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05/07/2002 Archived Entry: "Sleep Deprivation, Lying Around, Interpretation"
Can we get a show of hands of everyone in the Thé household who got more than 2 hours of sleep last night? (Jake & Sharou, those are paws.)
Geoff struggled out of bed at 5am ... I reluctantly joined him a few minutes later. He drank coffee; I abstained -- it wouldn't do for Baby to be turning somersaults all day. We left for Children's Hospital at 6:15am, after feeding the puppies & letting them outside for a while. Traffic isn't worth mentioning, so I won't. (That device -- mentioning something by refusing to mention it -- is referred to as "paralipsis". No, it's not synonymous with "tulips". Yes, there will be a quiz. No, I really didn't sleep last night -- can you tell?)
We found Children's Hospital right where it was supposed to be, and we were in the MRI waiting room by 7am. We signed in & I was tagged with an ID bracelet. Dr. Bulas took us right over to the MRI room, where I spent a lovely half-hour lying down but not asleep in the machine. They put me in feet-first, so I could tilt my head backwards to see Geoff ... that helped. The machine was *noisy* ... we both had earplugs, so when it wasn't noisy, if we wanted to talk, we had to shout to hear each other. I'm sure we were very entertaining for the folks in the control room. Other than moving my head, I wasn't allowed to move at all -- which made breathing exciting. (Have you ever been 6 months pregnant and forced to lie on your back without moving for 30 minutes? Try it sometime ...)
(Because the technology is called Magnetic Resonance Imaging, Geoff had to remove any loose metal from his person before they let him into the room. Luckily, I was wearing no metal, and therefore didn't have to wear a gown for this. The metal in my ankle posed no threat. I suppose if it had been a problem, my foot would have found itself attached to the machine.)
One of the reasons it took so long was because the baby kept jumping around ... I imagine she wasn't pleased with the weight of the magical MRI thingie that they laid over my belly.
The MRI showed the concentration of the cysts in Baby's lungs, the fluid outside of them, and the displacement of her heart. The fluid has expanded a bit since last week -- that's not a good thing. Her heart is a little further to the right. The MRI films show that the top half of her right lung is good ... the bottom half is mostly cystic. And her left lung is completely collapsed.
Next on the agenda was the sonogram, which showed that there are probably cysts in the collapsed left lung as well, though it's difficult to say how much of that tissue is affected. The sonogram DID show there are no *other* problems. She hasn't got fluid building anywhere but the thorax, and her measurements are all normal.
Because the fluid has displaced her heart a bit, they wanted to do a fetal echocardiogram -- which is basically a sonogram that focuses directly on her heart. Happily, that came out completely normal.
At 11:10, those three tests were finished. We went upstairs to meet with Dr. Hartman, the pediatric surgeon who will probably operate on Baby after birth. We ended up waiting quite a while for him, so Rhonda -- the genetic counselor who set all of this up for us -- spent about a half-hour helping us figure out questions to ask.
Rhonda, by the way, is a WONDERFUL person. She not only set up all of these tests for us, but she shepherded us through the entire process. Instead of sitting in crowded waiting rooms, we went right through the closely-guarded doors into the clinic areas. Even when Dr. Hartman wasn't available at 11, Rhonda made it possible for us to wait for him at one of the check-in desks inside the magic doors. She also offered to find the answers to any questions we have ... and to debunk any horror stories that well-meaning friends and websites offer. (I have had to tell MORE people in the past week that I don't want to HEAR about babies that don't make it ....)
Dr. Hartman's impression is that we should not be pessimistic. He's seen worse cases, and they have survived. He doesn't want to drain the fluid right now, because it will probably reform within 48 hours. He *has* drained fluid before, and the collapsed lung puffed right up into the space it was supposed to fill -- and then collapsed again when the fluid came back. While the fluid returning isn't a good thing, it IS a good thing that the lung decompressed ... it meant that it would do it again when the baby was born and they drained the fluid.
So draining the fluid pre-birth didn't accomplish anything meaningful for the baby, but it did put her at significant risk for an early delivery. Since baby lungs take a long time to develop, they need to stay put for as long as possible -- Dr. Hartman doesn't believe the risk of early delivery is worth the arguable benefit of watching her lung puff out.
If the fluid continues to build, however, he'll need to reassess. So we'll be having at least fortnightly sonograms to determine which direction this is going in. If it gets bad enough, the entire baby -- not just her lung -- would be at risk.
The cystic tissue needs to be removed sometime after birth. Because he usually only sees problems with ONE lung, not both, this is more complicated. He would only do this immediately after birth if she were in severe respiratory distress. Otherwise, he'd wait til she were between 6 months - 1 year old, and fix one lung at a time, to maximize the amount of usable lung tissue at any one point.
I think that's all I know .... now I'm off to take a nap.