When Grayson was born Tuesday morning ( 3/22/2016), we were all surprised he had a bilateral cleft lip and palate. The only ultrasounds I had done did not detect it like it normally does. Most parents know and are prepared for what's ahead of them. But Andy and I were not prepared at all.
Grayson was transported to Texas Children's Hospital only a few hours after he was born. I didn't even get to hold him. Andy made the transport team bring him into my hospital room before they took him away. I only got to see him for a couple of minutes through the transport incubator. My heart was so broken.
I wasn't released until the next day around noon, and my mom took me straight to TCH. I finally got to see and hold my precious baby boy. I then found out the severity of his condition. I knew I was going to breast feed him from day 1, but that was shattered when the doctors told me he more than likely won't be able to latch onto my breast because of his cleft palate.
So right now he is being fed formula
through a special bottle for babies with cleft lip and palate. It is the Dr. Brown's specialty feeder. He has to be positioned a certain way to drink his bottle, because if he drinks it laying down he will choke because of his cleft palate. He had to stay in the NICU for the first 3 weeks of his life while he learned to eat with his bottle. He was also fed through a feeding tube that went through his nose and down into his stomach. We spent those 3 weeks being trained how to feed him with the special bottle and also on how to put in his feeding tube correctly and feed him through it, because we had to continue using the feeding tube for several months after he came home. We finally got to take it out at the end of July.
On August 25th he had his first sugery to repair his bilateral cleft lip. He is recovering pretty well and he is back to being the happy baby he was before. On October 4th he will undergo surgery to repair the hyposadias (which is a problem that has nothing to do with his mouth), and when he is 11-14 months old he will undergo surgery to repair his bilateral cleft palate. The doctors are estimating 8 surgeries total. I thought that was going to be the end of it, but sadly it isn't, I found out that we are going to have a very long road ahead of us with our baby boy. He will have to have a bone graft done on his jaw where his gum line is separated due to his cleft palate; that will be around 10 years of age. We will be seeing doctors and specialists for the next 18 years. He will be in speach therapy because the cleft palate will make it hard for him to speak correctly. He will be very prone to ear infections and may also have to have tubes put in his ears because of the cleft palate, and we will have to have his hearing checked regularly. It's likely he will have to have more reconstructive surgeries throughout the years because as he grows the scars may need to be worked on.
Grayson has a team of specialist with a timeline already planned for each step of the way. We are ready to start getting things going, but we are also very nervous for all of the upcoming surgeries.
I am not able to go back to work because of Grayson's special feedings and all the doctor/specialist appointments we have to go to, and money has been very tight for us. Andy works as much and as hard as he can to keep me at home and provide for us, but we need all the help we can get! Any amount you can donate will be such a blessing to our family! Even if you can't donate; please share our story!
We are very blessed to have so many people praying for Grayson and the family. All the positive messages of love and support are a tremendous help for us! We have a long road ahead, but it will all be worth it and possible with the love and support from each of you! God bless all of our friends and family!
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