Newest ultrasound - 17 weeks

We got in and had a pretty detailed ultrasound this week (Monday)...  Faith is still too small to be able to get a good view of her heart, so we'll try again, looking specifically at heart issues the first week in January...

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

Catching up - butterfly princess has a birthday, and more!

Well, I'm a bit behind in catching up here, so here's a brief synopsis.

Thanksgiving was quiet, nice, and just us (which makes quiet a relative term, as there are 11 around our daily table...)  We changed things up a little, and kept it simple.  Natasha, 17 now, helped prepare the meal, which helped make the morning preparations a lot easier and faster.

The day after our little Butterfly Princess had her third birthday!  Normally we decorate the house and put up the Christmas tree on Thanksgiving evening, however, she's had a bit of confusion about her birthday being the same as Jesus' birthday, so we decided to save the tree until AFTER her birthday.  Her little party (again, just us) was simple but fun - she danced through much of the day, wearing her pink ballerina butterfly princess wings we found at the dollar store, and had a lovely time of it.  I did take a couple of pictures, but will have to try to post them later.

Last week we got a wonder of a snow storm and ended up being snowed in (rather, drifted in...  we only got a few inches of actual snow, but with the open spaces around us and the barn placed where it is, we had a great deal of drifting from the high winds, so we were drifted in for 3 days, which was quite nice.  It enabled us a few down days and some quiet R&R together.  We did finally get back out Wednesday, which was good timing, since we needed to make a trip to Billings Thursday for Ben (4) to see the eye doctor there for a follow up.  Not surprising, at his appointment we found that his glasses are not doing the "trick" for his eyes, and he is in need of dual eye surgery.  His accommodative reciption is no where near what Rebecca's is, as she probably will not need surgery after all,her glasses helping tremendously.  Ben is now scheduled for eye surgery in February, and it is expected that he will not need glasses anymore after the surgery, so that is good.  We have every confidence in this eye doctor and know him to be one who will only recommend surgery if it is the least invasive helpful measure.  He has been treating Rebecca for her eye condition for just over 3 years now, so we have a bit of history with him, and come to find out, he has also treated several children with Trisomy18 over the course of his career, and said he is quite willing to treat our little Faith, should she make it that far and need eye care (which is typical for t18 children).

Caleb is set up to have a hearing evaluation - I suspect he is fine and is just slow to start talking (although he has taken some forward steps since I requested the authorization from our insurance - go figure!) so we're having his hearing tested just to be sure nothing is holding him back...

We've also had 5 of the kiddos in for dental check ups in the last week, with a couple of follow ups in two weeks for sealants and one of the girls needs to have a couple of baby teeth removed to make room for adult teeth that are already crowding in (but her jaw is too small for all those teeth, and they are starting to go crooked with the crowding, so we're going to take preventative measures by having those baby teeth out.

Anyway, it's been all sorts of busy here, taking care of medical and dental.  TJ is healing nicely, though his cast got wet when we went to Billings - who knew that a little bit of snow on the heel (by accident) would be enough to damage a cast and cause it to crack?  Well, we learned - so we had his cast changed out on Friday.  X-rays show more healing than we expected (yeah!) and he is well on his way to recovery.  It is expected that he'll still be in a cast for another 6 weeks before he goes into another walking boot.  In the meanwhile, I'll be his driver to and from work, appointments, and errands again. 

Retirement is just over the horizon, too, as his last day of work for the military is the very beginning of February, and then retirement on April 1.

Lots of changes on our horizon.

I think those are the highlights for now - we have another ultrasound in another week, but in the meanwhile, I did find an inexpensive ($35.) doppler for at home use, so we can listen to Faith's heartbeat at home.  The peace of mind was worth every cent.  I'm very thankful for the ability to hear her each day, and even more that it also allows my husband the chance to feel more connected with her while we await whatever it is that her future holds.

We're back above sub-zero temperatures this week, after a week of very cold days here.  The kids are excited for the warmer temperatures that will allow them play time outside and in the white stuff!

Anyway, that's all for now...  I will update more after our next ultrasound unless we have something before then.