Last day of the year

After writing my Wrapping up 2007 post I realized I haven't updated on Caleigh's progress in a few days. Caleigh's feeds are going well and she is up to 10ml and hour with 3/4 strength formula. Still on the continuous feeds and will be for a long time. She is still having the poopie diapers and we get so excited when she has one! A new development is that she has her days and nights mixed up. So as you can tell she is sleeping in all the pictures...... I've started going to the hospital around 1am to play with her and rock her to sleep but I think it's a losing battle. So things are moving along nicely.

Caleigh weighs 8 lbs 4 oz and she is 19.25 inches long.
She is in 0-3 months clothes now and looks huge compared to all the tiny babies in the NICU.

Daddy snuggling with Caleigh

We hope everyone has a safe & happy new year! Don't forget your blackeyed peas!

Wrapping up 2007

Can you believe it? 2007 is about to be a distant memory and 2008 will be long gone before we know it. Why is that? When your younger time moves slowly and everyone tells you to enjoy it. Now that I'm older, there isn't a second taken for granted. What I would give to be 'bored' for an afternoon. 2007 will be a year our family will never forget and here's why:

Eric & I tried and got pregnant with our first child at the end of January

We went on a wonderful vacation to Florida & North Carolina in May

June, we returned home to find out that our unborn baby would be born with a birth defect, Gastroschisis

June & July we shopped, decorated, educated ourselves, met with doctors & specialists & waited

August 14th, after a routine doctors appointment we were sent to the hospital for bedrest and observation

August 15th, Eric & I welcomed our first born, Caleigh Amelia Gray at an early 28 weeks, 11 weeks to soon

August seems to be a blur.......surgeries, specialists, pumping breastmilk, trying to rationalize how unfair this all was

September came with another surgery, the meaning of patience is finally realized

November, our original due date came and went; we learned about PVL and how uncertain Caleigh's future could be, we educated ourselves

December, another surgery and now we wait.........

2007 was the most invigorating, exciting, scary, sad, emotional, physical & truly the best year of our lives, not to be forgotten.

We welcome 2008 with hope, new beginnings & eventually Caleigh's long awaited homecoming

The White Stuff

Yesterday, our surgeon started Caleigh on Pedialyte. She was getting 5ml an hour continuous through her G-button. Last night she had three poopie diapers and was tolerating it wonderfully. So today when the surgeon came by, he started Caleigh on the EleCare formula that she had been on before. She is getting half strength (mixed with water) at 5 ml an hour continuous drip through her G-button. Like all the times before, we will have to wait until the amount she is getting is higher before we know if there will be any issues. Were crossing our fingers, saying our prayers and hoping that this is the time her little belly works like it should.

Caleigh had an echo of her heart done the day after Christmas and everything came back great. They did some blood work to check her thyroid and it came back fine as well. The medicine that they started a few days ago is helping control her blood pressure so I'm sure she will be on it for awhile. I think they have decided that the blood pressure issue is a product of the poor liver function. So again, the sooner we get Caleigh on full milk feeds; the better everything else will be.

On the developmental front lines ..... We have been working with Caleigh to bring her hands & arms in towards her chest and she has started to do it on her own now. She has also started to hold objects in her hands and she is slowly starting to grab for things. We're also working on teaching her to bat at objects. It's a lot of fun..... Smiling? Nope, not just yet. We still get the adorable sleepy smiles but we haven't been able to get her to crack one on her own yet. Well just have to keep working on it ;-)

Merry Christmas!

We hope everyone had a blessed Christmas with their family & friends! The past few days have been some of the hardest days since Caleigh was born. We are sad that our baby girl isn't home for Christmas, but we know that the New Year will be filled with joy, love & a long awaited homecoming. Eric worked at the firestation today and I stayed at the hospital with Caleigh all day. Both of our families celebrated Christmas early so today was just a regular day ( & Jesus' Birthday of course) with a santa hat or two. I got to room in with Caleigh all day which was really nice. She actually slept through most of Christmas day because she is awake most of the night time now. I bet she was awake for about an hour the whole day! So I'm about to head back up to the hospital to entertain our wide eyed baby. The docs started her on another blood pressure med (this is the 3rd one) to see if it helps. Her kidney ultrasound came back great, nothing wrong. Tomorrow they are going to do a echo of Caleigh's heart to see if the high blood pressure is affecting her any and to see if there is anything going on with her heart that could be making her pressure be high. They seem to think that her liver function may be the culprit but they want to rule everything else out just in case. One nice thing is that on Caleigh's orders for today she wasn't allowed to have any blood work, no heal sticks & basically nothing 'mean' on Christmas Day.

Yesterday, for my birthday, all the nurses, doctors & staff sang happy birthday and Caleigh gave her mommy a birthday card. It was the best birthday present ever! Plus, I couldn't stop crying......even now I'm tearing up. What a wonderful thing for them to do.

Christmas Eve, while Caleigh's IV fluids were cycling off, we took her out in the unit for a stroll. Caleigh wore her Santa hat and stopped to visit everyone & to wish them a Merry Christmas.

Daddy strolling Caleigh down the hall

Christmas Eve

I've been pretty delinquent in my blogging duties lately. It's crazy with the holidays on a normal year but throw a sick baby into the mess and you've got absolute madness! So here's a quick update on Caleigh......
She is still doing amazing on room air. No vents needed and hopefully never again needed. We still haven't got to feed her yet. The surgeons are being very cautious and waiting for her tummy secretions to slow down. So we have a very hungry baby that tries to suck a hole through her paci every chance she can! Maybe in a few days?
We do have a fairly new problem to deal with too. Caleigh has high blood pressure and it started about 3 weeks ago. They were hoping it would be a passing thing but it has stuck around. So she is on medicine for that and it's not really helping that much. We keep playing with the dosage and timing to see if we can get better results. This morning (Merry Christmas Eve) Caleigh is going to get a kidney ultrasound to see if there is anything wrong with her kidneys. Sometimes when babies have high blood pressure there may be a kidney problem. We pray that there isn't anything wrong with them. We really don't need something else to worry about!

Other than that everything else is ok. Caleigh is alert and has started grabbing at her rattles and toys. It's small grabs but she is doing an amazing job! We are so pleased with her progress and it really makes us feel great when she reaches another milestone. She watches us talk to her so intently too and I can't wait till she makes her first coo or gurgle at us!

We wish everyone a Merry Christmas. Have a Blessed Day with family and friends.

What a difference a week makes

Caleigh all swollen 3 days ago on the ventilator

Caleigh today in her crib
who dressed this girl? Mommy no matchiee...

Today, the last of Caleigh's IV's were taken out & we moved her back into her crib. We finally got to hold her and I think that made all of us happy! Caleigh still has the replogle suction tube that goes down her nose and into her stomach. It's working to get all of the stomach acids and drainage out. Right now it is a light yellow-green color and as soon as it gets clearer and less of the amount then we will start feeds. She was so content to be back in her own crib with all of her things. She watched her mobile for a long time and then fell asleep propped up in her boppy.

Caleigh's skin and eye color is extremely yellow or jaundice after the surgery. Her liver levels are called direct and indirect bilirubin. They went up considerably after this last surgery due to all the trauma that she went through (7.3 to 13.2). Indirect is the normal newborn or preemie jaundice that is cured in 2-3 days with phototherapy lights. Direct bilirubin has to do with the liver and in Caleigh's case is cased by her IV nutrition of TPN & Lipids. The IV nutrition has to be processed and broken down by the liver because it is intravenous. We are most concerned with Caleigh's direct bilirubin because it shows us that she has developed Cholestasis. Her poor liver function was the main cause of her bleeding during surgery and the many blood transfusions & platelets that she has received in the past week. As a side effect of Cholestasis, Caleigh has the yellowed eyes and skin tone. The ideal cure for this would be to get Caleigh off of the TPN as soon as possible and to start full bottle feeds. Right now we are cycling her TPN & Lipids off for 4 hrs a day to give her liver a rest. She is also getting phenobarbital, which is a seizure medicine, with the side effect of lowering bilirubin levels. I just wanted to explain this to everyone since Caleigh's eyes have been getting more yellow with each picture I post. So hopefully there are lots bottles and poopie diapers to come!

Can you believe that Christmas is in......... 5 days!

Such a BIG Day

Sunday morning (2am) Santa visited Caleigh in the NICU

Caleigh had a wonderful day today. She got to come off the ventilator, got her catheter removed and stopped a lot of her medicines. She even had 2 poopie diapers and is tooting up a storm! She still doesn't feel 100% but she made huge strides today. I wouldn't be surprised if they start her feedings by Christmas. Tomorrow, Caleigh should be able to get back in our big girl crib and mommy and daddy will be able to hold her!

I know I sound like a broken record, but thank you for all your thoughts and prayers. Everyone is amazed at how fast Caleigh is recovering from her difficult surgery. We know that everyone's love is lifting her through this.

Almost there

Caleigh is doing much better 6 days post surgery. At the height of her swelling, our 7 lb baby was 11 lbs. Today she is 9 lbs so the fluid is going down slowly. Yesterday they moved her back to the conventional ventilator and she seems to be doing great with it. The doctors are weaning her settings and I think she should be off of it in a day or two. She's more awake and we sit and talk to her while she looks at us and around the room. She is still getting platelets everyday because her clotting factor after losing all of her blood just isn't up to par yet. They are weaning all of her medications as well. Caleigh has had a couple of stool smears and we are really excited about that. We are learning how to take care of her g-button and it is just the oddest thing. I'll try to post pictures of it soon. Other than that, Eric and I are doing ok. We are getting a little bit more sleep now that Caleigh is feeling better and I'm sure we will get tons more (at least in shifts) once she gets home.

4 mth Photo

Caleigh on her 4 month birthday

4 mths old (yesterday)

The past few days have been really rough for all of us. Eric and I have been basically living at the hospital and they were sweet enough to give us a room that we could rest in so that we didn't have to drive all the way home. Right on schedule Caleigh swelled up enough to need the oscillating ventilator on Friday night. Eric and I had just left to go home to eat and let the dogs out when it happened. The swelling puts too much pressure on her lungs and she can't expand them on her own. The oscillator sends short puffs of air into her lungs and it sounds like a really loud washing machine on the spin cycle. So when we got there she was pretty much letting the machine do all the work for her. That night there was a lot of ups and downs trying to get everything adjusted just right. Sat. morning she had one episode where her air way spasmed and they had to help her breath for 5-10 sec. This happens in older babies because they spend so much energy fighting the tubes and trying to breath around the vent. After that, things started to get better. Her swelling is slowly going down and she is able to breath around the vent comfortably when she wants to. She still has another 24-48 hrs to go before the swelling is down enough that she won't need the oscillator. Caleigh is still getting tons of meds to help with everything from urine out put, platelets, potassium, antibiotics, pain meds, etc.

Caleigh is such a strong little girl. Right on schedule she opens her eyes and looks at us before she gets her pain meds. We tell her what a fighter she is and how proud we are of her. She's fought the vent since day one and her little body is fighting the swelling as I type.

Thank you so much for your continued prayers. We can feel God's love for our baby daily.

6th Surgery, 3mths 4wks

Caleigh about an hour after surgery

Caleigh's surgery started at 8 o'clock this morning and ended at around 1 o'clock. The surgery was longer than expected. When they went in Caleigh's abdomen they found her intestines all 'balled' up and adhered with scar tissue. The surgeons proceeded to cut away scar tissue and undue the ball for 3hrs. Caleigh lost basically all of her blood during this portion of the surgery but they were pumping her with blood, platelets & other blood products the whole time so her vitals stayed good. When they finally cut away all the extra tissue they found her intestines to be in good shape. Not too narrow and a whole 94cm long! At last count Caleigh had 40cm so it had grown a lot since the last time the surgeons were in there. The bowel would need to be a diameter of 4cm across to be able to do the STEP procedure and hers is only 2cm across. So she didn't need the STEP procedure and they are thinking all of her problems were coming from small blockages due to the scar tissue. They revisited one of her previous connection sites as well and made it a bit bigger. They also wrapped her intestines in a 'rice paper' type of stuff that will try to help her intestines not stick together again. Caleigh got a new central line put in and the g-button. She also got the fundoplication because we found out with the PH test that she has severe reflux. Caleigh is still on the ventilator and so far doing really well. She has already started to swell so they are watching her closely to see if she needs to be on the oscillator vent which helps her lungs when she is swollen. She's on a cocktail of meds right now and they are giving her lots of fluids and some more platelets.

The surgeons were exhausted, sweating and worn out. We are so blessed to have the best surgeons possible for Caleigh. Their talent and caring won't go unnoticed by us.

I know I'm missing something but we just got home to take a nap, eat dinner and then head back up to the hospital.

The next few days are really going to be rough for Caleigh. Everything we need right now is prayers and lots of them. Thank you to everyone for the sweet words, thoughts, prayers and love for our family.

patiently waiting

Not much has changed since our last post. Caleigh has been feeling better since we haven't fed her. Yesterday we started formula and then moved over to pedialyte getting ready for the PH test today and then surgery on Thursday. The best thing is that we are getting to try bottle feeding! Caleigh still doesn't have the total hang of it but she is getting better. Thank you to everyone for your continued prayers and support! I'll update everyone as soon as possible!

Here are some pictures from the past couple of days:

Caleigh still screams during her bath!

But she calms down when we wrap her back up

and she is still lovin' her paci

16 weeks

SURGERY DATE: DECEMBER 13th @ 7:30am
We got the news yesterday so all we have to do is sit and wait till next Thursday. Caleigh will be getting a new CVL, hernia repair, STEP procedure and G-button. I also mentioned to Dr. Vaughan that Caleigh has started to get a double chin....& since he was doing everything possible during this surgery.....maybe he could take care of that too! He thought we should look into her chunky thighs!

Right now we are measuring how much she is refluxing by a PH balance test to see if she needs an 'attachment' to her g-button called a Fundoplication to help with her reflux. It actually repairs the valve to the stomach from the esophagus. They will only put one in if her reflux is severe.

What's on my head???

Caleigh felt much better yesterday, as you can tell in the pictures and video. They think that Caleigh has or had a virus, which is scary when your at home with your baby, but even more so when your baby is already sick at the hospital. We roomed in again and had a really nice day. Caleigh was more awake and we played with her a lot during the day so she slept almost all night.

You may be able to see that Caleigh's skin is yellowing and also the whites of her eyes. This is from the IV nutrition (TPN & Lipids) that she has to have right now. Her liver has to process it because it is through IV not oral. Caleigh's on medicine to help with the side effects and we have also started to cycle the fluids off. She will be on it 22hrs a day and then off for 2 hr. This gives her liver a chance to rest. The sooner we can get some volume in oral milk feedings the better.

When Caleigh is being fed she WILL NOT take her pacifier! But when she is NPO (not eating) she LOVES IT! Poor baby has such a strong throat aversion because of everything that has always been down there. So we work on oral stimulation all the time with her. Even when she is asleep, I put my finger in her mouth and massage her cheeks & tongue from the inside. If you move in to fast with the paci she'll gag and cough. So you have to talk her into it and move slow. As you can hear, I'm a bit over animated with this one, but I love the ending!!

7lbs. 7oz.

I know everyone is waiting for a surgery date and time......we don't have one yet. The surgery will be 5 to 6 hours and 2 surgeons will be doing it so there are scheduling conflicts to deal with. So it is looking like it will be next week now. This gives us more time to research and prepare. If we have learned anything this year it is the art of patience. Ok, we've learned sooooo much more than that but it seems to be on my mind lately.

The docs stopped Caleigh's feeds and she seems to be feeling better. She was so upset and uncomfortable so were glad they did. They did blood work this morning and found a shift in Caleigh's white blood count. This could mean infection or virus. So they have started her on two different kinds of antibiotics. The docs ordered cultures and we should get the results of 'what' it is in a few days. I guess we wouldn't have gone to surgery with that anyways.

Were pretty worn out because we have been at the hospital a lot the past few days and nights.
I did notice on the way to the hospital this morning that we are actually having somewhat of a Fall around here. Orange, red & yellow leaves are everywhere and it was just a beautiful sight to see.

So yesterday Eric and I roomed in all day with Caleigh again. It was really nice and much needed. Caleigh has been so fussy the past couple of days. We can tell her belly hurts. All she wants is to be held but at times that doesn't seem to be enough either. Caleigh slept all day while we were rooming in and as soon as we took her back to 'her' room she started fussing. I've been calling to check on her all night tonight (it's 4am) and she hasn't slept a wink and has cried most of the night. We have asked them to stop her feeds so that she might feel better before she goes to surgery. She feels so much better when she's not eating and the new tube to try to help with spitting up doesn't seem to be working either. So hopefully we can get her feeling slightly better before the surgery. We still don't have a surgery date & time yet but I'm thinking it will be later this week.

We finally got to meet with Caleigh's neurologist, Dr. Kelfer, while we were rooming in. He has come highly recommended from so many people and we have heard nothing but good things about him. He started off by saying "neurologists aren't optimistic people" and I said "well good thing we are!" Caleigh's MRI shows a lot of 'bad' damage to the back side of her brain. This is the part that controls the gross motor skills (i.e. walking, crawling, sitting up.) He said that most likely Caleigh will have some form of Cerebral Palsy but to what extent he isn't sure. Dr. Kelfer did say that babies with mild brain scans can have terrible outcomes while those with severe scans like Caleigh's can have little to no problems. He was quite pleased to hear that she can hold her head up strong, track and look us in the eye and he said that all of those are good signs. He did ask me all about my pregnancy, delivery and how long Caleigh was on the ventilator and pretty much came to the conclusion that it is impossible to know when the lack of oxygen & blood flow to the brain happened. So what to do...... keep doing what we are doing ..... Stimulate her everyday, get OT & PT and his great advice "don't replace yourself with Baby Einstein videos!" We really didn't learn anything new and time will tell what our challenges, if any, will be. It was great to get to talk to Dr. Kelfer and he said that he would be by to check on Caleigh often and then we would start office visits when Caleigh gets home.