My dad took this picture of Ava on Saturday when they came for a visit…
All freshly bathed and ready to go!
Ok wow, have we been busy! You would think the days would drag by at the hospital, but I can assure you it’s the opposite, they fly by. And it’s getting harder to find time to blog since I’m spending so much time now with Ava but I have a minute so I will try to catch up.
So as you see we have lots of news so I’ll start with the first good news…..which is very exciting…. when they did rounds this morning, the Dr said that in the best case scenario we might get discharged Thursday! Thursday, this week! How amazing and wonderful.
Now, that of course kinda depends on a perfect storm of everything coming together by then and I’m not so sure that’s possible, but I am very pleased that the word discharge was even mentioned in the same sentence as Ava, that is such good news. But even today they were a little concerned about her fluid levels which was affecting her breathing. And it may be because they decreased one of her meds and if she has to go up on this certain med again we can’t leave. So like I said, many things have to come together before we can go, but at least it’s being talked about, it’s exciting and scary all at the same time.
Now for more good news… the Occupational therapist came today to try to bottle feed Ava and that little monkey took it!! She has never been orally fed in her entire month-long life and she did it and actually took 15 ml from a bottle which was way more than expected. It tired her out though. Because she is working hard just to live and breathe – and she breathes more than a breath per second any effort like sucking wipes her out, but she hopefully can build up some stamina and increase her amounts.
Now the bad news… they are more than certain that Ava’s left vocal cord is paralyzed due to nerve damage that she would have gotten during surgery. And it’s not hard to tell, the poor baby can’t cry, she is very very quiet, in fact her hiccups are noisier than her cry. So hopefully the nerve damage will heal, hopefully within 6 weeks, and even if it doesn’t, in baby’s the vocal cord on the other side will often over-compensate. I hope and pray my baby gets her voice back!!!
And what I learned today from the occupational therapist is that your vocal cords protect your wind-pipe when you swallow. So if they aren’t working, or in her case where one isn’t working, it’s harder to control whether fluid you drink goes down your wind-pipe or your throat to your stomach. So in order to make it easier, they have to thicken the fluid that will go in Ava’s bottle… and yes, I am saying bottle and not breastfeeding and that’s our reality right now. Tomorrow we are doing a swallowing study with her where she will swallow glucose with barium and they will x-ray her to make sure that fluid is indeed going in her tummy and not her lungs – so please pray for that. It’s not ruling breastfeeding out, just right now we need to wait for her to heal, but don’t worry, we will still practice, and do lots of skin to skin time.
So that is just a few of the the things going on right now -hopefully I can post more tomorrow!