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Tuesday, June 22, 2010

I Remember....

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.................

4 comments:

vicki haley said...

LIndsay, i have experienced some of what you have been through. Both of our girls were born hearing impaired. I had wonderful pregnancies with both of them and didn't find out there was a problem until they failed the NB hearing screening. So, I know what you're going through. The fear, the dread, the research.. all of it! My girls are 10 and 12 now and all of that hard work has paid off. They are in a normal school and have great speech b/c of early intervention. So, hang in there! Your precious little girl will do great b/c she has a mom who I can tell is fighting hard for her! We will be praying for you and your sweet family.

hopelesslycrushingonyou said...

she is beautiful.... i remember when i was 6 months.... my appedix burst....or my son kicked it...lol.... i had to have surgery...and all i remember is the doctor asking me if we have to save you r the baby which do you choose....duh...dumb question....both or none....my son is 12 and doing well... i have a large scar on my stomach where he kept kicking the staples out...but i plan to use that to guilt him as we moms do one day...lol...
Hope

MsCrazyLove said...

hey girlie, that was a touching entry. (Btw, i'm Elise L on TLOL) And hey, I live in Rochester :) (well in the 'burbs lol). We had good family friends that had a son born with a cleft lip/cleft palete in 1990. They moved to Maryland shortly thereafter but still came back here for the surgeries; performed at Strong. Today, he just had his 20th birthday, and you would NEVER even know he had had anything. And his was pretty severe. I was just a kid myself then but I can remember how bad it was, and watching him go through the surgeries over the years(they often stayed with us, or at the Ronald McDonald House). Just wanted to offer some encouragement that Strong is awesome and they work wonders! lol

Chasity said...

Hi my son was also born with a cleft lip and palate.He is now 3 and doing really well.Your daughter is beautiful...