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Preemies
OrganicTeacher
member
disabilities
OrganicTeacher
member
in Preemies
For the moms who are out of NICU or have their babies in NICU - did your LO have any disabilities from being early? Wesley is is now 10 days old, and I am watching him closely and see him developing but am keeping my eyes peeled for any motor skills or anything else.
When did you notice that something may be giving your LO troubles?
How did you know?
What did you do about it?
What did the problem end up being?
How are you dealing with it?
I am now starting to research the risks of having a preemie - and I was wondering how common it really is for the babies/toddlers to have disabilities and what your experiences are with this. My LO has a few things against him - being early (33 weeks) and being VLBW at 3lbs 3oz. He is now up to 3lbs 6oz - but I am attributing that to the growth formula that they are adding to his breastmilk that he gets.
This discussion has been closed.
Re: disabilities
What I'm about to say is not meant to be snarky or hateful. I come from a caring place, I promise.
First -- stop researching. Google is not friendly to preemie moms. Of course there are LOTS of things that can happen, but usually are child specific. You may want to look at the Preemie Mom Blog linked in the green box of this board. Lots of moms from this board have contributed their story to the blog. Additionally there is a lot of information about common preemie issues.
Second -- 10 days is TOO early to start looking for delays. You should not worry about delays until after your son's EDD. And even then, always use his adjusted age for milestones and skills, not his actual age. Even with term babies there is a lot of variability in when s/he master specific skills.
Third -- enjoy this time with your son. The doctors and nurses at the NICU know what signs to look for and the best course of action. Keep pumping BM, change as many diapers as possible, open the isolette window and talk to him, get in as much skin to skin time as possible.
Please keep us posted on your little guy's progress.
Honestly, I'm going to attribute this post to you still being in shock about having your LO early. I mean this in the nicest way possible, you need to relax a little (this post and your response to the post below about bradies are just too intense). I know relaxing is easier said than done. I just worry that if you keep this level of intensity, you are going to exhaust yourself even more than I am sure you already are. Right now, your only focus should be pumping milk, doing kangaroo time as much as you can, and healing from your delivery.
Stay off of google too. That will make you lose your mind. Ask a lot of questions of the neos and nurses too. They are your best resource.
As far as disabilities, things may surface. You'll deal with them when they happen. If having a preemie teaches you anything, it is that you just do what you have to do.
This quote says it all:
We'll miss you sweet Debbie Girl (4.21.12) and sweet Cindy Girl (8.9.12)
I agree with the previous posters. Google is not your friend. If you have concerns raise them with the nurses and the doctors - that's what they are there for. Don't research something like cerebral palsy and see if your LO has any of the characteristics - instead if you notice something bring it up with them and let them make a diagnosis.
When DS was in the NICU I noticed that he elbows didn't fully bend and I mentioned it to our nurse who brought the neo over. It the end it turns out the his elbows don't bend properly due to having limited space because I had oligo. I didn't research contractures or limb dis-formations without any hunch to go on.
BPF May 12, 2013 :: EDD Janaury 22, 2013 :: MC Began On July 14, 2013 at 12W4D
Born at 34w2d:
You seem like a planner from your posts, am I right about that? I am very much the same way and it causes things to be tough when it comes to the unknown, and as all the ladies here can attest there is so much unknown in these early days.
As PPs said focus on kangaroo, pumping and getting to know your little guy. Don't focus on labels or what could happen, focus on what is happening. You have a very strong little boy who will amaze you daily, allow yourself to be amazed by him. If he needs help later, so be it. The resources will be there when and if he needs them.
I know this time is stressful but don't forget to take care of yourself as well.
I agree with the other mom's who have commented. Google is not your friend right now. With any baby (not just a preemie) there are tons of "what ifs". And the only honest answer is that you just don't know. The most important thing at this moment is to hang out with your little one and get to know him. My son's NICU days (although fairly uneventful) are some that are etched fairly deeply in my memory.
And I can't garuantee what will happen with your son. What I can say about my son (born 33wks 5dys - no explained cause other than my white blood cell count was high), is that he is just over 4 months actual and doing fine. Other than being a little guy and having some lactose issues (which runs heavily in the family) he's an engaged happy little baby who doesn't stop moving. He just wants to play, and nuzzle, try to talk, and see if he can convince you to share what you're eating (we haven't started solids yet).
The biggest deal right now is bonding with your little guy. And enjoying the time that you do spend with him and all of the little things that he does (for example my son refused to be swaddled, once you would get him in, he would just start poking his arms out). He's getting to know you too. There is a time for worrying about the future, but for the most part that comes after your NICU days.
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Thank you to all of you. Shocking that I am a planner... right? lol. I am not only a planner, but a numbers person and researcher as well. I tally and chart everything - and while I know I can't control what is going on, and that it is a waiting game, I still want to be somewhat prepared for what could happen... which I know is a LOT of things.
While I was still in the hospital - they came to talk to me about him and his glucose levels. Everything they had said prior to that day was all positives, and that he would be home quickly, and they didn't see any issues arising other than they would have him stay for a few weeks to grow - and sure enough we were blindsided by a dr walking into our hospital room to tell us that there is something wrong with his glucose and the possibility of needing to change hospitals to get him different care and everything... I guess in my mind - asking that question wasn't a "what is going to be wrong with my child" question - but a "what are some possiblities/your birth story" type of question. I was so unprepared for ANYTHING to go wrong because of what the doctors were saying (we weren't even expecting to have him yet - just as what happened with many of you).
I know that right now I am doing everything I can for him - pumping all the time, being there, spending time with him, kangarooing, changing his diapers and taking his temp, etc - but I feel like I should be doing more. I know I will be able to do more when he eventually comes home. And I do need to remember that I can't control what is happening and I need to let go of my crazy need to control issue. lol
Thank you to all of you who have shared your comments and gentle nudging and support.
I do not post here frequently but I agree with the others regarding it being too early to notice signs and the doctors and nurses will know what to look for. People may side eye me for posting what I will but you asked specific questions and part of the reason I don't post here often is because quite frankly I'm jealous of all the preemie parents on this board that DON'T have disabled kids. I'm happy for them, don't get me wrong, but it does frequently make me wonder "why DS2" which is totally useless to even think that!
BUT, I will answer your questions since I do have a disabled child and he was a late term preemie (born at 35wk, 5d).
1. I didn't notice anything until between 6-9mos for gross motor stuff. The only thing I noticed earlier then that was that he had undiagnosed torticollis (the original pedi would not diagnosis that for whatever reason). EI treated him for that at 4mos but they continued to work with him because I guess they saw stuff that I hadn't...yet.
2. The things I noticed were both his eyes intermittenly crossing (not at the same time - eye crossing is supposed to fall by the wayside after 6mos I think *I don't remember the exact month), his hands were still fisted especially the left, he was right hand dominant at 6mos (hand dominance shouldn't be determined that early), and most importantly at 8-9mos it was like the thought of sitting had never crossed his mind (and yes I was taking in the adjusted age for reaching milestones). At almost 2.5yr old he still cannot sit on his butt or sit in a chair without having to be adjusted (he can "W" sit on his own). He also had ankle clonus that was duplicated at a neurologist appointment at just shy of 10mos old. There were a couple of other things I think but I can't remember them at the moment.
3. Prior to the 9mos well baby appt I asked the EI therapists (he had ST, OT, and PT by that point) if there was anything THEY wanted me to ask the pedi and told them my concerns (The EI PT specifically stated I should ask the pedi about a possible neurological issue). I brought the list of concerns to that appt, the doctor saw some of what I saw, and wrote up referrals to a pediatric neurologist and pediatric ophthalmologist.
4. The diagnosis was cerebral palsy.
5. How do I deal with having a disabled child? I went to therapy for a short while to talk about that and other personal stuff, I researched his condition, I bought books on how to help him, I told my friends and family (although it took awhile), etc. My husband was deployed when we got the diagnosis. Imagine that kind of shock and I was very worried how he would handle the news. We are 1.5yr post diagnosis (August will be 2yr). I don't really mind talking about it now but I do worry that people judge me and/or my child when we are out and about. He is on the mild to moderate side and at being almost 2.5yr the fact that he is disabled can still mainly be "hidden" as in one may only notice the AFOs on his feet poking out of his shoes or the fact that when at the park someone has to physically be with him to help him sit, walk, go down the slide, go up/down stairs, etc. etc. But I can tell you that for everything he still is not able to do, he has made GREAT strides and he lights up my life the same way DS1 does (he is typical).