First Fill at Home

We are home and slowly getting back into our routine. It feels so good to be here—in our own environment, surrounded by our people. Rocco is doing incredible, pretty much unfazed by the growing “balloons” in his head. It’s truly amazing to witness. Mikey has been such a sweet big brother and the best little helper. He’s definitely happy to have us all back home together.

This morning, we did our first fill at home. I won’t lie, it was nerve-wracking. I was so afraid of messing something up. I had been watching the videos from last week’s hospital fill on repeat, trying to make sure I felt as ready as possible. Then I realized I didn’t have any videos showing how to prep and set up all the supplies. Thankfully, I had been messaging another mom whose daughter had her nevus removed with Dr. Bauer over 12 years ago, and she just so happened to still have videos of the prep process. She sent them to me, and it was exactly what I needed.

I feel so blessed to have connected with other moms who have walked this same road. Some just a few years ago, others over 20 years ago. It really feels like a little support group, and I’m so grateful for them. They offer guidance, encouragement, and a level of understanding that only comes from living it.

This morning, as soon as Rocky woke up, we loaded his ports with numbing cream and wrapped his little head in Saran Wrap. My mom and Papi came over, and we all fell into our roles. My mom helped me prep everything while we followed the videos and instructions. Papi kept Mikey busy, and Mike stayed on Rocco duty, making sure he didn’t pull anything off.

Once everything was ready, Mike held Rocco while I started the fill, and my mom held up Ms. Rachel on the phone for distraction. On the outside, I stayed calm, but inside, I was so nervous. I worried about finding the port perfectly and making sure the needle was placed correctly. But… I did it.

Rocco was an absolute champ.

I filled his forehead expander with 10cc. We were aiming for 15cc, but he started crying when I went past 10, so I pulled back a bit. It was wild how tight his skin felt. After that, I took a deep breath and moved to the scalp expander. I was able to get 25cc in, and he tolerated it so well—completely distracted by Ms. Rachel.

And just like that, it was done.

From start to finish (prep and both fills) it took about 30 minutes. Rocco was completely fine. We finished at 9:35am… and made it to Mass by 10.

I felt so relieved and so proud that it all went smoothly.

Moving forward, I think we’ll do fills on Sundays. Mike is always home, and I know having him there makes such a difference. He keeps Rocco comfortable and steady, and his calm presence helps ground me in those moments.

Also, we are currently selling Rare Rocco shirts for $25. All money raised is going to his future surgeries. At this time we have adult sizes (Small - 2XL). Right now we are only doing local meet up/pick up. If you’re interested in purchasing a shirt, text me or send me a message on Facebook or Instagram. We’d love to see everyone repping our little guy and we are so grateful for the support. 

We walked into today with nerves, but walked out covered in grace. I am so thankful for God’s steady hand over every step. 

Love, Jenny