I remember clearly how scared I was. I was 16 weeks pregnant, and had been bleeding. Since I had most of my cervix removed when I was younger, and blood was a one-way ticket to the ultrasound room. It had actually become pretty routine.... I think this was my 4th or 5th ultrasound so far, this pregnancy.
I remember the ultrasound tech.... she seemed so nice. She was chatty, telling me everything was looking good..... baby's heartbeat was strong....... cervix was still holding....... and then, she stopped. Four words followed, "Wait.... I see something." That's the moment my world fell off it's axis. She asked me if I knew what a cleft lip was, and I said I had heard of it. Then she said it, "Well, your baby has one."
She left the room right after, presumably to get the doctor. There I was, alone with my thoughts. I was so, so scared. I was crying. I didn't understand. Why me? Why us? I did everything right! How could this be happening? How was I gonna tell Rick? I was a mess.....
Doctors, family members, everyone kept telling me, "Well, it's not so bad. The can fix clefts!" In a way, they were right. Clefts can be repaired, but in the weeks to come I was to learn that this journey I had unintentionally embarked upon was gonna be a marathon, not a sprint. See, the things is, the face and mouth involve so much.... breathing, eating, communication...... there are so many muscles that have to work in perfect harmony for everything to be "just so." It's so much more than just the cosmetic.... it's a journey that lasts, at least, until adulthood.
The following 20 weeks were so hard. I was still full of such fear..... such dread. I studied everything I could find on clefts. I read medical journals, spoke to other families, researched craniofacial teams......I half-jokingly refer to that time as my 20 week doctorate level independent study course on clefting. We decided to use the team at Strong Memorial Hospital, in Rochester. The team there is amazing, and they employ a fairly new technique in cleft care..... the NAM. Nasal Aveolar Molding device. A way to close the gap in her gumline, and align her nose prior to surgery. The NAM is a ton of work for the families going through it, but the results were worth it to us... we settled on driving the two hours to Rochester for her care.
What amazes me most about looking back like this, is just how terrified I was. I was so scared of what was to come. What if I couldn't feed her? How would I feel the first time I saw her? Was she going to have to go to the NICU? How would other people react? It's so incredible to me that I spent so much time and energy fearing what was to come, when the fact of the matter is, S is a miracle, and has bought me nothing but joy, love, and everything good in this world. Our journey has not been an easy one, but I've learned so much about life from this little girl. Her life has enriched mine in ways it's hard to describe. Honestly, I've learned more from her in her 21 months of life, than I EVER could hope to teach her in a lifetime!
.........to be continued.................