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December 2010 Moms
tiffanyp
member
We might be going home today
tiffanyp
member
Just a quick update - Charlotte is looking very healthy now. Her color is great and her eyes are totally white now. Her liver is repairing itself and most levels of whatever they test have dropped into normal ranges. She's been off the phototherapy for 36 hours now, and they removed the feeding tube. Yesterday the doctor said that she'd like to monitor her for 48 hours to make sure she's eating well on her own schedule, but she hinted that we might be able to go home today. At this point, there is nothing going on in the NICU that we can't do at home on our own. I don't need a nurse to write down how many ml she eats and what time. I can keep a log if they want me to. Keep your fingers crossed for us!
The bad news is that we did get the enzyme test back yesterday, and they confirmed that she has Classic Galactosemia, which means she does not produce any of the enzyme that converts galactose into glucose. There is no medication available at this point. We just need to follow the diet and hope for the best (and hope that the first 6 days of her life on milk didn't already do some long term damage). I made the mistake of reading some message boards from the Galactosemia website. It is pretty upsetting how many problems these kids have and how much they are struggling. The general consensus is that most of these kids should be able to "lead a normal life," but that seems like such a low bar.
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Re: We might be going home today
::hugs::
So happy to hear you might be going home. I hope that Charlotte continues to thrive in your care. Wishing you tons of good luck and hope on the journey ahead!
I'm sorry that she might have such a difficult relationship with food. You're such a great mom that I know you will figure things out and help her the best you can. It's great that there are message boards for that as well, you will have a place to ask specific questions and hear from experienced moms! ::big hugs::
::Big Hugs::
I am so happy to hear that you may be able to take C home today! And maybe "leading an ordinary life" for C will be something truly extraordinary-like finding the cure for her disease.
The diet is the easy part of all of this. The kids are struggling with complications like speech & language difficulties, learning disabilities, motor skills, etc. They are generally very small and almost all the girls have premature ovarian failure. Many of them need hormone replacement therapy in order to go through puberty. The common story I've been reading on the message boards is people saying things like "She's so small. She's 12 years old but only 55 lbs with no signs of puberty, and she looks like she's 10. She's very shy and doesn't have many friends..."
It sounds like you guys are already doing a great job figuring out what she's going to need and are going to provide such a great life for her.
Glad she is doing so well and hope you guys get to go home soon!
That would be amazing. I will pray every day that she's one of the lucky ones who does not develop impaired brain function of some kind. I'm going to be all over Early Intervention the second I see her lagging in any developmental area.
I am so happy that she is doing better. Keeping my FX that you can bring her home very very soon.
All this does look tough, but don't let it get you down. Look at it as a way to help you prepare. She may reach milestones a little later, but she will get there, even if she does need extra help. You're an awesome mom for reading up on as much as you can and I know you will be there to support her every step of the way.
If it does look like she is turning out to be on the smaller side and you are worried about her having similar issues in school as the stories you have read, you could consider holding off on starting kindergarten until she's 6. I bet that would help a lot with the social and physical aspects. It's just so wonderful that you are researching now so you will be better prepared to make these decisions a few years down the road.
((big hugs))
I don't want to minimize your fears and concerns, but try to remember that message boards don't always give the whole experience. Someone coming from Mars onto our board might see Jilly's vent post (and all of our responses and our other venty posts) and think that life with a toddler is really rotten and wonder why any of us reproduce at all.
Has the hospital/pedi been able to refer you to a metabolic specialist yet?
@Jilly - I hope you don't mind that I used your post as a reference. It's just the most recent vent post I remembered.
BFP #2 5/27/12. EDD 2/1/13. m/c and D&C 6/21/12.
Thank you! I guess all we can really do is try to do right by our kids and give them the best shot they have at living a fulfilling & happy life.
Thanks for the pep talk. I needed that
That's a good point about potentially delaying school for her. That might be a good idea anyway if she ends up with some speech issues to work through.
LOL! That is an excellent point. People seem to post when they are at their peak of frustration.
We are seeing the metabolic specialist next Wednesday. Hopefully we will come out of that meeting feeling optimistic. Today we have an appointment with an eye doctor to check for cataracts too, which is one of the complications that happens. It will be a pretty good sign I think if she doesn't have any, since I think that's one of the first problems that usually occurs.
I'm so happy you're finally going home. You are a strong & loving mama & I have no doubt you will do everything you can to help DD be a happy & healthy baby!
Don't forget we are here for you for support & if you ever need to vent or whatever!
yaaayyyy!!!
This! All you can do is the best you can day by day and have hope that something helpful medically may come along. So glad you're home though...at least now you can try to figure out what your new normal is and settle into a routine.
Oh also I just wanted to add that I was a really late bloomer (without any official medical complication/reason) and things ultimately worked out fine for me. When I was 12 and 13 I consistently looked 2 years younger than my age. I didn't get my period until high school. I was not 55 lbs at 12 but I think I was only 65 lbs and like 4'8 or 4'9. Girls in my class were 5'2" or even taller already. It wasn't easy but there were a few other kids near me on the spectrum...size/development ranges are SO giant at that age! School was also hard when I was 12 because I think they increased the difficulty according to expected brain developments around that age, but I hadn't gotten to that point yet. But then it suddenly clicked a year or two later. Eventually I graduated summa *** laude from a top-10 unviersity and then got my PhD...so really it's ok to bloom late.
I second the idea to hold her back a year, especially given everything else that might be implicated. Obviously now is way too early to be making those decisions but you can just know that is an option down the line.
haha TB thinks you're talking dirty