We've made our visit over to the Center for Craniofacial Disorders in Atlanta at the Children's Hospital at Stride Rite. From our visit, we gathered lots of information on what to expect with having a child born with a bilateral cleft lip and palette. He will have anywhere from 5-9 surgeries over the course of his life along with many appointments at Children's Hospital for issues like speech, feeding issues, his teeth, and even his ears. But we are glad to have such a great facility close-by.
Soon after he is born, he will have a NAM (Nasoalveolar Molding Device) created for him that will be inserted by the orthodontist at Children's Hospital. He will wear it up to 6 months before he has his first surgery for his lip. This is a new device that is showing great improvement in those born with cleft lips/palette reducing their need for as many future surgeries. He will need to go in weekly for an hour long appointment to have it re-inserted by the orthodontist. In addition, we will need to change the taping on it several times a day (learn more here).
(NAM device)
Our little guy will be seen for feeding as not having a closed palette will mean he doesn't have the normal suction that most babies have to be able to eat. It's like trying to drink out of a straw with a hole in it . He will most likely have to use special bottles for eating and there can be issues with him gaining weight. We do not know the severity of the palette and won't know until he is born. So a lot of this really depends on the size of his opening in his palette and how he will do with his feedings.
Lately, I have reflected on how this has all come together for our family. Last January, Mike and I came to Atlanta to see if this would be a place we would be interested in moving to for his new job. There were a handful of options and this was one of them. Immediately upon arriving, we fell in love with the area. Finding this area where we are is a real gem. We loved the people, the atmosphere, and the family friendly environment. With only having been here for 36 hours on our little getaway, we had a strong feeling that this was where we needed to be as a place we could settle for our future.
At the time, we knew our family wasn't done yet. We kept hearing God's voice in having another one and we listened. A month later, I became pregnant and now we are about to have this sweet little guy. We had no idea he'd be born with cleft nor did we know we'd be so much in love with him already. Our children are all aware of his condition and love him so much already too. But one of the biggest praises is that I feel like God brought us here because He knew of our needs to be near a great facility that could treat our son's cleft.
Often lately, as I read all about caring for a baby/child with cleft, I feel overwhelmed by it all. I think of it as a continuous list or if it were things that needed to be done at all once. I tend to be a list girl who gets things crossed off after completion. I like to be organized and plan ahead. What is tough for me is to sit back and wait on what God's plans are instead of mine. In my mind, I think, "Let's get this taken care of and it'll be one less thing to worry about."
But what if I just stopped worrying about the things to come and let God handle it? Why can't I surrender it all to Him knowing full well that He already has it all figured out? Time and again, God has shown His faithfulness to our family.
Just last week, the days had been tiresome and Mike was gone everyday. Between homeschooling, cleaning house, and trying to get the yard up to speed with all the leaves that had been falling, I was beginning to fall apart. One of our neighbors saw us working outside in the yard and the very next night, knowing that Mike had been gone, surprised us with a huge meal. It couldn't have come at a better time as we were running low on food, it was dinner time, and I wasn't sure how I could get my exhausted pregnant self out the door with six children to purchase food. God always knows our needs and through a very generous neighbor, we were taken care of when we really needed it.
It's hard to see the blessings we receive in our lives. Sometimes, it's easier to find all the things going wrong and stay unhappy. But when we change our attitude, we can sit back and think about the good things that have come along. Today was another rough day and I was feeling overwhelmed. Then the kids stepped up by helping with chores. That made this tired mother smile. And to top it off, after I put the twins to bed in their separate rooms, my daughter sneaked through the joining bathroom between their rooms and climbed next to her twin brother to go to sleep. I couldn't help but smile.
In the words of Julie Andrews, "When the dog bites. When the bee stings. When I'm feeling sad. I simply remember my favorite things." And truly with those happy thoughts, we can once again be reminded of how blessed we all are in our lives, even through the storms.
