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Posts about Colton's Cleft Lip and Palate surgeries as well as the Triplets' Cranial Bands are along the sidebar.

Wednesday, May 12, 2010

When time stands still...

Have you ever had that moment where you feel as if you are standing perfectly still and everyone and everything is moving around you? I'm pretty sure I've seen it in a movie...some guy is standing in the middle of Grand Central Station, motionless, as people whiz past him in both directions in an almost blurring fashion. I was that guy in the train station this week....

This is my account of what of what became a "not-so-routine" routine surgery...I am certain I have mixed up some of the details because frankly, the whole experience was very surreal and I'm not really sure where my head was the whole time, but, you'll get the idea. And I'd like to say up front that I appreciate the staff (patient care techs, nurses, doctors, etc.) who had a part in keeping Colton safe. It's long, so you may want to come back if you've got pasta cooking on the stove. And if you're like me, you may want to grab a kleenex.
As I write this, it's been 9 days since the moment we handed our Squishy Boy over to the doctors to repair his cleft palate, a surgery that would undoubtedly improve his quality of life. 9 days, and I still can't stop playing it over in my head. I'll be honest, it's taken me 9 days to write this, not because I've been neglecting it, but because I'm simply not sure which words to use..But I'll write it anyway, and I'll post it, because today, I am remembering where I was exactly one week ago, and how our lives were rocked to the core. I want you to understand what you were praying for that night. I want you to know why we all cry when we try to put this night in words. I want you to feel with me how fragile life is...and then I want you to snuggle your little ones AND your big ones a little longer tonight. Because life is short and it can change in a heartbeat....

This would be Colton's second surgery in his short life. As much as I had been dreading it since the moment his first surgery ended 10 1/2 months ago, we were ready. Game plan set....Bags packed, house relatively clean for our arrival back home in 2 days, Piper, Ethan and Hunter spending the night at Gramma's house, so Baby Colton was all ours. My dad said it the morning of surgery as he watched Colton drive his new truck on our living room carpet while we readied the last few things, "Ignorance is bliss" he said, and he was right. The fact that Colton did not know what was about to happen to him was frankly the only consolation I could find in this situation. As we headed out the door, I tucked away safely in my pocket, the St. Christopher Medal my dad wore for 42 years. He had given it to Colton that morning as an extra measure of protection as he ventured into this next surgery...( a bit of irony, as I see it now) And then, Brian and I drove Colton to UMC where we waited no more than 5 minutes before we were brought back to Pre-Op where we would get Colton into his gown, take his vitals, review his medical history, and then wait. Colton was in a great mood which, for Brian and me, was very relieving.

Waiting Room


Pre-Op..checking out my bed!

When did he start looking like a little boy?
Bubbles are the best!



Colton and Lauren (she's a Child Life Specialist. She entertained him with lots of fun things so he would not be scared)
Brian, Colton and Me

How I love that smile..

Like Father, Like Son :)
Aren't feet great?

Checking the wheels on the stroller..
Dr. Hurst and Colton
It was a beautiful day out, sun shining, but not too hot, so we sat out on the outdoor patio and read magazines, wrote thank you notes and sipped our coffee and chai tea while they worked on our baby boy. Everything felt right. Unlike the first surgery, where the wait felt like an eternity, (Just ask my sister, Mary) this time, the wait actually seemed to pass rather quickly, which was bliss, I tell you. We'd gotten 2 calls during the surgery from OR nurses or doctors assuring us that Colton was doing great. And before we knew it, Dr. Hurst was greeting us with the great news of a beautifully constructed new palate and granting us the pleasure of going to see our boy.

And so, through the same set of double doors I passed through almost a year ago, following the same black and yellow lines on the floor, I found my sweet boy in the exact same cubicle I found him following his first surgery. That moment...oh that moment. All at once, it's one I'd been waiting for, and one I desperately wished I could avoid. Because the minute I'd see him, I knew I wouldn't be able to walk away, I would not be able to leave him, I would not be able to look away no matter how much pain he was in and how much my heart ached for him. I prepared for it...that moment where being a mother becomes the most important job in the world.

Finding him after his first surgery was worse in a lot of ways...his face was visibly sore then- blood-stained sutures lined his lip, nose tubes filled his tiny nostrils and a very puffy face told his mama how much pain he was in....He almost didn't look like himself. And yet, the minute he opened his eyes and cried, I knew he was mine. The same little boy....But this time...this time, he actually looked like himself....only sadder. His cries of pain were something akin to an injured wild animal, the kind that kick you in the gut mostly because there's nothing you can do but hold him tighter. His cries were unrelenting. With each whimper, I leaned closer to my little boy and whispered familiar things to him, told him about everyone who was thinking about him, told him how Gramma and Hunter and Ethan couldn't wait to see their Colton again, told him how his Nana and Papa and Aunt Kristen were coming to visit him later in the week, I sung familiar songs to him and whispered the story of how he came to be my first born baby. That's usually all it takes to soothe him-A mommy snuggle, calming whispers, the comforting sound of daddy's strong voice, and a little rocking. But this time it wasn't working.

In fact, nothing that worked the first time was working...he wouldn't take a bottle, he wouldn't take a sippy cup, and even holding an oxygen mask to his mouth was not enough to prevent his pulse ox from dipping dangerously low. We finally switched to a nasal canula to provide closer contact oxygen for him to inhale and still, the cries. Oh, the cries. My poor little boy could not be soothed. His nurse even put on the children's radio station, Pandora, to attempt to soothe him. All I could do was rock him, and beg for him to just open his big blueberry eyes so he could see his mama and daddy right there with him. But his eyes only opened once or twice and for fleeting moments only. Hours passed and his gaze never met ours.

His PACU (Post Anesthesiology Care Unit) nurse, god bless her, was as concerned about Colton as we were. A mother herself, she did not want him to be in pain. So, with the consent of the doctors, she gave Colton more morphine, in small doses, over the next few hours. And still, he cried. Go ahead, take a deep breath now. That's what I did. That's all I could do. After his first surgery, he took a bottle and calmed down, enough so, that I felt comfortable enough to lay him on his hospital bed so he could rest. But this time, since he only truly calmed down for short stints, I just held him. Once or twice I offered to let Brian hold him, but he knows me well enough to know that I didn't really want to give him up, and I love him for letting me be a baby hog. :)

He was given morphine a few more times, and even Tylenol with Codeine once, at which point his body finally relaxed and his pulse ox stabilized.

Dr. Paidy, (the Anesthesiologist) and Christa, our nurse
Once Colton was stable, we were transferred to the Pediatric Floor of the BRAND NEW Diamond Children's Medical Center, Room 5112! Woo hoo! Private rooms, full bathroom with shower, a couch that folds out to a double bed and the best part...beautifully painted NON-WHITE walls. So much less sterile than your typical hospital room...what a treat! The children's hospital was amazing. I almost felt guilty enjoying the room as much as I did what with Colton as miserable as he was. And so, I continued to hold him, trying to simulate a rocking action since the new room did not come equipped with a rocking chair. (It's only fault, as far as I could see!)


The nature of his surgery was one that left our baby struggling to swallow, drink, and even take good deep breaths. The roof of his mouth was raw, the drainage was collecting at the back of his throat and for the first time in his life, his nose was congested. He still had not recognized my gaze which was mildly disconcerting for me, but I was just glad he'd become comfortable enough to sleep. He'd been given even more morphine when we arrived at the pediatric floor to help with his constant whimper that resembled a very sad little "ohhh." Unfortunately, his breathing became more and more of a struggle and the gurgly rattle at the back of his throat made it audibly clear how much work he was having to do to breathe.

At this point my sister and my dad had come to visit, no doubt hoping to see Colton's little eyes open too, particularly since it had been hours since his surgery had ended. Even they could see the tug at his throat signaling his distressed respiration. Now, here's the thing-doctors and nurses have lots of tricks in their bags, however, suggestions of suctioning his throat were met with reminders that anything being in Colton's mouth or nose was not an option due to the nature and delicacy of his surgery (palatoplasty). So a breathing treatment was the only other way to hopefully open his airways a bit. And that would really only help if his airways were inflamed, which nobody really knew.
A few minutes later, the respiratory technicians rolled in their machines and placed the mask close to his face while they gave him his treatment. I continued to hold him, his head resting comfortably in the crook of my left arm, his diapered body lying limply across my lap, feet tangled in IV tubes and wire leads. And I watched, we all watched, to see if he would respond to the treatment.


He seemed very aware of something blowing in his face, but his eyes, which looked like the glassy eyes of the porcelain dolls I collected when I was younger, still were not the eyes I had been hoping to see all day. He suddenly looked extremely uncomfortable, lifeless almost. Brian, my sister and dad had noted that his face looked pale, even. I continued holding him through the treatment, which hadn't progressed very far, when Colton opened his eyes briefly and looked in my direction, almost as if to say, "Mama something's wrong." Looking at those glassy eyes with much smaller than usual pupils, gave me an uneasy feeling I desperately wish I could forget. And at almost that same moment, looking on from behind, my family asked out loud a question we all knew the answer to, "is he shaking?" And as I held my baby boy in my arms, his head tilted back and his arms and legs started to twitch. And there in my arms, he had a seizure.

As quick as I knew what was happening, the respiratory tech grabbed him from me and placed him on the bed and pushed that little red button that sends doctors and nurses running. One minute we were rocking quietly...the next minute, I am holding my son's head and upper torso while the doctor assesses him and the severity of the seizure. It had continued for about a minute. A minute that felt like an eternity.

No pictures were obviously taken during it...but this is right after. That's my sister and my dad. My mom is home with my other 2 loves. Brian's family was still in Phx, praying hard!
There was so much activity happening and so quickly, I'm not really sure what I actually did once I was relieved of my job holding up his head on his bed. I remember feeling like I was in a dream and I also recall thinking to myself, "this is a hospital, they have to overreact. It's not really that bad." I think I even questioned whether it really was a seizure, to myself. I recall sitting back on our "simulated rocking chair" while Mary, my dad and Brian huddled around Colton. I know the doctors and nurses were saying very important things to us, and I'm pretty certain I probably nodded my head and said, "uh huh, uh huh..." as though I were actually listening and even understanding what they were saying to me. But it was all a blur. What I do recall is the Attending Doctor, who, in my opinion probably saved Colton's life, saying to me, "I hate to be a doctor standing before you telling you that your son just had a seizure and we don't know why. But the truth is, a post palatoplasty patient with no history of seizures shouldn't be having seizures and so, we don't know why he did. But we're going to find out."

And in the midst of it all, there was my little boy, who deserved none of this, lying motionless in a bed that made him look even smaller than usual. No polka dot crib sheets, no fuzzy bunny, just stark white sheets. As if it was going to somehow make him feel better, we draped him with his blue fleece blanket with his name embroidered at the bottom. A small piece of "normal" in what was rapidly becoming a very abnormal day. I was feeling very guilty that I had told Colton everything would be just fine, and now this had happened. It was all very confusing. The possibility of brain damage was being discussed, though optimistically hoping that his brain had not seized long enough to have caused that.

His nurses

Aunt Mary...whom I owe a gigantic thank you to...She loves Colton as much as I do, I think. And I know her heart hurt every bit as much as mine. She went out of her way to be there for Colton and for us- Coming to visit and then forcing me out of the room to either get some fresh air or to make sure we ate! Later, when he would get transferred to the PICU, she held his oxygen mask to his face for I don't even know how long...she did not want the elastic to bother his ears and cheeks...now that's love. Thank you, Aunt Mary, for being you...
Staring at my little boy...wondering if that really just happened


The doctor explained that it was unlikely he would have another seizure, but that if he did, he would have to be transferred to the Pediatric Intensive Care Unit (the PICU). The commotion ceased after about a half hour, and then, the room returned to a much quieter state...Brian and I, my sister and my dad hovered near his bed, taking in everything that had just happened. It was during this time that we were able to make a few phone calls to my mom and Brian's family to let them know what had happened. Approximately a half hour had passed since the seizure. The room was quiet. And then, to all of our horror, sweet Baby Colton began to shake again..

I ran outside his room and yelled to the Attending Doctor that "I thought he was seizing again." (I distinctly remember saying "I thought" because I was really hoping she'd go in there and tell me he was just shivering because he was cold. I desperately wanted to be wrong. I wanted her to laugh at me and tell me I was just a nervous mom.) But I was not. For some unknown reason Colton was having another seizure-this one longer than the first.

This is where my details get blurry. There remains in fact, some unclarity as to whether or not there were 2 or 3 seizures. I remember very distinct things happening but in the days that followed, I still have not been able to piece them all together in the right order. As an untrained onlooker, I would've said there were 2, but the doctor, based on eye activity has declared 3 seizures, so where the 2nd one ended and third began is largely unclear to me.

The doctor hung up the phone that instant and ran in to Colton's bedside. She laid him out on the bed where I recall hearing her say things like, "check his eyelids" and "c'mon buddy"...This is a very family centered hospital and because I half expected them to usher us out of the room, I appreciated that they did not. As much shock as I was in that he was having another seizure, I very much assumed that it would end as calmly as the first one did.

But as we all stood there watching my baby's body wretch from the seizure, the pace in the room suddenly seemed to increase. Nurses and doctors surrounded him as did my family and I, wanting desperately to be close to Colton when this all ended, but wanting to give the doctors enough room to do what they needed to do.

At some point, I stopped understanding what was happening. It was about this moment when I became that guy in the train station, unable to move, despite the dozens of people moving around me.

I still consider myself a new mom. A very lucky mom of three healthy babies. I do earaches and throw up and cuts and cat scratches. I am very easy going. Maybe too easy going. My sister would call me a "free-range mom". I do not freak out easily, I do not scare easily, I do not cry easily. I do not wear my heart on my sleeve. I am a very tough mom.

I was abruptly shaken from my daze when I hear the doctor yelling "Can you make him angry? Make him mad!" Was she talking to me? Make him angry?? Everything in me wants to do the opposite. I want to hold him close to me and stroke his fuzzy hair, but right now, she needed to do anything she could to get Colton to respond and snap out his seizure like state. And so, with every ounce of what might as was well be maternal love for that child, my sister stepped right up and did it for me. Didn't think twice. Did whatever she could to get my baby, her nephew, to respond. "Check his eyelids" I hear the doctor say in a very calm, but very matter-of-fact way.

Standing near the foot of his bed, the nurse and doctor to my left, my sister and dad are close to his bed and I vaguely remember Brian standing behind me, assuring me that our baby was going to be just fine. It was then that I hear the phrase I can't get out of my head...I hear the nurse (or maybe even a resident doctor) ask, "Do you want to me call STAT or CODE?" And without one second lapsing, the doctor responds with "I want you to call CODE. He's not breathing."

He's not breathing....He's not breathing....Internally I'm pretty sure now is when I started to panic. Oh my god... That's my baby... My funny Colton who claps and winks and crawls like a maniac. Colton, who hours earlier was blowing bubbles in the pre-op room, fixing the wheels on his stroller. That's my baby... My baby... the one I have been fiercely protective of since the moment I learned he would be born with a cleft lip and palate. Give him a ball to play with.... He wants to play peekaboo with someone.... This isn't happening... He's only here for surgery.... Someone cover him, he's cold.... Hold him....No, let me hold him. Please don't hurt him... Does he know I'm right here? We're all right here? He must be so scared.... He doesn't know where he is.

This is just a few of the 23 people in the room...THe doctor who, in my opinion was Colton's savior that day is to the left, in the white shirt,wearing glasses.
These are just a few of the million thoughts I was having, as the room filled with doctors, nurses, anesthesiologists, practically the entire night staff from the Pediatric Intensive Care Unit. At one point, I counted 23 people in the room.

"We can't intubate him. He's post palatoplasty. Bag him!" (In other words, under normal circumstances, they would've inserted a tube down his throat to help him breathe, but there were strict orders not to put anything in his nose or mouth.) And then they started to breathe for him. I was far enough away not to be in the way, but close enough to see my baby's pale chest rise and fall with every pump of that bag. Again, I'm not sure what order these things happened exactly, but at some point, he was given a dose of Ativan to help control the seizure. I believe it was then determined that between the anesthesia, the morphine the Tylenol and the Ativan, he was too pumped up on heavy narcotics which was contributing somehow to the seizures and the fact that he'd coded.
Time was standing still. My baby isn't breathing...This is not supposed to be happening.... Hot tears were streaming down my face as I continued this silent struggle about whether to stay in the room and watch my son potentially die or be left brain dead, or leave the room and forever regret that I abandoned him at the moment he needed me most. How would we make that phone call and what would we say? How would I tell Ethan and Hunter? They wouldn't understand why their brother didn't come home. What would I do with only 2 babies?

I can't tell you how many times I heard people say, "if this was going to happen, know that he's in the right place." If this was going to happen?? No. This SHOULDN'T be happening!" People were asking if I wanted them to call anyone and if I wanted the hospital chaplain to come in.No. No. and No. I do NOT want you to call anyone and I do not want the chaplain there, because those are things you do when someone is dying." So no. Just leave me be, I just want to hold my baby. I'm so sorry this is happening to you Colton. I told you you'd be just fine and now this is happening to you. All the while, I clutched the St. Christopher medal deep inside my pocket. "Protect Me," it says.

At some point, when Colton still had not become responsive, it was determined that they needed to get every narcotic out of his body because they were preventing him from breathing normally. Thus, he was given a drug called Narcan. As they administer this, they are good enough to explain why they are doing it and what effect it will have. "Essentially, this drug will reverse the effects of all of his pain meds." So what you're saying is, my child, whose mouth and nose are riddled with raw skin and sutures, and whose body just withstood 3 seizures is going to now feel every bit of pain? Oh my god.... Please, no....

But it was the only way. And moments after he was given that drug, he began to cry. A sound so blessed and so horrible all at the same time. Everyone in the room was assuring us that crying is a good sound. But you're not his mother. That is MY child who is crying because he is surrounded by 2o faces he doesn't know, has a mask over his face, is being poked with needles and hurts. God, I can't even imagine how he must've hurt. My eyes burned from the salty tears that had been streaming down my face. I have no idea what my sister and my dad were doing in all this. I vaguely even remember seeing them throughout the ordeal. Brian stayed near me, holding on to me, assuring me once again, that Colton was going to be okay.

It's hard to be an outsider when things like this happen. We don't understand medical jargon, we don't know what they're doing. But I'll say this- perhaps it's because it's a teaching hospital or maybe it's just their philosophy, but people were very good about telling us what was happening every step of the way in the least scary way possible. God love the man who would be Colton's PICU nurse. He had the calmest, and yet perfectly appropriate chipper attitude and demeanor. He spoke to us in a very upbeat manner after looking at Colton's vitals, etc. and said to us, "I just want you to know that I see nothing here that makes me unhappy." In other words, for the moment, things looked good. People like him were meant to be in these professions.


Just before they took him to ICU, they let Brian and I come over and give him kisses....
At some point, things calmed down and the number of people surrounding Colton decreased dramatically. But without haste, we needed to get Colton to the ICU. So off we all went, traveling in one big giant mass of people, piling on and off elevators until we reached our new home, the PICU. It was quiet up there, and dark. Much unlike the brightly lit room we had just come from. Several more doctors and nurses came in to check stats and do what they do. The good news at this point, is that all of the Colton's blood work was coming back normal. Things that cause seizures were normal.
I took a picture of this late that night because it was a little piece of happiness amidst the mess of wires and tubes and monitors...a bugs bunny bandaid on my baby's toe...

The sign reminding everyone that nothing is to be in his nose or mouth..
So the big question remained. What caused the seizures and why did he stop breathing?

It is our understanding now that a combination of the anesthesia and the heavy narcotics Colton was under was making his body unresponsive enough that while he was barely able to take short, shallow breaths in, he was not able to expel enough air as he breathed out. Now back to high school science...we breathe in Oxygen, we breathe out Carbon Dioxide...so in this case, Colton was not able to get rid of the CO2 in his lungs and thus had extremely high levels of it in his body, making him highly acidotic. (That's the simplest way I can explain it.)

So, while the whole thing was horrible, this would be a great ending because there should be no reason that he would continue having seizures now that his body was free of the narcotics and sedatives.

Unfortunately though, they can't just leave it at that. They have to be sure. So we met with a neurologist who asked lots of questions and then explained that Colton would need to have a head CT scan done to look for any brain abnormalities or bleeds in his brain. Apparently, it is not uncommon for children with cleft palates to have abnormalities in their brains. He also explained that he would need to undergo an EEG to monitor his brain activity so that he could determine whether or not there was more seizure activity going on. If there is, we would have to talk about taking seizure meds for the rest of his life. If all looked normal, then we'd be one step closer to going home. He would also require a chest x-ray to assess whether his lungs were clear.

Our first stop that same night was to do a CT scan. We all went along for the ride and let me just tell you what a delight it was to actually see Colton's eyes open. He was actually watching the dozens upon dozens of lights on the ceiling as we strolled the halls of UMC. That was one of the first glimpses we got of "our Colton" that whole day. :) Though the CT scan has to be formally read and interpreted by the neurologist, the resident doctor who had accompanied us was able to tell us that from his glance at the CT scan, things looked normal. *Sigh...* That was relieving to hear, to say the least.

At some point the next morning, (though frankly, when you don't sleep a wink, nighttime just kind of blends into morning...) Colton woke up, eyes wide open! Hooray! He clearly still did not feel well but he was awake, by God, and he knew we were there with him!

The arm braces were possibly one of his least favorite aspects of this ordeal. They are designed to prevent him from putting his fingers or other objects into his nose and mouth. I don't know who hated them more....he or I.

Sleeping...Colton did a lot of sleeping while he was at the hospital. Can't say that I blame him.
And as you can see, today's attempts at feeding were much more successful than our attempts immediately following surgery. He actually drank about 16 oz of pedialyte in a few hours! Whew!
And then Aunt Mary came back to visit in the morning. (She took the day off because she was so worried about her nephew. That, and even talking about why she was not going to be working left her and whomever she was talking to in tears...) Yeah, try teaching kindergarten while you cry. Not gonna happen. So anyhoo, these next 2 pictures were possibly the best moment since before surgery. Every one of us keeps that old video of Colton belly laughing on our phones simply because it is sooo funny, so we decided to play it for Colton, and for the first time in almost 2 days, he smiled.
And we cried. Such chicks.
Not long after that, my mom was able to sneak out (Thank you Rosey, for watching Hunter and Ethan) so she could visit Colton. He was happy to see Grammy!
Here we are getting prepped for the EEG. Basically, they have to put 20 some (maybe more) probes and essentially glue them to his head. Then they have to get a reading of brain activity while Colton is asleep and then awake. The kid is a champion...he was so darn cooperative. You'll notice that I'm holding my mom's cellphone again, playing the video of him laughing again because it was the perfect tool to get him to look left or right, so that the EEG tech could get the probes all over his head.
See all those wires?? Yeah, they're going on his little head!

What a trooper. Here he is sleeping. I don't know that I'd be able to sleep with all those stuck to my head.
Finally he was done and could rest wire free. Brian and I got him this little bear who would look after Colton....isn't he the cutest thing ever?

Then Aunt Mary read showed him a photo book of people Colton knows. He loved it. As he started to feel better and better each day, he would actually wave when he got to pages with Ethan and Hunter. Can you say ADORABLE??
More sleeping....
And more sleeping.... :)
And even more sleeping. :)
Neither an aunt's or a teacher's work is ever done...Aunt Mary is preparing mother's day projects for her kindergartners while Colton sleeps.
And then, as much as it pained me to leave the comforts of a very closely monitored PICU, we were excited to go back to the regular Pediatric Floor. Here is Aunt Mary and Colton in a fun wheelchair!

This is Victoria (Vicky) our PICU nurse all night and into morning. She was amazing...loving, caring, and very attentive and thorough. She was the perfect complement to my personality and I so appreciate what a fantastic nurse she is. She was Colton's angel nurse!
Later that day, we thought maybe Colton would do well do see his brother and sister. It might help brighten his mood. So my mom brought Hunter and Ethan down to visit later that afternoon. (Now, let me take a moment to say this...you may notice that my family is in a lot of these pictures. And they are fortunate to live right here in town with us so it is easy to do so. Brian's family does not live in town, but if they did, they'd have been here too. They were busy getting lots of prayers for Colton from people far and wide. And in fact, they would have come down right after Colton's first seizure, but in the chaos of the moment and not knowing what was going to be happening, we asked that they wait to hear from us first. But my point is, our babies have another family who loves them just as much and I want them to know that we appreciate everything they did too...) Nana, Papa and Auntie Kristen, we love you!

Grammy and Colton...the goo that held his EEG probes to his head doubled as hair gel. How do you like that do?
BROTHER AND SISTER are HERE!! Yahoo!
Peanut
Ethan totally mesmerized with the view from the 5th floor!
Ethan playing in Colton's crib
Hunter saying, "Colton, I want to play with you! I've missed my partner in crime!"
Snack time!

A big "Thank you" to Ironwood Elementary School Students! They raised money to make "Build-a-Bears" to deliver to children in the hospital! Colton got to be one of those lucky recipients! He loves his bear!
Finally....chocolate pudding with whipped cream on top! That did the trick to getting Colton to start eating again!
Conveniently there was a playroom right around the corner from Colton's room! They let us bring some toys back to his room so he could play with them from his bed!
And yes, that is me snuggling my little buddy from INSIDE his crib. That's a dedicated mommy if you ask me!
Cuddling his glow worm that our friends Leigh and Abby brought...how cute is that?
Good morning World!
So much for the smile, Colton. :)
Resting up before they let me go home! Could I BE any cozier??
If you couldn't tell, we got the good news that I get to go home! So Brian got the stroller and Colton did a little mechanic work first...


Colton and I entertained ourselves with a game of "put the towel on and off your head" while we waited for paperwork to be done.


And finally after what became a much longer stay than we'd anticipated, we were going home. With our baby boy. So on that note, I'll say this...
Dear Colton,
Right now you are too young to understand what you went through. I wrote this blog so that when you are big someday, you will be able to know how much you were loved. We brought you to the hospital that day so that Dr. Hurst could fix your mouth, and buddy, he did it! He did an amazing job and you have been such a trooper! You even snore now, which Dr. Hurst said is a sign that the surgery was successful. (I'm not sure your brother and sister, who sleep just a few feet from you would agree, but that's okay!)
I am so sorry for everything else that happened. You should not have had to go through that. But that day, watching you struggle, my heart grew bigger than I ever knew was possible. The moment you stopped breathing, so did I. In fact, my whole world stopped.
Watching you in those moments, I was forced to imagine a life without you, my first born baby. All I could think of was your bed head in the morning and the way you clap when you're proud of yourself. I tried to imagine what my life would be like if I did not have your big blue eyes to gaze into each day. I tried to imagine how quiet the house would be without you getting into everything. I imagined how sad Ethan, Hunter, Piper and even the kitties would be if you had not come home. I wondered if I would ever be the same if I did not have you to rock to sleep when you felt sick, and would I ever throw the ball or play peekaboo again and not think of you?
Colton, not coming home was simply not an option...mostly because there are not enough tears in this world that could be shed for you. You are my first born triplet...God gave me three babies to love for a reason...if I had lost you, I would have lost a piece of my heart and soul. So thank you for being as strong as you are. You are loved little boy-by people who know you and many who only know of you...
You have a lot of life head of you kiddo, and I look forward to every minute...I love you more than I know how to tell you...Your heart is big, Colton, but mommy's is bigger. Inside mine, is you...Love you forever Bubba.

Love, Mommy

21 comments:

Kari said...

Hi Ami, you don't know me but my name is Kari Friedman. I am good friends with Lorie and Collin Kennedy. I have been reading your blog for quire some time now and feel that I know and love your little "Bunchkins" :) I could not even fathem what you went through and hope that you and no one ever has to go through it again. You are a very strong women and I commend you. I have a 3 year old son and a 21 month daughter and as I read your entry, with tears steaming down my face, all I could think about was what would I do if I were you and that my my little boy or girl going through that? It's unimagionable and inconceivable. Please give all of your little ones a kiss from me and know that you have many people who hold your family in their hearts.

Vanessa Corey said...

Oh Ami....where do I begin??? It was so hard to even read this with the constant tears clouding my eyes. My heart was breaking for you and your family and I cannot fathom what it must have felt like to experience what you had to go through. Your Colton is so very strong and such a brave boy to endure what most people won't have to go through in a lifetime. What a trooper :) He has touched my heart and so have you - thank you for sharing this leg of your journey. I will hold Jack tighter and I am so thankful for each moment I get to share with him. Again, I can't even begin to imagine how you possibly dealt with the thought of losing your sweet boy but I thank God it was just a thought and not a reality. How overjoyed you must be to have all of your babies safely in your arms again. You are an amazing mom Ami and please give your triplets lots of love from us and we wish Colton a speedy recovery XOXOXOXOXO

Georgia & Matt Johnson said...

Ami and Family,

I cannot express how lucky Colton is to have such a loving family. You are a strong mom and I will continue to pray for a good recovery. I can't imagine what you have been through, but you have taught all of us a lesson of the unconditional love a mom and family has for our children. I will keep you and your family in my thoughts.

Love,
Georgia and my little family

jrcoffey said...

Ami & Brian -
You two continue to inspire me. I can not begin to imagine the road you have been down in the past 5 years. And yet, you know exactly when to celebrate, exactly when to cry, and exactly when to laugh. I can only hope to be half as amazing as you two are in life, together.

Colton, my love, by the time you understand, I know you will be in awe of all the love that surrounded you that day and every day. Success starts from a very young age, and boy you are going to conquer the world!

Mary, you are the worlds best aunt. Only a girl who has a sister can understand how you suffered just as much as anyone that day. As an aunt, a sister, and a best friend, your love and strength is incredible. And yet, I know you think nothing of it. I only love you more for this.

I am PROUD to call you my family. I Love You. -Jenna

Sarah said...

thank you for sharing your story ami. i am sure it was hard to put in to words but you did it so well. you really are an amazing mom. reading your story made me think about my little boy and i just hope that i can be half the mom you are. love you!!!

Lofgren Family said...

Ami - I think I used an entire box of tissues while reading this post. I cannot even begin to imagine what you and Brian went through at the hospital. To be standing in a room watching the unimaginable happen...words cannot express that kind of pain. This journey has been a difficult one for you; yet at the end, you have found the "silver lining". I am so thankful that your story had a happy ending.

Colton is such a special little boy; anyone who meets him and stares into those big, blue eyes instantly falls in love. He has already accomplished such great things in his first year. I cannot wait to see what great things this year will bring.

You are an amazing mom who inspires the rest of us. Thank you for sharing your story. Tell Colton, Ethan, and Hunter that Andy can't wait to play with them again soon!

Love, Jen

Mary said...

Again, the tears are flowing while reliving that day...one of the hardest parts for me was glancing at you, the strong mom, and seeing the tears streaming down your face as they tried to get Colton to breathe...then time did stand still...and the the unthinkable thoughts were going through my mind... until that doctor "his angel" told us as she was bagging him, "He is getting breaths in and out, don't worry." Although we still worried, it made it a little easier, at least for me. I know it hurt Colton, but your cry a few moments later was the best sound I've ever heard.

Colton, you definitely scared us thinking of life without you! As your mom said, thank you for laughing that day in the hospital at your video, because that let us all know that our Colton was coming back to us!

I love you Colton!

Monica Rod said...

Bunchy & Family-
I am a dedicated blog follower, I feel like we know you all over again thru this blog (Ami & I would get along great..the Dr. Pepper, the Sbux..) I digress..
I am so glad to hear that he is doing better, & am so glad that even though I am sure it was painful to relive,that you shared this story. It makes us all more aware of how lucky we are to be parents & how lucky we all are to have such a huge support system.

Extra prayers were said the day of his surgery from our family, and we will continue to pray for your family and for a speedy recovery.

Much love to all of you!
Jason/Monica Rod & our crew of 4 girls!

Adam and Samantha said...

wow, what a scary day. I can't begin to imagine having to watch one of children go through something like that. You and Colton are so blessed to have each other. Your both fighters and are strong for each other. I'm so glad everything turned out well and he's doing better. Thanks for sharing this, even though you made me cry again, I can blame that on pregnancy hormones right? It makes me want to go give my kids a big ol'squeeze!

Anonymous said...

GOD IS GOOD AMI AND BRYAN!!! HE WAS WITH YOU ON THAT DAY AND HE WILL BE FOREVER...WHAT A HUGE RELIEF THAT THIS STORY HAD A HAPPY ENDING! I WAS PRAYING IT DID AND IT DID. PLEASE HUG YOUR KIDS A LITTLE LONGER TODAY EVERYONE.

ValarieEdmon靜宜 said...

累死了…來去看看文章轉換心情~........................................

Grace said...

Thank God! This made me all emotional and I'm so happy your little boy is ok. I'm not a mom yet but I could feel your emotions through this post. I'm sure someday Colton will read this and be specially grateful to have such a devoted mommy!

韋于倫成 said...
This comment has been removed by a blog administrator.
Liza said...

I'm a big fan of your three little munchkins ♥♥♥ I really admire you guys, Ami and Brian. You're such a wonderful parents. Hoping for Colton's quick recovery.

Anonymous said...

Ami - I came across your blog from the blog2print web site. I have a little boy named Colton (7 months) and quickly got sucked in to reading your blog. My little man Colton has been through a few scary moments as well in his short life - a heart defect that closed on its own and what we now know was him sleeping with his eyes open but at the time was thought to be a staring seizure (he also had an eeg). Reading your story was a reminder of how precious our children really are. I will go home and hug and kiss my babies tonight (little, big and furry) thanks to your story. God bless!

Anonymous said...

Ami, I just came across your blog today. I have a little boy who was born with a cleft lip and palate. We are actually getting ready for his first surgery to close the lip in 2 days. I have been nervous and excited and sad all at the same time. Thank you for sharing your story...you and Colton have encourage me and my little one more than you will ever know.

johanna said...

Ami, just came across your blog, you did an amazing job retelling the events of that day. We all were able to think and feel the thoughts you thought. What hit me the hardest was the end, the letter to Colton. You are so lucky to have Colton in your life. I lost my first born triplet so I cried and cried when I read what you wrote about the what if's...all the thoughts I am actually faced with. I'm so glad that Colton is ok and that he has recovered fully (since it's been over a year). God bless you and your babies, I hope you will always treasure the true miracles they are.

Julie Scott said...

Wow!! Just read your post and I'm not sure if that was a good thing or a bad thing...my son will be having his palate repaired in less than 2 weeks. I stumbled upon your blog and can't stop reading it. I can relate to so many of your posts! It makes it a little easier to see that another person has gone through the same feelings that you went through and what to expect for things to come! Glad everything turned out well for your beautiful son. I look forward to reading more posts!!

Jacqueline said...

I had just read your lip repair blog...and now this...
Though Im not sure it was good as I prepare myself and my family for my sons upcoming palate surgery...
I am so glad everything ended up fine and that Colton, like my son is a trooper.
Thank you for sharing your story...oh and PS we call our lil Joshwa (with blue eyes) Bubba as well...this story really hit home for me...
Bless you and your family

Karl Schonborn said...

Hi…My name is Karl Schonborn and I really enjoy reading your blog posts. I was born with a cleft lip and palate and know firsthand about the difficulties many children experience as a result. My childhood was fraught with taunts of “Harelip” and bullying, but with courage, humor, and my family’s love, I overcame the shame, handicaps, and personal losses that might’ve defeated others less resolute. My memoir, Cleft Heart: Chasing Normal, will be released in October. I currently update my own blog and would love if you could check out my postings at KarlSchonborn.com. It’d be great to connect on twitter (@KarlSchonborn) and Facebook (Facebook.com/CleftHeartChasingNormal). I am always looking for new people to follow and connect with through social media! Thanks for your time and for the great posts on your site.

Kika said...

Wow, had me in tears.
wishing you all the best.

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