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.


  1. Oh precious boy!! What a wonderful addition to your family! I know it definitely has its challenges and frustrations, and must get overwhelming at times... But as always I am amazed at you and Mike for being the faithful, God-serving parents you are! Love you friend!!

  2. What joy! What an excellent gift from God! Jonathan is 'fearfully and wonderfully made' for Gods glory and honor

  3. What a beautiful boy, Carrie! I am praying for you. Thank you for sharing your heart!

  4. He is so handsome, what a blessing! Thank you for introducing him and sharing your story!

  5. Sweet friend, thank you for sharing your journey and your heart. God definitely has a plan for our sweet boy and such blessings in store. You are amazing to choose to see His hand and His goodness. It is an honor to see this process, walk this road along side you and Mike and your precious family, and to lift you up in the process. All our love....Martha

  6. He's so beautiful. I'll keep Jonathan Luke and your family in my prayers. God bless and keep you all.

    Drusilla Barron

  7. Beautiful story, Carrie. Thank you for keeping all of us updated. Jonathan is absolutely a gift from God...I love the story on how you arrived at naming him Jonathan. Continued prayers for Jonathan. I look forward to meeting my newest nephew soon.


    James McCoy

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  9. Carrie, I love your story and how you are documenting Jon Luke's journey through pictures and words. What an inspiration for all of us - to watch God at work, day by day. God chose you and Mike for a reason to be his parents, and God NEVER makes mistakes!!! I love you all very much!!!


  10. Love and prayers for you guys Carrie! You are all very blessed and I love the story of how his name came about! Thank you for sharing your heart!

  11. I'm so glad to hear how well he is doing. And he is SO ADORABLE! God will lead you every step of the way on this journey. God will glorify Himself through your precious family.