Made of Gray

CP

Cerebral Palsy Diagnosis

201 Days in the NICUHolly D Gray6 Comments

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.

 

 

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God given Time

Holly D Gray9 Comments

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.

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Any and all written, visual, audio, and video content above are sole intellectual property of Holly D. Gray - Caleigh’s Corner and may not be used without permission from the author. Holly D. Gray is a plant based-vegan Artist homeschooling her daughter, Caleigh, in Texas. She is passionate about educating and inspiring families, like yours, around the world. Holly D. Gray - Caleigh’s Corner may be a proud affiliate of trusted, tried providers mentioned on this site, and may be compensated for your purchase(s). Copyright © Holly D. Gray - Caleigh’s Corner 2007 - 2015.

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