Big Day Tomorrow

I know it's been a while since we posted anything. Life has been crazy, as I'm sure it has been for all of you too. But I wanted to give a quick update because tomorrow is a big day. Lily is going to have her second gap study tomorrow morning at 8:50am. It was scheduled for last Friday, but got cancelled due to COVID19. In an effort to save supplies and resources for the surge that is yet to come, Spectrum cancelled all elective surgeries and procedures. That was heartbreaking news for me. But a few days later, Dr. Pennington called back to say that the surge is now predicted to hit later in the month, so they are doing some less urgent procedures now. Phew!
Many of you won't read this until after it's done, but if you do read this before 9am, please say a prayer for Lily and for us. We are anxious to know if the gap has decreased in size at all, if her esophagus is growing. The first gap study showed a 4cm gap between the two ends of her esophagus. Surgery to repair the esophagus can't happen until it's 2cm or closer. I'm not sure what would even be considered normal growth. I think it's different for every kid. I recently joined a facebook group for parents of esophageal atresia kids, and it's been very informative and a little eye opening. I won't get into it now, but there is still a long road even after surgery. And there are different surgeries, different schools of thought on what's the best way to repair it. I feel we can trust her surgeon though.

With COVID19 spreading in Michigan, it has become even more difficult to go see her. Only Joe or I are allowed to visit, and only one of us can be in the hospital at a time. So Joe will go for the study tomorrow while I stay home with Rose and Cora, and then I will go up with Cora to see her in the afternoon. Joe is still working, and we don't have people to watch Rose now because of the stay at home order, so I can't spend full days in the NICU like I used to. We take turns on the weekends, and I've gone up a couple evenings after Joe gets home from work, but that's hard too because of dinner/bedtime/family life. I daily struggle with feelings of guilt for not being able to spend more time with her. We also have to wear a mask the whole time we are there.

Another tricky situation is that I'm returning to work next week Saturday. I checked with the NICU manager, and it's ok for me to still come visit Lily as long as I'm not symptomatic and follow all the precautions. I just can't visit during my shift. I'm very uneasy about it, but I can't just not see her for who knows how long. I will be working weekends, 7am-7:30pm every Saturday and Sunday. I'm not sure what my role will look like exactly because I used to take care of a lot of outpatients and they have cancelled or rescheduled a lot of our patients. I may be sent to another department or floor. I will most certainly be caring for COVID19 patients and I'm scared that I might expose my family. I'm just trying to trust that God will protect us.

Cora was struggling with reflux for a while, but she started a medication that has been helping. She's growing and doing great otherwise. Just keeping us up at night! Rose is doing well too. I think she's loving all the Mommy and Daddy time and she loved the warm days outside recently.

Thanks for your love and support! We'll post another update tomorrow with the gap study results.