I'm not really sure what to write concerning today's appt. I guess all I can say is that it really sucked. Jack's liver is 'up' again and his heart is pressed so far to the right that it's right up against his ribs on the right side. We're losing lung tissue on both lungs as well. When I asked the doc what his lung to head ratio was he just rubbed my arm and said he didn't want to tell me a number because it would only upset me. All I can say is that they were visibly smaller then last time when I saw them.
They estimated that Jack weighs 1 lb 13 oz but then said that because so many organs are now in his chest his waist/abdomen is small and that's a large part of the calculation so most likely he's 2 lb or more but we just can't tell. For the first time today the doctor had the 'you should be prepared for all outcomes' talk with me. He said his feeling is that Jack is lucky if he's got a 50% chance of survival at birth. During the ultrasound we saw him trying to gulp amniotic fluid and he was moving his tongue around. The problem is that because there are so many organs in his chest they don't think he's able to recycle the fluid like he's supposed to. I've been feeling bad the past few days with pain etc and the doctor said the amniotic fluid levels are building up. We're not at a critical point yet but he's concerned because instead of gaining lung and maintaining fluid we're losing lung and gaining fluid. It really made me feel bad to see him trying to swallow and knowing it might be a struggle for him. The dr said he's getting concerned about the whole situation and now I have to come in every week. We have to make it to at least 4.4 lb (around 32 weeks) b/c that's the minimal size requirement for ECMO. When I got home the doctor's office called and I guess he was concerned enough to book me an appt for tomorrow at 11AM at John's Hopkins in Baltimore. I'm supposed to meet with a surgeon to discuss "options". Like a babbling fool I didn't ask what that meant ... surgery now or later. I guess we'll find out when we get there. I'm sorry if this update is a downer. I think I just hit a point where the reality/severity of the situation has smacked me in the face. Hopefully I'll pull myself together and get some work done today and get distracted. Ugh. I guess one good thing was the pictures we got today. Jack is totally smiling in 1 picture and gave us a thumbs up in the other. I think he's trying to make me feel better and more optimistic.
OK- I'll update again if there's anything worth mentioning at the Hopkin's appt. Oh yeah...Dr. Kramer is also contacting CHOP to see about us going there.
Love
Vic
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