To say that our first pregnancy was a whirlwind may be a slight understatement.
At 21 weeks in our pregnancy, my husband and found out that the cute, button-nosed, squishy-cheeked baby of ours was a girl!! We also found out that something was wrong.
At 22 weeks, we discovered that our daughter has a birth defect called myelomeningocele- the most severe form of spina bifida. Then, in our 24th week, we underwent a fetal repair surgery to close the spinal canal, followed by bed rest and weekly specialist visits for monitoring.
We were terrified, stunned, and awed by our amazing little girl and the magic of science. Part of me held my breath, waiting to wake up from the dream. The other part emerged a warrior- finding strength and clarity that I didn’t know I had. Both parts were focused on the goal: birth. Then I would be able to breathe again.
Despite her already apparent sassy and independent self, our little one thankfully decided to stay put after the in-utero surgery. On the first day of our 36th week, our darling Matilda finally arrived by scheduled c-section. We spent a long and anxious month in the NICU, focused on wound care and healing in order to avoid additional surgeries. More holding my breath until we reached our new goal.
When we did reach it, reality caught up to me. We were about to go home, stepping out of the little bubble that we had built around ourselves and facing the unknown. Not having any idea how our lives would play out. Panic started to sink in.
Then, before we were discharged from Cardinal Glennon, one of our beloved nurses from the Fetal Care Institute stopped by. She came bearing gifts- a care package from Evie’s Warriors. She explained that typically these Spina Bifida care packages were presented to parents at the time of diagnosis, but that the nonprofit hadn’t been able to restock them until now. And honestly, I don’t think that the timing could have been any more perfect for us! We would have loved to have that connection and support from others who understood our journey and needs (perhaps even better than we did) from the very beginning, but I can’t think of a more significant time of need than those days before we came home as a family for the first time.
This care package provided information, hope, and many other things that I loved. Some of which included a blanket that quickly became my favorite in the summer, and an awesome children’s book about how we are all different and the same that I now buy for my pregnant friends. But this wasn’t just for us. The most life changing item would actually impact our daughter. Ivy the elephant. Out of all of the dozens of “stuffie” options that she had as a baby, Matilda found her kindred in this soft gray symbol of strength. Chomping on Ivy’s trunk was the perfect relief for teething pain. Stroking Ivy’s tusks is the soothing comfort Matilda needs when she is upset or can’t fall asleep. Ivy has been there through doctors appointments, surgery, uncomfortable tests and procedures. Ivy is always up for a grand adventure and is not only an impressive dancer, but a world class hide-and-seek champion. In short, they are inseparable.
I am so grateful to have had this warm welcome to the Spina Bifida community at a time when I was lost and overwhelmed. Matilda is now two and has done incredible things, with Ivy by her side every step of the way! I think that we both needed to know that we weren’t alone.