Craniofacial Awareness Month (a day late!)

September, Craniofacial Awareness Month, quickly slipped away from me. But I didn't want to not talk about my sweet cleft baby! So just pretend it's yesterday.

We had no idea that Timothy would have a cleft. Sometimes, you can tell on the ultrasound. Since his was and incomplete cleft, and because we didn't get any full face shots, it was impossible to tell in utero.

You can imagine our surprise (and that's a nice way of putting it!) when, immediately following his surprise birth, the first words we hear are, "He has a cleft." Though this was about the time I got some really big drugs to keep me from totally freaking out, I believe I looked at Curtis and said, "Are they kidding?!" Surely, I hadn't delivered another baby with a birth defect! I felt totally overwhelmed. A large part of that was because of his surprise delivery at 35 weeks and the very tough c-section I was in the middle of. Just minutes before I had been worrying about his lung development. Now I was worried about that (he had quit crying and was turning some fun shades of blueish gray) AND the cleft.

While the neonatologist was working on Timothy in the OR, he told us that his palate was unaffected. I knew that was a good thing, but I wasn't even entirely sure what that meant.

After Timothy and Curtis left to head to the NICU, I remember feeling very nervous about seeing him. Though I had a quick peek at him before he left, I couldn't remember what he looked like (thank you drugs!). As they wheeled me to the NICU, I remember feeling like a really bad mom. Would I immediately fall in love with him? Would I only be able to see the deformity? Would he be okay? What would all this mean for my family? I was scared.

The moment I saw him, I don't remember seeing the cleft.

The love of a mother is an amazing and mysterious thing. The moment you see the child you've been carrying, there's an overwhelming and overpowering love. Though you've only just met this little person, you've known him for months.

The love of a mother of a child with an obvious deformity is even more mysterious and amazing. When I see pictures of other cleft babies, there's always a moment of shock. I see their cleft first. But that's not how it was with Timothy. I saw him. The cleft was just part of him, kinda like the fact that he had 10 fingers. Without a second of doubt, fear or hesitation, I was madly in love with this little person. Our immediate concers for Timothy had nothing to do with his cleft. There was the concern of his preemie lungs, the blood in his stomach and stool, the horrible jandice that almost kept him from leaving the hospital with us and almost put him back in the hospital. I just about forgot about his cleft lip.

I do remember having a conversation with Curtis while we were still in the hospital about his cleft. Though there were a lot of unknowns and I didn't like the thought of surgery, we quickly decided that we would repair the cleft when possible.

When Timothy was a few weeks old, we started seeing a plastic surgeon. With him, we learned so much more about Timothy's cleft, and made a plan to repair it.



Though I wouldn't choose to have a cleft baby, I quickly fell in love with his wonky lip! This caused lots of emotions when it came time to "fix" it. I share some of these thoughts in this previous blog.

While Timothy was in the NICU, we heard lots of different scenarios for what would happen during the repair, including one that involved a couple stitches, that's it. Timothy's surgery lasted three hours. The doctor not only repaired the cleft, but he also moved the base of Timothy's nose. There were layers of stitches in his lip and up to his nose. The surgery and the recovery were hard, and painful for Timothy. But God was so gracious! We left the hospital less than 12 hours after Timothy got out of surgery. We had been told to expect to stay in the hospital for 24 hours.

Timothy has continued to see the plastic surgeon in the months following his surgery. As of his last visit, it looks like he won't have to have any more surgeries! There's a possibility that we'll have to redo the surgery when he's 5, and we won't know till then if that's going to happen. It all depends on how the scar extends as Timothy grows. Then, when he's 13ish, we'll look at the possibility of rhinoplasty.

As with Benjamin, we are so thankful for how God guided the hands of the surgeon in Timothy's surgery! It's easy for me to look at the things Benjamin and Timothy (and Curtis and I) have had to go through with these deformities, and get discouraged, frustrated, and annoyed with the plan of God. But it's impossible to feel that way when I look back and see how tenderly and graciously God has cared for the boys and us during those tough times. Though it hasn't been fun, and I wouldn't have chosen to walk the roads we did, I'm thankful for them.