I apologize for waiting to update all of you on Gabriel’s surgery, but I have had such a crazy mixture of emotions, I thought I better get them in check before I unleashed them on our blog!
First let me start by saying, Gabriel’s surgery on Wednesday went well. He did great – considering he is a 15 week old who was under anesthesia for 6 hours! He spent most of Wednesday sleeping. We had to force feed him Wednesday and Thursday. By Friday morning, he was officially eating on his own!!! We ended up switching back to the bottles we used before the Latham Device went is as they are much softer than the Pigeon bottles. The flow is a little fast, making him choke from time-to-time, but we think he will get used to it again.
Now the not-so-great news: If you recall, the objective of this surgery was to close both openings in Gabriel’s gums using donor bone and also do a partial lip repair to finally give him nostrils. Imagine my excitement when Dr. S called us into the consultation room and told us that everything went great!!! Then he proceeded to tell us that he was only able to close one side of the gums. No big deal – we knew this was a possibility. What we didn’t know, however, is that Dr. S told us Gabriel’s cleft is one of the widest he has ever seen. Because of this, the side of his gums left open will likely not be able to be repaired until he is between 5 and 7 years old. I asked what happens to the side of the palate then that is attached to the opening in the gums, and he said it would also likely not be repaired until 5 to 7 years old. Additionally, Frank isn’t exactly where he belongs, but the hope is that the partially repaired lips will push him further into place.
I was devastated. Here I thought all of this would be behind us before Gabriel’s first birthday. I thought there was no chance he would remember any of this or be impacted by it except in the event he needs to have his jaw realigned or a nose job. Now I am hearing that, not only will he have his full lip repair and one side of his palate repaired this year, but that he has to start going to school with gaps in one side of his gums and palate. Dr. S said that he will likely have to have dental implants and much work done with his teeth. He also said that speech therapy will be of the utmost importance because Gabriel will learn to speak with the cleft and then have to relearn to speak without it. He has basically gone from having a bilateral cleft palate to a unilateral one.
I was taken to recovery to rock Gabriel for the hour he needed to spend there. When I first saw him, I was in complete and utter shock. He looked so different. Not bad, just not the face I knew just seven hours before.
And then it hit – I started crying. Crying because I was happy he was ok, but also crying for the 15 week old baby moaning in my lap. Crying because of the devastation I felt knowing surgeries are not going to be over as early as we had planned. Crying because at least three nurses came by and said it was good he would be fixed before he was a year old and wouldn’t remember any of this – I knew better now.
He will remember. Not these surgeries in the first year of his life, but the surgeries when he’s between 5 and 7 years old, the mass amount of dental and orthodontic work, the countless hours of speech therapy, and the possible nose job when he’s in his late teens. He will remember having to explain his eating behavior modifications and the gap in his gums to the little kids he meets in school. He will remember every time he has to give a surgical history as an adult at the doctor’s office – knowing there will be at least four more, and that’s only if the palate repair is successful. He’ll remember when he’s at his wife’s ultrasound for their first child and fretting about whether or not he passed on clefts to his child.
And I will remember. In fact, I am sure there is nothing that could make me forget.
So, here we are – three days post-op. I don’t get shocked anymore when I see his face – I am actually starting to forget that he hasn’t always looked as he does today. He’s smiling, he’s eating, he’s playing and we are the luckiest parents in the world. So strong, my boy. I only hope I can muster up enough strength to help him through all the challenges ahead.
Very first smile - 3 weeks old
Preparing for surgery #2 - 14 weeks 6 days old
Post-Surgery Exhaustion
New Smile - Glad to be Home!!!
I am speechless at the change in our beautiful boy and at your courage. He is and will continue to be remarkable because he has his family and friends by his side.
ReplyDeleteYour mom and I had a friend in junior high whose speech impediment was so severe that you could barely understand a word he said. He made speeches and was elected to student council. Everyone rooted for him and admired his grit and courage. It wasn't pity at all.
A friend of mine has fingers on only one hand. You know him for a long time before you notice. He does everything the rest of us do with only one hand.
If Gabriel accepts his condition, others will too.