Round Two for Rocco

​Round 2 is officially underway! 

My mom, Papi, Rocky and I arrived in Chicago on Sunday, 9/13, late morning. Rocky did incredibly well on the flight, even though we were delayed on the tarmac in Orlando for a little over an hour. Once we landed, we grabbed our luggage and rental car. It took us a few tries to get the car seat installed, but eventually we got it figured out and headed out to grab some lunch.

We couldn’t check into our Airbnb until 4, and since we are staying in a different suburb this time, we drove around a little to get a lay of the land. We ate at a delicious Italian restaurant. Then we stopped at a nearby mall with a Target to pick up some essentials. The mall also had a Toys R Us, so Rocky got to look around and play with some of the display toys.

Around this time, I started feeling a little on edge. The anticipation of surgery the next day and everything the coming week would bring was starting to sink in. I was teary and anxious, but I tried to stay busy and distracted so I wouldn’t spiral too much.

We checked into our Airbnb right at 4. It’s a beautiful, newly updated place. The only inconvenience is that it’s two stories with a lot of stairs, but otherwise it’s very kid-friendly and comfortable. We definitely miss our other Airbnb and like the location of that one a little better, but we are making this one work!

We unpacked and got settled. I gave Rocco a bath, fed him dinner, and before long he was ready for bed.

We needed to be at the hospital at 9 the next morning. This time, Rocco was the second surgery of the day instead of the first. He slept really well that night, but he definitely woke up hungry. He couldn’t have solids after midnight, but he could have water until 8 a.m. We kept him busy with a walk and lots of toys, and before we knew it, it was time to head to the hospital.

On Monday 9/14, we checked in and headed to the same-day surgery area, where we were greeted by two familiar faces — Jen and Katie, the pre-op nurses we have come to know and absolutely adore from Rocco’s last two surgeries in Chicago.They were so sweet and so excited to see Rocco. They couldn’t believe how big he had gotten since May!

Rocco, however, was not in the best mood. He was hungry, and he was letting everyone know it. 😂 My mom and I did everything we could to keep him distracted — videos on the tablet, toys, stickers, songs and anything else we could think of.

The anesthesiologist, Dr. Bauer, nurse Susan and the other nurses all came in to check on us. Dr. Bauer explained that he would be placing two tissue expanders: one in the forehead and one in the scalp. He expected the surgery to take about an hour and a half, which was much shorter than the three hours I had been expecting.

The ENT was running a little late, but when he arrived, he explained that he would most likely be replacing both of Rocco’s ear tubes. After we talked with ENT, it was time.

I walked Rocco back to the OR, gave him a kiss, put a cross on his forehead with my thumb and told him, “no one better.” And then I told him I loved him and handed him over.

Papi brought us bagels, and we ate while we waited. My mom and Papi did some work, I prayed a rosary and then read my book.

The ENT came out first and told us that he had replaced both tubes. The left tube was no longer in place and therefore was not working, so I was thankful that they were able to take care of that while Rocco was already under anesthesia.

Then we waited. By 12:30, I was starting to get uneasy. Rocco had gone back around 10:15, so I knew we should be hearing something soon. The waiting was starting to get to me.

While we waited, we met the family of the baby who had the first surgery slot. Her name is Kaia and she was having expanders placed in her back. She is only 9 months old. Her parents were so incredibly sweet, and we connected right away in a way that only parents going through this can connect, exchanged numbers and have continued staying in touch because Kaia will also have surgery in December on the same date as Rocco. There is something really comforting about knowing we aren’t alone in this.

There are other families walking a similar road. Other parents who understand the waiting, the worry, the surgeries, the expansions and all the emotions that come with it. Knowing that we can support each other through it makes my heart feel a little lighter.

Around 1 p.m., they called and told me they were closing up. Dr. Bauer came out shortly afterward and said everything went well. He said it took a little longer than expected to get the forehead expander exactly where he wanted it.I appreciate his precision so much.

He also removed some of the spitting stitches from Rocco’s old scalp scars, which was another little thing we were able to take care of while he was in surgery.

Dr. Bauer said Rocco was starting to wake up and was being a bit of a wild man. Shortly afterward, a nurse came to get me.

When I walked in, another nurse was standing and rocking Rocco. She handed him to me, I sat down and nursed him. He nursed for a minute or two and then became extremely agitated. I couldn’t console him. I felt pretty helpless. I was worried he was in pain, but the nurses reassured me that it was most likely agitation and confusion from coming out of anesthesia and that he had strong pain medication on board.

Still, watching your baby cry and not being able to make it better is one of the hardest feelings in the world. I couldn’t calm him down, and I could feel myself becoming overwhelmed emotionally. The nurse took him for a little while to give me a break. She stood there holding him and patting his bottom while he slowly started to calm down. And I broke down.

I felt worried. I felt helpless. I felt exhausted. But then he started settling, and I felt myself calming down too. We were eventually transferred downstairs to recovery, where we were cared for by another incredible nurse, Bri.

Downstairs, Rocky slept in my arms while they checked his vitals every hour. He was still fussy, but he was doing well enough to be cleared to go home. And honestly, I felt like he would be much more comfortable back at our Airbnb. We finally left the hospital around 6 p.m.

When we got back, Rocco ate three Hawaiian rolls and sat on my lap watching 101 Dalmatians. I took a shower while my mom and Papi took him for a little stroll around the neighborhood.He went to bed around 8:30 that night and slept in my lap. I “slept” too, although I’m not sure sitting upright counts as sleeping.

My mom and/or Papi woke us every three hours to give him either Tylenol or Motrin. Along with the pain reliever, Rocco is also taking an antibiotic three times a day until we get home. Once we are home, he will switch to a maintenance dose of Bactrim that he will take throughout the entire 10 weeks of expansion. He is also getting ear drops twice a day for four days. Lots of medicine. Lots of schedules. Lots of things to remember. And I quite literally would not be able to keep up with it all without my mom and Papi. To say I am thankful for them would be an understatement. The gratitude I have for them is endless. I will never be able to fully repay them for everything they have done and sacrificed for me and Rocky.

Rocco woke up the next morning (9/15, day 1 post op) looking and feeling so much better. Such a relief for my mama heart. I could finally breathe a little.

Papi, Rocky and I walked to Starbucks, which is only about a half mile from our Airbnb, while my mom worked. Later that morning, we went to our favorite French café for breakfast. It was a good morning. The rest of the day was mostly about keeping Rocky busy, distracted and calm.

The biggest challenge right now is the itching. He has bandages around his head while he has his drains in place, and the bandages seem to make the itching even worse. He has two drains,  one near each expander. We are constantly having to redirect his hands away from his head. And when I say itching, I don’t mean a gentle little scratch. He is full-on clawing at his head.

We tried arm restraints, but Rocky quickly figured those out too. He just uses his entire arm to itch instead of his hand, which obviously isn’t safe either because he could potentially pull out one of his drains. So we are keeping a very close eye on him at all times.

Wednesday morning (9/16, day 2 post op) was rainy, so we went to the mall and walked around before it opened. My mom stayed back again to work.Then we headed to the hospital for Rocco’s 10 a.m. follow-up appointment.

At the appointment, we ran into Kaia and her amazing parents again. They had an appointment right before us. It was nice seeing them again and knowing we already have another family here who understands exactly what this season feels like.

Rocco’s appointment went well. I did get a little triggered when they took his temperature with a forehead thermometer. A forehead thermometer isn’t always accurate for Rocco because his nevus runs so hot. He had also been running around the waiting room, fussing when we brought him back to the room, and was wearing all of his bandages, so I think all of that combined contributed to his temperature being around 100 degrees. Susan wasn’t concerned, which made me feel better. But I was still anxious.

I tend to get very much in my head and overthink every little thing, and after everything we went through during the last round, it’s easy for my brain to immediately go to the worst-case scenario.

A friend of mine — another mom whose daughter also went to Dr. Bauer for removal — gave me some really amazing advice that I am trying hard to remind myself of. She said** don’t let the fear of what happened last time overshadow this time.** This is a different round. And things can be different this time. I’m holding onto that.

After his appointment, Rocco took a very long, much-needed nap. He woke up happy and has been mostly feeling good ever since, other than the constant itching and pulling at his bandages.

This morning, (3 days post-op, Thursday, 9/18) my mom and Papi took Rocco out and about while I worked. I am so thankful for a remote job that allows me to take the time off that I need and also work when I can. I feel incredibly blessed by my company and the people I work with for their patience, understanding and flexibility during all of this.

It was another rainy, on-and-off kind of day, so we spent more time inside.One thing I really love about this Airbnb is the little deck in the backyard. When it isn’t raining, Rocco loves sitting outside blowing bubbles. So today, when the weather allowed, he spent some time out there blowing bubbles or strolling around the neighborhood in his stroller.

Tomorrow is Friday, and I am praying that Rocco’s drains have slowed down enough that they can be removed. It all depends on how much fluid is coming out overnight.

We will send Susan a picture in the morning, and if she gives us the “okay,” we will head back to the hospital to have them removed. If not, he will have to keep the bandages on through the weekend, which will be tough and uncomfortable for him. Whatever happens, we will make it work. But I am definitely saying some extra prayers tonight for less drain output and the ability to get those drains out tomorrow!

On Saturday, 9/19, Papi will head home and Uncle Jim will come out to join us.Rocco is going to be SO excited to see his Uncle Jimmy.

The plan for the weekend is to enjoy it as much as we can while keeping Rocky calm and comfortable. We will slowly wean him off some of his pain medication and hopefully continue seeing him feel more like himself each day.

Then Monday, 9/21, at 9 a.m., we have our appointment for his first fill And Tuesday, 9/22, we head home.

Meanwhile, Mike has been holding down the fort at home with Mikey. I miss those two more than I can put into words, and I know Rocco misses them too.Thank goodness for FaceTime.

I am so thankful for every friend and family member who has texted us, checked in on us, sent well wishes, worn their Rare Rocco shirts and prayed for our boy. We have felt every single prayer.

Our community continues to give me strength in ways I don’t think I will ever fully be able to explain.

This second round is already bringing its own set of emotions, but I am trying to remind myself to stay in this moment and not let the fear of the past steal the present. One day at a time. One fill at a time. And before we know it, these 10 weeks will be behind us.

As always, please keep the prayers coming for a successful second round, for Rocco’s health and comfort, and for strength for all of us. 

We love you, Rocky boy.