Today had a rocky start for another reason unrelated to Nora, but that turned out to be no cause for alarm so I won’t elaborate. Only,”Thank you, God!!!” about that.
Nora has had a really really good day today. She wasn’t doing any uncomfortable grunting noises at all, very minimal fussing and in fact spent much of the day squealing as you may have seen on her FB page earlier today. Incase you missed it or would like to see it again:
Her heart rate is still lingering in the 170s and sometimes on into the 180s, but our cardiologist sounded pretty confident that lasix will fix it. If not, Nora has plenty of headroom to increase it further. Nora was put on this medication when she was about 5 lbs. so of course now at 14 lbs. 6 oz. it definitely would need to be boosted! While Nora isn’t presenting any symptoms of edema she IS taking in a whole lot more “milkies fluid” than her sweet little body is used to! This all seems to make much more sense after William and one of Nora’s nurses spoke with Dr. H. It could be that this other doctor we saw was just coming at it from the trisomy 18 angle. The problem with doing that is that every single child with trisomy 18 is very very different. It’s not fair to slap the “incompatible with life” label on them, sometimes even before they are even born and given the chance to prove otherwise! I don’t mean to imply that this other doctor was dismissive of Nora or inappropriate in any way. That wasn’t at all the case! But with each child being so different it’s almost impossible to go with a standard textbook treatment plan or course of action. There’s no such thing! I would also have to guess that with trisomy 18 being so rare there just isn’t a whole lot of experience available.
Another load lightener was the knowledge that Nora’s echocardiogram results aren’t as drastically changed as initially reported. We will revisit that again on April 4th for her follow up.
In the mean time, I am relying on God to pull us through this rough patch just as He has all the others. Nora is happy and content as ever — world record sweetness today and this evening. That’s reassuring past any medical reports or test results!!!
Thanks for praying for me, everyone! Mommy will keep you updated on me! She tells me how many people love me and all the nice things you say. I love all the hugs and kisses you’ve been sending thru Mommy! I sure feel LOVED!!!
This was the KLOVE verse of the day:
For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever!
(2 Corinthians 4:17 NLT)
LOVE that reminder!!!!