Remember this tiny little Thumbelina baby? It's crazy to look back and see pictures from the beginning. Her legs were thinner than Clayton's fingers. There are a few pictures that I never posted and I don't know if I ever will, because they scare me so much. We've come a long way, baby.
Sweet baby Elsie is doing great. She is up to a hefty 5 pounds 2 ounces. She is doing quite well with her breathing, and has been weaning down on her oxygen. She is at 2.5 liters per minute on a high-flow nasal cannula. It is my understanding that as soon as she weans down to 2 liters, then they will do the swallow study to see how much her paralyzed vocal cord affects her swallowing. And if all goes well after that, then she will begin learning to eat by mouth. Another step closer to coming home.
Elsie had another eye exam on Monday to monitor her ROP, and it turns out that she has gotten slightly worse. They will continue to monitor her eyes and will give her treatments if necessary to stop the disease from getting worse. 90 percent of the time, ROP will resolve itself and go away before it becomes a problem, so we are hoping that this will happen.
Tomorrow is Elsie's 36 week head ultrasound. Just after she was born, it was determined that Elsie had a grade 2 bleed on the right side of her brain, and a grade 4 bleed on the left side. Grade 4 is bad. Tomorrow's ultrasound, we've been told, will hopefully be able to let us know a little bit more of what we can expect as far as long term brain damage, if there is any. So far, our nurses have been pretty optimistic about Elsie's condition; she responds to noises, turns her head to look where the noise is coming from, moves her limbs, and other things that seem fairly "normal". I'm trying not to think about it too much, I tend to be like an ostrich who buries her head in the sand and hopes that her problems will just go away if I ignore them, but it is a nagging worry in the back of my mind. Clayton is quite worried.
Anyway, the ultrasound will be done tomorrow, and the doctors will discuss the results with us at Elsie's 90 day care conference on Friday afternoon. I can't believe that it has been 90 days, three whole months, since she was born. It has been a long and crazy ride, but you know, I thought it would be a lot worse than it has been.
She has come such a long way and has overcome so much. I pray every day that everything will turn out alright. I believe that Elsie has a special mission here on earth, her life has already touched so many people. I love you!
ReplyDeleteDearest Ruth and Clayton! Good news she is growing! While I know there is not much that you can do there is things that you CAN do!
ReplyDelete1. Take things day by day, hour by hour if needed.
2. Treat her like there IS nothing to worry about. (burying your head in the sand at this point is maybe NOT a bad thing ;-) Talk to her, sing to her, etc. Treat her like you would Evja. Best advice I ever got! Most likely you WON'T know how the bleed will affect things until you reach that point in her life. Then and only then can you deal with it.
Yes Grade 4 IS bad but they don't know how Elsie will fight it! They don't know how her little brain will repair itself and find new paths around the damaged areas and most of all they don't know how miracles can happen :)
Love you guys!
Good advice from your friend Christine -- just love Elsie like you would any other baby! She is yours forever. Any "broken" parts will be mended eventually. In the mean time, everyone will adjust and adapt if needed, and Elsie will have a good life because she is loved and cherished by so many! Keep the faith!
ReplyDeleteSo true. Thanks for putting it into that great perspective, Mom!
DeleteI can't believe how big she is! Go Elsie! I know our own experiences with Sam are totally different, but I will let you know how we deal with the unknowns and the future knowing she might not live a long life. We just live today. We treat her like any of our "normal" girls and then modify when we have to. When she can't walk anymore, we just "backpack" her around piggy back style. We let her fall, we let her get too tired, we let her live. We don't think about the future too much. It will come when it does. And then I'll deal with it that day. Until then, we just play. You are a strong, amazing woman of great faith. Keep up the good work, mom!
ReplyDeleteThanks April, great advice :) YOU are a strong amazing woman of great faith, too!!
DeleteSo amazing. Such wonderful advise. Keep up the good work.
ReplyDeleteSo amazing. Such wonderful advise. Keep up the good work.
ReplyDelete