Surgery #2

10/10/19: Oz's check-in at the surgical tower wasn't until 8:30am so we chose to drive-up to Sioux Falls the day of versus the night before. It was nice to get one last good night's sleep in before weeks of sleepless nights, but more on that later. I had woken Oz up at 2am to get his last bottle feeding in EVER and I remember it being such a bittersweet moment - bitter in the fact that I knew my husky lil' man would soon be hungry and his heart would long for his beloved bottle, poor thing, but sweet in the fact that I would never have to wash another damn bottle again for the rest of my life, my poor chapped hands!

I swear Oz knew what was going on that morning. He was the most cuddly little boy during the hour between check-in and surgery and Oz does.not.cuddle. When the nurse had indicated that either Derek or I could dress in surgical attire and walk with him down to the surgery room until he went under anesthesia, my first thought was that Derek would do that. I mean, my nerves were berserk and as much as I was keeping my pent up emotions in-check, I could see that experience being the trigger to unravel me. However, as that hour of waiting drew nearer to surgery time and the more precious snuggles Oz allowed me, my heart told me I should take him. 

So, I got prepped, walked his pacifier chomping self to the surgery room, held his chubby hand and told him I loved him over and over again until his little body was sedated. Strangely, I felt unusually at-peace in exiting. What a bizarre emotion to have at such a significant time, right? But, I knew the prayer warriors and good vibe throwers were rampant for Oz that morning - so many people were putting positive thoughts and energy out into the universe that I knew we were manifesting a successful surgery. Without a doubt, there was also a divine presence in that surgery room and I could feel Oz's holy posse around him to hold his hand when I no longer could and to keep watch over him throughout the procedure. 

Surgery lasted just over an hour and all went as planned. There was a long wait from the time I received the text message saying he was being taken to PICU and the time they came to get us to go and see him. If you recall my experience seeing Oz in recovery after surgery #1, you know it was a traumatic experience and one that still stops my breath when thought about too vividly. Therefore, I was fully prepared this time around for seeing Oz in a similar condition and well, good thing because it was basically deja vu. With the wound being on the inside versus the outside, there was understandably less visible blood which was helpful but he was just as erratic as he was last time - screaming, flailing, inconsolable. However, after surgery #1 someone informed me those behaviors are not uncommon in infants coming out of anesthesia [why sometime didn't explain this to me BEFORE surgery #1 is unbeknownst to me], so this knowledge and understanding helped me stay calm and collected amidst his troubling cries. With more patience and narcotics, he eventually relaxed enough for us to relocated to our hospital room where the real recovery began. 

Recovery

The biggest piece of wisdom shared from other cleft mamas was 'stay up on medication' and this was stressed as of fundamental importance. We had been in the hospital room for maybe an hour and Oz was soundly sleeping in Derek's arms when the nurse came in to give Oz his next dose of pain medication. He asked if we wanted to wake Oz to administer it or if we wanted to wait until he woke up. Derek and I simultaneous responded, but with conflicting answers to his question. I won, of course. 

I had mentally chunked the 18 long days of recovery into smaller segments to avoid feeling overwhelmed with the wait and allow myself little milestones of signified achievement. I have summed up our recovery experience accordingly. 

• Day 1
• A hospital stay is not fun. So many cords attached to his body, sounds from the monitors, interruptions by hospital staff, let alone seeing and tending to your non-verbal child who just got done with a major surgery. We did the ol' forced syringe feeding using clear Pedialyte and apple juice and were able to get about 12 mL every 1 1/2 hours or so. We stayed on-top of medications, alternating between Tylenol and ibuprofen every 3 hours. The PA gave us specific instructions of liquid-only diet from a pourable sippy, no spoons and no-no usage [arm restraints] for the next 18 days and then we were discharged home. 
• Week 1
• I took off the full week of work to stay home with Oz. Between Derek and my mom, there were always two people present and this was a Godsend! Oz was still not a fan of his medications so every 3 hours around the clock we'd have to hold him down using way more muscle power than you'd think would be needed in restraining an 11 month old, he is a strong boy! He was a champ wearing the no-nos, easily finding ways to crawl around and play with his toys. The drool coming out of this kid was insane, we were soaking shirts within minutes. Oz was doing relatively well with using his sippys, but still would only drink Pediatlyte, Gatorade or apple juice. We had tried his formula countless times, offering it both warm and cold, and he didn't want anything to do with it. This was definitely the week of trial and error in terms of trying to get him to eat. I have a very long list of things that DIDN'T work, but luckily I found a couple winners! While we had successes with a few things here and there, I would say 95% of Oz's diet in the last 18 days has consisted of yogurt and a pureed mixture of soft cooked pasta shells and baked beans. Honestly, Oz's demeanor was really pleasant most of the time throughout the daytime hours. Nighttime was a different story. Oz would wake every 1 1/2-2 hours and would be comfortless. The only thing that really seemed to do the trick was waiting it out. I think he'd just exhaust himself and then 1 1/2-2 hours later he'd be back at it. At this time, I was thinking it was pain related and I remained adamant that we stuck with the every 3 hour medication rotation. 
• Day 10
• I had been looking forward to Day 10 as according to many moms in my Cleft Mom Support Group, this was the magically time for the littles to really come back to their normals. For us, our days remained pretty rock star and our nights remained brutal. The medication would have helped in the night just as they appeared to be helping him in the daytime, so I really began to question the amount of pain he was experiencing and we started spacing out the Tylenol and ibuprofen dosages. Through personal research that may or may have been scholarly supported, I was reminded of the potential long-term effects of anesthesia on infant's sleep cycles. I don't know why I had forgotten this after similar experience after lip repair, probably because lip repair was AWFUL 24/7, but this all made sense to me. It meant that we should enjoy our happy boy during the days and just continue to be patient with him at night as his brain rewired back to a normal cycle.... patience is hard though when you're majorly sleep deprived so I was desperately hoping for improvement in the near future. One mama said it took her little one 6 weeks to go back to sleeping normal and I about lost my shit in thinking that could be us. The volume of drool remained shocking. 
• Week 2
• GAME CHANGER! By 14 days we were officially off all medications and to the night, Oz slept a solid 6 hours and each night thereafter got better and better! The only negative here is the mischievous son-of-a-gun was finding sneaky ways to maneuver objects to his mouth. I mean, we were managing this recovery process far better than lip repair, but it's definitely something I don't want to relive because he jammed something in his mouth and messed up Dr. Munson's work. I tightened up those velcro no-nos and instructed everyone in the house to watch Oz like a hawk. 
• 18 days 
• Today was our follow-up with Dr. Munson and we have arm restraints and diet restrictions lifted - HOORAY!
• Oz's shirt was only changed once today and it wasn't even drool related - HOORAY!

Oz and Dr. Munson 

Oz and his first meal after restrictions were lifted, he was a happy boy! Please ignore Daddy's scissor happy haircut :(

Many people have asked if this is his last surgery and the answer is a hard 'no'. We have been told that the cleft journey doesn't officially end until the child turns 18. Now, that doesn't mean that every year going forward is as difficult as this first year was, but we will meet with our Cleft Team* this summer and every year thereafter to have comprehensive evaluations and a unified approach to determine appropriate interventions for Oz's needs. The biggest focus of concerns for the next few years involve speech and hearing which may result in related surgeries, but best case scenario we have about a 7 year break until the anticipated Aveolar Bone Graft (ABG) surgery. *The Cleft Team consists of Dr. Munson (ENT/surgeon), speech-language pathology, pediatric dentist, pediatrician, social work, genetics and others if deemed necessary

To sum up, palate surgery is not a walk in the park and there is no way to sugar coat surgery itself or the long recovery, but we survived!!! Thank you for your thoughts, prayers, messages, gifts, and meals, they were all so appreciated and are surely added reasons for successfully persevering through it all!