Happy Fall, y’all! The weather in PA has turned to brisk temperatures and the leaves are just starting to turn. It’s my favorite time of year. From football to fashion, there’s nothing I don’t love about Fall. I’ve recently learned I have a whole new reason to look forward to this season. October is Down syndrome awareness month!
For those of you who are not aware, Mitch and I are expecting our sweet bundle of love December 29, and we learned earlier this summer that our little babe will have Down syndrome and a complete Atrioventricular Canal defect. In simple terms, baby will have a hole in his/her heart which will require surgery sometime between two and six months. In the coming posts I’ll give more of my reflections on our journey to date, but for now I’ll give a brief synopsis, a status update and the many things we are looking forward to in the coming months!
When I started the blog, the first blog name I wanted to use was A Good and Perfect Gift, a name that seemed appropriate after I saw a friend on Facebook post a verse from James 1:17:
Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.
I want you to take a minute and picture your perfect life. If you could hand-pick exactly what you wanted, what would it look like? I imagine that many (if not most) of y’all are like me – you’d want someone to share your life’s adventures and love with, maybe travel if that’s your thing, find your definition of success in career or business, maybe start a family, and (since we’re dreaming here) have just enough cash to live comfortably and never worry about expenses. I don’t even need a lavish lifestyle (mo’ money, mo’ problems, amiright?).
When we found out about baby’s extra chromosome, I felt like my dream of perfection was shattered. On the day we received the news and the ultrasound all but confirmed the diagnosis, Mitch asked me what was the one thing that triggered my tearful emotions. My response was simple – I didn’t want our child to have this struggle (or any struggles, for that matter). If I could have one wish, it would be for a “normal” life for my child… I’m not even asking for extraordinary here! Here’s the kicker – our baby, by the very nature of an extra chromosome IS extraordinary! There will undoubtedly be struggles, but this perfect gift was hand-picked for US. One in 1,000 odds of this little blessing and we struck the genetic lottery.
Since receiving the diagnosis, I’ve been told two beliefs from two very different cultures, but I happen to think they’re both right. One of my mom’s friends shared with her that the Irish consider Down syndrome a blessing to special mothers because the child with Down syndrome will never stop loving or leave. One of the many OB doctors we’ve seen told us that ancient Mayans and Incans believed those with Down syndrome to be gods and attributed their early deaths to be an additional sign of their need to return to the heavens from which they came.
Baby Vowler is our perfect gift, an angel sent to us for reasons I have yet to discover. I have already experienced the power this baby has brought to our family and friends. I have felt physically and emotionally lifted in prayer, and have had everyone from old acquaintances to perfect strangers reach out and share their love for this little human that we haven’t even met!
So what’s our current status? Baby’s heart is functioning well. The heart condition a balanced AV canal defect which means the surgery will happen after birth, sometime between two and six months, depending on how baby responds. Right now, baby’s heart is missing the center wall. This means there is only one main valve instead of two valves to circulate blood out to lungs to be oxygenated, then out to the rest of the body. The surgery will require a repair to the center wall of the heart to create the two valves and separate oxygenated blood. This surgery will be done by the world’s premiere cardiologist experts at the Fetal Heart Program at Children’s Hospital of Philadelphia. This surgery has extremely high success rates and we have every confidence that God has placed us within easy driving distance to Philadelphia to give our angel the very best care. The other good news is that the heart is balanced, meaning all four chambers are sized equally and the one valve is functioning well (no major leakages). This is all great news as other circumstances require a more in-depth, more immediate surgery. The doctors do not anticipate functionality of the heart to change significantly at this point (also a good thing), although if there’s one thing we’ve learned it’s that anything is possible, so we appreciate your continued prayers for baby’s heart!
*Above: Normal Heart, AV Canal Defect, and AV Canal Repair
The Children’s Hospital of Philadelphia (CHOP, for short) also did a very long full body scan ultrasound yesterday. The doctor told us that he does indeed see many of the physical markers of Down syndrome – a rounder (versus oval-shaped) head, shorter length in the humerus and femur bones, possibly a flatter-bridge nose. What he does NOT see are any additional markers for other medical conditions that are more prevalent in babies with Down syndrome. Praise God for our strong little blessing.
As of today, we have less than three months until baby’s due date which will surely fly. Mitch and I are continuously adding to our ‘to-do’ list, which further confirms the notion that you’re never truly ready for a baby. In the meantime, I’ll read books and pretend like I know exactly what to expect.