WE ARE DONE.
I can hardly contain my excitement. I will get into the story of Evan’s surgery but I want everyone to know that he is doing amazing. This kid bounces back so quick, besides the fact that his eyes are swollen shut, you would never have known he had ridiculously invasive surgery less than 48 hours ago.
SurgeryWe weren’t in any rush to get to the hospital like we were for surgery number one. We knew we would be sitting around for 90 minutes and didn’t think we’d get into too much trouble if we showed up a tad late. This goes against my nature, so in reality we were about 5 minutes late, so at the hospital shortly after 6am. We waited around like before, tried to keep Evan distracted (he ate at 2:55am and couldn’t have anything past that), and tried to stay positive. I remember feeling sick to my stomach before his first surgery but NOTHING like this. I had to give Evan to Jeff multiple times thinking I was going to be sick. Luckily, I was able to hold what little food I had in my stomach down, but my nerves were just out of control.
Around 7:15am, Dr. Bauer came in to see us and check out Evan’s bubble in person before surgery. He was impressed and seemed to be very pleased with the results. He also had another doctor with him who asked us for permission to take some of Evan’s nevus and send it to a lab at Children’s in Pittsburgh where they are conducting a long term study on congenital nevus. I asked how it would survive, as my high school level biology education would make me think if they remove the birthmark and its cells, they would die upon removal from their host site. Well, apparently anything can live on ice and the doctor explained that they would overnight his nevus to keep those cells alive. The hospital in Chicago would also be running tests on the birthmark to ensure it is benign.
Next thing I knew, we were headed to the operating waiting room with Evan. He was SO brave, and I just kept telling myself to hold it together and to not let him sense my fear and anxiety. I think I did pretty well, but of course, the second I gave him to the nurse, I turned around to head toward the waiting room and was once again hysterical. I avoided looking back this time because that would have put me over the edge.
Dr. Bauer told us Evan’s surgery would take about 1.5 hours. He overestimated the time for surgery number one, so I guess I assumed he’d do the same now. Evan is still exclusively breastfed, and I remembered how he wouldn’t nurse but took quickly to the bottle post surgery #1. Given how long it had been since he ate and when he’d be out of surgery, I headed down to the women’s center to pump. That way, when Evan woke up, we’d all be good and comfortable.
When I was gone, Jeff got the call that Evan was in surgery around 7:50. I was surprised it took so long but figured we’d be absolutely done by 9:30. Then, waiting…waiting, and more waiting. Lots of games on our phones and lots of texting. It was 9:45 and nothing…then we started to get worried. The waiting room has a screen that shows all patients (by ID number, not name, of course), surgeons name, surgery time, and current status. Dr. Bauer showed another surgery at 9:30, and that patient’s status stated they were in pre-op. It was close to 10 before Dr. Bauer and his doctor-in-training Dr. Dickey came by.
They told us it took a little longer than normal but no nevus removal is ever the same. He told us he was able to remove all of the birthmark (YES!!!!!!!!!!) and highly doubted the need for another surgery to align the eyebrows. We were SOOOOOOOOOOOOOOOO happy and I just wanted him in my arms. He said he put in two drains this time because there was so much skin where his bubble was that he wanted to make sure it drained ok. After another 20-30 minutes of waiting (aka eternity), we were finally allowed to see Evan. He had the same head dressing, two drains and he was fast asleep. We tried waking him up but like before, he screamed as he came out of being under. We were put into a private room much quicker this time, and for the first 20 minutes (again, eternity), Evan was NOT happy. I had no idea what to do, I felt so helpless, and he seemed to be in so much pain. I know he was just coming out of being under, and he was probably sore, but I had no idea what to do. Jeff and I went back and forth trying to calm him down. He wouldn’t take his bottle at all so my only hope was that he would nurse and just like that, he calmed down and ate like a champ.
Evan’s mood was up and down for a few hours, but he was eating and had wet diapers, which was good enough for the nurse to let us go home at 2pm! We were a little weary but not concerned as we felt much more comfortable with all of this the second time around. His drains would need to be changed every 4 hours, and Tylenol/Motrin every 4 hours as well. I figured he’d sleep much better at the hotel than at a loud hospital.
We got back and all took a nap, and it was wonderful. Evan was still a little uncomfortable but we tried to make sure he was ahead of his meds. Unfortunately, the day of surgery I woke up with a terrible sore throat. It is now all in my sinuses so I’m thinking either my 3253th sinus infection of just a head cold. Jeff totally stepped up at night, however, as I didn’t want to give Evan any germs, but more notably I needed sleep to get over whatever I am fighting.
TuesdayWe took Evan to see the nurses today and to reveal the results of surgery. I was so nervous but also very excited to see the masterpiece. I was shocked. I will show pictures below but they truly do not do justice. Dr. Bauer did a fantastic job, and I will forever be grateful for his work. I never doubted coming to Chicago for the best doctor, and after seeing the results, I am one thousand times certain we did the right thing. Evans eyes are pretty swollen, actually very swollen to the point where he can hardly see. He looks completely different and it is kind of funny and sad at the same time. His demeanor is great, and I’d say by Tuesday night, he is at 90-95% himself. He is eating milk and solids just like normal Evan, and tonight he started clapping his hands. This is such a small milestone but we think it is the coolest thing he has ever done, especially because he does it in response us clapping or telling him to clap.
Evan’s drains have very little output, which is great news. The nurse was hesitant to take them out just 24 hours post-op, but said it would be unlikely for them to suddenly start filling up and by tomorrow afternoon we could probably have them removed. Our plan is to go back to the doctor’s office tomorrow afternoon to have his drains removed. He may still need the head getup to protect the new skin and keep things moist. The nurse said it would take a few weeks for the skin to “take”. He has dissolvable stitches along his browline and stitches that will need to be removed zigzagged
throughout his head.
The plan is to leave Chicago early on Thursday. There is a storm that is threatening the Midwest, so we will have to plan our trip around that. Originally we had planned to stop in Streetsboro, Ohio, which is roughly the halfway point. However, if this storm tracks accurately, it will basically be following us home. I am terrified to drive in inclement weather, and will be even more scared with Evan on board. We will see how things go and will do the trip in a day if it means avoiding getting stuck in a storm.
The pictures really don’t do justice as I mentioned before, and Evan is doing awesome. We are so happy this journey is coming to an end. His scar will need to be massaged (once it has healed) multiple times a day for about a year. He will always have a scar, but I plan on telling people, and having him tell people that he got bit by a shark. The ladies will love that.
Thanks again to everyone for your love and support. It brings tears to our eyes the amount of texts and calls we got and continue to get to check up on Evan. No parent should have to see their children in pain but we lean on each other for support and it truly has helped us through this small chapter in Evan’s life.
The bean!
