Well, we’re here, again. It’s been almost 8 years since Carson’s last cleft surgery, but 8 years is still not long enough. Those memories flood back on you, and you have to fight that punched-in-the-gut feeling.
Psalm 4:6 “Be anxious for nothing…” kept running through my heart and mind, as they prepped Carson for today’s bone graft surgery.
He, of course was so excited to be watching a movie and had already exuberantly picked out the cherry flavor for his silly gas he would soon be breathing.
We walked into the room where he was supposed to get his silly gas, hold Mama’s hand and slowly and peacefully slip into his sleepy state, but that’s not exactly how it happened. The anesthesiologist waltzed in, gave Carson a fist bump and said, “Hey!! You like cool Science stuff!? I’ve got some awesome stuff to show you in the Operating Room! Want to see?!”
Carson said, “Yes!”, waved to us, said “bye,” and that was it. The operating door closed behind them and we were left staring at the door with the nurse.
Not quite what I had planned, but I should know by now that nothing goes according to my plans (thank goodness). God always has the better plan.
Be anxious for nothing…Carson had surly grasped that truth.
The faith of a child…I needed to grasp it, now.
We walked toward the cafeteria to grab a bagel, and that’s when my blessings list started to grow. We began to pass children who were swollen from chemo treatments, children in wheelchairs who would probably never walk again, children with tubes and wires and braces and crutches. As we passed them, I could envision my little petty problems dropping to the floor and being crunched by those kid-sized wheelchairs. No, Carson’s surgery was not just a petty problem, but I could praise the Lord that after only 5 hours we were headed home.
I couldn’t have said it 8 years ago, but today I can truly say that I’m thankful we are “only” dealing with cleft lip issues.
So, this year on Thanksgiving, everything may not be perfect, but God is good and we are blessed. This year, that’s enough for me.
If you’d like to read more about having joy while accepting your child’s cleft, or read about some ideas that were successful for us, when taking care of a child with a cleft lip and palate, click on the links below.
I’ve always felt that the dinner table is a microcosm of the world–a place to give and receive ideas, to take criticism, to learn how to converse, to look in each other’s eyes and to also lend a listening ear. I’m not saying we are always talking and taking the time we should at the table, but I cherish the moments when we can.
So, for Table-Talk Tuesday, I thought I’d share a bit of the crazy conversations that ensue around our house. I could fill post after post with just Carson-isms, much less the crazy antics of my little Bam-Bam, Cole, but I’ll try to boil it down to just a couple, once a week.
The month of July is Cleft Lip Awareness Month, so I just had to share our latest cleft lip conversation with my son, Carson. Last week, we were sitting around the dinner table and the topic of Carson’s cleft lip surgery came up. Chad and I were telling him about his “No-Nos,” the arm braces he had to wear so that he couldn’t bend his arms and scratch or hurt his little healing lip and nose.
Carson: How did the doctors get my lip to stay together?
Me: They used stitches to join it together, and they actually used super glue on the outside.
Carson: For real?! They used real super glue?!
Me: Yep, amazing, huh? (After the Lego movie, Carson is all about Krazy Glue…aka Kragle)
It was then that Chad, my husband, made a comment to me, and I turned away from Carson. We were talking a few minutes when I noticed in my peripheral vision Carson doing something out of the ordinary. He was gritting his teeth in determination while stretching his top lip with both hands.
Me: (It freaked me out! I yelled! ) Quit! What in the world are you doing?!
Carson: (calm and matter-of-fact) Yep, that sure is SOME super glue, Mom. Didn’t even budge.
Chad and I lost it. We were cracking up. I was half crying, half laughing, half feeling weak like a noodle, thinking about him doing anything to split his lip (that’s a little too many “halves” I guess, oh well).
Carson: Well Mom, I had to make sure. It’s good. No worries.
Sigh…I still feel weak when I think about him yanking on his lip, but really, I’m glad it’s such a “cool” idea to him. I’m glad it’s common talk. I’m glad it’s not a moot, hush-hush topic. It shouldn’t be. It’s who he is. That strong scar is a testament to the skilled surgeons who were gifted by the Lord to help our son, and Carson’s strength of character is a testament to the friends and family who were gifted by the Lord to love, support, and encourage him. Thank you, thank you, Lord…
When we found out that Carson was going to be born with a cleft, we made a the decision that we were not going to hide it. If we wanted people to accept him, then we needed to be completely open. The helpful comments that many gave were always meant well, but didn’t always hit the intended mark of comforting us. And so the story of Mr. Wiggles came to us …
While I was still carrying him, we talked about Carson’s cleft with our church family–answering questions and asking for their prayers. I remember thinking I want to talk about this so much that it becomes common to me, so people won’t feel sorry for me anymore, and so I won’t cry anymore when I talk about it . I chose to have joy. Even though it was not always an easy decision, I know it was the right one.
A sincere and sweet lady walked up to me after church. She was very serious when she said, “I’ve been praying about this, and really feel like the Lord would want me to tell you this. I really think this will help you see that everything will be all right.” She held my hand at this point and teared up. “I have a dog named Wiggles that was born with a cleft lip. The vet fixed it, and you can’t even tell. Now, he’ll never be able to father puppies, but he is just fine. I just wanted to encourage you , honey.”
Now, I could have been offended and hurt, but I chose not to . I couldn’t help it; I laughed out loud! My unborn child was being compared to a dog, that couldn’t have pups, but he’ll be okay? What sort of response was I to give to this? All I could think to say was, “Thank you?”
The story has now become a staple in our family history. Even today, we have friends who call our son, “Mr. Wiggles,” although he doesn’t know the story or why they do so. Maybe you think we’re nuts or twisted or crazy, but we chose to laugh instead of cry. We chose joy.
When I remember Carson’s birth, two words come to my mind–fear and uncertainty. I feel guilty saying it, but I couldn’t enjoy his birth. We were just too scared. He was born with a unilateral cleft lip (cleft on one side) and bilateral cleft palate (just about the entire roof of his mouth was open). The doctors told us the cleft could affect his brain, his heart, etc. He had to have a CAT scan and other tests to determine the extent of the cleft. Thankfully, after the test results were back, we found out that Carson had no other issues. There are a few ideas/items, in regard to the first few days/weeks after delivery, that I’d recommend to other parents who are having or have just given birth to a child like Carson: 1. Every case is different. Do what works for you and your family. I know that doesn’t sound helpful, but it’s true. There are so many suggestions, but if they aren’t working for you, forget it and try something else. 2. Don’t kill yourself trying to breastfeed. The entire roof of Carson’s mouth was open, so he could not suck. The lactation consultant at the hospital did not tell me this, and I never thought of it. I stressed myself out to the point of tears and exhaustion, trying to force Carson to breastfeed. I know that some babies with only a cleft lip are able to breast feed, but Carson was not. 3. Try the Haberman feeder. I know this doesn’t work for everyone, but I only know what worked for us. We tried this and it was great. Drawback–the nipples are $14 and rip easily. Our solution? Dr. Brown’s nipples. We cut tiny slits with a razor blade, to match the type of nipples in the Haberman nipples. We slid the handle end of a wooden spoon up into the nipple, so we could apply pressure lightly, without cutting too much. These nipples are $2.50 for 2. Carson used the Dr. Brown’s until after his 10 month surgery.
BEFORE CARSON’S FIRST SURGERY-
This is one of my favorite pictures of Carson, before he had his surgery. Notice he had a sun hat on, and you can barely see that he was hooked to me in the front pack baby carrier. I’m pointing this out for an important reason. The best advice I could give someone who is a parent to a child with a cleft, is to be proud of the child God gave you. We brought Carson everywhere: church, Walmart, the park, etc.
I’m not saying it will always be easy, because it wasn’t. But I believe it’s a must. When people want to see your baby, don’t hide, don’t make excuses, and don’t fall to pieces if someone does make a comment. We were blessed that no one made any negative comments about our son. I do stress the word negative. We had plenty of people make comments, pretty hilarious ones. But they spoke them out of a heart of caring and concern. We could have smarted off to them, gave a hurtful retort, or decided to take Carson back to the shadows of safety at home and never venture out again, but we chose to laugh. We chose joy. You must, in order to survive. Here’s a quick example (I’ve also included a link below, to another, longer story): I had Carson (before his cleft repair) in his car seat and clipped into the cart at Walmart. We had just walked into the store, when the greeter met us and said, “Oh, let me see that tiny baby!” The car seat was facing away from the elderly worker, so I whirled the cart around. The moment she saw him she gasped and loudly declared, “Oh, Honey! You do know that you can get those things fixed these days!” I nearly swallowed my tongue to keep from laughing. In hind sight, I wish I had dropped to my knees and said, “Oh, thank you! Thank you! I had know idea!” Now, I know others would have been upset, and maybe I should have been, but again, I chose joy. She was a sweet old lady, and she thought she was helping. And really? She did help. She’s still providing joy, even after 7 years. Click here if you want to read a longer, even funnier, story about another time we chose joy over despair.
FOUR MONTHS/ LIP SURGERY-
At 4 months, Carson had his first surgery to repair his lip. Some more (hopefully) helpful advice about the surgeries and after: 1. Network on Face Book with other cleft parents to find the best surgeon in your area. I praise the Lord that our pediatrician had studied under Dr. Kevin Hagan at Vanderbilt University Medical Center in Nashville, TN, and recommended him to us. We have met countless people who have had negative cleft repair stories. In our opinion, Dr. Hagan is the best, hands down. 2. You won’t quite recognize your child, when you first see him/her after surgery. This was the strangest experience. I knew my baby with the wide smile; this was not Carson; this was not the same baby. I felt like I was reaching for another mother’s baby the first time they handed him to me. But I remember the first time he smiled. I remember looking at Carson’s face light up in all the same smile places and saying, “There you are. There’s my buddy.” 3. Mamas, crawl right up there in the hospital bed with your baby. I didn’t the first surgery, because I didn’t think I was allowed. After Carson’s second surgery, at 10 months, I didn’t care. It was the best idea. I could never sleep in those chairs holding him, so this way we both got sleep and I was there to pat him, prop him, and love him. 4. Be your child’s advocate. If you know they’re in pain, get pain medication. The doctors/nurses don’t like to give it, and I understand, but if your child is in pain, request it. Demand it, if need be. I would request it about 20 min before I knew it was about to wear off. If I waited until it had completely worn off, he would be in pain before they got it ready and got back to us. 5. Put him/her in their car seat to sleep. When we got home, he needed to be elevated and this seemed to be the perfect slant for him. We would set it in his room, with the monitor on him. He wasn’t rolling over, yet, so I even put a sheet over it, to make it softer and laid him in it like it was a bed. It worked great for us! 6. Follow the rules for the dreaded No-Nos. No-Nos are arm braces Carson had to wear so that he couldn’t rub and pick at his sutures on his lip. These are bittersweet inventions. They are completely necessary, but dreadful. Carson’s nose was very itchy from the anesthesia and later from his lip healing. He tried so hard to get his hands to his nose and lip and would have done damage, had it not been for his No-Nos. I would let him rub his nose on my arm or shoulder for a few seconds, though. I could control it a little by pulling him back, if he was being too rough. I just couldn’t stand the idea of having an itch and not being able to scratch it!
DEALING WITH THE OPEN PALATE-
After Carson’s lip repair and recuperation period, he began eating more solid foods. This was a struggle, because of his open palate. A lot of his food would come out of his nose, until he figured out how to maneuver it to the back of his throat. I never realized where your tongue goes when you eat. Just try it. Swallow. Your tongue will press against the roof of your mouth. Carson had no roof. 1. Treat the Reflux- Carson cried most of the time and experienced a lot of reflux. His pediatrician told us it was just reflux, and he would be fine. In hind sight, I wish I had insisted that we tried a reflux medicine, like Zantac. I found out later, that many other children with cleft palates are given this, to help with their reflux. I truly believe Carson was in discomfort most of the time, due to the severe reflux. When he spit up, it didn’t just go out his mouth, but all the way out of his nose. It sounds gross, but I’ve burped and had that burning feeling up in my throat. Think of how it would burn, without that barrier of a palate. Uggh. After his surgery, at 10 months, his reflux stopped and so did the fussiness. He became a happy baby. I still feel guilty about this. Babies don’t change their personalities over night. I thought he was just a strong-willed, fussy little booger. I truly believe that we/he could have enjoyed the first few months of his life so much more, if we had treated the reflux. 2. Slightly recline them when feeding them with a spoon. Whether you have a reclining high chair or need to throw a towel over the bouncy seat (like we did), I recommend reclining your child when he/she is eating. This seemed to help Carson with not spitting the food out his nose. We only did this for a little while, until he seemed to get the hang of pushing his food down, instead of up.
TEN MONTHS/ PALATE SURGERY-
A few more tips: 1. Expect a tougher recovery. Of course, I’m only speaking from our experience. Because of swelling in the nasal cavity and in his mouth, it was difficult for him to breathe and swallow right after surgery. The extreme difficulty only lasted about a day. In recovery, he was a little disoriented, scared and in pain. Crying made it worse. We asked for pain meds, and this helped to calm him and helped him sleep. Again, you have to ask. After the first day, the struggles were propping him up and helping him sleep. This is what I liked about sleeping in the bed with him. I could prop him up on me and we could both still get some sleep. 2. They heal very quickly. Let them. They do heal in just a couple of days. It just hurt me to think of him eating (soft foods), but when the Doctor allowed it, he was more than ready. 3. The roof of the mouth will be tender for years. This may seem crazy, but it is true. Anyone who has had major surgery (I’m thinking of my c-section) will know that their scar stays tender for a long time. My boys are 6 years apart, but my scar remained a little tender even up until I was pregnant with my second child. Carson was very sensitive (and still is a little) to hot foods/drinks. Things that I would consider warm, would make him cringe and spit his food out in pain. I know I said they heal quickly, and they do, but not in the area of temperature. Nothing else seemed to bother him, but this.
WE’VE BEEN BLESSED-
We have been blessed that Carson only had to have two surgeries–one to close his lip and one to close his palate. As I mentioned earlier, I believe this is due to the skillful hands of Dr. Hagan and the leading of the Lord. Carson has also not had chronic ear infections or any other problems, as a result of his cleft. I understand this is not normally the case, so we are thankful. He’s been healthier than a lot of other typical kids his age. Carson at 5 years old, on his first day of Kindergarten!!
THE (NEAR) FUTURE-
Carson is now seven and has seen his dentist, Ortho surgeon and orthodontist many times. The whole teeth situation for cleft children is quite something. It was very interesting the first time our dentist did X-rays on Carson. He started analyzing them, telling me that these two teeth were missing, and this tooth was sideways, and this one is in the roof of his mouth, and this one up above his other teeth would not have a permanent tooth, etc. I was staring at him as he listed the issues, thinking what a long road we had ahead of us. After listing a gazillion problems, he finished with, “…but I’ve seen a lot worse.” I laughed out loud. A lot worse? That didn’t seem possible. Carson is scheduled to have a spacer inserted into his upper mouth in November. His palate is too small to do his next (and hopefully, final) surgery. This will expand his palate, so that they can do the bone graft surgery. This is where they shave a small piece of bone from his hip and fuse the cleft together, that is still present above his gum line. Although his palate was repaired, there still remains an area in the upper gums that has a cleft. They want to fuse this together, before he begins to get his permanent teeth. This will keep his teeth from shifting. Well, seeing that he has permanent teeth…haha. I know it’s not funny, but remember, we are choosing joy, right?
THE (FUTURE) FUTURE-
So, our journey continues and will for many more years. But our Carson is a strong little guy. He will be okay, and we will be okay. I read something a mom wrote on a Cleft Lip Face Book page. She said her son was, “cleft-strong.” I thought that was a perfect line. We all have something we are dealing with in our lives, but we also all have a choice how we deal with our situations. Yes, it’s okay to curl up in a fetal position and cry your eyes out, but not forever. Your little wide-smiled buddy is waiting for your acceptance, your strength, your love, and your joy. Give it all. Be cleft-strong!