It's All About that NAM

We began the process using the NAM (nasal alveolar molding) today with Jonathan. As we woke up and got ready to drive up to north Atlanta, there was a bit of excitement for him. Knowing that this process would improve his feedings, improve scarring after surgery, and start the beginning of the recovery of his cleft left us a bit anxious to get there. I was also nervous for how it would all go down as any mother would be for their child.

My parents came over to watch the other children at our home. We are so thankful they moved here close to us in Georgia for the purpose of being helping hands and involved grandparents in their lives. My mom snapped a photo of us on our way so we could get one last glimpse of the "before" of how Jonathan looked as God created him when he was formed. And in the car we went with our sweet wonder.

As we arrived at CHOA, we checked in and slumped down into the brightly-colored orange chairs in the big waiting room. The craniofacial clinic also shares the floor with an area for children with spina bifida, cerebral palsy, and epilepsy among other things. We see parents with their young ones waiting, entering, and leaving the room. The waiting room is quite a surreal thing as we all exchange knowing looks, kind smiles, with hearts pouring out for one another. I see a mother talking sweetly to her son of about 9 years old with cerebral palsy. I see two other mothers with cleft babies and a set of concerned grandparents. We all love our children and there is so much pulling of heart strings in the room. I get a bit teary-eyed as I think about how amazing each of these precious gifts are to the world and how even more amazing many of these mothers are for not deserting them.

When I prayed to the Lord last year, I asked him to break my heart for what breaks His. And you know what? He did! It did not break when I had a baby born with a cleft palate and lip. It broke when I thought about all the innocent children who are born and abandoned around the world. There are so many children who didn't ask for this but because they were born this way, mothers and fathers deserted them. Orphanages are filled with them and some of them are older children who have never had any treatment. This is what breaks my heart.

I hear God. I hear Him telling me that this is only the beginning. I've always wanted to adopt someday after having my own. Is this what He is calling me to in the future? When I looked around the internet at cleft lips and palettes before Jonathan was born so I could learn more, I saw many sites with babies and children waiting to be adopted with this very thing. I know it's not possible right now to adopt. But maybe, just maybe it will be someday.

Even so, my heart is broken for those left alone. My heart is broken for those without loving families there to support them as they go through the process of treatment. And I hope that we can all think about it and do something. Even if we can't adopt, we can do something and we should.

Now back to Jonathan's NAM insertion and fitting we will go. We were called back and met with Dr. Granger who will be Jonathan's orthodontist. He will see him all the way through to adulthood insuring Jonathan gets what he needs as treatment for his mouth. He was the one who created the mold for him at the last appointment and he is who we will see on about a weekly basis until his first surgery making necessary adjustments to the NAM.

Dr. Granger showed us the process of the different tapes. One set of tape is cut to the size of a nickel and placed in front of the ears. The other set of tape is wrapped around the rubber bands which holds the NAM in place and keeps it tight. He tested the NAM inside Jonathan. It needed some filing down to fit just right. He left the room to return several times until it fit just right. The part of the tape with the rubber bands slips over it. He calls it "baby headgear" and looks about like that sort of thing too.

Once it has a good fit, we leave it in and are free to go. The NAM, which is sort of like a retainer basically, has to be removed to be cleaned about 4 times a day. The white tape needs to be changed 2-3 times a day. The nickel sized tape comes off about once a week and we leave it off to allow his skin to breathe for about 3 hours. We were warned Jonathan would fuss a lot the next few days. His tongue which is used to going up into the roof of his mouth now has to learn to go forward. But we were also warned that at the end of this process, once we remove it, he will hate it because he will be so used to it.

So far, he cries as he learns to eat from his bottle differently with something new in the way. He has been fussier and fights it a bit. I have been holding him for about 5 hours now and he refuses to allow me to put him down, even to type this blog. But that is okay as I know babies don't keep. I don't mind it one bit. And this is where I will leave you for now. We watch and wait to see how his mouth transforms with this device before he starts the surgeries in the coming months.

(loving on their brother)

(not happy with this thing!)