Receiving a prenatal down syndrome diagnosis and baby having a congenital heart defect put me in the high risk pregnancy category. This is our 27-week update.
High Risk Pregnancy – 27 Week Update
27 weeks with our brave boy.
Ok, where to start? Another emotional week while we wait to see what the future holds for Mr. Baker. I’ve been wavering between feeling anxious and stressed, optimistic and hopeful but at the same time, trying to keep a level head and look at the facts we have at hand while we waited to hear results of the genetic testing from our last appointment.
I got that call on Monday morning from a genetic counselor at the hospital where I plan to deliver. Based on the markers she was seeing in my blood work, coupled with the type of heart defect he has, she confirmed there is very, very high likelihood (80% chance or higher) that our baby boy will be born with Down syndrome.
My OB, whom I adore and will continue to see for regular baby appointments called me Wednesday morning to check on me. She had been getting reports from the maternal-fetal medicine doc and pediatric cardiologist and wanted to touch base. We chatted a bit and I asked her to interpret the results of the genetic test. She’s a straight-shooter (one of the reasons I love her..) and she said it was her medical opinion that it’s more like a 90-95% chance of Down syndrome.
Honestly, in THAT moment, hearing a higher percentage helped, if that makes any sense at all. I had found myself desperately hanging onto the 20% chance that he may NOT have Down syndrome so this made it a little more concrete. We had an appointment with the pediatric cardiologist this morning and he agreed with the higher percentage. An amniocentesis would confirm for sure but at this point, I don’t think we’re going to go that route since there are risks involved and no matter the result, it wouldn’t change things for us.
So, the plan now is to expect Baker to show up with an extra chromosome and love the hell out of him.
Obviously, this isn’t the news we were hoping for. Without really saying it out loud, Justin and I both were banking on him being totally fine (in regards to number of chromosomes…) these last two weeks or so. He’d be born, we’d fix his heart and he’d go on with life like a typical little boy.
I was sad on Monday. Really sad, depending on who I was texting or talking to on the phone. I’d be fine one minute and then totally breaking down the next, all the while Gracyn looked on confused as to why I was crying and Leighton asking if I had “bonked yo head, mom?”
We’ll tell the girls about Baker and his heart and probable Down syndrome diagnosis eventually but for the sake of that day, I just reassured G that I was OK and that even mama’s get sad every once in awhile. Luckily Justin came home from work early to wrangle the girls and talk things through with me.
One Day at a Time…
My mind was racing wondering how we’d care for him being born with additional special needs, beyond the challenges his heart defect already brought to the table. I’m concerned about the learning disabilities he’ll face and the type of special therapies he’ll need.
What will his future be like? What will our future be like? I was already consumed with mom-guilt. How will this affect the girls? What will they think when we periodically have to put most of our focus on Baker, knowing we’ll already have to be away from them when he has heart surgery?
I talked to my mom on Monday night and she quickly shut that down. She reminded me to take it one day at a time. There is so much that we still DON’T know so while it’s hard to not worry or think about those things, it’s also important to stay present and focus on the things we can do now.
What we can do now is work with our doctors to continue to monitor his growth and keep an eye on his heart. We can finish his nursery and wash his clothes and sanitize the baby toys. We can work with Leighton so she knows that a choke-hold isn’t the best for baby brother… 😉
I still have my ugly cries and my emotions are high. We’re definitely grieving the baby we thought we’d be brining home but I have to believe we need to process those feelings to make way for the baby we’re meant to have.
This boy will change lives in the best way, that’s for sure.
To end this update (or novel..) on a positive note, a friend-of-a-friend added me to a local Facebook group for moms of kiddos with congenital heart defects. From there, I was connected with a mom in Iowa who’s son was born last August with Down syndrome and the same heart defect Baker has.
Their story was eerily similar to ours and after messaging back and forth with her for a bit, she reminded me that, at the end of the day, these kids are still just kids. Cue another ugly cry, but she’s right. They’re happy. They’re capable of reaching milestones and having a meaningful life. They’re yours. She was so great. I was reading her messages to Justin and felt supported. We felt encouraged.
Like, we can do this.
There will be more hard days to come but this is something we can definitely handle as a family and we can’t wait to meet this sweet boy.
