My heart hurts

I used to have so much to say.

Triplets, Preemies, NICUs, Cranial Bands, Cleft Lips, Cleft Palates….Yep, once upon a time this blog was a stepping stone for others walking our same path in life; a stepping stone for others facing the same challenges. It almost feels strange that the days of shelling out my "learned wisdom" about these topics have come and gone. It's like we've reached an age and a place in life where we're just….normal.

There's a lot of happy in that, I suppose. It IS sort of freeing not to be an 'expert' on these things anymore, because I HAVE actually forgotten how to efficiently fill 18 bottles a day or how the valves and pieces fit in Colton's Habermann Bottle. And I literally don't remember how often I washed their helmets. I don't. 

You might even say I've become complacent with this 'uneventful' life of mine.

Until tonight.

Tonight I was painfully reminded that our story is not over…and that my job as a mother will forever be a million times harder than teaching could ever be. 

I have 3 kids. They grew together, were born together, and are raised together. They are triplets and there's a lot of 'sameness' that goes with that.

But the reality is that one is different. (Yes, my intellectual self knows and appreciates that  they are ALL different, but one feels it a little more than the others.) He feels it in ways they can't yet comprehend. And I would literally take back every insecurity and every flaw I've ever had about myself (and there are a lot) to take this away from my Colton.

We were just sitting around the dinner table having homemade banana splits, partaking in our usual line of "how was your day" questioning. It begins with whoever thinks to ask first; tonight that was Ethan.

"Hunter, how was your day?" 

"And what was your favorite part?" 

"And what was your worst part?"

She, in turn, asks Colton the same questions.

If we're keeping track, he had a good day. His favorite part was painting birdhouses and eating ice cream. And if I'm being honest, he had a hard time thinking of a worst part.

But before he moved on, he very abruptly lifted up his upper lip, exposing his top teeth. Ever so innocently, he asks, "Mom, do my teeth still look funny? Are they still crooked?"

Trying not to appear flustered, I very 'breezily' said, "Well let me see. Um, yep. They're still a little bit crooked, but they still look really good to me. Why?"

"Because 'B' {his best friend} makes fun of my teeth sometimes. He says they look funny."

And just like that- it happened. He realized he's different.

If I were a superhero, my powers would be remaining calm and collected when all I want to do is fall apart.

I shot a look at Brian basically pleading in silence for him to say something because I wasn't sure I could, without crying. I needed a second to compose myself.

"Hey bud, your teeth are a little bit different right now, but pretty soon, they'll be all fixed up. Don't you worry about what other people say about them, okay? Everybody's a little bit different from each other and what's important is that you know how special and handsome you are." 

This bit of saving advice gave me enough time to well away the tears and interject my own wisdom.

"Colton, here's the thing. You're actually kind of a superhero, you know. You're only 5 years old and you've already had 3 surgeries! (I'm including his ear tubes) What other kid can say that? 'B' can't say that! Nobody I know is as tough as you are. When you were born, you had a hole in the roof of your mouth and Dr. Hurst fixed you all up! He fixed your lip and your palate (brief intermission here to explain what his palate is) and pretty soon, he's going to fix your teeth too!"  {And breathe….}

"But why was I born with a hole in my mouth?" (Said in a tone that showed more concern with the why HIM part than the hole in the mouth part.)

Again. time felt as if it had slowed almost to a stop. His eyes and his little self were waiting for an answer. And I wasn't sure I had a good one.

"Buddy, I don't know why. Maybe because God knew you were tough enough and brave enough to  handle it. 

Not entirely sure he was convinced, he at least allowed Brian and I to sprinkle our hopeless bits of wisdom upon him and the other two. We went back and forth with all the things you're supposed to say when your kids are feeling hurt; all the things you tell kids about tolerance and acceptance and treating everyone with kindness even when they look different. We talked about how Hunter's eyes didn't work so well and she needed to have glasses, etc.

And in case you're wondering what his demeanor was this whole time, you could almost say he was  unphased. And yet, he was thinking about it. He thinks about it. Something in that moment made him ask about it.

But just like that, the game moved on.

Colton looked over at me and asked, "Mom, how was your day?" 

I smiled and said, "It was a good day." 

"What was your favorite part?" he asked next.  "Um, watching you play outside and having ice cream with you."

And I knew it was coming…..

"And what was your worst part?" he asked.

{what to say, what to say…}

"Right now." I said. "Hearing that you feel a little sad about your teeth hurts my heart." 

The game continued until everyone had had a turn and almost as abruptly as it began, they were asking to be excused from the table. I've never been so eager to let them leave. Brian sent them upstairs to get ready for bed and I just sat, my back to everyone.

And I cried. Silent,  guilty, hopeless tears. And Brian knew. He sat down beside me and said all the things you're supposed to say when your wife falls apart.

I can never shake the guilt that he's a triplet and yet, he's the only one who has to deal with this crap. I can never shake the guilt that perhaps something I did or didn't do during the pregnancy caused his cleft lip and palate. I can never shake the guilt that I can be there for him forever and I can fuddle my words left and right when he needs a pep talk, but I can never take it away. I can't take away the surgeries and the pain that are yet to come.

Amidst my sobs, Brian so eloquently reminded me that maybe I was looking at it from the wrong perspective; he reminded me that Colton is going to lead the way, that he's going to shape someone else. He's going to teach someone about tolerance; and through it all he'll have his brother and sister to have his back. Maybe THAT's why he's a triplet.

Sometimes I like it when he's right.

Colton,

My wish as your mother is that you will realize the strength you have. That you will be courageous enough to stand tall when you're feeling down or when you're feeling different. My hope is that you will continue to rise above it and that you'll be able to see the handsome young man we all see. That you will find comfort in knowing that you're never alone. You are my hero. And you have been for almost 6 years now. I love you bud.

Now THIS is love. 

[Side note- I wanted to add to this story that neither Colton nor any of us are upset with his friend, nor do I think his friend even meant it harshly. I am pretty confident the whole conversation was spurred more by a 5 year old's curiosity than intent to be mean. Kids are just honest. Sometimes too much. ]  :) 

A new smile to love, and another we'll never forget...

Most of you probably know me by now, but if you don't, read on. My name is Colton Bunch. I am 3 months and 1 week old. I am a triplet. I am the oldest. I am the big brother. when I was still growing in mom's tummy, they found out that my lip did not look like my brother and sister's. I heard them say I had a cleft lip. I wondered if that would mean they wouldn't love me as much, but it didn't. In fact, I think it made everyone love me more. I love my smile, but sometimes I get sad that I can't keep a pacifier in my mouth like Ethan and Hunter. Or that I spit up a lot more of my food and it comes out of my nose and mouth. So I was kind of excited when mom and dad told me I was going to get a new smile. I was also a little scared, I mean, I am only a baby you know. So this past Tuesday, June 30th, I got a new look...I hope you like it. :) My mom will tell you the rest...
Again, most of you probably know ME by now too...probably far too much about me! But if you've just come across our blog, then here's the rest of our story. My name is Ami. My husband's name is Brian. We are the proud parents of 3 month old triplets, Colton, Ethan and Hunter. This story, however is about our first born baby boy, Colton. As he just told you, he was born with a bilateral cleft lip and palate. We knew about it before he was born, but never knew just how much his smile would melt our hearts and everyone's around him. Just look at his silly grin and you can't help but smile back. Colton and I had a strong bond from the very start. Probably because the mother instinct in me drove me to feel that I had to "protect" my little boy from the cruelty of the world. Before he was even born, we were anxious to get his smile corrected, but after he was born, that sort of changed...the more we got to know THIS little face, the sadder we became as his surgery date neared. But I was a kindergarten teacher for too long, and know all too well how harsh kids can be to one another. Deep down, I knew that fixing his lip was the right thing to do-for HIM and the rest of HIS life.

So this past Tuesday became a very BIG day for a very little boy....



The Friday before surgery, we took Colton to UMC for his Pre-Anesthesioloy appt. Here, we basically filled out all insurance paperwork and signed consent forms. Colton never even opened his eyes....

Here's mommy and her Baby Boy...

And Daddy and his little man...

This is the smile we had fallen in love with....

So with mixed emotions, on Tuesday morning, Aunt Mary and I packed up the little man, said goodbye to my other 2 babies and gramma and headed for UMC. Unfortunately, Brian had to be out of town for work, so he was unable to be here until later this night. Here, we are waiting to be called into the Pre-Op room.
Aunt Mary and her favorite Nephew. (Don't worry, she tells Ethan the same thing)

After not a terribly long wait, Colton was called into the Pre-op room where I answered questions about his health background for what felt like the tenth time to the the tenth different person. Colton was quite taken with his "Big Boy Crib." Never mind that it looks a bit like a baby jail cell...

I'll be honest, at this point, I am not nervous for the procedure itself, but only thinking ahead to the pain my little boy was about to be in and the struggle I would feel because I wouldn't be able to make him understand why....

You'll notice his awesome hospital gown...intended for a small child. Not a small baby. But he pulled it off. :)

Aunt Mary and Colton. Seriously. He's wearing a dress!

Fortunately, for my own well-being, Colton was in a great mood this morning. He was cooing, smiling and giggling at all the nurses.

How can you not love this goofy smile...

As we got closer to surgery time, the anesthesiologist and surgeon came in to talk with us about the procedure one last time. So look closely at the picture below....does he look familiar?? Think back to my C-Section. Yup! My friend, Tony (Dr. Lucas) came through for me again and was able to schedule himself to do Colton's anesthesiology! Thank you Tony...you will probably never know how grateful I am to you....

And this is the Surgeon who would forever change the grin that greeted me every morning in his crib, so happy to start a new day. This is Dr. Craig Hurst.

As you can see, Colton knows who to be afraid of... :)

"Don't worry baby boy. Mama will be waiting for you as soon as it's over. Don't be afraid little buddy."

And this would be the last time I ever saw that sweet smile...

It's a very strange feeling to hand your baby off to people he doesn't even know. Luckily for me, my friend Tony took Colton and carried him to the Operating Room. That helped mine and Mary's peace of mind tremendously, knowing that Tony was in there every minute, taking care of my baby.

And then the wait began....Dr. Hurst sort of estimated that it would take about 2 and half hours to complete the surgery, so that's kind of what Mary and I were going off of. So we waited out on the patio as the first hour passed, then the 2nd, then the 3rd and then the 4th hour....I will admit, I was a bit afraid of why the surgery was taking so long. But finally, we saw Dr. Hurst coming towards us on the patio to let us know how it went.

You know how you try to read a person's face before any words even leave their mouth? Well Dr. Hurst's was hard to read. "Is this bad?" I wonder. But, he said it went well. Didn't start on time (that explains one of the hours) because they had some difficulty getting Colton to sleep. (My POOR BABY!) But eventually they did, and the surgery went beautifully. Thus began our next wait....seeing him in the recovery room.

Tony came out and got us and took us into the recovery room. Walking into that room, filled with bed after bed, patient after patient, my mind raced wondering what I was about to see. As we approached Colton's cubicle, I heard his signature cry tainted with a bit of scratchiness from being intubated throughout surgery. All I could think was "I'm coming baby! Mama's coming." And no sooner than we walked into his "room", did his nurse, Eva, hand him to me, clearly having been unsuccessful herself at consoling him.

This is what I saw.

An absolutely miraculously done surgery, but a face I honestly did not recognize. I knew it was my baby, but his signature smile was gone. And he was in real pain.

Let me say this. Consider yourself lucky if you have never had to watch your own child, a baby in particular, go through something so traumatic. Remember tough me? The one who loves shark attacks and military shows? Well I take it back. When I saw him, I did not feel one ounce of tough. I felt absoutely miserable. All I could do was hold him, talk to him, let him hear my voice and tell him he'd be okay, even though I wasn't sure I believed that myself. He looked so pathetic. His cheeks were beginning to swell, the sutures keeping his lip together were tainted with blood and the tubes in his nose to keep his nasal passages open were straining his ability to take deep breaths. It was all I could do not to cry.

But this was a new role for me. I couldn't fall apart because I had to be there for my son. He needed me to smile at him and tell him how handsome he looked. Everyone says "don't worry, he'll never remember this." The problem though, is that I'll never forget. My sweet Colton, you are every bit as beautiful as you were the day you were born. You are a tough little man, much tougher than you should have to be...I am so proud of you.

Grampa and Aunt Mary, I know, felt every bit as anguished as I did that we could not console Colton or help him understand where he was and why he was hurting so much. Again, all we could do was talk to him and let him hear as many familiar voices as we could.

Not terribly long after, his wonderful nurse, Eva, told me they had his room ready on the 3rd floor, (the Pediatrics Unit.) She also told me that several of the nurses remembered Colton from his short stay in that unit just before he came home from the NICU. That actually made me feel better too knowing he was going back to a place he had already been. At this point, any bit of familiarity or comfort for Colton would do my heart good.

So Eva, Anthony, Colton and I headed off to 3W, the Pediatrics Unit.

And that began the longest night of my life. It was hard enough watching the poor little thing scream in pain, but add to that the fact that I had to try feeding him immediately using his special bottle. Oh my god...the anxiety I felt having to force a bottle into a very sore, swollen little mouth was enough to put me over the edge! But again. That's my job. This chair became our home away from home. We spent most of our time right here in this chair.
Later that night, Brian arrived from Phoenix and experienced the same bit of shock that I did upon seeing his little man, completely changed, for the first time. But also every bit as impressed at what an amazing job Dr. Hurst and the team did.

Also later that night, Aunt Mary traded roles with Gramma so that Gramma could steal away from Ethan and Hunter to come visit little Colton and sing to him. :)

It's been said many times now, how much Colton resembles Ethan now. Which stands to reason really. They are brothers, triplets at that. When he's all healed, I'll put up some comparison pictures of the two.

Well, because we wanted to maintain some normalcy for Ethan and Hunter, Brian decided to go home that night and take care of the other two munchkins while I would stay at the hospital and take care of the littlest patient. Let me just say, that may have been the hardest night of my life. Just when Colton would fall asleep, he would need to be awakened for pain medicine or vital sign checks or to attempt to eat, and would therefore scream in pain again. This cycle continued the whole night.

And there I sat, rocking my sweet boy just as best as I could while he cried. I became increasingly grateful for the constant beeps and blips of his heart monitors all night becase they helped cover the sound of my own crying that ensued each time Colton would drift back to sleep. I have never wanted a night to end so bad in my life. His nurses that day and night, Daria and Amy, were angels wearing scrubs. They had both been his nurses before when he stayed there after the NICU, and they both remembered him. I'm sure they could tell how upset I was and were therefore even more loving towards my little boy themselves. Some people are simply meant for careers like that and Daria and Amy are two of them. And though she wasn't his nurse this time, Laura came in to visit with us and Colton too. She had actually been his nurse one day while he in the NICU. Each one of them in their own way, made it easier to be there.

Somehow, morning finally came and I waited anxiously for Brian to get to the hospital. I just needed someone else there to bear some of the heaviness of Colton's care. Don't get me wrong, I did not want to give up my little boy to anyone, (and I really only let Brian hold him a few times probably!) but I needed support. Someone else to tell Colton he'd be okay and to take that burden off of me for just a few minutes. .

Those who know him, can probably see some of Ethan in these pictures of Colton's new face.

Here I am in frustration, confirming for poor nurse Daria, that Colton still had not eaten.

Little by little Colton began to eat again. We ended up having to entice him into eating by mixing his formula with Apple flavored Pedialyte. Worked like a charm, though his appetite just simply wasn't his usual. And what do you expect?

And here may be evidence of the worst part of the whole thing....notice Colton's elbow splints. He has to wear these, made of velcro and hard, pliable plastic on his arms to prevent him from messing with his sutures and nasal tubes. Poor baby can't even put his arms down by his sides.

I like to think he's saying, "Mommy, I love you THIS much!"

There's Dad, hanging out.

And here I go again, trying to feed Colton.

This is a card that Gramma helped Ethan and Hunter make for their big brother. Colton was happy to see their faces. He missed them and so did I.

After a little uncertainty about whether or not Colton was going to be able to go home that night, we got the word! He was free. Though I would need to really work hard to get him to keep eating.

"Goodbye Nurse Daria! Thank you for taking such good care of me! I'll see you at the new building for my palate surgery!"

Does this hallway look familiar?

Baby Boy, we're goin' home!

This picture is 2 days post-op. The swelling, believe it or not, has gone down tremendously, but the bruising has only begun to worsen.

Those who knew Colton before will feel the same sense of amazement that we did at how absolutely different he looks.

Ethan wanted Colton to know he was there for him, so he wore the elbow splints as a show of solidarity!

Home once again, Aunt Mary is there to rock me while I get better....
And I'm here to work on my new smile.

So though I do not have even MORE recent post-op surgery pictures up here yet, I'll say this. I had no idea how much pent up anxiety I still felt for my poor little man, until tonight. I was sitting on the floor watching Colton in his bouncy seat, just talking to him, telling him how much I loved him. And somehow, through sutures, tubes and bruises, he honestly forced a smile. And all I could do was cry. And he did it again and I cried some more. Brian confirmed that I was not imagining it :) and said to Colton, "Thank you buddy. You just did your mom's heart good."

And he sure did.