Happy Halloween

Caleigh's First Halloween

Ok, so Caleigh wasn't too excited about the whole dress up thing, but mommy and all the staff in the NICU were! She was so fixated with the sparkles on her hat that it was hard to get her to look at us. We got to take the feeding tube out of her nose and mommy did a little photoshop work to get rid of the other tubes and wires! All in all, it was a really fun time!

What a big girl Caleigh is.........5 lbs. 13oz. Caleigh's feeds are going well. She is up to 7ml an hour at 3/4 strength milk (mixed with water) Slow goes it, but things seem to be working so far. They started her back on vitamins today. The vitamins are pumpkin orange. Caleigh was having trouble holding it down and she spit up a lot ....... very orange! We're going to see if there is some other way to get those vitamins down.

Our Halloween plans consist of hanging out with our little pumpkin on her big night!
We hope everyone has a super fun & safe time!

On the Milk Wagon.....again

On Thursday night the surgeons decided to try Caleigh back on breastmilk. So we started at 5ml an hour at half strength milk (mixed with water) through the tube pump. That's 120ml in a 24 hour period. So far so good! Yesterday they bumped it up to 6ml an hour. She is still dishing out the diapers and she seems really happy.

Caleigh's first mug shot! No doubt this baby is all Eric!

Caleigh is so alert and awake. She's getting to where she has sleep and awake cycles now. Yesterday she was awake for a whole hour and a half just looking around and watching me, very content. Caleigh has such a feisty personality already! She weighs 5lbs. 11.6oz and I don't see that slowing down any time soon! Visions of that 2lb baby are long gone!

10 wks

Caleigh is doing really well today. Yesterday she got her 2 mth shots so she slept most of last night and today. Wow, can one little lady cry! She's been really fussy if you wake her up. I think she gets that from her momma and the shots ;-) Pedialyte feeds are going good, slow, but good. She hasn't been spitting and she is still loading the poopie diapers for us. Caleigh has lost a little weight the past couple of days, but she has been retaining fluid since we started the feeds again. They call it 3rd spacing, and it just means that her body doesn't know what to do with all the extra fluid so it just kinda floats around. She weighs 5lbs 8oz as of today. Caleigh also got her eyes checked again and she is doing great, no problems! She must take after daddy on that one because mom is blind as a bat! Last week Caleigh got her hearing tested and she passed with flying colors.

Holding her favorite bunny and binky

Wearing moms favorite hat. Just settled in for a nap after her shots and a bath.

Caleigh is able to hold her head up by herself for a long time now. If she wants to look at you she will throw her head back to do so. She turns towards our voices and follows her mobile with her eyes. She is doing great developmentally and we couldn't be more proud!

Bouncin' around

Caleigh's first time in her bouncer! She loves it!

Lots of room to grow!

So the past couple of days have been a waiting game. Hanging out, trying to make a hungry baby feel better until her belly was ready for the slow 'drip' continuous feeds. The surgeon came by today and started Caleigh on 3ml of pedialyte per hour. He wanted to start her on the pedialyte to help her system get ready for the milk. They want to get up to full feeds on the pedialyte before they start the milk and that will probably take a long time.

Today Caleigh weighs 5lbs 9oz and she is 16.5 inches long. With only 2 wks till her original due date; we finally got an estimate on Caleigh going home. The docs are thinking 3-4 months from now. Yep, that's February or March......... wow, we knew it would be a long time, but when you get an actual number or month it makes it all too real. When you start to look at the big picture over the next couple of months or years; things can become overwhelming. We've just been taking each day as it comes and that won't change just because we have a time estimate. When our princess is ready to go home we'll open our arms.

God given Time

Ok, Ok, no need to call child services this is just an intense yawn-stretch combined with a kiss from mommy

All snuggled up

OK so we went to Cooks this morning to do the dye contrast test. YAY!!! No perforation this time! Such a relief. It is so strange to watch the dye travel up the intestines on the screen and we could definitely tell where everything is getting caught up in that little tummy of hers. There is a narrowing (stricture) but it isn't completely blocked. So when we left Cooks we were preparing ourselves for another surgery. Dr. Vaughn came by to talk with us about some options. There is the option of surgery, but it isn't urgent seeing as there is still a path for stool to move through. And basically it is really complicated.....disconnecting the small intestine from the colon and reattaching the colon on the side of the small intestine ..... then bringing the disconnected site of small intestine up out of the belly into a stoma .....whew! On to the easier and more pleasant route......... wait a few days without feedings to clear things out. Then start continuous feeds with a pump that steadily gives Caleigh milk over an hour's time. This will slowly trickle the milk into her belly instead of normal feeds that are all at once every three hours. So this is what Eric and I decided to do first and hopefully last :-) We are hoping that continuous feeds will gradually stretch the colon/large intestines and ease the pathway for milk. Caleigh will still eventually have to go to surgery again to fix her hernia, but for now we are taking it one day at a time. We wanted to give Caleigh every chance we could instead of jumping into surgery again.

Everyone keeps asking what I am doing for myself (besides sitting at the hospital) and so far it has been writing this blog. I know everyone enjoys the updates on our little princess, but this blog heals me as well. Writing about what is going on, good or bad, seems to relieve some sort of stress and it documents our lives from day to day. I may not remember what happened last week but I know that I wrote about it and can look back. I can't wait for Caleigh to get older and be able to read the story of her early arrival, and see all the people that love her, care about her and pray for her healing daily.

10 times to Cooks (every milestone counts)

Last night Caleigh went over to Cooks for a MRI so that we could have a baseline detailed brain scan. The MRI experience was horrible. Caleigh kept spitting up so they would have to come in and suction out her mouth and lay her back down. She just kept choking and was really upset. Finally they got what they wanted image wise and sent us back over to Harris. The results came in this morning and yes Caleigh has PVL. Right now we are waiting for a Neuro consult. Occupational Therapy will be coming by 3 times a week to work with Caleigh until she leaves the NICU and then we will have Early Childhood Intervention coming to our house until she is 3 years old for therapy. We are also going to have a speech therapist meet with us about Caleigh's sucking coordination during bottle feeds. It's funny that speech therapy and bottle feeding go together but everyone says they are the experts.

When Caleigh got back to her bed she continued to spit up. So much so that the docs stopped her feeds again. They took more x-rays and said that her bowels were a bit more dilated than before. They have put the suction tube back in and they are getting a lot out of it so far. We think that the milk just isn't going down fast enough and the MRI mess just pushed her too far. The docs have scheduled another water soluble enema for tomorrow morning over at Cooks. This is so they can see if her colon and lower intestines are working ok. The last time they did this Caleigh had to have emergency surgery. So we are praying that her bowels are just acting slow and not blocked again. She is still having bowel movements but they are really really small. Hopefully tomorrow will be uneventful and our little girl's tummy gets to feeling better soon. Caleigh is so strong and we don't see that changing any time soon.

Everybody has been asking about what they can do to help and we truly appreciate each of you. This has been a trying week and right now the best gift of all is prayers. Thank you to everyone.

In the Valley

On Friday, our family received some shocking news from the doctors. Up until this point Caleigh's prematurity hasn't really been much of an issue. All of her struggles have been because of her Gastroschisis. We were told that they had done a routine brain ultrasound to check for any brain bleeds, which is fairly common in premature babies. Unfortunately, they found something else. Caleigh has PVL (periventricular leukomalacia). This is more common in preemies than full term babies and the chances are about 10%. Basically, there are cysts in Caleigh's brain along the ventricles. This is the way the brain scars itself. Unfortunately, no one knows what causes PVL. They think it has something to do with bloodflow and oxygen absorption. PVL is considered a brain injury and the prognosis varies. PVL affects the motor skills (sitting, crawling, walking, etc.). Caleigh could be perfectly normal or to the extent of some form of cerebral palsy. We won't know the extent of her injuries until she is at least 18 months old and we may have to wait until she is 3 or 4 to understand her learning disabilities. We have asked for a neurologist and therapists to work with. They will probably do MRIs and CT scans, but we still won't have many answers.

We are obviously devastated and saddened by this news. But what is done is done and now we have to support Caleigh and get her the best help that we can. Trying not to dwell on the what if for the next couple of years will be hard, but waiting for something bad to happen will just drain us all. Positive, Optimistic and Loving is the only way to be. We are praying that the injuries aren't too severe and that she will be able to lead a normal childhood. It is hard to look at her and imagine that anything is wrong in that precious head of hers. We ask for all the prayer warriors out there to continue to pray for Caleigh and the long struggles she may have to overcome. Thoughts and prayers are truly needed.

Here are some links for information on PVL:

High Risk Newborn

Pediatrix

8 weeks 1 Day

Caleigh drinking from a bottle & posing for the camera

The past few days have been filled with Eric and I trying to make a very hungry baby happy without giving her milk. It's been quite difficult as I'm sure you can imagine. Caleigh has never really thrown a fit before, but take away the milk and she can throw down with the best of the the crying babies in the NICU.

This morning the docs started Caleigh on 5ml of breastmilk every three hours. This is less than a teaspoon and so we start over again. Mommy talked the doctor into taking away the nasal canula (which she didn't really need anymore for oxygen) and putting her feeding tube down her nose (NG Tube) instead of her mouth. Now she can bottle feed and breast feed much easier. They also moved Caleigh into a big girl bed again. It's a large metal crib type of bed. I'll post a pic of it soon. She gets to wear clothes and be swaddled which she likes. Caleigh weighed 4 pounds 11 ounces today. At an adjusted 37 weeks she seems to be right on target where the doctors want her.

Tonight she was having trouble taking the bottle, but she did well this morning. She gets 2 bottle feedings a day, any amount of none nutritive breastfeeding, and the rest through her tube. I think she still doesn't feel good because she is grunting and pushing a lot. More than a normal baby at least. Her tummy is getting a little hard again. So we will just have to watch it. She has been getting x-rays every morning and blood work every other day. The docs have also started her on Reglan for reflux. It's a rollercoaster of a waiting game! Call it mommies intuition, I don't know.

Just a few updates:
Twins Jenny & Emma are doing well. Jenny has had to a have a few eye surgeries and will probably have to have more. Her swelling problem is gone and they still don't know why it happened. Emma is doing really good and both girls are on the nasal canula, which is a great step towards breathing on their own.

I would like to mention another baby in the NICU that I have been praying and thinking about. His name is Jack and he was born at 24 wks. If premature babies get it ... he has had it. His parents have been by his side for more than 4 months. He has recently had a troubling turn. Please add his family to your prayers as they go through this hard time.

And for some exciting news ...... my pal Nicole and her fiance Austin from the yahoo Gastro forum welcomed their baby boy, Austin Izais James Needham on Tuesday, October 9, 2007 at 8:06 am, just 3 weeks early. He weighed 4 pounds and 14 ounces and was 17 1/2 inches long! He will be having his first and hopefully last surgery to close his belly tomorrow morning. Our due dates were just one day apart! I wish them all the best in the exciting adventures of parenthood!

55 Days

Yesterday was a better day for Caleigh. After more x-rays, suppositories, doctors and surgeons pushing around on her belly; Caleigh finally started stooling and she didn't stop for a long time. The docs put the tummy tube in again to help suction out what she was spitting up. They stopped feeds all together and were going to look at how she is doing this morning to see if she could tolerate eating again. We will have to start over again in small amounts and work our way back up to that ounce.

So this is what is going on in that little tummy. Before the last surgery the docs had been feeding Caleigh. There was a narrowing (blockage) and that is why she had to have emergency surgery, but all the milk they had given her had to stop somewhere. It stopped right before the narrowing and it 'stretched ' out the small bowel, dilating it. Nothing had ever been through the large intestines because of the blockage so it is still really small. Even though the narrowing has been unblocked by the last surgery; the large intestine is still not as big as the small and therefore can't move bile through it quick enough. While they were feeding Caleigh and increasing the amount each day this past week; the small intestine started to back up because of the tiny opening in the large intestine. (And yes you can make fun of my drawing :-)

Because of all the pushing and grunting Caleigh developed an incision hernia right above her belly button. The surgeon isn't worried about it and it doesn't have to be fixed right away. If we don't have anymore surgeries then we will probably get it fixed when she is bigger right before we go home. Her abdominal wall is very thin due to all the surgeries and we knew this was a possibility. It doesn't hurt her and it feels like a mushy air sack when you touch it. I think you can see it in the top picture.

Caleigh was feeling much better after she started filling those diapers. I think we changed about 8 in a 2 1/2 hour period. She was awake and smiling and seemed much more alert than yesterday when she didn't even open her eyes. Eric just called me; he went to see Caleigh before work early this morning and he says that she looks good and is starting to get fussy because she is hungry. Now that she knows what milk is!

I hope I explained everything well. Let me know if you have questions about anything. I think it is going to be a longer road than we were hoping for, but thank the Lord for poo!

2 steps forward 1 step back

Caleigh in her new bed. The hanging syringe feeds her using her tube and gravity.

The past couple of days since my last post have been wonderful. Caleigh started none nutritive breastfeeding and she was doing great. We were nursing 2 times a day to help her get used to it and she was really catching on. She was taking 2 bottles a day like a champ, the rest of her feeds were through the feeding tube, and her milk intake had increased to a whole ounce!

Unfortunately, today Caleigh had another set back. She hadn't had a bowel movement since yesterday at 5am and her tummy is swollen again. Plus her stats haven't been great. Her heartrate and oxygen intake drop periodically. After lots of x-rays and blood work, the docs decided that she needed blood, antibiotics and a decrease in her feeds. She is also getting suppositories every 6 hours to try to get things moving again. They can tell on the x-rays that there is stool in her bowels and hopefully we will have lots of poo again soon. Tomorrow they will start some diuretics to help with swelling and fluid retention caused from the blood she received this afternoon. Caleigh has also been having trouble holding her temperature on her own. So they put her in a radiant warmer bed that helps control her temp. When premature babies get sick or don't feel good their temperature goes down. So instead of running a fever they go the opposite direction. She actually did the same thing with her temp right before her last surgery which has almost been 3 wks ago.

We are praying for poo again. It is terrible to sit and watch her grunt and groan because her tummy hurts so bad. Oh how we wish we could take the tummy troubles away. 2 steps forward and 1 step back seems to be the phrase of the day with the docs. The roller coaster continues. I will update as soon as we know more. We really appreciate everyone's continued thoughts and prayers.

7 wks, 2 bottles & a big girl bed

Today was a great step forward for Caleigh. The nurse was able to bottle feed her twice today with no problems. She is a slow eater and likes to fall asleep, but she is getting the hang of it. They have her up to 3/4 an ounce of breastmilk every 3 hours, and the docs are slowly lowering her TPN and Lipids. They fed her through the tube the rest of the time because she was so worn out from the bottle feeds and they don't won't her to have trouble breathing again. Today she weighs 4 pounds 9.2 ounces! Just growing like a weed!

Today Caleigh was moved into a 'Big Girl Crib' Can't see her, but yep she's in there! Caleigh is able to hold her temperature like a pro......

Here she is......snuggled in her big girl clothes and blankets all in her new crib

Happy Halloween!
Yesterday, after her bath, nurse Ashley played dress up with Caleigh. We had to put her pumpkin outfit on early because Caleigh's head was getting too big!! I guess the teddy bear sweater just can't keep up with a growing girl. Caleigh is just lovin' her hair bow & nurse Ashley, of course!

Just snoozing the day away

swaddling, sleeping and growing........

Daddy & Caleigh + halloween kitty hat

Still snoozing......

Caleigh weighed in at a scale breaking 4lbs 6.6oz today

Caleigh's feeds are going great and she is tolerating them wonderfully! We haven't tried bottle or breastfeeding again, but maybe tomorrow. Her milk intake is up to a whopping 1/4 an ounce. We are so proud! Dirty Diapers galore and no end in site, thankfully. The docs did put Caleigh on a nasal canula with a little bit of oxygen because she is breathing so fast. They don't want her to waste all of her energy and burn a lot of calories just on breathing alone. If needed we could take her home on the oxygen, but we still have a long way to go with feeds & bottles. So maybe she will be weaned off of it before then. A lot of preemies have difficultly breathing and we are fortunate enough to have the easier end of that situation. Caleigh sure is getting big fast; today I noticed the start of our very own cradle cap! Flaky hair pictures coming soon! :-)