TPN Induced Obesity?

Well, it's not that serious, but at the GI appointment our doc decided that Caleigh was gaining too much weight and needed to slow down on the growing. It's ironic to us because the first 6 months of Caleigh's life was spent malnourished to help save her liver. As of today Caleigh's direct bilirubin is 0.1 and total is 0.3. Liver is fine and we have been pushing the calories and fats since the end of January. Caleigh's growth chart goes from nothing to shooting straight up. It's almost reaching up to the 5th percentile, but not quite. As of today she weighs 16 1/2 lbs. and is now in 12 months clothes. I never thought we would make it out of size one diapers, but we've already gone up to 3's. With Caleigh getting more formula (up to 13ml an hour now) she seems to be absorbing well enough to be gaining weight. So the solution is to again cut back on the TPN. We went down on the rate and now Caleigh is only hooked up for 20 hours a days. We're thrilled. It's almost liberating. The schedule is to keep going up with formula and down with TPN.

A few days ago Caleigh got to try carrots and she seemed to like them ok. She really doesn't know what to do with all of it, but we are determined to get our baby to eat by mouth at some point. Sometimes when we give Caleigh the food she just cries and screams but other times she chews and swallows. So well just try, try, try again.
We had a good weekend filled with car trips to the grandparent's house and to cousin Brody's first birthday party. Today we had a really good visit with my Uncle Doug & Aunt Michelle & their two girls Brooke and Jordan. They came all the way from Missouri just to visit us......and the rest of their family & friends (wink, wink). We hope to see them again really soon. So Caleigh did really well with all the traveling & visiting and it gives us the courage and desire to get out and about a little more before our October hibernation.

Thanks to everyone that has RSVP'd for Caleigh's birthday party. Looks like we will be having a full house! And I'm pretty certain we will need a bigger house!

Mommy or Daddy or Both?

Eric @ 1 Year, already our little Fire Fighter

Holly @ 7 Months, taken by Caleigh's great-papaw

So who do you think Caleigh looks like? I've added a poll to the sidebar. Answer away!

Oil, Trips, Liver & Applesauce

Yesterday, we loaded Caleigh up once again and headed to Fort Worth to see our GI doctor. This once a week thing has become quite the tradition, but we will be super happy when we can take Caleigh to the zoo instead of the doctors office.

This office visit was probably the best we've had in a long, long time. It's time to start increasing Caleigh's formula intake. We will go up 1ml twice a week. Today we are at 11ml an hour and doing wonderfully. We also got some lab work back and Caleigh's liver numbers are now back to normal. Direct Bili 0.2, ALT & AST are normal as well. Her liver has bounced back after this last surgery and we feel very blessed. It was decided that we should raise the Imodium dose and because of that increase Caleigh had her first 'pudding' stool this afternoon. I know, I know how many ways can you describe a poopie diaper, right? She seems to be tolerating the increase and has been in a pretty good mood today.

Applesauce?

Eric and I broke the news to our GI doc that we had started giving Caleigh Oregano Oil for her bacterial overgrowth. He was impressed with the decrease in stools per day. Also he was excited about how well her diaper rash had cleared up. When he listened to Caleigh's belly with the stethoscope, he heard wonderful bowel sounds that were normal in tone. (When you have bacterial overgrowth the sounds are higher pitched) So he was very impressed with the improvements that Caleigh experienced and wanted to get the information about the oil so that he could do a small study himself. Good thing we got approval and pushed back using antibiotics a little longer.

On to the fun stuff.....So Caleigh is scheduled for a swallow study at the end of August. This is where we will see what Caleigh's baseline is as far as what thickness of liquid & food by mouth she can take. It will show us if she is aspirating her food and if she gags and chokes then we will at least know what to work on as far as feeding therapy. Other than the famous Popsicle Day, Caleigh hasn't had any food & she hasn't had any liquid since December. So how is she supposed to be able to swallow when she doesn't know what food is and what to do with it? That's what I asked our doctor and then suggested that we start introducing foods as tastes until the swallow study. He suggested Ketchup, so last night we tried it........and Caleigh hated it! His thought was that the taste will stay with her & it will make her salivate more causing her to learn how to swallow more at a time. Well, the Ketchup wasn't a big hit so tonight I tried applesauce. Caleigh seemed to really enjoy it and she probably got more than a tastes worth. She was chewing away and of course had it everywhere. Caleigh is by no means eating food by mouth yet, but this is a positive step towards her eventually doing just that.

Ketchup Face

Over the past week we have been the traveling Gray Family. Caleigh was able to go visit family at their house, a quick stop at Old Navy and we actually took her to a restaurant for lunch. Mexican food of course. Caleigh wasn't impressed and she slept the whole time. There were little things here and there that we had to overcome, but at this point something always comes up when we're out of the house. It was really nice for us to be able to get out as a family and do 'normal' things. This weekend we have a trip to Grammie & Popaws & a trip to Cousin Brody's birthday party, planned.

Who can play the quiet game?

We can! Caleigh is doing so well right now that we just don't want to jinx it. Of course we encourage Caleigh and cheer her on. We just don't give details.In the past few days we went to see our Nephrologist (kidney doctor), we are good to go for another month and we went to see our Pulmonologist (lung doctor), we are good until October! No oxygen and no breathing treatments and we might just get by without needing the RSV vaccine. We go in October to get the Flu shot and I'm pretty sure the Gray Family will be home bound all winter preventing illness.

Caleigh's bed, It's a Arm's Reach Co-Sleeper.
We got it as a gift at our baby shower. This crib has been a Life Saver. If you are into having your baby close by at night, this is the castle of cribs. With Caleigh's pumps and medicine schedule, having her next to us makes our job so much easier. We love it!

Tomorrow we go to the GI doctor. Most likely we will increase the dose of Imodium to help Caleigh's liquid stools. They have gotten a tad bit better, but nothing to cheer over in terms of consistency. We are also doing 22 hours of TPN instead of the 24 we have been doing since January. Whooho! A whole 2 hours off the pump! Caleigh is still hooked up to her feeding pump during that time so it isn't complete freedom, but exciting nonetheless. Caleigh is still getting 10ml an hour and doing amazing. I feel confident that she can make it to her full feed which would be 30ml an hour. These things just take time and almost a year of 'time' later, we have the patience of a Monk.
Ahhhh....the hiney rash.....SO MUCH BETTER! Here's what we did: So we took Ashley's advice and started the Colloidal Silver and Cornstarch, something we haven't tried before. The day before I did some research looking for anything to help bacterial overgrowth besides all the crazy antibiotics we have used in the past. If we don't get the bacterial overgrowth under control then the liquid stools won't slow down and Caleigh's diaper rash won't get better. I've been on a 'Natural' kick lately anyways. So a couple of the short bowel kiddos that I keep track of and also are apart of the short bowel group on yahoo suggested Oregano Oil. I like spaghetti as much as anybody so I thought.......why not? Apparently, Oregano Oil is a natural anti-bacterial, anti-fungal, & anti-inflammatory. I did a little more research and you can't use just any Oregano Oil. A lot of people with IBS and other gastric problems use the oil and they recommend Wild Mediterranean Oregano Oil. I guess it is more pure than just any old oil. I definitely looked into side effects and couldn't find any. So we bought some and started giving Caleigh 2 drops a day. Immediately her gas pains have slowed and her stools have gone from 13 or so a day to 6. So with her stools slowing down her tush is able to rest some in between diapers. Combine that with the Colloidal Silver & cornstarch and we have a happy hiney again. We will see what our GI doc says about the Oregano Oil. I didn't exactly ask him first. Maybe it's easier to say sorry, & hey it's working, than ask permission?

I've got a few pics of Eric and I as babies that I'm working on getting up. It should be fun to compare. Also, we have been working on getting Caleigh some alternative therapies in terms of developmental work. We are having trouble with the funding, of course. Insurance is being a pain and I'm pretty sure they won't pay. As soon as I can put together a post about the therapies I will. It's very interesting stuff and I'm really excited about the possibilities.

A week full of Rounds

This week Caleigh got to visit 3 out of her 8 doctors. We've been super busy. Next week we will be visiting 3 more. That seems to be the going rate! We went to the GI doc, Pedi and Surgeon. Caleigh got her 9 month shot late at the Pedi. Being in the hospital she never got it. So now she is all caught up. Caleigh got an A+ at the surgeon and we don't need to go see him unless something comes up.

Over the past week Caleigh made it up to 10ml an hour. She is doing really well with the increase and thinking back she hasn't had that much per hour since early January and that only lasted a few days. We've been on 10 since Wed. and we plan on hanging out there until we get Caleigh's liquid stools under control. On Thursday we started giving Caleigh Imodium 3 times a day. Which brings the daily medicine total up to 9 different kinds. Ughhh.....Oh well she needs them. The Imodium should help slow things down and let it sit in the colon a little longer than it is, helping things absorb better. So far we haven't seen any improvement. So if the liquid craziness doesn't get better by Monday we are looking at our old friend bacterial overgrowth. Caleigh's tummy is all set up for the BO because of all the antibiotics she has been on since surgery and if any part of the intestine isn't moving things along, there is a chance for the bacteria to set in.Caleigh's diaper rash is still being a bit of a pain. The rash part is gone we just have blisters and broken down skin to deal with. So far Caleigh doesn't seem to be bothered by it, but it sure looks like it hurts. We've ordered a tube of Ilex paste and we should be able to pick it up on Monday. You basically put the paste on thick, let it dry and then put vaseline over it. During each diaper change you only wipe off the vaseline and not the paste. This is supposed to protect the skin and let it heal. Right now each time we wipe it just seems to be making it worse. A lot of the Hirschprungs kiddos use the paste and I've heard great things about it so I am very optimistic. At this point everything we are using, even corn starch, isn't sticking to Caleigh's bottom anymore. So I hope this works out.

Caleigh on her tummy......something that I have really been serious about lately. Before Caleigh's surgery she just wouldn't tolerate being on her tummy. Either her g-button was leaking and hurting or we were recovering from a surgery. So tummy time just didn't happen much and if it did, Caleigh would scream the whole time. So every chance we get we are putting her on her belly. Sometimes she screams and sometimes she is ok with it. Along with tummy time comes head control. If Caleigh uses the muscles to pull her head up off the floor then overtime her head will become more controlled. So we've been rolling around on the floor all week trying to convince her that she loves to be on her tummy........hmmmm...we haven't exactly succeeded yet.

+ Caleigh had her 11 month birthday on Tuesday. The count down to Caleigh's first birthday is getting shorter. We just can't wait to celebrate. Eric and I have started planning for a small shindig at our house. Hamburgers...cake...all the fun birthday stuff. I'm planning on doing an evite so if you want one please email us.

Our Very First Blogoversary

One year ago today, I began the world of blogging. Little did I know what a huge impact this blog would have on Eric & I, family & friends and people we have never met before. The love, prayer and belonging that we have received through this website is just amazing. It's not easy to live a year in a medical bubble, not really living life the way you did before. This blog has made that time easier for us. Connecting our family to those of you that care. Introducing Caleigh to those of you that wouldn't have known her otherwise. Knowing that we aren't exactly alone out there. And learning of other miracle children that have made it through similar situations.

This post makes 159 entries to Caleigh's blog. I started out with a paper journal at 18 weeks of pregnancy when we got the diagnosis of Gastroschisis, but I found it hard to add the photographs I wanted. You know me, lover of all things photography...... Here is the very first entry I ever posted:

Gastroschisis

A few days after we got back from vacation our doctor called us and said that some of the blood-work that I had done before we left came back abnormal. So we went in and they did a sono. I was 18 weeks pregnant at the time. Our doc wanted us to go to see a high risk pregnancy Dr. So we had to wait 4 days not knowing really what was wrong. We went to the new doctor and she told us that our baby has Gastroschisis. Which is when the stomach is closing up, around 5-8 wks of pregnancy, and it doesn't close all the way leaving a hole with bowel outside of the belly. This isn't life threatening or a long term problem. They don't know what causes it either. It usually occurs in first time parents and young parents about 1 in 5000 births, but they just don't know what the cause is. Our baby will be born at least a month early if not sooner and it will go straight over to Cooks for surgery to put everything back inside and then to the NICU where it will stay for at least 4 weeks learning how to eat normally. Things have been pretty crazy lately, but we are staying really positive about everything. We have been shopping for nursery furniture and staying busy with everything baby! They think we are having a girl but aren't sure. Our little peanut isn't really cooperating. Our next appointment is on July 5th and I will let everyone know an update then.

I love how planned everything was supposed to be! 'Born at least a month early, stay in the NICU for at least 4 weeks, & not a long term problem' It's just funny to me looking back. That positive denial still gets me through each and every day.

I have been told numerous times that we should turn this blog into a book. I plan on doing something to that nature. Mainly for Caleigh to have something in print. If any publishers are reading this let me know....LOL.... No seriously, I do plan on making at least one copy.

This blog has been a therapy for me. Somehow putting all the details in writing, getting our story out there; has really changed how I feel about our new way of life. I think this is the best scrapbook anyone can have for their child. Can you imagine if I tried to go back now and remember everything that has happened! I can't even remember what went on the week before much less 6 mths ago!

After making it a year in the blog world, I think I will stick around a little longer. As long as Caleigh needs me too, and as long as I don't get a real therapist! Now, I think I will celebrate by staying in my pj's all day, playing with our baby girl and definitely staying out of the Texas heat.

Happy Blogoversary!

Drama in the Diaper

Caleigh will be a teenager one day & you know how teens are about naked baby pictures! This was just too cute to pass up. Koko decided to join in of course.

So on Friday, I put a call into our GI doc and told him about Caleigh screaming after we give her the Reglan and how her output has been really high. Of course we mentioned the diaper rash. We knew that she was 'dumping' or the food wasn't absorbing. Also, Caleigh's g-button was really red and smelled funny so we were concerned about that. So he ordered us some antibiotics for the infection that is probably going on around her g-button, liquid & cream. We aren't giving Caleigh her dose of Reglan at 11pm, but we have continued the other doses and she seems to be doing much better. Last night she slept great. Her diapers have slowed down, and her rash is getting better as of today. Last night Eric and I changed out Caleigh's g-button. The one that she had in was really long stemmed and the diameter around wasn't big enough. Our surgeon had put a long button in to anticipate Caleigh swelling after this last surgery. Good thing! So we changed it out because the hole was leaking a lot and probably the cause of the infection.

Our next appointment is on Thursday, but if things aren't better we will go in sooner. Right now we are at 8ml an hour. A recent record for Caleigh, so don't let her in on the little secret.

As far as the diaper rash we got all kinds of replies about what to do. We had already used most of the suggestions before I even posted out of frustration. Caleigh's tush was broken down and the nothing was staying on her skin. Poor baby. Here are a few just in case you might be in our situation.

- Ashley wrote 'collodial silver, butt paste & corn starch,' we have the butt paste but haven't ever thought of collodial silver & corn starch. Good Suggestions, we will be trying!

- Donna H. wrote, 'Happy Hiney,' we've been through a tub of this already. It's actually been called something different at every hospital we have been too. Happy Hiney is from Cooks. In Pittsburgh it is called Pitts Paste. Good stuff.

- Amy wrote, 'Dr. Smith's,' The Gray Family Loves Dr Smith's. This is our go-to diaper rash cream, but it just didn't cut it this time. We already used up a tub & a half.

-Jenn wrote, 'Bag Balm or Beaudreaux's Butt Paste,' We've already used up a tube of Beaudreaux's but the Bag Balm idea is great and we used some for about a half a day yesterday.

- Racheal wrote, 'Triple Paste,' We used up the tube you got us for our baby shower! I remember you telling me how well Lily did with it. I had high hopes, but it just didn't work. I think Caleigh's hiney was a little to far gone.

-Emma wrote, 'Canesten Cream and wash with cotton instead of wipes,' as soon as the diaper rash got bad we switched to washcloths and warm water for Caleigh's little hiney. The cream is a good idea if there is signs of yeast. In Caleigh's case her little tush is broken down from the dumping. Good Idea.

-Donna E. wrote, 'Desitin & Ostomy Powder,' we use the ostomy or stoma powder around Caleigh g-button so as soon as the rash started we began to put the powder on as well as a barrier spray. I used some Desitin in the beginning of this whole thing, maybe with the powder, but at this point I don't remember. It's a great idea and simple to try.

Our nurse told us to leave Caleigh without a diaper as much as possible. So the past two days we have been going commando. Hence the picture..... Anyways, she also suggested Calmospetine cream. It's a skin protectant and kinda like calamine lotion, pink and everything. So last night we started using it and also A&D ointment, which is also a skin protectant. Caleigh's tush looks great this morning and seems to be getting better every time we change her diaper.

Thank you so much for all the suggestions!

So whew! That's been the diaper rash drama over the last week. I think we finally got a grip on things and hopefully Caleigh will be rash free soon!

Time Flies When Your Having Fun

Can I just say how nice it is to be home. I mean, really....really nice. Things have been going great since my last post. I guess so great that I haven't really felt the need to post much of the daily grind. Caleigh has been in such a good mood and smiling more than ever before. We've had a couple of things pop up since this weekend, but nothing terrible.

First thing is that Caleigh gave me a little scare when burping her g-button early Tuesday morning. The residual was a light green color. Any short gut parent knows that green is bad. So we made an appointment with our GI and went in that day. Of course once we got there it had cleared up. I was having hospital flash backs and dreading the advice to go to the ER, but we all decided that Caleigh just got a little backed up and everything seems fine. Her output has been really high and we have been changing her diaper any where from ten to seventeen times a day. Forget the cost of gas! What about the cost of diapers! Geez..... Not to mention the fact that Caleigh now has the worst diaper rash I think she has ever had. We've been coating her little tush with everything possible, but if anyone has any advice please let us know.So at the GI appointment we decided to put Caleigh back on the Reglan to help her motility. The green residual was a sign that things just weren't moving along in the right direction. Since starting the Reglan Caleigh has been up screaming a lot at night after her 11 o'clock dose. So we are going to watch it and if it doesn't get any better we may want to take her off of it. It's so nice to be able to add one medicine at a time and be able to see what effect it has on Caleigh. That way we know if it is working, hurting or not doing anything for her.

You might notice that Caleigh's eyes seem to be a bit crossed in the top pictures. This is something new that she has been doing so we made an appointment with the eye doctor. Well see what he has to say about it. The appointment isn't until August 8th though.

So here are some numbers to run by.....

6ml an hour of Neocate + 3% Pectin, that's the amount of formula Caleigh is getting and we will go up to 7ml tomorrow.

15 lbs, that's how much Caleigh weighs as of this morning. We finally bought our own baby scale. So that we can get a daily weight.

3, that's the number of naps Caleigh has been taking a day......in her own crib!

17, that's how many size 3 diapers I changed yesterday. Whew!2-5, that's how many minutes Caleigh took her pacifier last night & really sucked on it! I went through all the pacifiers I had bought and this one had the shortest nipple. So were trying and working on it and I just had to take a picture!10, that's how many minutes Caleigh will stay in her Bumbo. She's holding her head up so much better now. Still a little wobbly but doing much better.
5, that's how many days till Caleigh's 11 month birthday!

Here are some links:

The pink wrap around Caleigh's tummy. It's a life saver & a line saver! Happi Tummi

Little Carter from Plano. His mom keeps a website for him too. Check it out & pray that they get to leave the hospital soon and make it all the way back to Texas. He is such and doll and check out those eyes!

Independence Day

As many expected, The Gray Family is home. H-O-M-E. We made it to our destination exactly one month to the date, and believe me that was long enough. Caleigh's first 4th of July had an unexpected meaning this year. Independence, Freedom....all the fun words of the national 4th applied to our dear Caleigh this year. Daddy was at work, Caleigh didn't get to see any fireworks....neither did mommy. We came home and slept.....alot. No one to bother us, wake us up for vitals, doctors to talk to. Sleep, good ole, sleep.

Actually, Eric and I didn't really expect to be bringing Caleigh home so soon. We thought at least another few weeks to work on feeds, but I guess our doctors are convinced that we can handle it. We think we can too!

So as of today Caleigh is is on full strength, 20 Calorie Neocate formula. She is getting 3ml an hour and tomorrow we will go up to 4ml. Once we started full strength formula Caleigh's bowel movements slowed down. She is having a lot of gas pains and yesterday we gave her a suppository to help move things out. It seemed to relieve some of her pain, but not all. So at 5am when she woke up screaming we decided she needed another go at it. The stool coming out is so normal it's scary. Caleigh had a pretty big diaper and seems to be feeling better again. Her gas pains are still evident and I plan on calling our GI tomorrow to see what we should do. We are already giving Caleigh gas drops, but maybe we are missing something.


Another problem we are having is that Caleigh decided to start teething around the same time we started feeding her. I'm not talking one tooth.....it's all of them! Her gums are so hard. Caleigh doesn't have the coordination yet to bring her hands to her mouth purposefully. About a week before Caleigh's surgery she stopped loving her pacifier and now gags when we try to put it in her mouth. The only thing she will let in is our fingers. She loves it and chews like crazy. It makes her feel better. The only problem is that it hurts our fingers! Did I mention her gums feel like rocks! Eric and I only hope it doesn't take long for Caleigh's teeth to come in. It's hard to differentiate between belly pain and tooth pain. This normal baby stuff is for the birds!

With all of the oral aversion problems Caleigh is having it's made me think. I should invent a pacifier that has stages of nipples. You see all the pacifiers out there have really long nipples and as soon as you reach a certain point in Caleigh's mouth she gags. If I made a short nipple binky then Caleigh would still have the ability to suck. She will suck on our fingers when we put it in the very front of her mouth. We were told by the speech therapist in the hospital that Caleigh probably won't get back the ability to suck. She will just have to transition to chewing. As I've said on here before, I dreamed of breastfeeding and when that was gone I started dreaming of bottle feeds. So this new information has made me sad. We're still going to keep trying though! Letting Caleigh 'tell' us what she wants.

Don't tell Caleigh, but.....

we might be discharged tomorrow!

Caleigh is doing really well from a surgical point of view and as far as advancing feeds we can totally do that from home. We are really excited. Today we will start full strength formula and tomorrow go up to 3ml an hour. After that it is smooth sailing for the weekend.

Unfortunately, we will be missing our prime view for fireworks, but I think we can handle the loss. Making it home for the weekend seems to be a great trade off.

We'll see what happens, but the discharge is already in the works.

I'll take formula for 200 Alex

10 minutes, that's how long Caleigh's contrast study took. It went in and out a little too fast. Even though Caleigh has around 250cm of small bowel her label is still short gut. Yesterday, we did the contrast study in the morning followed by a liver, gallbladder & kidney ultrasound. By that afternoon we started pedialyte at 2ml an hour.

Today we got the ultrasound results back and Caleigh does in fact have gallstones. Mainly from not eating, and the ever so wonderful results of living off of TPN. Caleigh's liver levels have been a bit elevated since surgery and I believe her last total bilirubin was at 1.9. Still not bad and everyone is expecting that number to drop once we start some serious feed advancements. The gallstones are just going to hang out and we will probably wait and see with them.

This afternoon we started Caleigh back on formula, half strength or 10 calorie. This is also at 2ml an hour continuous and so far so good. If the formula starts running right through Caleigh and not absorbing we will add medicine to slow things down. Opposite of our speed things up meds from before. Caleigh has actually been in a better mood since we started putting food in her belly. Again, this is completely opposite of her past reactions. So we will continue to advance the feeds this week and see how things go. Who knows we may be home by next week sometime. Wishful thinking of course.