Hello Family and Friends,
Matt will follow up with a more formal explanation of the findings, but the short story is, there is a definite Coarctation, and the left heart is still small, though not definitely problematic...(they'll do tests after she's born)
In light of these findings, we've got a better idea of what things will look like after she's born. If things don't change, the prognosis for birth is:
As long as there are no other complications, I'll be able to hold her for a few moments (don't know how long) right after birth, then she will definitely have to go to the NICU or the Cardiac ICU where they'll test her vitals and give her a test to see how soon she'll need surgery. From what I could tell, Dr. Hornberger (her Pediatric Cardiologist) is leaning toward her needing surgery soon after, but it could be anywhere from a few hours to 6 weeks. If she doesn't need immediate surgery and has no other complications, she should be able to come home with us for a while before the surgery. If she does need immediate surgery, they'll determine which one (the less dramatic entry through the side, or the open heart surgery through the chest wall) and then she'll be in the NICU (or CICU) until she's recovered. (the longer they are able to wait to do surgery, the quicker the recovery should be - older babies heal faster...though because she has Turner, she may have a slower recovery due to her compromised lymphatic (drainage) system)
Ironically, the toughest part is hearing that she won't be able to stay with me after birth and possibly won't be able to come home with us. My heart is heavy about this. Part of me wants to just go in and take her out now, just so we can deal with a "definite" scenario. Waiting and not knowing when she'll come, and then after that what will happen, is a little tough.
We're doing alright. Tomorrow we've got another apt. with my OB - will you pray that Matt can come? My last appt. with her was really frustrating as she breezed in and out and I couldn't ask questions. Matt will be able to remember what we need to ask her and hopefully will be able to decipher her med-speak for me.
We'll have an ultrasound on Friday - just to measure her size and see what's going on with the Hygroma and the Cerebellum...
Will you pray also that we would have favor with the Pediatricians that we've emailed? Our OB has recommended us to some Sr. Faculty (who would be better at dealing with a Turner case and all the complications that brings) but so far none of them have responded to our requests for them to open their service to us (they're technically "full" and not accepting patients, so this is how it's done). We'd like to get in with one of them and have an appt. before Elizabeth is born so we can set up the game plan for how to treat her after birth. So many things to think about.
Matt went straight from our apt. to his Wed. Conference, so we haven't had a chance to process, so as a result I'm not really wanting to get on the phone...I'm not doing badly, just don't have much to say. Thanks for your prayers. I was reminded in the moments before we left for the Echo...God's plan is perfect. We still believe this.
Love you all,