Tuesday, June 2, 2009


Yeah, I can't believe that. I am still sort of stunned by the fact that my little man turned 2 months old yesterday, however isn't due for another 26 days. That is, all things considered, really very freaky.

However, on the topic of my little man, he is doing good. They have upped his high flow to 6 hours daily. WEEEE!!!! Hoping it means that we will start to hear the word "low flow" being tossed around soon. Seriously...it has been over 2 months now. I hate that when I go in to visit him at the NICU, babies who have been there for 2 weeks who were born at a younger gestation than him are chilling out on the low flow and looking to be transferred down to level 2 while they are still within their first month of life.

I know, I know. You can't compare babies. But still, it is bloody frustrating. I mean, I had the lovely shots in my hips which were supposed to mature his lungs...most of these ladies didn't. Riley didn't have to be resuscitated...most of these babies did. Riley is 63 days old...most of these babies are under 30. Why the hell can't he get rid of this CPAP?

Yesterday, he did amazing on the 6 hours of high flow. Rocked it out at 35% for the entire 6 hours...and stayed in the mid to high 90s the entire time. Then they flipped him back to CPAP...at 40%...because he kept desating at anything lower. Seriously? Seriously...what the hell is that?

Anywho, rant over now. I am still happy that he is doing so well, and that he is starting to make progress, and that he is doing good with the breastfeeding. I am just very disappointed with seeing every other baby around us move from intubation to biphasic CPAP to CPAP at room pressure while my little guy is going ass backwards and keeps going up in necessary oxygen on the bloody CPAP.

I guess the worse part is that there is nothing that can be done, and no reason that can be found for this. His lungs appear to be fine and very well developed. He just doesn't seem to have the ability to keep his saturation levels up. And I am getting really, REALLY sick of hearing "well, he will do it on his own at his own time". I know this. I realize that I won't have a twelve year old still sitting around in the NICU. But that doesn't mean that all the false hope of him moving to a level 2 and being home before his due date that I was filled with from the comments of how wonderful he was doing and how healthy and strong he was (all things being considered) doesn't affect me every waking hour. And the fact of the matter is that if I were to have had him today, he would be coming home with me tomorrow.


1 comment:

Keltie said...

Oh, god. I'm so sorry this is such a frustrating roadblock. And I know what you mean about getting frustrated with even the most well-meaning comfort from people. You hate to feel angry about it, but when you're having to deal with the problem just the same it gets old, fast.

Once he does get off that cpap, though, I wonder how quickly they'll kick him out and send him home? I was amazed at how fast things moved after the cpap business was finally finished with, and since he seems to be taking so well to nursing he'll be a good candidate for going home quick, I imagine. Well, I'll keep my fingers crossed that something will click for him, breathing-wise. It's good that they aren't seeing anything actually wrong with his lungs!