6 months down; a lifetime to go

Well, we did it! We survived the first 6 months of this cleft journey. This has been the hardest 6 months of your lives; even harder for our little man. It feels like it was just yesterday that I had Liam, but it also feels like years at the same time. It’s been a rough road. 3 long months with the NAM and taping. Lip repair surgery. A very hard recovery. Feeding complications after surgery that lead to hospitalizations.

Our little man has been through a lot but he has handled it like a CHAMP.

Unfortunately, since surgery Liam has had some breathing issues. We noticed that while eating his bottle he would randomly stop breathing for about 10-20 seconds. His face would be almost purple by the time he caught his breath. This happened back when he was a newborn as well. Back then we were always told that it was because it was difficult for him to eat with his cleft lip. This time we thought maybe the nipple on the bottle was too fast. Because Liam does not have suction he has a special valve in his bottle that allows him to get milk by just nibbling on the nipple, so we thought maybe it was squirting too fast for him. We also have to put rice cereal in his bottle to thicken his feeds due to his reflux. We tried everything with his bottle to help but he was still having these episodes where he would stop breathing. It started happening more frequently, even with eating his baby food.

While at dinner one night I looked over at Liam in his stroller and he was not breathing; completely purple. By the time I could get him out of the stroller he had finally caught his breath. This time it lasted longer than 20 seconds, from the time I saw it happening.  He wasn’t eating at the time. Wasn’t sleeping, just sitting there playing with his book.

This was it for me. I knew something wasn’t right.

Our pediatrician told us it was bronchospasms which occurs when the airways (bronchial tubes) go into spasm and contract. This is usually caused by an allergic reaction, inflammation or irritation of the airways. Something didn’t sit right with me. He wasn’t having an allergic reaction. We absolutely love his pediatrician and have all the trust in the world in him but something was telling me to call Liam’s surgeon. Fast forward a bit… because this was happening more frequently and Liam was making high pitch noises almost constantly; our surgeon wanted to get a scope done to check his airway.

This was such a hard appointment for us.

 My husband wasn’t able to get off of work so it was just Liam and I. They didn’t want to put Liam under anesthesia because it was such a quick procedure. So here we are again… another procedure, holding Liam so tight while they shove a scope down his nose and throat. I have never heard him scream like that before. Now he and I both are crying in the chair. Thankfully, the scope came back normal. This was such a relief! But now it meant onto the next procedure to try to find out why he is having these episodes.

6 days later, we took him back to Charleston to get a swallow study done. Cleft palate causes difficulty in swallowing so many cleft babies will have this study done. They had me feed Liam this thick liquid called Barium in an X-RAY machine. Liam actually did really well during the study. He wasn’t a fan of the Barium but because he wasn’t allowed to eat before the test I think he was just so hungry he dealt with it. Luckily, Liam passed this test as well!

They now think the episodes that he is having are caused by a combination of laryngospasms, reflux and having small nasal passages. Laryngospasms are spasms of the vocal cords that temporarily make it difficult to speak or breathe. During lip repair surgery, they brought together his lip and nose to close the cleft. Unfortunately, doing this tightened his nostril closer together making his airway very small. Fortunately, his nasal passages will open up more throughout the years.

On top of normal teething, Liam has had two teeth cut through his palate.

This has been so hard and painful for him.

Liam has bilateral cleft palate, meaning he has two gaps in his palate. He has only a very, very tiny part of his palate. One tooth has come in on the only piece of the palate that he has and the other tooth has come in on an angle in between the two clefts. This is a horrible position for it to come in at because not only is it cutting through the roof of his mouth but it’s now also growing into the other side of his cleft. This as you can imagine is very, very painful for him.

Unfortunately, there is nothing we can do about this until his palate repair surgery in January. They will remove these teeth during surgery.

Many ask,

 “Will he have all his teeth?”

“Will his adult teeth grow in right?”

“Will more teeth need to be pulled?”

“Will more grow on the roof of his mouth?”

To be honest, we are asking the same questions. Unfortunately, there is no way to know how his teeth will come in or if he will have them all. The only thing our doctor can tell us is that they will not come in where they should be. We are prepared for this.

On a happier note,

Liam is doing great with baby food. He loves it! We have also introduced some table food to him as well. Table food is a little more challenging because his palate is open so it’s very difficult for him to chew and swallow.  Also because of this, a lot of his food goes up into his nose and out of his nostrils. This does bother him but he is starting to get used to it.

His weight gain is fantastic! He weighs a whoppin’ 17lbs. 10oz! His doctors are so surprised and happy with how well he is gaining weight. What can I say, my baby loves to eat!

His scar is looking amazing! Our surgeon was afraid that it would start to raise a bit and swell which would require steroids but *knock on wood* it hasn’t yet!

Liam is still wearing his nasal elevator tape. His surgeon still wants him to wear it to help shape his nostril in hopes to avoid another surgery on his nose. You may notice in some pictures he is wearing it and some he isn’t. That is because he has learned that he can rip it off now! It doesn’t hurt or bother him; it’s just a little annoying I’m sure!

Overall, Liam is doing amazing! He is rolling all over the place, trying to crawl. Talking like crazy and eating even crazier. We are finally starting to see the true Liam; no pain, no NAM. Just our sweet son enjoying his life! We are praying that his breathing issues get better. Surgery is sneaking up on us quickly. We are not ready to put him through that again. We are hoping for a smoother recovery than last time. But until then we are enjoying every second with our little man. He is growing up so quickly!

*As always, thank you all so much for the continuous love and support.

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