If you're new to our blog, and would like to start from the moment I learned I was having triplets, click HERE :)
Posts about Colton's Cleft Lip and Palate surgeries as well as the Triplets' Cranial Bands are along the sidebar.

Friday, April 9, 2010

Life with Colton's Cleft Lip & Palate...

So a few weeks ago, I checked my email and saw that my bloghad (somehow) received an award for being a leader in the Cleft Lip/ Palate Community. I'm sure that happened simply because a search for the terms 'Cleft Lip/Palate 'returned someresults on my blog and not because I really am a leader! Either way, it's always nice to receive ANY awards, so I proudly displayed it on my sidebar! Then I got to thinking. Aside from early on, I really haven't devoted much time on this blog to Colton's Cleft Lip or Palate.I figure that's because in our eyes, he's no different than his triplet brother or sister.

However... when I was still pregnant and learned that we were having a son who would be born with a bilateral cleft lip and palate, I, like those who have been in my shoes, starting searching for ANY information about this subject. (I wasn't so much looking for pictures as I was information regarding surgeries, etc.) Most of what I found was very clinical. Helpful, but clinical. (I was not quite as saavy a blogger at the time so I really only searched medical websites, completely forgetting to search personal blogs.) But I wanted to know what 'life' was like. Real life. I wanted to know what raising Colton as a baby would be like. And I didn't really find much...so to rectify that, I will be that "real life" information for anyone else searching...

So here we are! If you are having a child with a cleft lip or palate or you know someone who is, please, send them here! I will tell it like it is! Early on, about halfway through my 33 week pregnancy, we learned that Baby A (Colton) had a bilateral cleft lip and palate. I would say that both Brian and I were momentarily stunned upon hearing this news. And I would be lying if I didn't admit to being a little bit sad. Not for us, but for him. It's one thing to be a singleton and have this condition, but when you are born at the same time as two others, comparisons begin immediately and are frankly inevitable. (Plus, the kindergarten teacher in me has seen the blatant, often hurtful honesty of children and I just didn't want my child to ever fall victim to that.) So my heart broke for Colton, thinking about what people would say or think when they saw my triplets, and then noticed the "one with the cleft lip." But here's the thing. If you are receiving this news about your own child, DO NOT BE UPSET! It's NOT THAT BAD!

Honestly, I know we all want our children to be born perfect, but I don't think that's even possible. It is startling news to hear of course, but it will be whatever you make of it. None of my children are perfect and that's why I love them all. It's the funny things about each one that make them so unique. Who would want to be perfect? That's just a lot of unnecessary stress, dont you think? :) So be sad if you want for a day or so, but then remember:

This is NOT your fault, and more importantly, it is NOT your child's fault.

YOU must be your child's advocate. YOU are required to love your child unconditionally.

YOU are the one who must pave the road for your child.

YOU determine the attitude that you take.

YOU can seize this opportunity early on to teach others about tolerance and acceptance or you can wallow in sorrow or embarrassment.

YOU are the most important person in your child's life.

YOUR opinions about your child will most strongly influence THEIR opinions about themselves.

I'm not going to lie. I had to adjust a little bit to how I personally handled people's reactions to Colton when we would go in public. (Which we did very early on, even with triplets!) At the beginning, I was very forthright about it. We'd be standing in the checkout line at Target and the people behind us would notice the 3 babies and begin the standard line of triplet questioning, "Are they triplets?," "How old are they?" "How big were they?" And then, because I knew they were wondering but preferred to stand by, in awkward silence, as opposed to chance offending me once they noticed Colton's lip, I would always interject, "Yes, he has a cleft lip." {Really? As if they didn't notice} "He'll get to have surgery to correct that in a few months!" And then most people were at ease, knowing that I was at ease.

Don't get me wrong, there are socially ignorant people out there and we've all met them from time to time. I still remember the pain I felt the first time I heard the word "harelip" come out of someone's mouth when describing Colton. And through that pain and anger, rather than stew about it and be mad, I used it as an opportunity to teach. I explained to this woman that "harelip" is sort of an outdated term to describe this condition and can be construed as derogatory. I explained that it's simply called a cleft lip. She may have been offended by my remark to her, but I'm okay with that, because I'm pretty sure she'll remember it next time she comes across someone with a cleft lip. I'm certain she was not trying to be rude or insulting, but often times, as with anything, sometimes people just aren't aware they are being hurtful until someone brings it up.

For me, it ranks right up there with people using the word "retard" as in, "Oh my gosh, you are such a retard!" or "retarded" in that same light. NAILS. ON. A. CHALKBOARD. It's never insulting until you accidentally say it in front of someone whose child or family member or friend IS in fact, mentally retarded. Just food for thought..
(stepping down off my pedestal....)

Anyway, my point (2 paragraphs ago) was that initially, I felt this great need to just put it out there! But that subsided. Soon enough, I stopped even thinking twice about it, and I think others did too. Which again, is why I say, a cleft lip is no big deal. It will only be as much of an issue as you make it.

So right away, even while Colton was still in the NICU for being a preemie and having the cleft lip/palate, we were put in touch with an Orofacial Team here in our town who would help orchestrate all of Colton's services until he is 18. Years! Not months! How great is that? So my first advice is to find the closest Orofacial team to where you live. They will help you understand what kinds of special needs your child will have as they grow.
There are really just 3 things you might be interested to know about raising a baby with a cleft lip... (or in my case, raising one with a cleft lip and 2 without)

The first difference between Colton and his brother and sister is that he uses a different n.ipple on his bottles. He does not have an ability to suck like a typical child, so we were taught to use a Habermann N.ipple. I remember sort of fighting this with the NICU nurses at first. We really just wanted to SEE if Colton could eat from a regular bottle. But, he can't. He tried. And it's not a big deal. Whoever feeds Colton knows that they have to manually squeeze the n.ipple to allow formula to pass from the bottle, through the one-way valve and into the longer than normal n.ipple where it cannot flow back down.

Sounds easy right? Well it is. But it wasn't- for us, or for Colton. I would go home from the NICU so frustrated that I could not master the right amount of pressure to create the right amount of flow to get him to eat comfortably and he couldn't decide where in his mouth was most comfortable for that n.ipple to go. So he'd eat a few millileters and then be done. FRUS-TRA-TING!!! But as with anything else, practice made perfect and now the child can guzzle 10 ounces in a heartbeat! So that's the first difference.

Second difference? He had to have surgery at 3 months old. His brother and sister did not. He handled surgery like a pro and the results are hundreds of times better than I could have hoped for. His surgeon, Dr. Craig Hurst is phenomenal. Seriously. He used as much skin glue as he could as opposed to sutures so as to minimize scarring. Well, it worked. Colton's lip is amazing to me. Surgery was tough mainly because he was such a little baby. But he only stayed overnight one night and then continued to heal in the comforts of our home! Babies are much more resilient than adults, I believe that now. So now we prepare for his second surgery, which will correct his palate.

Third difference? Things {formula, snot, applesauce, green bean chunks, noodles, chicken, gerber puffs, you name it} come out of his nose. Before he'd started solid food and was adjusting to eating formula, he had pretty good reflux issue where formula would literally come pouring back out his nostrils and it was scary. Scary for us and scarier for him. I don't think he was ever in any kind of danger, but let's just say that the bulb syringe (snot sucker) stayed close to wherever Colton was because it was the fastest way to clear his nose and prevent him from choking, once it started flowing. Luckily he outgrew that issue at about 6 months old.

Now, the issue is with solid food. He can eat everything his brother and sister eat. Gerber puffs, real chicken, noodles, pasta, vegetables, crackers, jello, yogurt, fruit, etc. Literally exactly the same things. However.....in the process of swallowing, food often makes its way from the mouth up into his nasal cavity (because remember, he doesn't have a closed roof of his mouth) and it tickles his nose and causes a good ol' aaah...aaaahhh....aaaaahhhhhhh...CHOOOOO! And with the force of rocket headed for space, OUT the nose comes whatever he was eating! It bothers him only slightly now, though his brother and sister have begun to find it hysterical when Colton sneezes and he's left with a noodle hanging out his nose! Aaah, sibling love. So it's not a big deal, just slightly bothersome for Colton. We just always keep paper towels handy at meal times. :)

Otherwise, he does everything the same way his brother and sister do. He uses the same sippy cup they do (though I purposely bought brands like Munchkin and Nuby that have clear silicone spouts as opposed to hard plastic. This way, Colton can at least kind of 'chew' on the spout and get the water to come out since he does not have that same ability to suck.) Although I'll say this, he's gotten darn good at it without a lot of chewing.

And frankly, that's it. Those are the only issues we've had to deal with in his first year of life. Not bad huh? And let me just say, Colton's new smile melts hearts faster than my microwave melts butter. I am not kidding. Those who know him know exactly what I mean. The funny thing though is this...when it was time for Colton to have surgery to correct his lip, I didn't want to lose the smile he was born with. That is the truth. He is my child.. he was perfect for me then and perfect for me still. Interestingly, Colton was the first born and he wears that title to a T. He is the leader of the pack, has always done everything first and is just incredibly smart. My dad always muses that Colton was somehow given extra talents and abilities in life because he had to bear the burden, if you want to call it that, of having a birth defect. He may just be right. But I'll tell you this...Colton is going to do great things in his life. Nothing will stop him. And I just can't wait to be there...

So now, we prepare for his next surgery. Looks like May 4th is the big day! I'll keep you posted! And no worries, everyone, my personal anesthesiologist is already on board! Thank you Tony!
So let's just sum up today's ramblings...

A cleft lip is not a big deal.
You will love your child no matter what.
Your child will impress you beyond belief.
You will wonder why you ever worried. :)

And that's something to smile about!


Nicole said...

Very sweet! He will forever be in my mind as the little man in the NICU wearing sunglasses, with his hands behind his head (looks like Hunter took that move over). I actually think it was a year ago today. Geez...time flies and I am so happy to have these memories with you

Reina said...

Thank you so much for that. I have a seizure disorder when I am pregnant and one of the things that the meds I am on is it can cause a cleft palate. I am always very fearful and worried. Your post helped to calm my fears and now I will have to see what the sono says at the end of the month but with your info I am sure whatever the outcome it will be just fin!
Again thank you. You once again brought tears to my eyes

Anabelle said...

His smile will melt anyone's heart. He is so sweet and happy. I just love all your kiddos!

Amy Burditt said...

Well said...I agree whole heartedly. This takes me down memory lane with my Brandon and our quite similar experiences. I have had my share of ignorant remarks from people as well, but most people have been very supportive and I agree that your attitude towards your child makes a difference as to how they will feel about themselves and others will feel about your child. Hugs to you all.

Mary said...

I remember when you told us about his cleft lip/palate it was like you were telling us he had blue eyes...no worries, not stressed (at least not to us.) You are definitely his rock, his advocate!

Marci said...

You articulate the situation so well. I have always wanted to write down my thoughts and feelings about when I found out that Eli was going to be born with a cleft lip but, I couldn't quite figure out a good way to put them on paper. Did Mary tell you about my little "panic moment" when Eli saw other children on TV who never had the opportunity to have their cleft lips repaired?? I wondered if you had any advice on what to say when that situation presents itself. I had never really thought about it since we don't really think about Eli having a cleft lip all that often anymore. I mean, it comes up and we always talk about it but like you say, it really isn't a big deal.

Anonymous said...

What a beautiful child! And congrats on winning that blog award! Like you said, it's definitely hard to find information about cleft lips/palates that isn't technical and clinical. Also, your blog has such a personalized approach, that I'm sure it has been quite helpful for many other families going through the same thing to know they aren't alone.

As a blogger, you're definitely a leader. Between great information like this and cleft palate foundations like Operation Smile, you're all making the world a little better for us all!

Anonymous said...

This is sweet i have a cleft lip and palate also and i had an amazing doctor i am 18 and not many people can tell i was born with it :) the only thing i would like to warn your is when he goes to school he may get made fun of cause i did a lot eventually it will stop once the kids mature but some remarks can be hurtful i was never angry abt being born with this i actually like being different in this way....my little brother has it and i am giving him advice all the time about the bullying espeacially.

Anonymous said...

I know that I am truly blessed to be honored by your sage advice, and the comfort and wisdom of your pen to these pages. May your children remain a blessing in your life and you in theirs for all the years to come!

Sheila - Columbus Ohio

Anonymous said...

I am sooooooo glad to see this child in that beautiful smiling picture ... :) wish you all the best take care and god bless you :)

Anonymous said...
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Melfromcali said...

Thank you for your story it made me feel so good to read it. Iam having a baby boy with a cleft lip and pallet on the right side we found out when i was 25 weeks pregnant my fiance took it hard. our son is due in 6 weeks. We are anxious and excited!! You have put alot of my fears at ease. Thank you for your story

Chels said...

I just want to tell you how much i love your blog, and how much it's helped me come to terms with our baby just being diagnosed with cleft lip, we dont know yet if the pallet is involved but your blog has helped me to realize either way i can handle it, and either way he will be loved unconditionally...Thank you for sharing! I've learned so much that will help me when it comes to my own child...thank you for sharing your knowledge and experience!

Anonymous said...

I just found out that my baby has a cleft palate and a right sided cleft lip. You actually put a smile on my face and brought light to this for me, thankyou so much. im havimg a hard time with one thing, and that is umderstanding how this happened. This doesnt run in my family or my boyfriends. im 20 years old in a couple days, and perfectly healthy. I wish I had an answer. But,even though we found out yesterday morning, ive started to accept it. I think it was just meant to happen. We have a lot of love to give this baby, and that will never change.

A Little Bit of Love said...

Glad i stumbled upon your blog, we found out at our 20 week appointment that our son has a unilateral cleft lip and palete. Your blog both informed me and made me feel better:)

Angela Manus said...

I recently gave birth to a sweet baby girl who was born with the same birth defect as your Colton. Your blog calmed my fears. Thank you!

julie Cwir said...

Hi. great story! Colton is so cute! We would love your story in our book of cleft stories we're compiling. check out www.iwishidknown.yolasite.com

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