Wednesday, March 2, 2011

Look at the Baby

Tomorrow afternoon the developmental therapist comes to check out Micah. I'm curious to see what they say. As far as I know, to the non-expert but self-educated eye, he seems to be coming along perfectly. It's quite the relief to see this.

Let's back track for a second. For those of you who don't know, Micah was born all extra poofy with fluid. He weighed a whopping 3lbs 6oz at birth but he was so full of fluid he lost that in a matter of days (peed it out all over the isolette bedding) and dropped down to 2lbs 5oz. Other than that he did pretty good in the NICU. When it was all looking bright, the grade 1 IVH aka Intraventricular Hemmorage aka minor almost non existent brain bleed had gone away. Yay! Worse news. Minor cystic PVL (Periventricular Leukomalacia- damage to the white matter in the brain near the ventricles) was revealed on a head ultrasound and confirmed by MRI. Now, the prognosis for this is all over the place. Pretty much anywhere from you would never have any idea, to he might be clumsy or have vision problems, learning disabilities etc, or he could be completely handicapped or rendered mentally retarded. Cerebral Palsy is a bomb often dropped in those conversations. Bleh. Initially I was the biggest worry wort ever. I watched every move. Every leg kick, every cry, anything he ever did or didn't do had me hyper analyzing. I was obsessed. I couldn't relax. I googled--I know, I know, but I had to. And most of the research there made me feel worse, while some gave me hope.

What it all came down to was that you can never know. The brain is "plastic" they say, as in it can wire and rewire. The best advice was given to me: "Don't look at the MRI, look at the baby."  This is important because something minor on MRI can cause major disabilities in one child while another with vast white matter injuries can be completely normal and fully functioning. In a way, it helped me relax, but in another I was still bothered that I couldn't have a real diagnosis, not yet.  I just have to let the passage of time do its thing and see as we go.  I have done everything I can do in my power to help him have the best chances. I breastfed (well, pumped initially) from the start. I've prayed--boy have I prayed. I love him. I hold him, wear him. I interact with him. I challenge him. I massage him. We do tummy time. That's about all I can do now, at his age. It wasn't until we got our first EI (Early Intervention) visit where they said he was doing so well, even up to his actual age in some places. His vision tracking was great. His motor skills were awesome. All he had was one thumb that liked to stay tucked, and after a week or two of me stretching it out that's gone too. I was so, SO relieved!

Fast forward back to Live and now my boy is smiling, laughing a little, getting excited, kicking his legs, cooing, gurgling, grabbing at everything his had touches, looking around, recognizing faces and surrounds, curious, sitting well in our arms, holding his head up, making eye contact, bearing his weight on his legs for a short time, and he even rolled over once on his tummy! So far he is doing great! Honestly, the day he smiled at me--REALLY smiled at me--50lbs of worry melted off my back. So far, all is good. I'm pretty sure Jeremiah is still giving him strength, just like he was there for his brother in the NICU.

So tomorrow EI comes back and I guess will do another evaluation and set up a plan from there. The only thing I wonder about is his ability to bear weight on his legs. I was impressed that he could already do it so well but someone mentioned to me that since his adjusted age is only 2 months, that is early to be able to do that, it might be due to high muscle tone. But, then again I think back to Isaac and how strong he was. He always wanted to stand no matter what. Heck, he was pushing off out laps so much we put him in a jumparoo at 3 months! I think it's just his genes, but it's nice for someone to give him an expert looksy. I personally think he's fine.

I'll keep you all updated!

Then. October 28, 2010 - 3lbs 6oz (and losing)
 
Now. Feb 27 - 10lbs 6oz. (4 months actual and about 9 weeks adjusted)

5 comments:

  1. It's so good to hear how well he is progressing. I would give him bearing weight on his legs a bit more time, but am curious to see what they have to say about his progress now! *still in love with that new picture*

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  2. Well see that's the thing, he IS bearing weight on his legs. Very well. Supposedly doing that too early *could* be a bad thing. But I say whatever, Isaac did it way early, stood up early, walked early (right before he was 10 months old). I think it's just how he is built.

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  3. My biggest piece of advice is to *try* (key word being try because it's easier said than done) to not let what they say is wrong with your baby bother you. When I mean wrong, I mean developmental delays & such :) I have a REALLY hard time walking away from those appts with a positive attitude because quite frankly, what parent wants to hear their kid is behind. But I'm getting better at it, and my point is not to let it bother you too much. YOU are doing the best YOU can do, and the delays (although he seems to be doing amazingly) and everything are on HIS time. He'll get there, and IMO, he is doing AWESOME!

    As for the standing thing.. Libby has wanted to do it ALL the time since she got home from the NICU too.. We didn't know it was a "bad" thing and when she wanted to do it, we let her. Our PT said to not let her do it hardly ever now, and that the main focus is tummy time. Like tummy time ALL the time. <--- Libby hates it, & I feel bad for her. I guess her standing all the time led her to have stronger reflexer muscles in her back and she will arch back and try to use her legs to crawl and not her back or arms. I won't lie though when she REALLY wants to stand, I will let her. I mean there is only so much therapy a day she can do.

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  4. As always I'm amazed by your ability to go above and beyond. Looking at a picture of that beautiful baby today you wouldn't know all the trouble you both went through. There's no way that kid spent WEEKS in the NICU! Yes! LOOK AT THE BABY! He looks like a healthy "normal" baby born on time.

    Sure sure he's got great genes from his parents but even more he's had top notch care, love and nurture that the average baby doesn't get either. I'll never forget the first few milestones Isaac accomplished WAAY before "normal" babies are supposed to achieve them. I remember sitting in your living room listening to all the things he can almost do and thinking "yeah uh huh new mom, sure your baby can do that months before other babies, OK..." ha ha but then by the next visit, there he was, doing them!! Why? Yeah Isaac is going to be an athlete like his dad but you worked with him, everyday! You played with, walked him, talked to him, crawled with him, carried him, laughed with him, the whole way through it.

    So even if Micah has any residual issues (which he won't) he'll be ahead of the game in no time because you'll make sure of that. Even if he has extra challenges (which he won't) you'll overcome them. As a non-mom I'm always impressed with you and I can't wait to see what both of those boys do next!

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  5. He is such a cutie!!! I'm so glad to hear that he seems to be doing great. I'm sure he'll get a wonderful report. :)

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