Yesterday was my original due date. So crazy that Ryman is already 17 days old today. She is kicking that ammonias butt right now too. This morning it was 17 and they are moving the blood test for it to every 12 hours instead of every 8. That scares me but I know it is a good thing.
I got to meet the surgeon and the transplant team from Georgetown yesterday. They were awesome and were very happy with Ryman. They said she looked amazing and that her liver isn’t enlarged which is great. The dietician team came by also and talked about what it would look like for us as far as the special formula goes if we were to get discharged before the transplant. The genetics team has brought this up some too. You see, Ryman is doing so well that they think if it continued to be so that we would be able to take her home before the transplant. Home being within 1 hour of the Georgetown hospital. Jeremy and I know that is an amazing thing but we are scared to death to take this girl home with us. They ensure us that they will not let us go unless they are positive we can do this on our own and that Ryman is stable enough.
The genetics and metabolic team think some of the reason she is doing so well is that she is growing and using up all the protein they are giving her. She is currently off of all of the meds that remove ammonia from the blood and is getting almost as much protein as a normal baby would get. God is holding her tightly and helping her grow.
I get to feed her by bottle every 3 hours. No more congruous feeds. She gets about 2 ounces and what she doesn’t finish goes in through her NG tube over 30 mins. I got spit up on for the first time today. Funny that I smiled when it happened, cherish the small things. She is not happy when she is hungry either, she has such a strong cry. I love to hear it :).
We miss dad lots today, we know he would love to be here feeding her bottles!
Praising God for every moment I get to hold this nugget in my arms and feed her. She is such a strong little girl already and I am so blessed to be her mom.
Big thanks to my Nashville mommy friends for the beautiful Tulips. Felt so special to get a Mother’s Day surprise this morning. I love you guys!
Corey made breakfast again, amazing!