Surgery #1 to place expanders

​My mom, uncle Jim, Rocky and I landed in Chicago on Monday, March 2nd. We grabbed a bite to eat then headed to the hospital to meet with Dr. Alkureishi and Susan (the surgical nurse for Dr Bauer and Dr Alkureishi). When we came for the consult in October, we did not get to meet Dr Alkureishi so it was so great to meet him prior to surgery day. My stomach was in knots that entire day. I was feeling so anxious. I kept telling myself “don’t think, just do.” We stopped by Target to grab some essentials. In Target, a song that my mom used to sing to me when I was a little girl started playing. I don’t think I’ve ever heard this song on the radio. She looked at me and said “Everything’s going to be okay.” In that moment, I imagine God saying “wink, wink.” We checked in to our Air Bnb later in the evening. I gave Rocky a bath and bottle, and rocked him to sleep. I called and talked to my friend Jess who gave me a much needed pep talk. then I went to sleep. We were exhausted from the long travel day. 

Since we had our pre admit appointment on Monday, we were able to truly enjoy our day on Tuesday. We started with Starbucks of course, then went to a breakfast spot and ate a yummy breakfast. The waitress loved Rocco. Then Rocco took a nap and we headed to the Brookfield Zoo. We practically had the whole place to ourselves. We saw so many beautiful animals. Rocco loved chilling in his stroller and looking at everything. I loved spending this time with him. The rest of the day we just relaxed. As night time approached, nerves started creeping up again. I gave Rocco a bath,  bottle, rocked him to sleep, listened to my Hallow app, then fell asleep. 

We woke up on March 4th at 5:15am to be at the hospital at 6:30am. Uncle Jim dropped off me, my mom, and Rocco. We got all checked in and met Nurse Jennifer. She was amazing and Rocco was really drawn to her. He started getting fussy. He was starving because he had been fasting since midnight. Lots of nurses and medical staff came by. I think every single person commented on how much they love his name. The anesthesiologist met with us to go over everything and ask some questions and answer mine. Then Dr Bauer came by. He explained that since Rocco has had a few recent ear infections they are recommending putting tubes in while they have him under. This reduces the risk of ear infections causing that could cause the expanders to get infected. I wasn’t expecting this so it threw me a little at first, but it makes complete sense. So then, an ENT met with me and explained that procedure. By this time Rocco was over it. Hangry and tired. They gave him a little something to take the edge off which helped tremendously. Just before 9am we parted ways and Rocky’s procedure started. 

We waited for about 2 hours and then I got a call saying he was out. Dr Bauer and Dr Alkureishi came to me and said it went very well. Rocco did great. They said they were able to excise the portion of nevus that was putting pressure on his eye. They also placed 2 expanders, one in his forehead and one near the top of his head. After talking to the surgeons, a nurse took us back to recovery to see him. 

When I saw him in recovery I did not even recognize him. Actually, I almost walked right past him. His face was swollen and he was screaming and fighting the male nurse, whose name happened to be Mike (another God wink). Seeing my baby like this was rough. I held him, sang to him, and gave him a bottle which he downed. We were then moved out of recovery into a room. 

In the room, Rocco was pretty much hysterical unless he was asleep. Nurse Mike taught me how to change his drains which I have to do every 4 hours and Susan taught me how to change his head dressing which I’ve done once so far because he pulls at it. We were discharged that evening around 5:30pm once he finally peed. 

Uncle Jim picked us up. It was raining and so cold. We went back to the Air BnB. It was a scary, sad, and terrible night. Rocky was in pain and discomfort and was only calm if he was asleep. Every 3 hours we alternate giving Motrin and Tylenol. It felt like as soon as we got him comfortable and asleep, I had to give him meds again. He’s also on an antibiotic that I give 3 times a day and ear drops that we do 2 times a day. It’s a lot. No one slept. 

That brings us to today. March 5th, one day post op. Rocky is already improving! Each hour he’s becoming more and more himself. We went on a few walks. The sun even came out! He’s still experiencing discomfort, but we are controlling the pain. I gave him a sponge bath this evening and now he’s laying on my chest. Rocky is so strong and resilient. I know that even though everything he is going through right now is so hard, it’s the best thing for him. Being so young, he won’t remember it. 

Tomorrow is a new day. I’m praying for continued improvement, the swelling to reduce, and for Rocky’s comfort. 

Our community and village of family and friends back home have given me so much strength. I am so thankful. 

Next up we have an appointment tomorrow for a dressing change. Then, either Monday or Tuesday, (depending on drain output) we will have an appointment to get his drains out. Then on March 16th we have an appointment to learn how to fill the expanders and his first fill. 

Uncle Jim heads home this Saturday and my papi will be coming up and staying for the week. Then my mom and papi will leave the following Saturday, and Mike and Mikey will come out.

I miss my boys so much. Mike is at a big conference for his new job, and Mikey has been staying with my papi, my sister Maria, and my in-laws. It truly does take a village, and I’m so thankful for ours.I’m also very thankful for FaceTime. Rocco immediately smiled when he saw Mikey. I know he misses his big brother and his daddy.

Thank you for the prayers. They are helping. This is hard, but we can do hard things.

Please keep Rocco in your prayers as we continue through this next part of the journey. We are trusting that God is walking with us every step of the way.

Love,

Jenny