I remember the first moment I saw her..... I remember being so surprised at the calm I felt, how in control I felt, how confident I was in my ability to get her to eat. I was so relieved that she was breathing well, that her cleft really took a backseat in those first moments.
See, little Miss S likes to keep us guessing! At 4am, over a month before her due date, she decided enough was enough........ my water broke! I remember the nurse telling me that she'd probably have to go to the NICU, since she wasn't quite 35 weeks yet even. I let everyone know that, if there's a problem with her breathing or anything like that, by all means you take her and do whatever is necessary to make her well, but if it's only the cleft that we're dealing with, she's to stay with me and not go to the NICU.......that I would get her eating.
It's funny, thinking about it now, as I've never been a pushy person. That moment was my first taste of having to be an advocate for my child. Trusting that gut feeling that I know how to handle this. What I realized then was that, when your child has been diagnosed with something that falls under the category of anomaly, the chances are likely that YOU'RE the expert, not the doctor.
S's cleft was 18mm wide. It involved her nose, her lip, her gum-line (alveolar ridge), and the roof of her mouth extending all the way through the hard and soft palate. When I looked at her, all I saw was the most beautiful, amazing creature I'd ever laid my eyes on.
She got to come home with me. We were discharged together. We actually spent a lot of those 48 hours in the hospital educating the nurses and doctors on clefts. Many of the nurses really wanted to learn more.
Once we were home, within days we traveled the two and a half hours to get to Strong, to meet Dr Karp for the first time, and begin molding with the NAM. The NAM (Nasal Alveolar ridge Molding Device) is a plate made from an impression of the infants mouth. Material is removed where they want the gum-line to move to, and material added weekly to create active pressure on the gum-line. It's kinda like braces that move your gums, and later on pieces are added to help push the nose into the correct position. Then steri-strips with dental rubber-bands attached connect to part of it, and get taped to the baby's face. So, in the early days, her NAM looked like this:
From the first week on, I called the Eastman Dental Center at Strong the "Build-A-Kid Workshop"
When S was wearing her NAM (which was 24 hours a day, 7 days a week..) she would have Tegaderm tape on her face to help keep things from getting raw. Those days were so, so hard. We used Fixodent to help hold the NAM in her mouth, and it was messy and hard to get off of her. I'd have to replace the steri-strips holding her NAM between 5 - 15 times a day. Anytime we'd go anywhere, we'd get looks. If her NAM happened to come out while we were out, I'd have to spend 20 minutes getting the thing cleaned off and back in right, all while she was screaming bloody murder at me, with the added pleasure of strangers looking at my like I was abusing my child. It all REALLY took a toll on me the early days.......but we kept going.
During this time, I was also pumping milk for her. I wanted to nurse her SOOOOO much, but it just wasn't possible. When a child is born with a cleft palate, the likelihood of them being able to nurse is extremely low. My body has trouble getting a milk supply up, even in the best of conditions also. I did everything I could, met with lactation consultants, tried herbal and then medicinal supplements to increase my supply..... everything. I made it for nearly three months pumping, before it got to the point that I felt I wasn't even able to enjoy my child..... I was so stressed between the NAM and pumping. I felt like I was spending more time "nursing R2D2" than I was bonding with my baby.
All this time though, all our hard work was paying off. Her gum line was moving together. We were closing that 18mm gap. We got things close enough where they could add the nasal stint, that started molding her nose. All the time, trying to remember that we were doing this FOR her, not TO her. See, kids with clefts have to have lots of surgeries. Many people think that once the lip is closed, it's done. That's totally not the case. Most kids have surgery until they are nearly fully grown...... some even have surgeries into adulthood! By doing this pre-surgical molding, I was making that number of surgeries smaller. I also knew that, if we were successful in getting her gum-line to physically touch, that she would have a shot at not needing a bone graft around 9 - 12 years of age.
As the doctors saw how well we were doing with the NAM, the public relations person for the center caught wind of our story. She asked me if I'd be willing to do an interview with the local news station about our journey. They took some photos, and shot some video....
(I was a lot heavier then.....so funny, it's been a long time since I've looked at these photos!)
This was our first news story...
This got picked up all over the state.....and I started meeting people. Getting emails, and phone calls from people seeking me out, because they saw the news clip and wanted to thank us. It was so amazingly humbling....and I really learned the importance of giving back, or helping others. All of a sudden, everything we'd been walking through had purpose greater than just our family.
....To be continued.....again!