We've moved...

For those of you still looking for updates here, allow me to redirect you to our new baby website. No, this is not an actual child. This is a church plant that we will be starting in the Denver, CO, area. Check out www.denvertable.org for more info and to follow along on the next stage of our journey. And to close out this blog, here's one more picture of our little one who is now 19 months old and doing remarkably well. After about 8 months of early intervention therapy, Ellen graduated just before we left New Jersey in February. She's walking, running, talking, singing, learning some ABC's and starting to count to 10. God is good. Thanks all for your support, hope to see you on the other site.

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!

Baker's (wo)man

Tuesday night's activities included trying to keep a baby and her mama sane. So I took baby into the kitchen for her first baking experience. The result? A happy baby who talked me through the recipe right up until the cookies went into the oven. Then she was wiped out from all of the excitement. While she slept, the peanut butter chocolate chip cookies baked. When she awoke, sweet goodness for two of us. One day, she'll get to enjoy the spoils. Coincidentally, the pediatrician said today that we can start giving her cereal. Cookies make great cereal, right?

Oh January, where have you gone?

Ah, how time flies. Here we are already past Groundhog's Day (Punxsatawney Phil did see his shadow) but no updates since Christmas. If you were keeping time by my blog we'd still be in 2009. But oh, what a month it's been! Shortly after my last post Ellen celebrated her first Christmas, her first international travel, and got baptized...all in the span of 9 days! Yes, we do have photo evidence of all those things and yes, I will be posting those photos shortly. But let's cover one news story at a time, shall we?

Christmas came and went and though it is Glen Rock, NJ tradition for Santa to arrive on the firetruck with sirens blaring, he did not swing through our neighborhood this year. We're not sure why, but hopefully next year he'll remember. We celebrated a really fantastic Advent and Christmas season at RCRC where we held a candlelight service of lessons and carols on the Sunday evening prior to Christmas. Here is a family photo from that event:


Jeanine's parents flew in on Christmas night, after fear that they wouldn't make it in at all because of Iowa weather that day. They spent a couple of days with us before we all piled in the car and headed for the great white north. After morning worship on the 27th we hit the road, driving all the way to New Brunwick - the last bit of it in snow and ice. We arrived around 1:30 AM, lounged in the morning, and then had a cookout. Yes, out in the snow, a hotdog roast - Ellen's first.





I flew back on the 30th, the rest of the family drove down on the 31st, and my parents flew out on New Year's night to get ready for baptism on the 3rd. A great worship service with lots of friends and family in attendance, my good friend Eric performed the baptism, and a small gathering of family after the large cake celebration at church. By the end of the day, we were all exhausted.








So now you're all caught up. Or rather I'm caught up. The young 'un turned 5 months yesterday. Incredible. Hopefully it won't be another month before you hear from me again!

Well, maybe one more

I thought yesterday would be my final post before Christmas. However, today we did make a Christmas Eve trip to the cardiologist where our echocardiogram technician reported that everything looks good - the valve has closed (at least that's what we're interpreting from him) and Ellen has achieved another graduation date! Of course we're receiving it as a great Christmas present from her (and our great God!). We had lunch afterward and our waitress wondered how old she was...a month, she guessed. So, although it seems that our little girl is growing up so fast, she is still pretty little.

Merry Christmas Eve to all...I think Santa is on his way on the firetruck...that's New Jersey style...

Another Graduation Day

I've got a few more pictures to post but first, the news. Ellen had her second visit with the pulmonologist today. At our first visit back in October we were (naively) hopeful that she would no longer need the apnea monitor she'd been attached to since birth. At that visit, however, they told us we could wean her off it. Today, after two months of weaning, Jeanine took her back and we're VERY pleased to report that she has graduated yet again. No more monitor necessary! We've all been so blessed that her progress has been so steady. Her weight today was 11 pounds, 15 ounces (with onesie and diaper on). No, she's not walking yet. Nor dating.

We're looking forward to both sets of parents coming out (weather permitting) in the next couple of weeks. Ellen will be baptized on Sunday, January 3 at RCRC (271 Lincoln Ave., Ridgewood, NJ) during the morning service - 10:30 AM. It's been a long journey already to this point but we're ready to celebrate Christmas, New Year's, and a baptism with our friends and family. If you're in town (or want to be), please come for the celebration.

And now, the pictures with info.

The belt is off! At least two of us are happy about it...


After Sunday evening's Service of Lessons and Carols...Ellen in one of her Christmas dresses.


Just a little cuddle time.

This will probably be the last post before Christmas. We go to see the cardiologist on Christmas Eve for an echocardiogram to see if her PFO (https://health.google.com/health/ref/Patent+foramen+ovale) has closed. We won't know the results of the test for at least a week. Given the nature of the week, it will probably be more like two weeks. Anyway, we're hopeful it will provide for more celebration when the results are available. And when we know, we'll let you know!

Thanks for your continued thoughts and prayers on our behalf. May God bless you and yours this season and always.