What we did and when we did it. Sometimes.

What we did and when we did it. Sometimes. People, places and events to remember.

Friday, January 6, 2012

Ben's Birth Story ... part 2

So I wrote Ben's birth story already, but it ended a bit abruptly. At the time, I just wasn't sure how to talk about the hours immediately following Ben's birth. When I think back on Ben's arrival, I feel like I had two distinct experiences. The first is more the labor story, I guess, and the second involves everything that happened after he arrived.

So ... Ben was born. And he cried. And I was so glad to hear that little squawk. And then he peed on the OB. :) And I felt like a rock star! I was super impressed with how quickly labor and delivery went, and I just felt proud of myself. I have felt the same way after each delivery - it must be the endorphin rush or something.

I remember trying to see him, but not quite being able to. The nurses were in the way, cleaning him up a bit and wrapping him up so I could hold him. And as I held him, I thought, "he doesn't look like Evan and Corrie did." I looked at his eyes and his ears and his neck, and I thought ... he might have Down syndrome. I held him and touched him and waited for someone to say something. Instead, all the nurses and the doctors said "Oh! He looks great! He's perfect!" (And he is).

I noticed a nurse start to say something, but the NICU doctor looked over at me and shook his head to discourage her. I nursed my sweet baby, and I think we were both comforted by that contact. The hospital staff let Crystal back into the room, and we just looked at Ben and enjoyed him. Newborns are precious.

After a little while, the nurses took the baby away to do whatever they do in those first hours (a vaccination? the hearing test?). I didn't mention my suspicions to Crystal, because it just felt weird. If something were "wrong" with the baby, shouldn't I tell my husband about it first?

Crystal went to sleep on the chair-bed, and I lay in the delivery bed, mind racing. How surreal! I kept reminding myself: yes, I did come to the hospital just a couple of hours ago, I had a baby, and the baby is somewhere nearby. I replayed the look between the doctor and the nurse, and I thought about the baby's features, and I wondered.

I keep saying "the baby" because Emmett and I hadn't completely settled on a name yet. It didn't seem right to name the baby without his father's official input. On all my notes from that night, I wrote "LF" for Little Fellow.

I prayed. I got out my Bible and I read Ephesians. I couldn't concentrate, but kept noticing all the phrases that point to God's love and ultimate control.

Around 5 or 6 a.m., the hospital pediatrician came by, introduced himself, and said, "You know about the Downs, right?" I stammered, "Yes." Then he said something about doing a chromosome test (karyotype) to confirm. I can't really remember this conversation very well - I wish I did! It was so early in the morning and I had just had a baby. I remember when he left the room, I asked Crystal, "So, this means that the baby has Down syndrome, right?" She wasn't totally sure either. (We had both been sleeping). I felt certain that the baby had Down syndrome, but I couldn't tell Emmett yet because he was not there - and his cell phone was almost dead. I felt like none of this would be real until my husband arrived.

It was a weird morning. They didn't have a room in postpartum available, so I stayed in L&D. I talked to all the grandparents, but didn't want to tell them anything before I told Emmett. I wasn't sure what to post on facebook. Emmett and the kids still hadn't seen our new family member. Crystal went home to help with the kids (God bless her and Rob for all their help!) and I waited for Emmett to get there. At some point, a nursery nurse brought the baby in so we could breastfeed and she had a whole list of the tests that he had had or was going to have: EKG, chest xray, renal ultrasound, heart ultrasound and more. I asked her if the baby had Down syndrome, but she couldn't exactly say. I didn't understand why we were running all the tests if his diagnosis was uncertain. She thought we would be able to see the pediatric cardiologist around lunchtime.

Now (after getting more info) I know that the official chromosome test takes some days to run, but Ben had many of the clinical markers for Down syndrome. So the diagnosis was not official, but very probable. My OB stopped by and told me that she knows a mom who would be glad to talk to me about parenting a child with Down syndrome.

Emmett arrived at 11 a.m. The baby was off getting tested, and I told him about all the conversations I'd been having. I was SO glad to see him. He didn't get to see our son for another hour or so, though, because of all the tests.

The day dragged on as we waited for info. Eventually, my mom arrived, and we asked Crystal to bring the kids to the hospital. They got to hold their little brother - super cool. It was great to see them with him and so good to all be together as a family. After the visitors all left (kids for another sleepover with Crystal's family), the pediatric cardiologist stopped by. Finally!

Dr. K told us that babies with Ds often have cardiopulmonary and kidney issues, so they checked out our baby's system. Ben had a large ASD, and it was likely that he would have to have surgery sometime between 4-12 months. He also had a couple of other smallish issues.

** Oh my goodness! This is long. Sorry! I just want to make sure I write it all down so I can remember. And I know that in Ben's first few months, I read blog after blog and birth story after birth story. Hearing how other people processed a postnatal diagnosis was comforting. All the same, I will stop here for now. Maybe in a couple of days I'll write more. Thanks to everybody who actually read through this! **

For reading this much, you will be rewarded with a picture of the Little Fellow at 5 months:
Please ignore all the milk on his shirt and concentrate on that big smile.
Isn't he cute?


  1. Oh Deborah, he is adorable. I just want to hug him!!! Thanks for writing all of this out. I'm sure it must have seemed so surreal, as it does after any birth experience. I remember when Caroline was in the NICU that I was a bundle of mess and hormones and crying every time a doctor would look at me, much less talk to me!

  2. Love you Deborah! I think you are so blessed to have that handsome little fellow in your life...and he's so blessed to have you!! God really does know what he's doing ALL the time!!


  3. Just catching up with your blog! Ben is such a sweetie, I can't wait to meet him! It's good to hear about what those first hours were like for you, I don't think we've ever talked about it. I can tell how much you are enjoying your little boy. Come visit soon! :)