Wednesday, August 18, 2010

Rachel's Story

I've recently become active on a Facebook page for families of cleft affected children. Every day, a new 'story' is shared about the life of one of the children represented on the board. This is Rachel's story...


Because of my history of going past my due date and delivering such a large baby with my first pregnancy. An ultrasound was done and showed the baby already between 9-11 lbs, with ten days left until my due date. Therefore I was scheduled to be induced the next day, August 31, 2004.

I was admitted, hooked up to pitocin, and after ten hours of labor, and no progressing, my OB decided it was in my best interest, and the best interest of my baby, to do a c-section. Within two and a half hours, I was prepped and in the OR.

After all the tugging and pulling, I'll never forget the words, and how my OB said them, to the team of nurses, the anesthesiologist, and others in the room. "We have a baby girl with a cleft lip, complete, with cleft palate". Being a nurse myself, I knew what it meant. It meant I had just delivered a baby with a birth defect that had gone undetected. After cleaning her up a little bit, they brought her over to show me. And staring back at me, was this dark haired baby with a wide gapping hole just below her nose. Because they weren't sure if she had anything else wrong with her, they handed her to my husband, and then whisked him and her off to the nursery to check her over. I was left there in the OR all by myself (well, my OB was stitching me up and the nurses were there) to think and dwell on the fact that I had just delivered a baby with a birth defect and of the long journey that laid ahead.

The days following Rachel's birth were extremely hard.For nine months we'd prayed for a healthy baby with all it's toes and fingers, etc. Why did the Lord choose to allow this to happen to our baby? Rachel was indeed born healthy, with all her fingers and toes, she had no other health issues, or disorders, sometimes associated with cleft affected babies. He did answer our prayers. But allowed Rachel to be born with a birth defect so that we ultimately could give HIM all the Glory for all He would do in Rachel's life, through her journey that laid ahead.

We didn't know anybody who'd had experience with a cleft. Nor did anyone at the hospital. We had visitors bringing us stacks and stacks of information they'd printed out from the internet. We really had no idea what was in store for Rachel.

We ended up at Loma Linda University Children's Hospital, which is where Rachel's craniofacial team is.

Rachel's cleft lip was very wide. She had her first surgery when she was just 5 weeks old, a lip adhesion surgery. It was the first step to fixing her lip. The idea was that the two sides of her lip would be stitched together to cause that skin and muscle to stretch, and as a result, it would be good and ready for the time in which a formal lip repair would be done. Over the course of the week following surgery, we sadly watched the stitches come undone. The surgery had been unsuccessful.The formal lip repair came when Rachel was 5 months old. The Plastic Surgeon was able to do the lip repair in just one surgery because Steven and I were diligent to keep her lip taped for months leading up to the surgery. The idea behind the taping was that the two sides of her lip - the muscles, would stretch and surgery could be done in one. We changed the tape every day and were faithful to keep doing it. Upon seeing Rachel for the first time in the recovery room, with her new smile, my husband and I were moved to tears. She looked amazing. The plastic surgeon did a wonderful, impeccable job at stitching two pieces of her lip together just so. She stayed in the hospital one night and had no complications. In the weeks following her lip repair, she just looked better and better. But it's amazing how you do kind of miss that 'wide smile' once it's gone. It was the face that I'd fallen in love with.
Just three weeks after her lip repair.

Rachel's palate repair, and tubes in her ears, happened when Rachel was about 14 months old. A little later than we would have liked, but her plastic surgeon left Loma Linda, and the new one was waiting for his California medical license to take effect. The palate repair went smoothly. However, she did suffer one complication. During surgery, her tongue became clamped down, and once released at the end of hours of surgery, it swelled. Swelled to the point her little tongue would not fit back in her mouth. Thankfully her air way stayed clear, and once given several doses of steroids, and after two nights in the hospital, we were discharged.In the Spring of 2006, Rachel began speech therapy at the young age of 18 months. She continued with speech therapy for over a year, first doing therapy once a week, and then eventually stretching to once a month.

In October 2007, Rachel had tubes placed in her ears again.Early this summer, Rachel started receiving aggressive speech therapy. And we are extremely happy to report that after only ten sessions, she is making great improvement and progressing quicker than our therapist ever dreamed.

Rachel's Journey has been rather quiet the last few years. But with a recent trip to her plastic surgeon, we have learned that we are in the next phase of Rachel's Journey.

We knew the next major surgery would be when Rachel was between the ages of six and eight, the bone graft surgery to repair the cleft in her alveolar ridge. Well, Rachel will be six at the end of this month and we are at the next phase. On November 17th, Rachel will be admitted to the hospital and will have her bone graft done, as well as her first nose revision. It's exciting. It's nerve wracking. It's a lot to think about. Like I said earlier in telling Rachel's story, I believe the Lord gave us Rachel and her birth defect so that we could be a light to all those we come in contact with through this journey. Telling people of His goodness and faithfulness through it all. I know without a shadow of a doubt that the Lord will guide and direct her plastic surgeon's hands when doing the bone graft and nose revision in a few short months. I know He'll get us through the recovery process. And I know that in the end, after stitches have dissolved, after wounds have healed, and bruises diminished, we once again can give HIM all the glory for having gotten us through yet another surgery....


When Rachel was born, after the inspiration of another cleft affected Mommy, I began this blog about Rachel and her journey. It was a place to keep friends and family up to date on the latest surgery news, progress, and pictures. And through the years, because of this blog, I've met many a wonderful people online who are walking the same journey. I've always counted it a privilege to be available to answer questions, offer encouragement, or suggestions when it comes to anything we've already experienced. If I can be that to any of you who may read this, please don't hesitate to contact me.


Kim said...

It was fun to read this again, Darcy! It's neat to see how the Lord has worked in all of your lives and in others too. :)

Kari Marchelli said...

Your story was fun to read again. I think it is wonderful that you have share your stories.

frgdanc said...

we must find a time to meet...our little darlings' wide smiles are so similar!!

Darcy said...

I would love to meet you Kalissa!! Especially since we do live fairly close to one another!