Well, this will be an informative blog, without alot of real information. By that I mean, at this point, without any real bloodwork back, this is still a guessing game at best. But here's what we know so far:
Brad, Lacey & I met with the head of Genetics, Laynie's NICU pediatrician, and the junior geneticist that has been following Laynie since prior to her birth. Dr. M (as I will refer to him) is the head of genetics at Children's and he was pretty neat. He is super interested in our baby, and I get the feeling he is super invested as well. I know Julie, our junior geneticist is, and Dr. Payne has been wowed by her since Day 1. So they stripped her down, put a "pee bag" on her, deadened a little skin tag on the fatty part of her back arm, to take a skin biopsy, and proceeded to look her over head to toe. They measured every inch of her, weighed her (3 lbs 8 oz) THAt's One ounce gained! WOOHOO. and just were truly amazed. We talked about everything we had questions on..
Here's what we know for certain:
- her cheek swab taken at birth, showed no chromosonal abnormalities. -her cord blood, showed extra X and a smattering of 7's. -her placenta showed the 7 and 13's. Now, they haven't taken any blood from Laynie because she is simply too tiny-veined to get any. I find it highly interesting that her cheek swab is clear. She has proven everyone wrong from the beginning, and I'm not certain she won't continue to prove everyone, well into her 30's. They were concerned with her brain (as we all have been) about the fluid and lack of brain that they see. What they told us today was, yes, there is fluid, no, we don't know what it is, and yes, there may be a total small brain under that fluid. All of you that saw her head in the hospital knows how odd it was shaped, well, now it is just a head, a little bitty dinky head sitting on a little bitty dinky body. Yep, there is still loose skin, and yep, there are only about 15 1/2 inch black hairs on it, but it is MUCH improved. (Ketrick will tell you it is a miracle, I tend to agree with him). Now the kidneys, I'm guessing the stupid pee bag they put on her will give us that "Kreatin" (spelling?) level from her kidneys. But she filled the bag while she was there and if your kidneys weren't working, hello, I don't think there would be pee. Then her functioning. If the fluid on the brain were consistant with WHAT THEY THOUGHT, she would be paralyzed on one side. She works both arms up and down, rolls side to side (almost all the way over) and kicks those backward feet like a little mule. She can't roll up in her preemie onesie anymore, because she kicks her feet so much. That my friends, is a baby stretching and growing. She has loose joints, so she'll be able to put her leg behind her head (I always wanted to be able to do that). We see the orthopedic doctor on the 27th and I'm sure we'll do a bang load of xrays of those hips and legs and see what we'll be doing with them.
Meanwhile, the doctor took Lacey & Brad's blood to do a workup on it, and see if this is a one time deal, or an everytime deal. Here's an interesting twist. About April 18, a scorpion decided that it would be fun to get in bed with Brad and Lacey and ended up stinging both of them during the night. 5 weeks later, Laynie was conceived. Now, NOBODY knows anything for certain, but my brother is convinced though the neurotoxins from the scorpion only gave Brad and Lacey minor pain, the toxins from that sting reeked havoc on the baby being formed inside. Those incredibly important first few hours/days of blending and coming together, doing that with what neurotoxins were left from that sting. Sound crazy? Who knows? But it's still a lead, and if any of you ever get stung by a scorpion.....wait at least 8-12 weeks to get pregnant, just for caution's sake.
What a day. Laynie was awake for alot of her examination. She stays awake for good periods of time now and either talks (grunting) or just moves her arms and legs and kind of whistles. She is pretty awesome. We played pattycake and she wasn't too hip on it yet. Hey guess what, her real birthday is tomorrow! the 7th. She'll be born! :) Instead, she is 3 weeks old today! 3 weeks! 21 days...21 precious miraculous inspirational exhausting wonderful terrifying awesomely terrific days. She is God's baby, and she is a GIFT. She sucked on that pacifier until I thought the plastic was going to come off of it today. She has got that sucking down now. It's so funny, it's big as her face and she just loves it.
I don't know what we'll find from our testing, and at some point, she will have to have an MRI, but we aren't too worried about hurrying and sedating her for that. We know she is happy, she isn't in any distress, and is just a wonderful, lovely little peanut baby. It won't be long until she is out and about with her mommy. We almost aren't too nervous anymore........almost....
God is Good, oh so good, all the time.
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