Made of Gray

NICu

yeast..or is it?

201 Days in the NICUHolly D Gray4 Comments

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.

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10ml's & back to the starting lines

201 Days in the NICUHolly D Gray13 Comments

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....

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NICUitis

201 Days in the NICUHolly D Gray1 Comment
Just a small update.....right now Caleigh is on 6ml of Neocate a hour continuous feeds and they bumped her pectin amount up to 3% to help with her loose stools. Tonight we are doing a stool reduction sample to see if she is dumping her sugars and basically losing nutrition. If it comes back positive we will go back down to 5ml an hour and then only go up 1 ml once a week. Her last reduction sample came back as trace so they want to keep checking. Hopefully we can keep going up on her feeds and I pray she keeps tolerating the changes.

The new pump and bags have been a bit of an adjustment for the nurses to get used to. There are a lot of specifics and no one had used them before. So today I wrote out an instruction sheet for who ever is taking care of Caleigh. At this point Eric and I are more than mom and dad......we are Caleigh's nurse too. I guess that comes along with 'caretaker' and I wouldn't want it any other way. Since the new equipment came into the picture; I have been feeling like there are too many hands in the basket. I'm ready to bring Caleigh home so that we can control the situation a little better and not have to worry about mistakes or infections. I'm sure it's just a control thing. Just the normal stuff that we have come to be concerned about. I've been told we have NICUitis and I'm pretty sure we do!

Caleigh's G-button is still having a really hard time healing. We did a silver nitrate treatment to the granulation tissue around the button opening about 4 days ago and again yesterday morning. This breaks down the granulation tissue and helps stop the drainage that we have been having. This last dose has caused the skin around the button to start to peel away. Caleigh's belly looks kinda like a burn victim, poor baby. She acts like it hurts a lot and I just feel terrible for her. We've started putting antibiotic ointment on it today and will continue until it gets better. We just pray that it won't get infected again. Apparently, G-buttons are horrible about leaking, growing the granulation tissue and just being a big pain to deal with, but what should we expect with a hole in the stomach. So we are watching the site and being extremely careful with it.

Until next time......


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5 Months Old

201 Days in the NICUHolly D Gray7 Comments

Caleigh wearing her

BabyLegs

8lbs 8oz, 20 inches long

Caleigh's height & weight is in the 5th percentile as of now

Wow, time sure does fly......it seems like just yesterday Caleigh was recovering from surgery on her 4 month b-day. So yesterday Caleigh was 5 months old and Eric and I stayed up late to make all the doctors and nurses + staff cookies. We attached a note that said:

Caleigh Gray is 5 months old today!

Enjoy a cookie or a few and know that we appreciate everything you do.

With Love,

Eric, Holly & Caleigh Gray

Everyone loved the cookies and we talked about how tiny Caleigh was just a short 5 months ago. It was a really nice day.

As far as medical updates, Yesterday we finally got the Ferrall Valve Bags, a brand new

Zevex EnteraLite Infinity Enteral Feeding Pump

with feeding bags too. We had to get all of this through Cooks Home Health and wow was it a pain to get. We got the order 4 days ago and got everything just yesterday due to our insurance denying the claim. So Dr. Ogunmola (did I say how much we love this man!) had to write a letter and get it approved. Finally, it happened and we set everything up last night and it is all running super smoothly. I'm actually really excited about it. Funny what you get a kick out of when your baby is in the hospital! So now maybe all that extra air & gas can escape out of Caleigh's tummy and she can feel much better. We moved her feeding up to 5ml an hour and she seems ok with it for now. We also started cycling Caleigh's TPN off for 8 hrs a day now (instead of 4) to help her liver get a rest. This weeks lab work was really exciting too because Caleigh's bilirubin levels went from 12 down to 9! It's a combination of her getting formula constantly and the meds + cycling of the nutrition. Whatever it takes to get her there.

On the going home front lines....... We've been told that Caleigh needs to be half way on her feeds before they would let her go home. Even then she would be on TPN & pump feedings and it would be a hospital at our home. Eric & I are prepared for this and can't wait really. Right now Caleigh is getting 5 ml an hour continuous feeds. To be half way she needs to be consistently taking in 13ml or more an hour round the clock to be able to go home. There is some talk that she may not make it half way with her feeds in the first year of her life and if that is the case then she will go home on less. The new pump & bags that we got yesterday will go home with us and then we will get all the equipment for her TPN too. So we are still a month or more away from this happening but at least there is a plan.

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