Wednesday, December 30, 2015

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!)

Monday, December 28, 2015

The Journey Ahead

We would like to have you all welcome Jonathan Luke into our lives. As fast as the time has gone these past few weeks, I have not had the chance to do very much updating. The time I do have is centered around feedings for Jonathan, the other children, trying to prepare for the holiday madness, and so on. I am sure there will be grammar errors within this post and a lot of non-intended comical remarks due to sleep deprivation. However, I will do my best to fill you all in.

Our little guy arrived in November and has already had quite a story to tell. As we expected, Jonathan was born with a severe bilateral cleft lip and palette. We have had several doctor's appointments already involving weight checks, feeding evaluations, dental evaluations, and overall milestone checks. His feedings are going fairly well. I exclusively pump, which has been a different challenge. He eats using a special bottle by Medela (aka: Haberman bottle).

On the roof of his mouth is an ulcer that is quite common for babies that have a cleft palette. We are supposed to apply a water-based ointment to it to help the tissue before he has his first surgery. He has a retracted jaw that they think he might grow out of with time. CHOA at Scottish Rite (Children's Hospital of Atlanta) shared with us that it's actually to his benefit as it is less likely he will swallow his tongue. Nonetheless, we keep him upright as much as possible at a 45-degree angle, most importantly during and after feedings.

So I pump and feed him with the bottles which takes time. He can't swallow as easily so he has a medium flow on his bottle which allows him not to take too much in. We have to be patient and allow lots of time for him to swallow and breathe. He oftens spits up or has it coming out of the opening of his nose if we aren't careful. In addition, he can swallow a lot of air which is another reason to take our time with the feedings. The Craniofacial Clinic at CHOA is very impressed so far with his weight gain as that is often one of the biggest challenges to start. If I were to guess, I would say he's somewhere around 9 1/2 lbs already and he was born at 7 lbs. 15 oz. So this is a huge praise to God that Jonathan can eat so well given his circumstances.

We met with the surgeon a couple of weeks ago who said that Jonathan will need 8 surgeries until he's 21 years old. The first two surgeries take place within the first year of life. First, he will have the lip surgery around 5 months of age. Second, he'll have the palette surgery around 9 months of age. The next surgery will be around age 3/4 after he has been evaluated for speech. Around age 8/9, Jonathan will have a bone graft surgery. This is supposed to be a big one and also very painful. If you have kept up with Duck Dynasty, Mia Robertson, recently had this surgery a year or so ago.

After we met with the surgeon, we met with the orthodontist. He created a molding and had it fitted into Jonathan's mouth as they are making a retainer like device out of it called the NAM (nasal alveolar molding). We go back on the 30th of this month to have it put in. Jonathan will wear this until his first surgery. The purpose of the NAM is to pull everything as close together as they can get it before his lip surgery. This has several purposes such as to reduce scarring, improve the appearance of his lip, create more for the surgeon to work with, and it can also help with feedings.

While we were there at this appointment, we met another lovely couple with a 5 month old daughter. She was getting ready for her surgery in a couple of weeks. Their daughter was born with a unilateral cleft lip and palette. They were just ahead of us in this game and were a great source of information to gather from as we talked. Even more, we found out they are a military family and were deployed overseas to the same area as Mike at the same time. We are amazed at the people we've come into contact with and met so far in this new adventure.

As for now, Jonathan has been wearing special tape to help with the area that sticks out to put pressure on it and bring it down. Once he gets the NAM in a couple of days, it will help even more. I can already see some improvement with the taping. I am taking lots of pictures of this whole process and look forward to making an album for him as he goes through it all so he can look back on it.

I am happy to report that not only is Jonathan an excellent eater, he also sleeps well. He doesn't even know he has a cleft so it's really all the same to him as anyone else. We know that having the surgeries is just part of the process. We know that he will endure so much more than just a quick cosmetic fix. Jonathan will have a journey ahead of him with teeth issues, speech issues, and even hearing issues. As we head into this, we ask that you pray for him. We ask that you pray for his surgeries and treatments. We know that God brought us on this journey for a reason. The story for our little guy is just beginning. And the fact that we get to be apart of it, despite the challenges, is actually pretty cool.

When we were picking out a name for our little guy, I was sitting in church one week. Our church was having a healing service. They read from the book of John and I kept thinking of that name. When the music came on, our little Jonathan was doing leaps in my womb and I couldn't quit weeping. I can't describe it other than that I know God was speaking to me through this service at that time. The only thing I could think of was the story of when Mary went to Elizabeth after she found out she was pregnant with Jesus. Elizabeth was pregnant with John the Baptist and he moved in her womb. This hit me and I realized our little boy needed to have the name, Jon. Jonathan means "gift of God" and Luke means "light bearing." Our new baby is definitely a gift and I know he will bring the light of Christ to the world.

As we journey ahead with doctor's appointments, surgeries, and care, I pray God allows us to journey closer to Him in the process. I pray He not only brings healing to Jon Luke's cleft but also healing to many hearts around him, including our own. I pray that God brings us closer as a family and uses us to share this story in a wonderful way.