Tuesday, January 20, 2009

Post #1: That PWS Thing

So in the process of "blog-lurking" last night, I came upon an idea another blogger had to attempt doing 30 posts in 30 days. I'm not sure she was successful, but it seems like a good way to get into a habit of actually writing about all the potential-blog-topic ideas I have throughout the day. This will be, therefore....

Post #1, with the 30th post being done on February 20....if, of course, I manage to do this!

"That PWS Thing"

Five years ago today, our younger daughter was born in our kitchen! No, I'm not kidding, and that statement would be less interesting if we had actually planned for it to be a home-birth situation. However, we had no desire for a home-birth, and yet apparently S. had been working on being born all day, and for whatever reason I was not notified of her intentions (other than some very, very mild back twinges) until standing in our kitchen, coat and shoes on, telling B. "it's time". Then the water broke and I could tell we weren't even going to make it out to the car, so I then tell B. to "call 9-1-1". He asks if I'm sure, and well, some things you just know! The EMTs arrived with about 3 minutes to spare before S. made her appearance, and she and I both took a ride to the hospital in the ambulance. I remember when I was pushed into the ER area there seemed to be quite a crowd of medical staff waiting; not sure if the EMTs had radio'd ahead that S. was having problems, or they just wanted a glimpse of the woman who had had an emergency birth situation in her kitchen! Our older daughter slept through the whole thing even though her room isn't too far from the kitchen. B. was a real trooper; I'm not sure how he managed to keep from passing out through all of this!

For me, of course, this is all a little blurry. Everything that happened in the next days, weeks and months after S.'s birth was so difficult, such a shock, that the "wow" factor of her exciting arrival gets shoved to the back. I remember the EMT who "caught" her was holding her and basically watching her before we left for the hospital - I think he was either waiting for her to breathe, or making sure she continued to breathe. I know she spent about 10-12 hours in the regular nursery, and then early the next day she was transferred to the NICU. This was a complete shock to both of us. There had been no indication during the pregnancy that anything might be wrong with S., so we were completely unprepared for what the next 11 days would be like for us. The nursery staff found S. to be extremely hypotonic (nonexistent muscle tone), and she had extreme difficulty in bottle-feeding as she could not coordinate the suck-swallow-breathe rhythm which is instinctual in infants.

Before she was transferred to the NICU, I went down to the nursery to see her; she was in an isolette and was very still. I know I asked the nurse about the isolette. S. was transferred soon after, and the first time I saw her in the NICU environment, hooked up to various monitors, I just cried and cried. That moment was like going from a nice warm bath (i.e. a supposedly uneventful, completely regular pregnancy) to being plunged into the icy waters of the North Atlantic in January. Total and complete shock. She was a gorgeous baby, of course! And yet, when I would lean against the isolette and look down at her, I just sobbed and said "I'm sorry, I'm sorry". We spent the next 11 days, after I was discharged (incredibly painful and surreal to leave the hospital without the baby), travelling back and forth to the NICU, spending as much time with her as we could, consistently attempting to feed her via bottle and watching her oxygen sats drop every time. I cried so much in those two weeks.

B. and I were both in shock, I think. If we had had any idea, prior to S.'s birth, that something was wrong I think we would have handled it all so much better. But we had absolutely no idea. S.'s version of Prader-Willi Syndrome isn't genetic, so we had no history of the syndrome on either side of the family as a warning. My pregnancy with her was ordinary, and although fetal movements often stop completely with babies with PWS, S. always moved occasionally throughout the day, so I didn't have that to alert me. Granted she seemed to
arrive rather quickly, possibly owing to the lack of muscle tone, but at the time that certainly didn't make any red flags go up, for us or for any medical staff. Of course as a full-term baby in the NICU she was practically the largest baby there, and in the course of sitting with her, I gathered that there were a dozen infants who had been there for weeks, some of them months. The bill for S.'s 11 days there was huge; my heart goes out to those families whose sweet babies are there for weeks and months!

Well, this is turning out to be a multiple-post topic! To be continued....


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