Welcome.

This is the story of our daughter Emma. Her story begins with a rare birth defect called Gastroschisis. This space is dedicated to the days before her birth and the many that are sure to follow.

Sunday, July 20th

Awake. I'm awake - 830 am. I slept. I slept well. Sleep doesn't come easy these days despite how exhausted I feel. I lay in bed Friday night until 1 am before giving up on the effort to fall asleep. I applied the strobing television to my eyes for another two hours. 3 am - I'll try to sleep. The sun leered through the window at 630 am and so I reluctantly rose after managing 3 hours of sleep.


Weekend sleep is always more difficult for me than the work week. At work I have my desk. It has a phone that rings for me, a computer that asks me questions through email, and co-workers that would like to meet in a conference room and talk about the very same phone calls and emails. At home I'm supposed to just relax. I can't. I don't think about anything in particular that keeps me from being relaxed. My mind is busy with nothing. I must be waiting for something to happen. A contraction. Labor. A movement from the baby. No movement from the baby. It's a kind of madness of forced lethargy. Be ready, I tell myself.

I've taken to doing anything that will keep me from that madness. When I cook the family meals I unnecessarily devote an exorbitant amount of time to preparation. Do I have enough broccoli? I have enough - but I don't have enough squash. I'll need to measure. I'll need to measure again.

I've taken my gardening to a whole new level than the cooking. I water, prune, plant, replant, and transplant. I walk the yards without any real purpose other than maybe I'll catch something that I hadn't seen the first time I had walked them. At least in the garden I have some say in the outcome of my plants. Sure, the weather will impose its own opinion, but I can actively try to ruin its plans. Gastroschisis is different. I have no say.

When we first heard our daughter had Gastroschisis everything in the world that wasn't in that dimly lit ultrasound room ceased to matter. We believed that was the end of her, that we were going to be asked to consider terminating the pregnancy. We were asked - we said no.

Our first daughter Ava faced her own challenges before she was born. My wife had a subchorionic hemorrage, which is a tearing of the placenta, in the third month. We met at the ER after she had rushed from home and I from work. Seeing her, covered in blood, was horrifying. The ER doctor searched for the pulse of the baby. No sign. Over and over she searched my wife's abdomen for the heartbeat. The sinking feeling within me continued to reach new depths. And then there she was. Her heartbeat scratched its way out through a handheld speaker. This little life whom I had never met said, "still here." Ava is now 19 months old and at the very center of everything that matters in this world to me. I cannot imagine a life without her, yet at one time, she was a heartbeat just below the surface of the world.

I imagine it's hard for any new father to try and understand what he can't see and only the mother can feel. Let me be the one to assure you that just below the surface your beautiful child and their immense challenge of Gastroschisis is talking to you: I'm still here.

3 comments:

Tatum said...

Devlin, Ashley, and Ava,
We are praying for your family everyday. We pray for a hedge of protection over sweet Charlotte and that God may grant you strength and comfort.
We love you,
Scott, Tatum, Hannah and Micah

Unknown said...

I have added a link back to Charlottes blog, from within the sideabar of the Gastroschisis website. Good luck with this Ashley and i will check back as often as i can to see how Charlotte is getting on.

Dean

Anonymous said...

Im so sorry for all that you are going thru. I cannot imagine. I had an SCH with my second pregnancy also. So I understand that one ALL to well. I hope that you all find support thru here, and I will pray for your unborn baby!

    Emma's Birthday

    Emma's Birthday

    Ava's Birthday

    Ava's Birthday