The latest

Hi everyone,

Here is the latest - it looks like Ryan will be coming home sometime towards the end of the week or the weekend. He didn't respond as well to the second round of epogen as he did the first and the red blood cell count is low. All babies drop their count at around 6-8 weeks and since Ryan's wasn't that high to begin with, a drop is really affecting him - hence his increased sleepiness. Since he's so tired, his feeds are affected causing him to not have enough energy to coordinate his breathing/sucking /swallowing. We know he can do all of those (we saw it last week) he just doesn't have the energy to do it. I nursed him this evening and he did beautifully (no episodes) and that is most likely b/c he can control the flow whereas he can't control it from a bottle.

So, what does all of this mean? There is a possibility Ryan will need a blood transfusion. This will be determined not only by a number, but if more changes occur (i.e. drop in weight, more episodes during feedings, etc.) If he does need one, it's pretty much a 24 hour process from the time they order the blood to the actual transfusion.Once he gets the transfusion, then he'll be able to make his own red blood cells.

So that's the scoop. I know everyone was really looking forward to Ryan coming home this past weekend and it's a bit disappointing. However, it's better that all of this happened now instead of when we got him home only to have to take him to CHOP or St. Christopher's. We've waited this long, we can wait a bit longer to make sure that Ryan is truly ready to come home. He's the only one who knows when he's ready and when he is we will be grateful that he is healthier and well.

Here are a few pictures

1) Ryan and Nurse Pat

2) Nitty keeping Ryan's cradle warm (don't worry, she was kicked out after the picture and we put double sided tape on a piece of paper so she doesn't do it again)

3) Ryan and Daddy