Last week was the first time in 3 consecutive weeks we did not have a doctorâs appointment, ultrasound, procedure, or awaited test results. It was such a luxury to have a ânormalâ week without the anxiety caused by the anticipation of an appointment or test results. But, it was time for another ultrasound appointment as well as a meeting with the Mercy Heart Prints coordinator.
Since it had been over three weeks since our last growth ultrasound, the focus is to see how our daughter is growing. The doctors were also hoping to get a better view of her heart and the defects.
Karen, our case worker, and Cassie, the ultrasound technician, were with us during this ultrasound. Laura, our doctor, wasnât in so we were meeting another doctor in the practice, Dr Moore.
Dr Moore came in to talk about what she saw in the ultrasound images. Our daughter is growing, but she is still at least 3 weeks behind her gestational age. And now that she is bigger, Dr Moore was able to see her heart more clearly. She confirmed our daughter has two heart defects. The hole in her heart is not as large as they originally thought. They will not know the full impact of these defects until our daughter arrives. So Dr Moore said she might live a few minutes, hours, days or weeks.
WEEKS?!?
And she continued, âYou might even be able to take her home.â
TAKE HER HOME?!?!
Please do not get us wrong. Wayne and I desperately want as much time with our daughter as we can possibly have. But the idea of weeks in the NICU or even taking our sweet and extremely ill baby home to eventually go to heaven with a toddler running around was causing us to panic. We know panicking us was not Dr Mooreâs intention by any means.
How are we to make life as routine for Madeline if we are also caring for a baby in the NICU for days or weeks?
Can we care for our precious little baby at home?
Is there a baby hospice?
How will this impact Madeline?
So many unknowns caused us to suddenly feel frightened and overwhelmed again.
We realize other families handle this. We are in awe of them. We also realize we have to do what is best for our family and for our daughters. We are planners. The reality which is becoming more clear is we will have many decisions to make the day of our baby girlâs arrival. Bottom line: no one really knows what our daughterâs life will be like until she arrives. This thought is stressful and overwhelming.
After sharing the news of the heart defects, it became obvious the doctors have seen everything they need to see related to our daughterâs heart – the final piece of this puzzle known as Trisomy 18. Dr Moore then asked how many more ultrasounds we wanted to have. As of right now we are alternating between OB appointments and ultrasounds. So every other week we have an appointment. These appointments are draining. They are upsetting. Yes, it is wonderful to see our precious little girl. But from this point forward these ultrasounds only serve the purpose of seeing her. When we were pregnant with Madeline, we didnât have ultrasounds this frequently. There is something to be said for having a ânormalâ experience for a while with this pregnancy. Dr Moore asked us: Do you want to continue to have an ultrasound every other appointment or wait 8 weeks until the next one?
Karen chimed in. She mentioned how the medical world tends to get caught up in studying the problems. However, we are now at a point where the doctors and staff have the information they need regarding our sweet girl. Karen passionately shared with us how she wants us to âenjoy this pregnancy.â She is afraid sometimes the medical community sucks the joy out of pregnancies likes ours. She wants us to treasure this time with our baby.
Again, her words âenjoy this pregnancyâ confused me. And actually, I was kind of ticked about it. I realize Karen deals with situations like ourâs much more frequently than we do. But does she really know what it is like to bond with a precious baby growing inside of you knowing your precious little one might not survive child birth? Again, as Karen said this, I couldnât help but think: How? How am I to enjoy this? This is the hardest thing Iâve ever done and the hardest part is yet to come.
Wayne and I listened to Dr Moore and Karenâs input. We agreed we needed a break from ultrasounds. We needed to feel like this was a ânormalâ pregnancy. Last week we had a taste of normalcy since we were appointment free. It was healthy and good for us. We craved this feeling. Everyone in the room agreed. Finally, permission to take a break.
Before parting ways, Dr Moore brought up one more thing we did not expect:
She thanked us.
Dr Moore knew we made it very clear from the first day of this unbelievable journey before we even knew exactly what we were dealing with, we were going to see this pregnancy through until our daughter decided to enter this world.
Dr Moore thanked us for being clear about our wishes. She said it even made her job easier.
I was taken aback by this. From the day we found out we were pregnant we have anticipated the arrival of our precious little baby. We now know the life we planned with our baby is not Godâs plan for our precious little girl.
So what is the plan? Wayne and I are determined to find out. And we will allow God to do His work even though we do not understand it one bit.
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