CHoP Reunion

Wow, two posts within the span of a week? One more and it'll be a habit again. We'll see how far this goes. As I mentioned last week, the CHoP Fetal Family Reunion took place yesterday. This is the 14th one they've done, held annually at the hospital for all families and patients who have received care at CHoP. I didn't realize how many people go back year after year for the celebration. It's a VERY big deal. My church gave me the Sunday off so that my family could attend for the first time and for that we are grateful.

We went down on Saturday afternoon and stayed with some friends of our who live in a northern suburb of Philly. The festivities began yesterday at 9 AM so we left their house around 8:30 and found our way into the parking garage at 9:15. I'm happy to report that there are no new scrapes, dents, or scratches on the car as a result of this year's trip.

After registration, the program began at 9:30 with greetings from the hospital, the pledge of allegiance, the national anthem, and a testimony from a family who had been helped by CHoP. They followed with a video montage of submitted family photographs and highlights from past year's reunions and we were supposed to have been blessed by the Catholic Nun who is on staff at the hospital, but she was nowhere to be found. I offered to do it, but I was in the very back of the room and they didn't ask for volunteers. Following the little program, we were herded (yes, herded - there were a lot of people there) into the lobby for the annual group photo. You can find a version of it on my facebook page - there were a lot of people there. Once the photo was finished, the rest of the time is up to you. There were blow-up games and activities set up outside, some video games and other interactive things in the conference room, and food machines (popcorn, cotton candy, etc.) and face-painting booths set up in the hallways. We were also given a ticket for a free family photo, which we took advantage of. Jeanine took a few pictures of Ellen and me while we waited (see below).

After the photo, we were greeted by the Phillie Phanatic who made his annual appearance. I have a polaroid of that...Ellen thought he was pretty cool from a distance but up close she wasn't so sure. Then it was time for lunch. We sat with a few of the employees who were part of the screening and scheduling process. And by 1 we were on the road with a very tired baby who missed her morning nap. But she was a champ.

All in all, it was important for us to go. Being on the hospital campus brought back a flood of memories and feelings. Being surrounded by other families and hundreds of kids - and many sets of multiples - was a surprisingly difficult thing. As we walked back to the car we wondered together if it was worth the trip and I think Jeanine put it best. She said it was something necessary. It may not have been the most enjoyable experience, though there were enjoyable parts. But it's another piece of facing our grief.

It's amazing to think about the journey, what we were doing and thinking a year ago...and wondering and worrying. We saw some of the people we got to know in our time there and spoke briefly with them. Ellen got to meet Jane, our regular ultrasound technician (photo below). The hospital gave us a t-shirt for Ellen and an angel pin to remember Lily. It was one of those things that we had to do and we're thankful for the opportunity.

Playing Catch-up

It's been some time since my last post - obviously. Where has the time gone? I keep getting (gentle) reminders that some people are checking for more regular updates. I have lots of thoughts and lots of photos to share. It's simply a matter of organizing them. It's like my office...so much clutter...and then it gets to the point at which it takes a day of cleaning to sort through everything. I'm not going to write on this blog for an entire day. So rather than catching you up with everything that's taken place over the last four months, I'll just pick up where we are.

First, the details: at her 9-month appointment last week Ellen weighed in at 16 pounds, 5 ounces. On the normal 9-month scale that's a whopping 7th percentile. You should recall that she came 8 weeks early. But even on the 7-month chart Jeanine said she's still only in the 20-something percentile. So, I guess she's little. But...she eats like a champ and sleeps really well at night. Usually from 7 or 7:30 until 6 or 6:30. She's getting occupational therapy (interesting, since she doesn't have a job yet) twice a week and her therapist continues to report that she's making great progress. She's not crawling yet and hates to be on her belly. Maybe she'll learn to walk first. Or she might just be stubborn enough not to move and make us carry her around all the time. Of course, we're both pretty stubborn as well so we may be in for a battle of wills. She has an infectious laugh and a really, really loud shout. Have I mentioned she likes to shout? She doesn't seem to have a medium volume control - only loud and soft.

Jeanine and I often find ourselves commenting on where we were at one year ago. We're experiencing the one-year anniversary of all the stuff. "Remember our first trip to CHoP?" "Remember moving the bed downstairs because the heat was unbearable upstairs?" "Remember making all of those protein shakes?" "Remember all the Wednesday night prayer gatherings?" It's incredible to look back - both good and bad.

Sunday was my first Father's Day. It's hard to respond to all the "Happy Father's Day" greetings I got. Yes, it's happy. But there's still the lingering pain...not the way it's supposed to be. This Sunday we'll continue our journey down memory lane. Each year the Fetal Surgery Department at CHoP holds a family reunion for all the families they have worked with in past years. We'll make the familiar drive down the Parkway to the Turnpike...across the river...into Philly...to the hospital campus. Who knows what awaits us as we make the trip. But we're thankful to our church for allowing the day for our family. I'll post some thought and photos next week after we return.

In the meantime, here are some recent pictures of the little one. Enjoy!