First Fill

This morning we woke up to a winter wonderland. Snow covered the ground and just about everything else outside. Mikey was in awe. It was his first time ever seeing snow.

We ate breakfast, and Mike went out to clear the snow off our car and make a little walkway so we could get to it. Then it was time to apply the numbing cream to Rocco’s expander ports before the fill. I had been told to glob the cream directly onto the ports and then wrap his head with Saran Wrap about an hour before the appointment.

So we did just that, and then headed to the hospital for the outpatient visit. It was me, Mike, and Mikey. Mikey was so well behaved the entire time. I was so proud of him. And of course, our star of the show, Rocco, was an absolute champ. Mike was a huge help and such a calming presence because mama was nervous (and a little sleep deprived!).

To put it simply… it was overwhelming. There were so many medical supplies and directions. It was a lot to take in. Susan (Dr. Bauer and Dr. Alkureishi’s nurse) was so patient with me and beyond helpful. She walked us through everything. She showed me how to prep all the medical supplies. She showed Mike the best way to hold Rocco. Then she walked me through how to insert the needle into the port of the expander and slowly push the syringe of saline through.

She filled the first expander, and then she had me fill the second one.

For me, inserting the needle down far enough was the hardest part. It took me two tries to get it in, but Susan reassured me that this is extremely common the first time someone learns how to do the fills. She said 8 out of 10 people don’t push the needle in far enough at first. Gahhh. I’m praying that over time my confidence will build and this will get easier.

Rocco sat comfortably in Mike’s arms the entire time while another nurse held up Ms. Rachel videos for him and Mikey fed him snacks. It was truly a team effort, and it will probably be a 3–4 person job each week when we get home.

I’m so relieved that Rocco tolerated the first fill so well, and I’m praying that he continues to do just as well each week.

Since the boys did such an amazing job during the appointment, Mike and I took them down to the indoor playground and basketball court at the hospital afterward. Then we drove back to the Airbnb, ate lunch, and all took a nap.

Later in the day we took the boys to a toy store and a candy store. Mikey was all about it. He said he loves Chicago, although he’s not loving the cold 🤣. Rocco, on the other hand, seems to love the cold.

Since being here and going back and forth to the hospital for appointments, we’ve met two other families who are also going through tissue expansion with their babies. One is a little girl around 13 months old who has a very similar scalp nevus to Rocco’s and she actually had surgery the same day as him. The other family we met today has a 7-month-old baby girl with a nevus on her back.

It brings me comfort knowing that other families are walking through this experience at the exact same time.

Tomorrow we head home. I’m excited, but I would be lying if I said I wasn’t also nervous. I’m trying to take things one day at a time. I know God is walking with us every step of the way, and I’m doing my best to keep placing my trust in Him.

One fill down, many more to go. With God leading the way, we’ll keep taking this journey one brave step at a time.

Love,

Jenny