The famous words from our surgeon, “I don’t watch the clock“. Every single time we see her she says this to my husband and I. To remind us not to panic when our baby is back in the OR. Not to count the hours that go by. Not to worry because he has been back there for 5+ hours… These words are probably the most comforting words to us other than being told Liam is out of surgery and doing okay, weird… I know.
I sit here writing this, wondering “How it is already time to send him back into the operating room?” I feel like it was just last week we were preparing to say goodbye to his sweet wide smile. Like it was just last week that we were in the hospital for much longer than expected. Like it was just last week that we had to watch our baby in the worst pain of his life.
Liam will be having surgery in just 3 short weeks to repair his palate. This will be his second surgery within 10 months. This surgery will help Liam with his speech, eating, breathing and swallowing, etc.
Many ask “How can they repair something that isn’t there?” Liam has a very small part of his palate. The repair is done in two different layers. They repair the top by closing off his nasal passages from his mouth and then the bottom layer by stretching and bringing his palate together.
During surgery our surgeon will make incisions along the cleft and separate the tissues from the bone. She will also make incisions along the gums, this allows her to stretch the tissue to the middle of his mouth and close his palate. Once she has closed his palate as much as possible, she will stitch in the shape of a “Z”. This is going to help with Liam’s speech because it places the muscle into a more “normal” position to heal and grow. It also provides more tissue which helps the palate seal the nasal passage from the throat. She does leave two small holes along the front of his gum line that will later be repaired during his bone graft surgery. With Liam having a very wide bilateral cleft, there is a greater risk of his palate not closing all the way. This is something our surgeon has prepared us for, just in case.
My husband and I get a lot…
“How do you do it?” “I can’t imagine sending my baby into surgery.” “How do you handle it so well?” “You are so strong, I don’t know how you do it.” “I couldn’t do what you do.”
To be honest, the answer is we don’t have a choice. We were not given a choice. We don’t know how we do it, we just do it. Sometimes we feel like we can’t do it. I remember driving to the hospital the morning of his first surgery and I said out loud “I cannot do this”. I honestly couldn’t lift my feet up to step out of the car at first, my body was so heavy. I was terrified. But Liam also doesn’t have a choice. He wasn’t given an option to be born with a “normal” lip and palate. He has to deal with this for many years to come. He will have to constantly be worrying about his next surgery. He will have so many speech therapy appointments, pre-op appointments, post-op appointments, surgeries, recoveries, dental appointments, etc. Unfortunately, this isn’t something that just goes away after a couple of surgeries.
So our answer is, we do it because we have to do it. We do it for our son. We are just doing what is best for him. It isn’t something that we can avoid. We can’t hide from it. We are strong because we have to be. I cannot begin to tell you how many times we just wanted to give up on the NAM. How many times we thought we couldn’t do it. How many times we wanted to just break down. But we didn’t because our son needs us.
This cleft journey is something that I will never understand. Why was Liam given this tough life? Why did he have to be born with a cleft lip and palate? It is so unfair. It’s the most heart wrenching thing to see your baby in pain, to send them into surgery, to be completely helpless when they need you to the most.
This cleft journey is the hardest thing we will ever have to do. But this is our journey.