Last week was a very busy one for Elizabeth and us- one echocardiogram, one visit with the OB, one fetal non-stress test, and an ultrasound to assess her growth! To briefly summarize, there is still evidence of the coarctation of the aorta, the cystic hygroma, and although her head and body are growing appropriately (she almost weighs 6 lbs!), her limbs are seeing the effects of Turner's (they're much shorter than they should be).
These findings combined with the meetings we've had with the doctors have given us a better idea of what to expect after birth. If things don't change:
- There is no reason for a C-section unless something else comes up, and the actual labor & delivery should be able to progress as if our pregnancy were completely normal.
- As long as no other complications arise, we should be able to hold Elizabeth for "awhile" after delivery, but no one knows whether that "awhile" is seconds, minutes or hours.
- Soon after birth, she will have to go Neonatal ICU for testing to see if her aorta will be sufficient to supply her body with blood. Dr. Hornberger, our pediatric cardiologist (fun note - she was quoted multiple times in the most recent issue of Newsweek!) thinks all signs are pointing to needing early surgery, but these tests will tell. Best case scenario in her mind is being able to put surgery off until 6-8 weeks after delivery. Depending on which part of the aorta is affected and how long the involved segment is, Elizabeth will either need repair through the side of the chest (much easier on her) or through the sternum (a much bigger deal). The mortality from this surgery is still about 10%, a number which doesn't seem that great to us. The longer they are able to wait to do surgery, the quicker the recovery should be - older babies heal faster. Because she has Turner's however, she may have a slower recovery due to her compromised lymphatic (drainage) system.
Naturally, we're ambivalent about the potential of surgery and its risks, though we've had several months to prepare for that possibility. Right now, we're actually finding it much more emotionally difficult to think about her being taken away from us to the ICU. Our perspective may seem a bit "off," but after waiting so long for her to arrive, our hearts are heavy about the fact that our bonding time may be shortened. Will you pray with us that whatever time we're given with her will be maximized for her benefit and for ours?
An answer to prayer - We've found a highly recommended pediatrician willing to make room in her schedule (her practice is officially closed) for Elizabeth once she's arrives, and in the next week or two we'll be meeting with her to talk plans. And as the clock ticks down, please join us in praying for the right mix of obstetricians, nurses, residents and medical students to be on duty when we deliver. In addition to the hospital staff, Sara's mom will be driving over from Clovis to help us with the birth.
As the day for her arrival approaches, we feel more grateful than ever for the brilliant and skilled doctors we have - literally - at our doorstep (since UCSF is only a block away!) and while we believe they are reading the reports as accurately as they know how, we also know that it is God who gives life and calls those things which do not exist as though they did. (Romans 4:17). So even as the odds for a completely healed Elizabeth look slim, we still believe that God's plan...whatever that looks like...is perfect. Hopefully the next email you receive from us will be to say we're in labor or Elizabeth has been born! Thank you again for your prayers.
Matt, Sara & Elizabeth