​Expander Removal Surgery & Reconstruction

The time has come!!!! My mom, my uncle Jim, Rocco, and I left for Chicago bright and early on Monday, May 18. With Rocco’s expander fully expanded, people were staring hard in the airports. Not in a mean or malicious way, but more in a curious, empathetic way — at least I think so.

On our flight, the flight attendants were so sweet. They asked what was bringing us to Chicago, so I told them about Rocco’s surgery. Before we got off the plane, they came over with a handwritten note signed by the flight attendants and pilots, along with two bags filled with goodies for our stay. The gesture brought me to tears. It was so thoughtful and kind.

Once we landed, we got our luggage and rental car, headed to lunch, stopped at Walmart for some essentials, checked into our Airbnb, took Rocky for a walk, and then called it a night.

The next morning (5/19), we kept Rocky busy with walks, swings at the playground, and bird watching until it was time for his nap. We had his pre-op appointment at 1:30pm.

The pre-op appointment was pretty straight forward. We met with Nurse Susan, who answered all of our questions. She told us to plan for the next round of expansion sometime in September or October. For the rest of the day, we took it easy, had an early dinner, and headed back to the Airbnb to rest. 

That night, in the middle of the night, Rocco threw up a little. It was kind of weird, but he only did it once and seemed fine. I planned on letting the nurses know before surgery, but it felt like an isolated incident and maybe something just didn’t sit well in his tummy.

The next morning (5/20), we woke up early to get to the hospital by 7am. Rocky was NPO and definitely not happy about it. We kept him distracted by walking around the hospital whenever we could. The nurses, anesthesiologist, Dr. Bauer, and Dr. Alkureishi all came to meet with us beforehand. Dr. Bauer explained that they would be removing the expander, excising the bottom portion of the birthmark where it hangs over his neck, and using the expanded skin to cover the area. They want to wait until a future surgery to remove more from the side of his face.

By 8:30am, I handed Rocky off to the nurse and he was headed into surgery. We received updates throughout the procedure that everything was going well.

While we waited, we livestreamed the St. Mary Mag school Mass. That felt especially meaningful because many of the teachers and our principal were wearing their Rare Rocco shirts. Fr. Chris said a special intention for Rocco and our family, and my nephew Liam was playing the drums. It was such a comforting reminder that we were being carried by prayer.

About three hours after handing Rocco off, we got the call that he was out of surgery and we could see him. Dr. Bauer and Dr. Alkureishi came to talk to me and said he did great. They were pleased with how much they were able to remove, especially considering we lost an expander. They said this was a good start and that they are in a good position for the next expander placement.

When we walked into recovery, Rocco was laying in the crib drowsy but awake. The second he saw me, he started whimpering, so I immediately picked him up and started nursing him. He fell back asleep while nursing.

Our recovery nurse, Livia, was wonderful. She was such a calming presence for me. She explained that they gave Rocco medication to help calm him down after surgery because he was very agitated when he initially woke up. I could tell it helped keep him calm. It was completely different from his surgery in March, when he woke up screaming and extremely agitated, so I was very grateful they addressed that proactively this time.

After some time in recovery, they said we could be discharged if we wanted. Honestly, I didn’t feel comfortable leaving yet, so I asked if we could stay a little longer. They moved us to an inpatient room where another wonderful nurse, Kirsten, took over our care. Susan also came in to check on things. Rocco’s drain was leaking through the gauze and head dressing, so she changed it. That was when we really got to see how much they were able to remove. The “rolls” — for lack of a better word — on the bottom are gone. That area has been a huge source of itchiness and discomfort for him, so having it removed will hopefully bring him some relief. — see before and after photos below. 

Before ^

After^

Although a drastic amount like we were expecting to have with two expanders was not removed, we are one step closer. I trust Dr. Bauer and Dr. Alkureishi deeply, and I appreciate how intentional they are. They are not just trying to patch things together to remove more tissue quickly. They are incredibly detailed and thoughtful about the direction of hair follicles, scar placement, and long-term outcomes.

This is a process. And I’m reminding myself constantly to trust the process, trust the doctors, and most importantly, trust God.

By 3:30pm, Rocco was ready to be discharged, and this time, I felt comfortable leaving. We headed back to the Airbnb and took Rocco for a walk for some fresh air. He was doing really well and, compared to the March surgery, was a million times better. We alternated Tylenol and Motrin every 3 hours and changed his drain every 4 hours. He slept decently. Things were going great. What a relief.

The next morning (5/21 — day 1 post-op), he was in good spirits. Fluid around the tubing of his drain was still leaking out and soaking through the gauze and head dressing. I texted Susan and she said it wasn’t a concern, just to keep reinforcing it with gauze.

That morning, we went into town and ate breakfast at the French café we like. Rocco loves to munch on a little French baguette from there. We walked around for a bit, then went back to the Airbnb for a nap. Rocco slept a solid two hours. He was doing well — happy, energetic, and wanting to get out.

We decided to go to downtown Chicago, which is about a 20-minute drive from where we are staying. It was such a beautiful day. We saw The Bean and ate dinner at a restaurant. Rocco was happy to be out and about, chilling in his stroller, people watching and bird watching.

We left about two hours later. When we got back to the Airbnb, we relaxed and got ready for bed. Rocky chugged his bottle, watched 101 Dalmatians, and then I was getting ready to put him down when he started projectile vomiting. I immediately got nervous and started thinking worst-case scenario, but then remembered he had chugged his milk. It probably just didn’t sit right. I also remembered he threw up the night before surgery, which was also likely from the milk he had… we threw out the milk. 

He was uncomfortable all night. We slept on the couch most of the night. It was rough. It’s hard when you think things are going well in terms of healing and recovery, and then things take a little turn.

The next morning (5/22 — 2 days post-op), Uncle Jim went back home and Papi flew in. Rocky still wasn’t himself or doing as well as he had been the first day after surgery, so I was definitely concerned. 

When he took a nap that afternoon, I skipped a dose of meds because he was sleeping so peacefully, thinking I would just give it to him when he woke up. I really wish I hadn’t done that because he was pretty miserable when he woke up. He was warm with temps between 99 and 100.6, clingy, fussy, not eating much, and started having very loose stools. I texted Susan and she told me she wasn’t worried about those temps, which gave me some peace. She said to get back on track with alternating the Motrin and Tylenol every 3 hours. Once we did, we could slowly see his spark coming back.

Lesson learned: he needs to be woken up for meds no matter how peacefully he’s sleeping — sorry, bud. Staying ahead of the pain is important.

The rest of the evening was all about keeping him comfortable and calm. Thankfully, he slept well that night.

Today — Saturday, 5/23 (3 days post-op) — he woke up happy and with an appetite. My mom and Papi got up with him and fed him breakfast so I could sleep a little longer. I needed that.

Then we walked to Starbucks and later drove into town to the French café we like. I texted Susan because with changing his drain every 4 hours, we were starting to run low on supplies. I have an appointment with Dr. Raj (our local plastic surgeon) on Tuesday when we get home for him to remove the drain, but I was worried we didn’t have enough drain tubes to make it until then.

Susan texted me back and told me I should just do it myself.

After Rocco’s nap, I called Susan and she walked me through how to snip the stitch and remove the drain. It was easy… but not easy on a squirmy, screaming baby with my shaky hands and adrenaline pumping. But I did it.

I’ll still see Dr. Raj on Tuesday so he can take a look at everything and determine when to remove the sutures. Usually it’s around 2–3 weeks post-op. Until then, Susan recommends gently scrubbing the sutures with baby shampoo and gauze during bath time, keeping hair off of them, and not letting Rocco scratch at them. I’ll probably keep a light dressing over the incisions until the sutures are out to help prevent scratching. We’ll see how that goes.

We’ll stay in Chicago until Monday, then head home that morning. Rocco will stay home for 2–3 weeks to heal before going back to the ELC.

I’m looking forward to a summer with no expanders.

This has been hard, but I know it will be worth it. I absolutely could not do this without my family and friends, but especially my parents and Mike.

Please keep Rocco in your prayers for continued healing and recovery. I can’t wait to get back home to my Michaels. I can’t wait to feel a little more normal over the next few months.

Thank you all for checking on us, praying for us, and supporting us. I loved seeing everyone rocking their Rare Rocco shirts! Every picture sent made me smile and lifted my spirits.

Keep an eye out on social media for Rare Rocco shirt sales in the coming weeks! 

No matter how hard this journey gets, Rocco continues to remind us what resilience looks like. His joy, strength, and sweet spirit carry us through the hardest days. Our friends, family, and community have kept us going. Thank you all for loving our boy. One step, one surgery, one prayer at a time. 

Love, Jenny