Friday, May 7, 2010
I have met so many amazing moms and their kids during our stay here and online through facebook. Today a few of us got together to share stories. I can't express how much their support has helped me. It is a bond that I will cherish for the rest of my life. It was great meeting all of you and your beautiful children!
Had a great day with Jake. Jake is around 8 and a half pounds and I think the time and weight gain is helping with his breathing. I see him all of the time so its harder for me to notice the change but his main cardiologist mentioned his breathing seemed like it was improving. Then Lauren his speech therapist (they work with the kids on feeding) came and also commented that his respiratory rate was much better. Tonight when I called to check on him his night nurse also said he was breathing in the 60's. He has always had a baseline in the 70's. I am afraid to get my hopes up but I am praying this is a trend that will continue to improve.
In wired but good news Jake pooped today lol. He had been constipated and I felt so bad for him because he kept baring down and was not happy. We were going to give him a suppository and then as if he knew and did not want it he pooped.
As I said earlier Lauren came back today to work with Jake with bottle feeding. Although his respiratory rate was better he still works really hard when eating by bottle and wears himself out. Our goal right now is to just be able to feed him once a day for a short period of time. Just enough so he won't forget the taste and the reflex of feeding by mouth. Then once his breathing gets better we can do more.
We got a good pattern and I am not aloud to do it once a day even without them. We let him eat from the bottle for about 2 minutes with small breaks about every 5 swallows. Give him a break for a few minutes then do it again. Then we stop. I know that doesn't sound like much but for him it is. Its the equivelent of climbing a mountain while drinking as you gasp for air. If it were up to him he would chug the bottle but its so hard for him because of his breathing. He has been doing great though!
So another great day with my baby boy!