My apologies for the silence yesterday. I know many of you were eager to hear how our first official day went. We are ever grateful for your interest but we had an all day hospital day and a moving day and a first-day-in-a new-town-and-where-do-they-sell-pizza-here? day all rolled into one. By the time we were still enough to update you, we were reduced to grunts and snores.
First things first. All went well at the hospital. We arrived at 8:15 and left about 5:00. In between were lots of imaging and testing and a handful of consultations. We were able to confirm all we knew before. Little Zelie's heart is beautiful as are her feet, her mouth, her kidneys and lungs. We can absolutely demonstrate that the SB is the one and only issue. Also, thanks to some pretty cool MRI images, I can demonstrate that she is, indeed, an acrobat!
As far as the SB itself goes, they believe the lesion on her back begins slightly higher than we previously thought. Which in all practicality means nothing. They could be wrong, and admit that freely. But even if they are not, what matters is not so much the position give or take, but which nerves have actually been exposed. And, of course, there is no way to know that until after she is born, recovered from surgery and can be observed over time. Her first and second ventricles have become further enlarged, and again, while this is important to her surgeon, it is only worthy of note at this point, and not a reason for alarm. Particularly in utero, between the capacity of her skull to expand and the neutralizing effect of the buoyancy of the amniotic fluid, the impact is minimal at this time.
We met with the developmental pediatrician. A wonderful doc who has devoted about 30 years of practice to dealing with SB kids in particular. By and large that conversation simply affirmed what we have been learning on our own and sharing with you. Lots of things are possible. Some, the more serious possibilities are less likely. Some things that are more common, neurogenic bladder/bowel, some ambulatory delays, are much more likely. She provided a very well rounded overview, and offered to us many, many resources as time goes on.
She also gave us a quick rundown of what we can expect in the hospitals. The short version there is that we can anticipate four days in the NICU for Zelie and four days at The Brigham for me. After that, Zelie will most likely go to the neurology floor and there one of us will be able to stay with her 24/7. She also confirmed that there should be no issue with having our sweet girl baptized before her first surgery.
As for our moving day -
We got into the apartment around 5:30 last night. and are quite happy with it. It is big enough, comfortable, clean and well supplied. If there is a drawback, it is all the stairs. But! Everything has stairs here. When there is no room to spread out, Boston not exactly being a town of ranch houses, you go up. I'm sure we'll all survive, but if you plan on visiting us know ahead of time that the bathroom is up a stairwell not unlike those I've climbed in lighthouses. You've been warned!
The neighborhood itself has completely charmed us. Little narrow, curving streets that wind into churches or bistros, bars or grocers. The Society of St. Joseph on one corner and the official "Connah Store" on the other. The only thing more delightful has been the people. We're especially grateful to the firemen across the street for a fantastic pizza joint recommendation and the pizza bar bartender for directions on where to get milk. Everyone, and I do mean everyone, has been warm and kind.
The weather is fairly mild. We woke to snow flurries, but they passed by mid morning. We're not wandering around without jackets, but we aren't shivering indoors either. That day may come but it is not today.
Tomorrow is another day at the hospital. We have consults with lactation, neurosurgery, Maternal Fetal Medicine, a tour of the NICU, and another round of ultrasounds on the schedule. We also hope to meet with the Chaplain at Brigham and Women's somewhere in the mix. I anticipate we will be late and long coming to the end of it all. Still, perhaps not so weary as yesterday. So keep an eye out. I'll do my best to see that some manner of update gets published out here before we lumber off to bed.
And now, gentle readers, it is nap time - at least for pregnant ladies - but I highly recommend it for anyone who can manage it.
zzzzzzzz
No comments:
Post a Comment