I’d literally just got done telling my friend how my pregnancy has been relatively very easy with minimal sickness. That night, I came down with a bit of a stomach bug that kept me grounded until mid-week. Life is just a little ironic like that! Just when you think you’re in the clear, you get a big reality check. Our diagnosis was similar.
I tell people often that the only reason I opted into the NIPT (non-invasive prenatal testing) was because it was 100% covered by our insurance. It’s actually unusual that it was covered since they typically only cover the testing for mothers already considered to be high risk; when it’s not covered, it can be quite expensive. The phlebotomist that came to the house even questioned why we were having it done (hello, HIPAA violation) since I have no major health issues and we weren’t choosing to find out the baby’s gender. I didn’t even think twice about it after having my blood drawn, considering it to be a “free” option just to be sure I wasn’t a carrier for any major health issues.
Well as they say, the rest is history and now here we are! One of the most common questions I get asked is if I’m glad we know now about our babe (versus a birth diagnosis). My answer is unequivocally YES. I cannot imagine processing the very deep emotions I’ve worked through while also caring for a special needs newborn. Having an early diagnosis has allowed us to reap the benefits of all the positive, inspirational and downright (pun intended) uplifting stories that are out there. But I’ll tell you, it’s not always easy and I expect we’ll continue to have these “not easy” days for the rest of our lives. I’d say somewhere between 80-90% of the time, we’re just plain excited to be parents and looking forward to this new venture. The remaining percentage I’m anxious and scared as our future seems so uncertain right now. I have weak moments where I breakdown and cry for fear of the unknown, and based on what I’ve read from moms of Down syndrome and special needs babes, I don’t think those moments will ever completely go away. There will be milestones missed and other potential health risks outside of the heart condition for which we’ll have to monitor, but those are just the “known unknowns”. The unknown unknown (are you following me here?) is how much joy we’re about to experience as first time parents.
I’ve found myself wondering the difference in journeys between moms who have already have children before they have their baby with Down syndrome versus first time moms who simultaneously have a diagnosis. It’s obviously impossible to compare the two situations, but I think in some ways Mitch and I are blessed to live in a state of ignorance. In so many ways, we have no idea what to expect, no comparisons to make, and we’re getting to experience that first-time-parent bliss together, forcing the diagnosis to take a backseat. I suppose in many ways we’re just getting an early taste for that parental worry since we’re lucky enough to know some of the battles we’ll face.
In the first few days after we found out, it felt like I would need weeks to find happiness again. It felt like a dark cloud looming over us that may never go away. Within days I felt a strength wash over me that I can’t describe. I can attribute this to our incredible support system around us and the power of prayers. Two days afterwards, Mitch and I went over to our friends’ house where we were greeted with love, support and genuine interest in our sweet babe. It would be easy for our friends to be scared to ask or walk on eggshells around us at such an emotional time, but I’ve never felt so lifted in support. They truly are our framily here and I’ll never forget how much I appreciated all of them at a very raw time.
Moments like those are what give me strength to carry on and remind me we have so much to look forward to! I found the video below while lost in the depths of the internets this week and I hope it makes your heart swell as much as it did mine!
We had an appointment at CHOP this week where we met with a lactation consultant, a genetic researcher, and the maternal fetal clinic. The lactation consultant went over a boatload of information and essentially prepared us for what could be some struggles given the baby’s heart condition and trisomy 21. The maternal fetal non-stress test went well (this is now our third non-stress test)! They look for the baby’s movements, how baby’s heart responds to movements, fluid and a few other things that I honestly can’t remember (it was nearing lunchtime when we had our ultrasound so my brain was already thinking of lunch places). We were supposed to get a tour of the special delivery unit but all of the delivery rooms were full so we weren’t able to do that; they bumped that to our next appointment on December 1.
Happy early Thanksgiving! Start thinking about what you’re thankful for before next week’s post 😉