Hope: 1, CPAP: 0


Our first night with the CPAP turned out to be our last for a few days.  The tubing that came with the home unit was very stiff and did not move with Hope as she fought the tubes in her nose, as a result she was able to dislodge the tubes pretty easily.  We tried several different positions to no avail, Hope put up a valiant fight and cried a lot.  So we went back to the oxygen and she slept, well, like a baby.  The next day we called the home health service to see about getting a more flexible tubing along the lines of what we had in the hospital but didn’t connect before the holiday.

I’m a little hesitant about the CPAP right now because Hope is supposed to be on Reglan while using the CPAP because of her reflux.  We’ve had her on  it for a week at two different dosages and each time by the second or third day she is not herself.  Last night see seemed disoriented, rigid, and uncomfortable.  Today she was a little better but was clearly bloated with gas that she has had trouble expelling.

I had no trouble feeling bonded to Hope after she was born, but that “motherly instinct” has been a little slower in coming this time.  With Grace, after a couple of weeks Tammy and I could distinguish between her different cries and read her body language intuitively.  Hope on the other hand, never cried at all and moved so little that we were “cue-less.”  She took her feedings laying in bed from a tube, far more impersonal than breastfeeding — and according to a schedule that was anything but instinctual.  Though I loved her fiercely from the start I felt utterly clueless as to what she needed from me.  The first few times Hope cried (usually just one or two wails), Tammy and I just stood over her crib looking at her — it never occurring to us to pick her up.  That’s what you do when your baby cries, how did we forget?

It’s only in the last six weeks that I’ve begun to feel the return of some kind of instinct and, more importantly, to learn to trust that instinct.  It’s a leap of faith most of the time because Hope’s cues are still very subtle.   I’m really just doing what my heart and my gut tell me to do.  Right now it’s telling me no more Reglan, but what that means for the CPAP I don’t know.  We see the GI specialist this week, maybe there are some alternatives and the CPAP isn’t working for us now anyway. 

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