A “rocky” start to April

​Rocky boy turned ONE on Thursday, April 2nd. We got Chick-fil-A breakfast and then spent the day playing with toys and at the playground with friends. We also went for a nice long walk/scooter ride. After dinner, we sang Happy Birthday, Mikey helped Rocco blow-out the candles, and we ate egg-less cake baked by yours truly— which wasn’t actually too bad. It was an easy, but special day. I was beginning to feel more comfortable as time passed by. Rocco was doing so well. The only thing I was really kind of weary about was the way his forehead stitches were looking. They seemed pink and a little irritated. I sent pictures to Dr. Bauer and his team and they assured me that they looked okay. Dr. Bauer’s nurse, Susan told me that sometimes when they are right on the border of the Nevus, they can look “funky,” but from the pictures they looked fine. 

We planned to have a bigger birthday celebration for Rocco at our Easter Dinner on Sunday, but things changed quickly.

A few days later, on Saturday morning (4/4), we did a fill so that we wouldn’t have to worry about it on Easter Sunday. The fill was a little stressful, because Rocco was more fussy than usual, but we ultimately got it done. A few hours after the fill, Rocco felt warm to me and still a little fussy. I took his temp and it was 100.4.

I texted Susan, but since she was out of town she told me to call Dr. Bauer. I called Dr. Bauer and he said let’s just monitor him for the day and give him some Motrin since it was still low-grade. He said it may be a good idea to get him started on an antibiotic as a precaution to protect the expanders from infection. We went about our day, the Motrin helped. Around 5pm I thought its probably a good idea to get the script called in now since tomorrow is Easter, just so we have it, even if we don’t end up needing it, at-least I’ll have it. Plus Rocco has also been having a runny nose and there were some cold symptoms going around his daycare that week. Dr. Bauer agreed. Then it was a rush to get it before the pharmacy closed at 7pm. I was feeling stressed and so worried about him being sick. 

Our pharmacy was amazing and had the meds ready so quickly. I felt relieved I had them and the plan was to wait and see how he does over night before giving him a dose. 

Later that evening, at 7:30 pm, Rocco was playing when he tripped over a toy and bumped his head in just the right spot with just the right amount of force to break his forehead stitches. The sutures popped open and his forehead expander was exposed. I was panicked, terrified, and in shock. I couldn’t believe it. I quickly called Dr. Bauer, who answered on the first ring. I told him what had happened and he told me that, believe it or not, over the next few days the expander will fall out on its own and the wound will close on its own. He advised me to cover the wound with gauze and wrap his head in a loose dressing. He said go ahead and start giving the antibiotics I just picked up. 

Bauer was calm. He said it’s rare, but these things happen. He told me he could count on one hand how many times this has happened in his long career of doing this, but it has happened. He reassured me that although this is not ideal, that it won’t impact the end result for Rocco. He said we would need to re-expand the forehead on a future round of expansion and since Rocco is predicted to have 3 rounds, it will get done. 

Bauer instructed me on what to do when it falls out. He told me to clean/sterilize scissors and have them ready, because when the expander falls out, I need to cut the tubing that’s attached as close as I can to the skin. From there, use a new piece of gauze to cover the wound and let the wound close on its own over the next couple of days. Mmmmkay. 

I didn’t sleep that night, and I really haven’t slept since this all happened. My stomach was in knots. I couldn’t eat. I was a mess. And to add to everything Mike had to leave Monday to go out of state for work until Friday. So thankful for our village who stepped up to care for Mikey, give him extra TLC, help me with Rocco’s care, sent dinners, checked in on me, and more. A huge shout out to the moms who have gone through tissue expansion with their kiddos and reached out to me with encouragement, advice, and love when I posted on our Facebook group page. 

In order to keep Rocky from touching the head bandages and pulling at everything, I put arm restraints on him, which he hates. He was miserable, but also somehow still smiling. My super hero. Remarkable Rocco.

By the 4th day (4/7) of having the expander exposed it was almost already half way out. I sent a picture to Susan. She was back in town. I called her and explained how miserable Rocky is. I’ve been sleeping in a recliner with him to make sure he doesn’t pull on or tug at the area in his sleep. Since he sleeps on his face, I didn’t feel comfortable putting him in his crib. 

I asked Susan if there was anything I could do to speed up the process of the expander falling out. She described how I could go in through the port and expel some of the saline with a syringe and from there see if it would slide out easier. Susan could definitely sense my unease. My stress. My heartbreak. All of it. She asked— do you have a local plastic surgeon? I quickly said we do! 

I gave her Dr. Raj’s number. He’s an amazing plastic surgeon here in Orlando that we initially met when Rocco was in the NICU. We have seen him for a few appointments regarding Rocco’s plagiocephaly when he was really little and Dr. Raj helped us through all of that. Dr. Raj was there for us in the very scary early days and told us we were a part of his family now and that he’d always be there for us. An angel of a human. 

Susan called Dr. Raj, told him what was going on. She asked if he could help us, and he was more than willing. Soon after that, I got a call from Dr. Raj’s office asking if we could come in for an appointment that day at 2pm. Ummmm yes. 

At that appointment with Dr. Raj, he said it probably wouldn’t be ideal to remove the expander there in the office, but that he recommends doing it in the OR with Rocco under anesthesia so he doesn’t feel pain/discomfort. Then he would be able to clean out the wound and close it. I agreed. He said after talking to the team in Chicago, it was also recommended he take the Rocco’s scalp sutures out since they were looking crusty and to shave Rocco’s head to keep hair off of all incisions. I told him to do whatever Bauer’s team advised. 

The next morning (4/8), my mom and I woke up at 5:15am to be at the hospital at 6am for Rocco’s 8am procedure. Finally, my sweet Rocco would get some relief from this discomfort. Dr Raj came in and saved the day. I am so extremely grateful. 

The procedure went well. It was quick. We were home by 12:30pm and Rocco quickly returned to his happy, playful self. My friend Jess came over and I was able to eat lunch and take a shower! 

Now, it’s Saturday. A whole week since the expander became exposed. Three days since having it surgically removed. Everything has calmed down. Rocco is basically back to his normal self. Still on the antibiotics though. Mike is home for the weekend. We’re making sure to keep the incisions clean. 

My body and brain still feels like it’s in fight or flight though. I’m still anxious, on edge, and I think still a little in shock. I know I need to move forward. We are still in the beginning of this process and have a ways to go. I need to regain my strength, confidence, and keep going. This happened, it sucked, but it’s been resolved. That’s a relief. 

We won’t fill the scalp expander this week, since Rocco has been through so much. But will get back to filling it the following week once Dr. Bauer gives us the go ahead. 

Through this setback, I’m clinging to the reassurance Dr. Bauer gave me that the end result will be the same and this won’t impact anything. 

God is carrying us. He always has and always will. 

Please continue praying for our family, especially for Rocco. Thank you for rooting for Rocco. 

Love,

Jenny