Shelly has finally been able to fall asleep, so now's my chance to try to sum up our day for everyone. Last night we checked in around 8, and they poked and prodded Shelly for a couple of hours. Took awhile to get the IV in, plus drawing blood, a TB test, and dozen other random things. We were able to get a decent night of sleep in, though.
Our morning started at 5:30. They put an epidural in her back (without meds yet, just so they could start it flowing before she woke up), got the various meds ready to go in the IV and epidural, got her bed all ready to go. They wheeled her down to the OR prep room, where we again met lots of the people who would be in the room (there were probably at least 15). They made her drink something horrid and gave her some more meds; then it was time for me to say goodbye, and they took her in shortly after 7. I went upstairs, twiddled my thumbs, tried to trick myself into being interested in watching senators grill Sotomayor, and waited.
The first news came at around 10:30, when Dr. Gupta, the neurosurgeon whose part in the process was being in charge of closing Kaitlyn's lesion, came up to my room after he was done (and while the other surgeons were still working on putting her back in and closing up Shelly). He said everything was going very smoothly. The lesion was flat, not bulging outward like most myelomeningoceles, but it was large, as we knew beforehand. Not only was it long, stretching from L2 to S1, but it was also somewhat wide, oval in shape. Thus, it was not possible to simply stretch her skin together, so they instead sewed her skin to a synthetic patch to close the opening. (This issue does happen sometimes in these surgeries.) Dr. Gupta explained that the patch was now about the size of a quarter, and as Kaitlyn grows, her skin will probably grow naturally over the patch by the time she is delivered. And even if not, it will still be ok -- she (and her back, and her skin) will grow, but the patch will not; so the patch will be a much smaller area of her back, proportionally, by the time she is born. It would then be a very simple procedure to remove the patch and sew her skin together. That will not be a high-priority issue, and could be done in the first week or two after she's born (and she may not need it anyway).
So Kaitlyn appears to be fine, surgery a success, and there is not much else we can do but wait until she is born. I do want to point out, in case we haven't clarified already, that we fully understand that we will probably never really know for sure whether this surgery made a difference for her. Even when this clinical trial concludes, and they publish results saying whether or not these surgeries do result in average net benefits, we won't have a clear idea whether or not it made a difference in Kaitlyn's case. That's the nature of a clinical trial; they obviously hope it can make a difference, but there's not concrete data yet to support that intuition, and we are the guinea pigs. We understand that. But we do feel like everything that has happened to us over the past few weeks and months has led directly to us being where we are now. It seriously felt so inevitable, even when we reached the randomization point -- we knew it was 50-50, and were desperately trying to convince ourselves that either outcome was equally likely, but we still both felt that we would each be pretty shocked if we were not assigned to the prenatal group. It really has seemed like a collision course towards this surgery, the whole time. And I know our journey is far from over, but each step life takes us lately seems to be a accompanied by a confirmation that the previous day's events were all carefully planned out by our Father in Heaven. We feel so incredibly blessed.
Now, to the hard part -- the rest of the day, which was not kind to Shelly. (She's ok, but utterly miserable.) She was finally wheeled up, accompanied by no less than 10 or so doctors and nurses, who brought her into our room and set about hooking up meds and breathing tubes and baby monitors and doing a million other frenzied things that I can't begin to catalogue. She was very hot when she woke up, a side effect of the drugs they were giving her to stop contractions, and it took a few hours of directly facing fans on her on high power for her to finally cool down. The rest of the day was a constant battle against those darn contractions. Basically, during this kind of surgery, the uterus gets pretty upset about the situation, so she's had contractions all day, ranging from one to five minutes apart; it seems like they are gradually slowing down, but they really can't reduce the heavy meds until they stop completely. The meds are stronger than just the regular stuff one gets after a typical surgery, and she's needed higher doses than usual in order to try to quell the contractions, so she's felt pretty awful -- hot, sweaty, exhausted, dizzy, groggy, light-averse, tingly, nauseous, dry heaving... you name it. And that was before the epidural stopped working; for some reason it wasn't reaching her right side, and the contractions started huring quite a bit as well. They were particularly painful along the site of the incision, and Kaitlyn's moving around didn't help either. They tried repositioning the epidural catheter, then later decided to redo it completely, and she laid on her side to try to get the drugs to drain that direction... finally, after about three or four hours, they were finally able to get her pain to subside.
Anyway, I hope she's not upset later on that I posted all of this, but I really do find it heroic, and wanted to let everyone know how proud I am of her. Shelly said beforehand that she wanted to do this in part because Kaitlyn will probably have to go through many surgeries throughout her life, and she wanted to at least show she was willing to do one for her, and couldn't bear to live with herself if she were too chicken to go through with it. But of course, anyone who knows Shelly knows that her motives were much more altruistic than that. (Plus, she will always have this to hang over Kaitlyn's head: "I had to give birth to you twice, and the time in between was even harder!") It's truly a remarkable thing, what a mother will endure for her child she's never met, and I don't want to disparage what other moms go through, but it's pretty rare that anyone ever has to go through a c-section and then immediately put the baby back inside. And yet, despite enduring the most miserable day of her life (and likely facing at least a few more to come), I know she wouldn't even think twice if she had to do it all again for Kaitlyn.
Anyway, enough martyrizing of Shelly. She is healthy and healing. Hopefully, tomorrow or the next day, she'll feel up to phone calls, but we'll play it by ear. We love you all so much. --K