Weekend in Chicago

We survived the weekend in Chicago with Evan post surgery. Saturday night he did REALLY well, slept about 13 hours without needing to eat or take pain meds! We were shocked!! We decided to have him sleep with us vice his pack-and-play as we wanted to make him feel more comfortable. It is so hard to not know what these little ones are thinking. Anyway, he didn’t seem cranky until Sunday and Monday. He hasn’t slept very well since Saturday but the nurses said that is normal. He cries but isn’t fully awake, so who knows. Maybe he is having nightmares, which I have heard is a side effect of anesthesia, despite our anesthesiologist saying that wasn’t the case. He is DEFINITELY teething as well, sooo much more slobber and he seems crankier, so maybe the perfect storm.

We took Evan to the Chicago Aquarium today. I think he loved it but Jeff said he seemed more interested in the lights above than the creatures in the water. There was a jellyfish exhibit running and I figured the bright lights would have him in awe. We also saw Beluga whales but Evan seemed to be most interested in the sharks.

Not sure what else we will do this week. Our original plan was to get his first fill Friday, as well as his drain out, and head home Saturday. The nurses called today and said if his drain is looking empty by Thursday morning, we could come in then. They can take it out and do the fill then…and we could possibly be on the road home Thursday late morning. That would be awesome. We plan on stopping by Jeff’s grandma’s gravesite in PA and could use the extra time. However, Evan has a bit of a runny nose, which based on prior conversations, could DELAY the expansion. Jeff and I are hoping by Thurs/Fri this cold passes and we stick to our plans. Fingers crossed!!





















Fish with forehead expanders!

Surgery

I am way behind on this blog as I started it late!

Evan had his expander placed underneath the “good” side of his forehead on Thursday. We had to be at the hospital at 6am for surgery at 7:30. During his pre-op, Dr. Bauer said it would take about 60-90 minutes which I knew would feel like a lifetime.

Ever since having Evan, our timeliness has been lacking, so we had to ensure we arrived a few minutes before 6am to avoid being late. We were there a few minutes before 6, and went to the ambulatory services division of the hospital and basically sat around with Evan. It was hard because he was soooo happy and I felt bad for what he was about to endure.

Right at 7:30, we headed to the pre-op area. It was madness…doctors and nurses everywhere, people running around, patients in beds all looking doped up, it was just crazy. Everyone stopped to comment on how cute Evan was and it helped take my mind off the fact that I felt like I wanted to vomit, scream, and cry all at once. Next thing I knew, the nurse took Evan and they headed back to the surgical unit. To this day, it was the hardest thing I’ve ever done (yes I’d take 12 hours of contractions over that feeling!). Evan looked back at us over the nurses’ shoulder and I just lost it and hysterically found my way to the surgical waiting room.

Jeff and I quickly got coffee and when we got back, the phone rang, and the receptionist said it was for us. My heart stopped, but luckily it was a nurse letting us know that surgery had started. We were sitting there, letting our family and friends know that he was in, and trying to find ways to keep occupied. We talked to a couple who lived in the area and were soooo nice. Their daughter was having minor surgery. They were telling us about Chicago and even offered to have us over for dinner, as well as a stay in their home in December when we plan to come back for surgery number two! We plan on contacting them this week to see what they can suggest for some sightseeing.

Evan’s surgery only lasted about 45 minutes. Dr. Bauer said everything went great and he was in recovery and that we could see him shortly. SUCH relief! We headed back and there he was, sleeping in a nurses arms, all bundled up with a big getup on his head. I immediately grabbed him and he would cry every now and again as he woke up. It took over an hour to see his beautiful eyes (eternity) and he was still very groggy as he woke up. I tried nursing him but he wouldn’t have it. I decided to pump as he can be lazier with a bottle and it worked. He guzzled down 3 ounces in no time! We finally got a room a few hours later and he still seemed quite uncomfortable. There were lots of snuggles, lots of nursing (he finally ate) and lots of hugs and kisses. That first day was soooo rough and I hope no one ever has to go through it. But if you do, just know that they DO start feeling better and you just have to be patient.

We were released from the hospital early Friday. We could have left Thursday but wanted Evan to be closely monitored as this was his first surgery and Jeff and I didn't know what to expect. He was up a good bit of the night crying, but would settle after nursing and/or pain meds. By Friday morning he was his good old chipper self and we were so happy. We hardly slept (Jeff and I shared a hospital bed and Evan had a hospital crib) but I’m glad we stayed. The nurses were all amazing and they truly seemed to care about Evan’s wellbeing.




Happy right before surgery.


Right after surgery.



Afternoon...

Evan Robert Gill

I toggled with the thought about writing a blog, mostly because I wasn’t sure if I would be able to keep up with it. A few friends and family members suggested it as well, and I realized it would be a great idea to not only keep them informed on Evan’s progress, but also to educate other parents who might not know much about congenital nevi.

Evan was born on Thursday, March 29th around 3:30pm. I remember my midwife commenting on a birthmark, stating, “these are normally on the back of the head”. I didn’t think much of it as I was elated to have this beautiful healthy boy in my arms, plus, the lights were relatively dim and he was full of slime and his skin was rather purple. Jeff and I had never seen this type of birthmark, nor did we know anything about the associated risks. We spent hours studying what the birthmark was, and were trying to mentally and emotionally prepare ourselves for a life of explaining to Evan why he was different. It wasn’t until the hospital pediatrician told us it would need to be removed, later realizing it does carry a risk, albeit small, of turning into malignant melanoma.

Our removal journey began when Evan was just six weeks old. We met with “the” children’s dermatologist who diagnosed him with a congenital hairy nevus. We were told that the chances of his birthmark becoming malignant were roughly 5%, which we had previously read. With such a small percentage, we talked about leaving it and feared removal would leave an unsightly scar, but we worried about that small percentage as well as physiological impacts. Our next step was to meet with 3 of DC’s best pediatric plastic surgeons. Each surgeon suggested a different path for removal; serial excision, tissue expansion, and skin graft. All doctors (including his derm) said to absolutely avoid the latter, but the doctor who recommended it was top rated and had an incredible resume. We left each appointment with high hopes, only to be confused when the opinion changed at the next visit. We continued our online research (dangerous) and I came across a blog from a mother who had a daughter with a facial/scalp nevus. I read this blog in the hospital shortly after Evan was born but had forgotten about it. I reached out to her directly, and she pointed us in one direction – Dr. Bauer, located in Chicago. The more research Jeff and I did on this particular doctor, the more we realized that he was not only the best in the US, but notably the best in the world. And best of all, he did email consultations. I sent him a picture of Evan and got an immediate response. He explained to us why skin graft would be a poor choice, and explained why tissue expansion would be the way to go. Next thing I knew, we booked Evan for surgery in late September with a second surgery the following December. The waiting game began!