Rebekah finally got her bath around 9:30 last night. She was not really pleased by our efforts to clean her up, either! :) It is so fun to see her whole tummy now that everything has been removed. The larger wound at the bottom of her incision is where the chest tube was, and the two smaller wounds on either side of that are where the pacemaker wires went into her heart. All of those are now gone until our next surgery!!
Rebekah was not appreciating bath time as much as Mommy was!
I actually was able to speak to Dr. Ringwold this morning about several questions we had. First, Rebekah's calcium looks great - the best it has ever been in her little life! They will recheck it again tomorrow (more for my peace of mind than anything) just to make sure that it is continuing to remain at acceptable levels. So for now it looks like she will not need a calcium supplement, although that could change and fluctuate throughout her life.
Now to discuss Rebekah's feeding......She is scheduled for a follow-up swallow test on Friday. We are not sure yet of the exact time. Dr. Ringwold was very honest with me this morning, and his feeling is that Rebekah will need to go home with a feeding tube. She has so many factors that she is working against in order to eat, and the goal for the next few months is growth. At this point, the doctors are more concerned with her growth than they are with how she is eating. So, given the fact that babies with DiGeorge syndrome are typically small and have a hard time growing, and the fact that our babies tend to be small anyway, and the fact that Rebekah is aspirating both her feeds and reflux, and the fact that she only has one truly working lung and doesn't need it infected from aspirations, and the fact that she is refluxing significantly and add to all of that the fact that she is a heart baby and recovering from open heart surgery, the doctors feel it is in her best interest to move ahead with the feeding tube. (Anyone want to diagram that sentence???? :)
All clean and cozy and ready for a nap
There has not been a final decision made yet, but it is likely that Rebekah will have surgery again by the beginning of next week to put a permanent feeding tube (called a G-tube) in her stomach. I won't give a lot of details now because there are several different options the doctors could choose with the feeding tube surgery, but we will be sure to let you know more information about it when we know for sure what is happening.
What we do know for sure is that most babies with DiGeorge do have a feeding tube for the first year or so of their lives. During that year, Rebekah will continue to receive OT so that when she is able to eat by mouth, she will have built up the muscle tone and coordination of everything involved in the eating process. Rebekah is also having trouble with her feedings compressed to one hour. About half of the way through the feeding, she becomes very agitated and cries a lot. It is likely that compressing the feeds over a shorter period of time is probably going to distress her even more. If Rebekah does have the G-tube put in, she will go home with a small pump that we will be able to put her milk into and we will be able to run it over a time that is comfortable for her.
Other than the feeding issue, Rebekah is having a great day! She is sleeping lots and looks so peaceful snuggled up with her blanket and teddy bear. :) Drew is probably coming back down tomorrow, and I know that Rebekah will be happy to have her Daddy back - and so will I!! :)
Nancy
