100 Days

This past Tuesday marked 100 days since the girls were born, and 100 days of NICU for Lily. My mind can't really comprehend that. 100 days seems so long. The time has gone so fast, which I guess is a good thing. I'm hopeful that the remainder of her time away from home will go just as quickly.
I can't help but feel sadness when I think about it though. I am gripped with grief sometimes when I think about how I won't get that time back with her at home. I will never have her first few months of life over again and they were spent in the hospital, filled with strangers and surgeries and lines and tubes and xrays. I know I should be grateful that she's doing "well." She's stable, and just that fact that she's here is kind of a miracle when you think about all the things that were needed and are still needed to keep her alive. But I still grieve the loss of normalcy and the loss of expectations for what our lives would have looked like with all 3 girls at home.

But enough reflections for one day. The surgeon tells us that Lily's next gap study will be mid-May, so probably in a couple weeks from now. Dr. Elliot told Joe after the last gap study that if her esophagus has grown and the gap has become smaller, then we will stay the course and hopefully repair her here when she hits the 2cm or less mark. If she has not had significant growth, then we will likely start the process of transferring her to Boston. We don't know what that would mean for us as far as jobs and who would go out there with her for how long. It's a huge questions mark, or many question marks really. I've heard that it can be difficult getting insurance on board with the transfer. We would really appreciate your prayers surrounding this. I can't wait for the day when I can give the news that she's coming home. Somedays it feels like it's so far out of reach.

I do have some good news now! The cardiologists are very pleased with how Lily's heart is doing. We thought she may need to have her VSD closed as early as 2 months old, but her pulmonary artery bands are holding up and she continues to have near perfect oxygen saturation and lab levels. They still anticipate having to surgically close the VSD, but the longer we can put it off the better. Open heart surgery isn't easy to recover from for anyone, let alone a small baby. The cardiologist said we can stop doing echocardiograms to monitor her heart until there is a need for it. They were doing an ECHO every other week, but now we don't need one unless she's about to go to surgery for her EA repair or if she starts to be symptomatic (low oxygen saturation etc.)

Cora is doing well. We just increased her reflux medication dose because she's getting bigger. 12lbs! She's a pretty good night time sleeper now which we are so grateful for. Rose is going to be 2 in a few days! We got a play structure/swing set for her birthday present. Joe and his brothers put it together last weekend. She is beyond excited to play outside every chance she gets. She spends a lot of time at home these days (as most of us are) and loves to get away and go for a ride in Daddy's twuck :)

As always, we are so grateful for all the love, support, prayers, and gifts. We have been blessed by you. Love,

Heidi