the intestines. They have also decided that Caleigh's new goal should be 5ml an hour. GI said that it isn't doing us any good being in the hospital and going through this every week. Maybe 5ml will be the magic number for now.

I asked for another care conference today out of frustration. I don't know where it will get us but maybe everyone will be on the same page when we are done. We love everyone at Harris & Cooks, nurses, doctors, surgeons, staff....we consider them family but Eric and I have been looking into other options, hospitals, clinics, etc. We want a short bowel specialist. If this was your child what would you do? Say your child had a 3rd arm and no one could get rid of that arm for you, but there was this hospital that specialized in 3rd arm removal. Wouldn't you want to take your child there for the best care? Just something we are tossing around. No decisions made as of yet.

Caleigh's Neurologist came by to see her today as well. Her head has grown 2cm since the last time we saw him and he was really impressed. She is still behind, just like the rest of her body but he says that is a good sign. When babies are as sick as Caleigh their brain stops growing. He says that Eric & I are the reason that Caleigh has developed as well as she has so far and to keep up the good work. So that was a bit of good news throughout the not so good day.

Anywho...I know tomorrow will be a better day and the day after that will be wonderful as well....

8 ml's & counting

Snoozing the day away. I'm pretty sure she caught a fly at some point.....

So I finally got off my tuckess and brought the big camera to the hospital for some quality family time. Pics below of course...

Caleigh has done wonderfully the past few days. She is up to 8ml an hour and we will reach 10 ml an hour by Monday. They plan on holding steady there for awhile and letting her belly adapt to the volume. Her stools have been amazing little, brown & formed, but (and yes with Caleigh there is always a 'but') she has gone completely in the wrong direction being constipated all the time. She pushes and pushes and all she gets are little raisinettes. So I called GI and they backed the pectin down to 2% and if it isn't better tomorrow then they will go back down to 1%. We don't want her to get backed up. I think the pectin is really doing it's job! Overachiever.....

Do I even have to say it......who does the prettiest girl in the world look like?

Everyone has been asking what Caleigh is up to in the developmental front lines. I forget about that sometimes with all the belly worries that we have. She does new and amazing things daily. Caleigh weighs 9 pounds 1 ounce. Right now she loves to be bounced, 'flown' around & generally moving all the time. You stop bouncing she'll start complaining. Caleigh can hold her head up great now and for a really long time. She loves to hold her head up during the bouncing too. Her left side has been her weaker side, tone wise, for a long time. So we have really been stretching and working on movement and just in the last few weeks she has really started to bring her left arm forward, and push and grab with it too. I'm not sure if I have explained this before but when you have a premature baby it usually takes about 2 yrs for them to 'catch up' with full term infants. Also, we don't judge Caleigh's development by how old she is. She is almost 6 mths old, but when you have a preemie you have to go by their estimated due date (Nov. 1) to judge what they should be doing developmentally. So we look at what a 3 mth old would be doing instead of a 6 mth old. This is called 'adjusted' or 'corrected' age and so far Caleigh is only slightly behind with this. Caleigh is behind developmentally mainly because of her illness, surgeries, prematurity and most of all her environment. When you have 5 tubes and wires attached to you all the time it's kinda hard to get on the floor and have tummy time; especially when your belly is always hurting. It just isn't the same interaction that a normal baby has and that's why we think Caleigh will really blossom when she gets home.

home..hmmm

Here's Eric making Caleigh chubby cheeks....

It may be to soon to start the home talk again but when we are holding steady at 10ml and hour and cycling our TPN off for 8 hours a day things may start leaning towards home again. Caleigh is on Flagyl for the bacterial overgrowth that occurs in her intestines. She is doing a 2 week dose and then we will take one week off so that she doesn't get resistant to the antibiotic. I suspect that we will know if home is in our near future if she does well for that week off the Flagyl. Hopes are high again but why not?

Daddy's hand.....

I had a pretty lengthy discussion with our GI doc and Neo about my breastmilk that we have frozen & stored. And after several questions we decided that Caleigh won't ever be able to have any of the breastmilk. So Eric and I went through the milk at home and took 12 bags an estimate of 500 bottles to the Mother's Milk Bank. It was sad for me to finally realize that Caleigh won't be able to have it. All that hard work, the only thing that I could do for my baby at that time and she can't have it. Going through so many bottles I thought about the every 3 hours routine and how much work it was. We also went through the milk stored at the hospital and there was 8 bins of milk that will be picked up by the MMB on Monday. I hope that our family can help others, who for some reason can't nurse but their baby needs the amazing qualities that only breastmilk can provide.

Thanks to everyone that donated to Caleigh's March for Babies Team so far.
And a super thanks to Caleigh's Mimi, Beverly, Donna H., Diane, Aunt Donna & Meagan for signing up to walk with us!