Premaxillary Repositioning Tightening

After little Walnut had his surgery to place the prosthetic prosthesis with the premaxillary repositioning and NAM device we were scheduled to revisit the hospital every other week to have the chain tightened.

When I called the doctor's office they scheduled the first tightening for three weeks from his surgery, and although I put it in my calendar as such, I somehow had it in my head that he was scheduled two weeks after the surgery. Long story short, I realized on the way up to Salt Lake that we were heading up a week early.

I called the office to be sure, and sure enough we weren't supposed to go up until the next week. Classic. Since we were already on our way, they told us to come up anyway and they'd squeeze us in. And naturally, I forgot to schedule an appointment with Dr. Yamashiro, the pediatric orthodontist, as well. His office was also extremely accommodating, and told us we could come up after our appointment with Dr. Morales.

Once we were in the exam room I took Walt out of his car seat and swaddled him up. Dr. Morales was out of town, so his associate, Dr. Morris (an ENT), was taking his appointments; she was in the operating room for Walt's surgery as well.

She had me hold Walt in my lap with his head facing her. Among the squirming and screaming from Walt while I held him down and a nurse's assistant held his head, Dr. Morris managed to locate the hook on the left side of his mouth and move the chain over two links.

I also told her that a few days earlier Walt had gotten out of his no-no's in the car, and hooked his finger in his nose wire and yanked it down a little. She tried her best to work on his wire to push it back up into his nose, and move it away from his gum line, but it proved to be a little harder than expected. It wasn't quite bending like she'd hoped, and after awhile of working on it, she decided not to bend it anymore in fear that it would weaken and break. She said Dr. Morales would look at it at his following appointment and see if it needed any more adjusting. She also said she remembered them commenting on the length of the wire in the OR, that Dr. Yamashiro had made it a little long, so they really wouldn't be able to move it out of his gum line entirely.

It was extremely unpleasant watching him go through that, and there were brief seconds where I thought I couldn't do it anymore and considered telling my mom to take Walt and I'd wait in the hall. I pushed past it though because I'm Walt's mom, and he needs me.

I held little screaming Walt as we went up to the pediatric orthodontist afterward, and my mom readied his bottle. I was met at the front desk of the orthodontist by a mom and her daughter. As soon as we walked in, she turned and glanced at us and gave a small gasp. The hygienist asked her, "did you just have a flashback?" This sweet mom started fanning herself with a piece of paper as her eyes started to well up. Her teenage daughter had also been born with a cleft lip and palate, and here we were practically reenacting similar scenes from her life years ago.

She looked at Walt and commented that her daughter had the same device, and was fed by the same bottle as well. It was pretty neat to talk with her for a minute and be reminded that thousands of others walk this same path. She was very sweet, as was her daughter, and they both assured me that she doesn't remember any of what we are watching Walt go through.

Dr. Yamashiro took us right back to his office, and looked at the prosthesis quickly to ensure everything was in it's right place, which it was, and then we were free to go.

Walt spent the rest of the day pretty irritable, and on a steady regimen of Tylenol.

We've had two other tightening appointments since, and both times Dr. Morales has decided that the chain still has enough tension that there's no need to tighten it. At the appointment two weeks after the first, I asked about the divot the nose wire has made in his bottom gum line, and could it be moved at all. He messed with it a bit, and pushed it even further into his nose, which lifted it a little from his gums.

For the next week Walt's nose was clearly sore, and he would get upset any time we touched it. It looked pretty red and shiny from being stretched tight. Since Dr. Morales hadn't tightened his chain, he had us come in a week later, which luckily for us was at their clinic in Provo.

He noted that his right gum line had started to drop down a little from the chain slipping, and said that once again the chain was still tight enough, and by the looks of his drooping gum line if he were to tighten it again it could rip through his gum line. That could happen as well even if the chain wasn't slipping, just by putting too much tension on the chain.

I asked about his nose as well, and he said he had probably pushed it up a little too high, and adjusted it again. This elicited a lot of crying just as it had every time they messed with it. Oddly enough, the part of his device that has been the least invasive, has caused the most trouble for him during his appointments. Poor little fella.

Dr. Morales said no more tightening was needed, and that he wouldn't see us again until his surgery on May 6th. Apparently once he closes up his lip, his gum line will move together much quicker than it has since he put the appliance in, since the lip tissue is stronger than the rubber chain. He said once his lip has healed up enough for us to lift it and look inside his mouth, that we'll see his gum line nearly touching by that point. Just in a matter of weeks. Wild!

Since he didn't need us to come again, he cut the black stitch off, and removed it from Walt's mouth. It was there just for leverage when he tightened; to move his lip out of the way while he was trying to locate the chain. There was no longer a need for it.

So now we are stitch free, and on a break from doctor's visits until the big surgery day in a little over three weeks. I'll get to my feelings on that day in a later post. I'm NOT looking forward to the surgery at all, and not for obvious reasons.

First Surgery

On Thursday, March 6th, we, and Tadd's parents, headed up to Primary Children's for Walt's first surgery. We made what was meant to be a brief stop at my sister's house in Lehi to drop off Sam for the day, and while driving out of their cul-de-sac managed to drive squarely over a bolt in the road. Tadd's dad noticed it moments later, and even with the schedule we had to keep, we had no choice but to head over to Costco and have it repaired. 

Of course I'm thinking, "it's an omen!" We shouldn't be doing his surgery today! But I guess bad ju-ju or not, we were going through with it. The surgeon has a timeline, and by hell or high water, he was keeping it. So Tadd made a few phone calls, made sure we were allowed to arrive late, and we were given the OK to still come. Dammit.

Costco was phenomenal. We explained our circumstances, and they opened up an extra bay, got us in immediately and had us out of there in under 30 minutes. It ended up being sort of nice that we arrived late because Walt hadn't had formula since midnight, and nothing but Pedialyte from then until 10am. It was easier to hold him off without having to sit in the waiting room an extra half an hour. 

My dad insisted on being there for the surgery, and while I hadn't expected him to, I'm so grateful he was. He met us up on the 3rd floor, and he and Tadd's parents took a seat outside the registration waiting room while we went in. 

Both Tadd and I had been too nervous to eat much, but Tadd couldn't bear much longer without food, so while we waited with our buzzer, he ran down to the cafeteria to grab something. I was pleasantly surprised with how quickly I was seen, and within just a few moments I had gone over all the necessary paperwork with the registrar and was back out in the hallway waiting for the nurse to take us back. 

Once again, a short wait time. In fact, Tadd hadn't even made his way back up to our floor before the nurse called me back. I was taken into an exam room and instructed to strip him down to a clean diaper. After doing so, he was weighed, and shocked me with his 11 lb 3 oz frame. I was convinced he'd been working too hard while eating to put on much weight, but he had gained nearly 2 lbs in the last couple weeks. 

The nurse took his vitals and gave me his surgical gown to change into, which I had grand plans of stealing, of course. Tadd had arrived by then, and we waited a few moments for another nurse to come in and answer any questions we might have. Shortly after she left, Walt's surgeon came in and described what he would be doing, and answered any more questions we had. After all of that, we were led into the OR waiting room where we spoke with the anaesthesiologist and her resident. They explained that they'd be putting him under by first placing a gas mask over his face, and once he was out they would place the IV in his foot, and intubate him to keep the gas flowing to keep him under. This had been something I was very nervous about, and they were able to greatly put me at ease. 

Walt had been a dream through all of this. He didn't wake up until I took him out of his car seat to be weighed, and then fell back asleep in my arms after I dressed him. My sister's MIL crocheted him a beautiful blanket that I dubbed his "surgery blanket" (and by golly, I'll make him cuddle with that thing up until his last surgery no matter the age. 15, 18 or what have you), and I had slept with it the night before, hoping it would offer him some comfort. He was bundled in that blanket from the time he was out of his car seat until he was on the operating table. 

When it was time to head back to the OR, Tadd and I shakily followed the anaesthesiologists to the doors of the operating rooms, and handed him over. I expected to fall apart at this point, but actually kept my cool until I glanced over at Tadd and saw him sort of break down. The walk down the hallway to our parents felt like slow motion, and my heart had never pounded so hard. 

The next 45 minutes were spent sitting in the family waiting room shooting the breeze with our parents, and for me, anxiously shaking my legs, a trait I picked up from my dad. 

The surgery was quick, so before long we were told Dr. Morales, the surgeon, would be over to talk with us, and to please move to the consultation room to chat. We waited a few minutes, just long enough for me to swipe a box of Cars crayons to give to Sam. 

Dr. Morales came in and explained what had been done in the OR. The palatal prosthesis Dr. Yamoshiro had made was pinned into place over his cleft palate to somewhat give him a "fake roof of his mouth", my words, not his. There would be two hooks in his gumline where a chain ran across, as well as a wire with a bulb on the end dipping down from the appliance and back up into his nose to center his nose and give it a little stretch over the next few months. He told us he likes to tighten the appliance for three months, then I told him we already scheduled his next surgery for two months from now and he said there's a chance we'll keep that one, but if he feels he can move his gap even more then he'd like to reschedule for June. He told us he can usually close up the cleft 50-60%. 

He told us Walt was wearing arm restraints or "no-no's", and that it was very important to keep those on unless highly supervised because if he were to get his finger up in his mouth and hooked on the chain, by infant reflex, he would rip it right out. 

Feeding was discussed, and we were instructed to continue using the same bottle and nipple and not to change anything. We asked him the best way to feed him now since we had been placing the nipple up into the cleft which allowed him to make somewhat of a seal on it, and he told us that he probably should've gone over that the first appointment because we probably made the cleft bigger by doing that. Parent fail! 

After all questions were answered, we were sent back into the waiting room and in a few minutes one parent was called back into the post-op room. Instinctively I got up to go, taking his special bottle with Pedialyte still in it, and Tadd was just fine with letting me go, so I headed down the hallway. 

It didn't take me long once entering the room to figure out that the infant cries I heard were that of my baby's. The recovery room was lined with beds and nurses at each bed with what seemed like dozens of monitors hooked up to each patient. In what felt like a blurred haze, with focus only on Walt's bed, I rushed to his side. 

The anaesthesiologist was holding in his binki (which Dr. Morales told us we had to put an end to for good), trying to calm his crying, and told me I could take her place and try to feed him. He was a mess of wires and no-no's but I did my best with his poor sore mouth, to give him a little fluid. The anaesthesiologist left a minute later informing me everything went great and Walt did so well. 

The nurse that was left with us told me I could pick him up and move over to a chair and try to feed him. He was still screaming, and she determined that he wasn't just hungry but in a lot of pain, so she gave him a dose of Fentanyl, which is fast-acting, but not long-lasting. In a couple minutes he calmed down enough to doze off, and had no interest in his bottle, which we had squirted Tylenol into to hopefully get some other sort of pain management into him, and I was able to squeeze in a little here and there. 

The Fentanyl had calmed him down a little too much, and soon his oxygen began to drop. She handed me an oxygen mask to hold near his face, and I sat there with my eyes nearly fixated on his oxygen level, and placing the mask by his face off and on when it dropped into the low 90's and below. 

At one point, he dropped down into the 70's, high 60's, and the monitors started to beep, rather than blip. The nurse called out the code, and began rushing over to me from the other side of his bed. Once I'd placed the mask over his face for a few seconds, his oxygen spiked again and she called off extra help. I imagine that if a person was still alive after having his head chopped off, they would have felt how I did. Every ounce of blood draining from my face, and a rush of a cold sensation. It was horrid. 

We stayed a little longer than usual in the post-op room because of his oxygen, and I just sat there monitoring that, taking pictures to text to Tadd, and snuggling my sad baby. Once the nurse felt he was stable, she wheeled the bed while I held Walt, into a recovery room where another nurse took over. 

Tadd was allowed to come in then, so I notified him and he showed up moments later. We took turns holding him off and on for awhile, and fed him his Tylenol-bottle through a syringe, until he instructed me to go get some food. I went out and got my dad to come see Walt before he had to take off for work, and then led him back out, and Tadd's parents in before I went down to the cafeteria. 

After getting some food and a Diet Coke, which didn't help my anxiety shakes much, I came back up to the waiting room until the nurse was ready to discharge us. I was still nervous about his oxygen so the nurse let us sit there a little while longer until I felt confident enough to leave. Tadd asked for a few more pairs of no-no's and while she looked for them he jokingly said if she couldn't find any he'd just tape tongue depressors to his arms, and make him wear a football helmet. She did NOT find that funny.  

Since the Fentanyl had worn off long ago, and the Tylenol was still kicking in, Walt was crying a little and clearly uncomfortable. I asked if I could just leave him in his surgical pants, and slip his gown over his arms before placing him in his carseat, and she said that would be just fine, so we walked out of there with that gown without feeling like thieves!

While waiting for the valet Tadd grabbed a few giant syringes from the pharmacy to feed Walt, since he now had to kind of chomp down on the nipple of his bottle to eat, and his gums were incredibly sore, we figured he'd have a tough time eating. I was actually able to feed him a tiny bit from his bottle on the ride home after picking up Samson, which was comforting, and we only fed him with the syringe for less than a day. 

With a steady regimen of Tylenol for the first 5 or 6 days, and administering nearly 24 hour cuddles, there weren't many screaming episodes, and we were able to keep Walt fairly comfortable. My mom stayed with us Sunday and Monday night and took the graveyard shift with feedings and medicine so Tadd and I could rejuvenate. 

I have actually been quite surprised with how well I've dealt with this surgery and recovery. There have been no tears, and mostly just a gotta-do-this attitude. However, I anticipate his next surgery, the lip and nose repair, being very hard on me. I am smitten with his little face just as it is, and extremely nervous and somewhat panicked about seeing a different little face. Just the thought of it right now causes my stomach to leap into my throat. But...what choice do we have? For nutritional reasons alone, this has to be done. Heaven help us. 

Pediatric Orthodontist

Last Thursday was Walt's appointment with the pediatric orthodontist to have a mold made of the roof of his mouth up at Primary Children's Hospital, with Dr. Yamoshiro, whom we were immediately impressed with. My mom came up with us, since Tadd had to work.

The impression was to be made for the prosthetic palatial plate he is having put in surgically this Thursday. 

I didn't really know what to expect from this appointment. Would it take awhile? Would we be out of there within the hour? Would Walt be in pain from the impression? Airing on the side of caution, I gave him a dose of Tylenol before leaving my sister's house in Lehi, where we dropped Samson off. 

I learned an interesting thing about Walt and Tylenol when he was two weeks old. We were heading in to his two week appointment with his pediatrician, where he was going to be circumcised. Naturally, I wanted him to feel as little pain as possible, so before the appointment I gave him a dose of infant Tylenol. The reaction I got from him was awfully sad and a little scary. The minute I squirted it in his mouth he went back and forth from no breathing to gasping for about five minutes and the Tylenol was bubbling out of his right nostril and coming back out his mouth. 

I spent some time trying to calm him down and then holding him with his head back so at least some of the medicine would go down his throat, and then giving up and suctioning as much of it out as I could. I had no idea why he reacted this way, but just figured he didn't like the taste or didn't like being given medicine. 

I later asked at the pediatrician why he would've reacted this way, and he explained that Tylenol is a very aromatic substance, and when I squirted it into his mouth which has an open nasal cavity, it was essentially like I was squirting it up his nose. Think about when you get water up your nose and how awful that feels, then imagine adding something like a strong smelling essential oil into that and how that might feel. No wonder he did not tolerate it AT ALL. 

The doctor suggested we give it to him in the last ounce of formula during a feeding, or squirting it slowly into his cheek on the right side. We had tried the formula method before which worked great but when we were leaving my sister's house, I didn't have a small amount of formula to give him and he had recently eaten, so I tried giving it to him in his cheek. I essentially got the same reaction I did before his two week appointment. I ended up wiping out as much of the Tylenol as I could since I could see he wasn't going to take it like I'd hoped. I felt bad not being able to give him a full dose but figured there wasn't much else I could do.

Back to the appointment...we arrived at Primary Children's just in time and headed up to the third floor. I swaddled Walt up, wanting to keep his arms out the of the way plus he responds well to the swaddle, and then we were seen almost immediately by the doctor.  

The impression was done in the doctors office, and took no time at all. He asked me a series of questions before taking the impression, and I noticed that many of the questions he asked and sometimes how he talked, were directed at Walt. It was really sweet to see him talking to his patient as if he could respond. This ended up in an embarrassing moment for me, however. 

Dr. Yamoshiro first asked me, "what was his birth weight?" I told him 7.10, and then he asked, "and your last weigh in?" Now, hearing a question phrased that way, wouldn't you expect he's asking YOUR weight? Well, that's what I assumed! I hesitated for a tick, and then asked, "you mean my weight?" He quickly corrected me, and a question or two later, just had to revisit that previous moment in laughter. "I absolutely wasn't going to ask your weight!" We all got a good laugh out of it, and I told him I nearly spilled my weight! How was I to know if it was relevant or not!? Classic Caitlyn. 

After the questions, he explained how the impression would work, took a look at his mouth, and went and got the materials he needed. He had me hold Walt facing outward, with this head against my shoulder, and he tested two different trays to decide which was the right fit for his little mouth. Walt stirred a little while he was doing that, and then instantly went back to sleep.

He poured some water into a ziploc bag of powder and begin to squish it around. The molding clay turned purple, then pink, and he told us once it turned white it was ready. He quickly ripped off a corner of the bag, and squeezed the clay into the smaller tray, just in time for it to turn white. The tray was inserted for about 15 seconds, and Walt kept quiet for about 5 seconds, then got a little worked up. He cried for about 10 seconds while the tray was in, and once the doctor pulled it out and he was instructed to "hug mom", he stopped crying and went right back to sleep. The kid was a champ. We decided some of that Tylenol must've gotten into him, and that helped calm him down. He's a fairly mild mannered child anyway, but his behavior during this appointment was incredible. Let's chalk some of that up to the meds. 

The doctor complimented Walt on his behavior, and asked us to set up follow up appointments with him once we set them up with Dr. Morales after the prosthetic plate is put in, and sent us on our way. We were out of there within the hour. One appointment down, a billion to go. 

Palatial Prosthesis & NAM

Walt will undergo about eight surgeries over the course of 15 or so years, starting at 7 weeks. When we met with his surgeon last week, we scheduled his first two surgeries, the first being in March.

That first surgery will be an outpatient procedure that only takes about 30 minutes to put in a Nasoalveolar Molding, or NAM, and palatal prosthesis. We meet with the pediatric orthodontist in a few weeks where they'll make a mold of the roof of his mouth, which will be used to make the prosthetic.

Walt’s cleft is called a complete unilateral cleft lip and palate, meaning that the cleft affects from his soft palate all the way up into his nose. A cleft lip and palate often leave the middle part of the nose and the nasal cartilage deformed, like Walt’s. Surgery alone is often not enough to provide an aesthetically acceptable correction. 

The NAM technique takes advantage of the malleability of immature cartilage of the nose and the ability to non-surgically construct and center the columella (middle part of the nose) through the application of tissue expansion. By the addition of a nasal portion to the molding plate, they can often correct and center the nasal tip, the base on the affected side, as well as the position of the philtrum, (vertical groove in the middle area of the lip) and columella.

This nasal portion is sort of like a wire arm with a ball on the end that extends up into the left side of Walt's nose. It is supposed to stretch his nose, making it easier for the surgeon to create his nostril. 

The NAM has hooks attached to both sides of his open gum line, that will have a small chain attached between the hooks, which will be tightened every other week at the surgeon’s office. The purpose of this is to stretch his gum line and lip tissue, so when he goes back in for his lip and nose repair in May the gap will be much smaller.

My goal with this blog is to keep it updated with Walt's doctor appointments, surgeries and progress. Here's to hoping I can do it!

"Well, Since you Asked..."

Those are the words we heard from the technician at our 20 week ultrasound when I asked how much they can really detect from this ultrasound, in terms of defects and conditions.

There was a pang of panic when I heard her, but she gave me no time to run any possible diagnoses through my head, as she quickly moved her wand across my bare belly to find our little babe's face to tell us he had a cleft lip.

I distinctly remember my knee jerk reaction was excitement. How neat that he would match his daddy! Just as quickly as I felt that excitement, it was replaced with fear and sorrow. Since that appointment in September, I have struggled to resurrect that excitement from within me, which is puzzling since a person's knee jerk reaction is what they truly feel, right?

Naturally I had an image in my head of what our baby would look like, and in a way I've needed to lay that to rest; say goodbye to the baby I thought we would have.

It was rough to be positive and optimistic about our child's birth defect, even though I know that with modern technology and the advancements that have been made in medicine, this diagnosis is pretty much the best one you can get in the Defect Department.

The added unknown of whether or not he would have a cleft palate added to much of the stress of my last few months of pregnancy, although I had a pretty good idea that he would. From the first few weeks of finding out I was pregnant I knew something was wrong. Naturally, I played the Worst Case Scenario Game with myself for quite awhile, to the point that I needed a priesthood blessing from Tadd. The blessing put my fears at ease somewhat, but there was always a small nagging feeling in the back of my mind that I couldn't rid myself of.

Call it a mother's intuition if you will, but it hit me not long after our 20 week ultrasound that my nagging feeling was the cleft lip. Something WAS wrong, I had known all along. Now, make no mistake, I felt beyond blessed that our little boy was not facing any health risks. It really put into perspective for me what many mothers and fathers go through in the last months of pregnancy knowing that their little baby would arrive with a chromosomal disorder, or a life threatening condition. My heart just aches for those families, only having felt a fraction of what they've gone through.

Part of me feels ashamed to have been so upset with the knowledge of the cleft lip; how dare I cry over something cosmetic? So many other families deal with much worse in utero and out. Couldn't I just be thrilled that the ultrasounds we've had revealed no health risks whatsoever? Yes, I can, and I was/am thrilled, but I've decided as well to be kind and fair to myself, and recognize that this is important and it does matter to me and my family, therefore I'm allowed to grieve.

I can also acknowledge that a cleft lip and palate is more than just a cosmetic issue. It means handing over my little boy to a surgeon time and time again in his childhood to be put under anesthesia and operated on. It means a lot of pain and hardship for his little body, and potentially challenges in speech and hearing. We are allowed to grieve for a time, as this IS a challenge, and something a parent never wants to put their child through.

Now that our sweet baby is here, with a wider than usual cleft lip and palate, we've had our time of sadness and grief, and now it's time for action. We have a job ahead of us. We've been chosen as this sweetheart's parents to guide him through these challenges in his life, to love and comfort him in times of pain and discomfort. We are to empower him, and teach him he is more than just a cleft and not to become a victim of it. We are responsible for teaching his older brother to protect him and be understanding of the road ahead. And we're feeling ready for this. Bring it.

Moments old

2.5 weeks old

July 2012

The 4th of July parade out in front of the salon. Samson was very intrigued.

After naps at home, the perfect addition to any holiday, we spent the rest of the day at my parents' house. A perfect, low key holiday.

My parents' pool played a huge part in our summer, and it was blissful.

Our little conquering the neighborhood playground.

That awful Hand, Foot and Mouth Disease hit our household last summer. Poor kid!

Couldn't get enough of this!

Or this wittle bumcrack.

One evening while Tadd was out, I conquered our bedroom like a champ. Removed my closet door, moved this nightstand out of the hall and next to my side of the bed, and hung that gem of a mirror. I am woman, hear me roar!

Only took us twenty takes to get these perfect shots.

Blur of a boy

Ice cream, as well, played a big part of our summer.

Happy visit at the dentist!

An outing with Ashley, Buffy and all the kids to the crater in Midway. First day we skipped Samson's nap, and he impressed us all!

I'll never turn down post-nap snuggles.

One day that Haley took Samson with her down to my parents' house while I worked.

Donuts...oh dear donuts, how we love thee.

Two year check up!

A little boy's dream...dirty puddles.

One specific meal this boy can't get enough of.

Pioneer Day at Maga's

And Sam was NOT a fan of the fireworks. The year before, however, he laughed hysterically at them.

Uncle Chris does not mess around.

The only way we could keep Samson outside during the fireworks.

Sweet Harper sent "Sammy's Grammy" a letter with some of her beautiful drawings, and the response she received had her beaming!

Again, puddles!

Lovely LOVE this little family of mine.

This nakedness has only been the beginning of his nudist escapades.

My. Favorite. Ever.

Lots and lots of pool time was spent with these darling hooligans!

An introduction to potty training! We didn't actually start until January though.

Oh how my heart flutters when he grabs my hand like this. My sweetest little boyfriend.

Blanket joined us at church.

July's birthday celebration

This little face makes me melt into a pathetic puddle.

Bringing daddy Provo Bakery donuts and a balloon to work on this birthday...

...then stealing the balloon and taking it home.

Daddy's birthday party

Gavin, Collie and Bianca joined the party

Couldn't resist the swingin' Samson blur.

I'm the luckiest gal there ever was.