I have now been in Philadelphia for an entire week. Somewhere thousands of miles from home and 30 windy degrees chillier: a cold place where I don’t know a single soul. That can be lonely and scary! But God has so graciously provided for us here.
When I knew we’d be coming, I contacted some FamilyLife friends who may have connections. Of course, because of the grace of God, a FamilyLife staff couple lives right outside of Philadelphia. They gladly picked up Matt from the airport, brought in a bag of goodies, hugged us, prayed with us, and loved us that crazy Monday night. The next morning, during Annie’s surgery, Sharon even came and sat with us while we waited to hear the details from the operating room. How wonderful to have a friend’s support in such a sacred moment in a faraway place!
Several of the hospital staff asked if we’d like a pastor or chaplain to come pray with us, because presumably at home we would have the support of our church body. Again, because of God’s specific provision, we were able to say that we had contact with a pastor here. One of Annie’s cardiologists in Little Rock lived and worked here recently. He connected with his church family in Philadelphia and the pastor came to visit Matt, pray over Annie, and even offer his home to us if we needed anything.
We’ve had a comfortable place to stay: the Ronald McDonald House. Unfortunately there was a waiting list to get in and the house that accommodates 48 families was full. So the first two nights we stayed at the hospital in a family room. I was so thankful to have a bed to sleep in and a community shower. Wednesday, a room opened for us at the Ronald McDonald House so we caught the afternoon shuttle to head over to check in. How humbling to be warmly welcomed to a place that I’ve always naively assumed I’d only see the bedroom walls when my small group went to repaint them and only see their pantry when I donated my annual canned goods.
As the volunteers kindly handed us our clean towels, then showed us the laundry room and the exercise room and the family kitchen, I knew I’d never be the same. How could I have been so cold, so uncaring, so not even thinking about all of these hurting people before this week? There is a constant waiting list for these 48 rooms. Heartbreaking that such a large place has such a long waiting list. And I was on that list this week. This weekend, I received a package delivered to the front desk of the Philadelphia Ronald McDonald House. Not somebody else. Not someone so unlike me. Not someone who could’ve done something different.
The first morning there while eating breakfast, there was one other family in the kitchen. They were friendly and initiated conversation with us about where we were from and why we’re here. I know you won’t be surprised to find out that their 8-year-old daughter has Annie’s exact same heart defect and the surgeon who touched our Annie’s heart touched Natalee’s too. God always shows up! Orchestrating the most incredible details. Never ever letting us wonder if this is His plan or where He is in the midst of it all.
As today begins a new week, I’m so thankful to be on this side of the Norwood procedure. Annie has recovered so well over the past 5 days. But it hasn’t been without its ups and downs. All day Wednesday and Thursday, Annie was in so much pain that she’d choose to hold her breath. Her heart rate and oxygen sats would plummet, the alarms would blare, and the whole pod’s nursing staff would crowd us out from around her bed using all kinds of unsettling apparatus to help her breathe again. We literally sat on the edge of our bedside seats not knowing if the next minute she’d be gone. Friday morning, finally she started doing much better. She’d still have episodes, but instead of needing intervention she learned how to regulate her breathing on her own. She began getting breast milk through her NG tube and started to learn some comfort measures. By Saturday her administered oxygen was at normal room air and she was happily digesting full feeds.
It’s purely miraculous to look at the daily pictures of her progress since birth. Today, instead of her tall medical tower being crowded to the sky with numerous medicine drips going into her RA lines and UV lines and UA lines and pacemaker wires and EKG monitors and on and on, she simply has one drip bag filled with mommy’s milk. All of her cords are out. The only thing that she still has in is her NG tube (which she could go home with, depending on her success with oral feeds that will begin tomorrow).
We get to hold her all day. We are practicing nursing by latching. I can change her diaper. I can swaddle her. She is mine!
And today we leave the ICU and move into the step down unit! This is feeling more and more like home. And I’m thankful to be in a place that has treated us as if we were already there.