Her heart is still out of position, but in the general vicinity that it should be... her soft markers were less visible than last time - which could just be "one of those things" or it could be showing some improvement - the doc said it's premature to say if there is less defect than anticipated. We'll know more on that front next month.
**I learned after that our area has a pediatric heart specialist who does perform heart surgery and care for special needs infants and children - he does a lot of care at the NICU in our local hospital as well as having his office at the same specialty care clinic where DH goes for his foot doc - a nice piece of knowledge to help with peace of mind!**
Her spine looks very good - no signs of spina bifida or anything to worry about there, so that was good.
Her head shows the typical strawberry shape and her hands are clenched with the typical finger posturing for Trisomy18 - neither of these were unexpected.
Her ompahlocele is smaller than it was... this is the membrane sack that holds organs outside of her body... her abdomen is measuring about a week behind, but with the ompahlocele, it is not surprising. Last u/s, it measured about half the size of her abdomen - this u/s it measures about a quarter of the size of her abdomen. This could be a good sign (I'm praying that it is) and the doc said it looks hopeful, and "providing it does not herniate" it should be "minimally repairable" (also meaning it could be treated locally, which would be really great! should she live to term...) We'll keep an eye on that, but he says this part looks hopeful.
**I found out later that there is a specialist *in town* who is experienced with omphalocele surgery and he does some work with the NICU here - no small miracle, considering we have to travel our of area for so many other medical issues!**
Her brain is showing some fluid pockets, which may or may not resolve on their own. Something to keep an eye on, but not necessarily something to be worried about. He said, too, that this is not terribly uncommon in higher risk cases, and doesn't necessarily tie in with the trisomy 18. There is a name for that, but I didn't catch it as he was just getting warmed up. We'll look more in depth at that around 24 weeks, when we can get a better guage of presence and the anticipated affect that may or may not have on her brain function.
Her face is showing some signs of deformity, but so far nothing significant. We can not see anything that would affect her health in that respect, only a flattened bridge of her nose and her nose itself appears to be shaped a bit differently... it appears (but is too early to tell for certain just yet) that her eyes may be sunken back some as well, but I understand these to be the typical facial characteristics of her diagnosis and not really problematic - they are more identifiers, similar to how many Down's syndrome children have specific facial characteristics. Not concerning, just somkething we noticed. My only concern with facial deformities would be pallette issues or the like, which cause feeding and breathing difficulties, but it is too early to see if that is an iisue yet or not. We'll take that on if/when the time comes, though.
80% of Trisomy18 babies who have survived to this point are behind on size. She is measuring one day ahead of dates (last measure she was 4 days ahead of dates, so she's still ahead of the game, or right where she should be). 20% of T18 babies don't show the significant growth delays that are so common for this diagnosis. The bigger the baby, the better their chances at life, though.
We go back in 3 weeks for a 20 week scan, with the focus being on heart issues. At 24 weeks, there are other markers to watch for.
The ultrasound was tentatively hopeful. He did leave us with the disclaimer that any and all of this can change for the better or the worse at any time, and there really isn't a way to know if/ how long she will live. Today she is alive, actively moving, and growing well, and for that we are most grateful.
Thank you SO MUCH for your continued prayers for our little one!! It really means a lot to us
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