Chris, Ivy and I flew to Chicago on Thursday morning, September 17th. It was hard to leave our boys knowing we would be gone for so long. Our middle boy struggled the most with our being gone. My parents came up to stay with the boys during this time. Our flight was uneventful thankfully. If you know me, you probably know that I dislike flying. It's a bit embarrassing as I am a therapist and work with folks who have phobias, such as flying. Be that as it may, I would skip flying for the rest of my life if I could, but sometimes, you just have to face your fears and get on with it. I still dislike flying btw...
We arrived at Dr. Bauer's office in the afternoon for our pre-surgery consultation. We met Nurse Mim and she spent several hours talking to us, getting to know Ivy, and going over the expansion process. She was very reassuring and calm. That helped me so much. Dr. Bauer arrived later that afternoon and as soon as he walked in the room and greeted us, I recalled all the reasons we had chosen him in the first place. He looked at Ivy first and said "how are you cutie?" You know, he's a surgeon. He's not our best friend so to speak, so it's unreasonable to have expectations of him beyond that of the responsibilities of caring for our daughter during surgery and after. But I will add that I think he goes beyond in terms of being available and making time to answer question after question, even if you've asked the same question over and over. I hope this will be the case each time as we move through this journey with him. So far so good.
Chris and I stayed at the Highland Park Marriott. It was very nice. It's a small hotel; only three floors. It felt quaint and slow paced. It had a lovely courtyard and a lovely staff. The shuttle took us pretty much any place we wanted to go. This particular hotel has had many nevus guests throughout the years so they were so very helpful. During our stay there, we found that we were close enough to many things so we could get out and walk with Ivy and enjoy the beautiful Illinois weather.
Friday morning came early. I think I had kept my fear at bay for the most part. We were at the hospital about 6:20am. The irony was that Ivy slept through the night for the first time the night before her surgery. I have no speculation as to why this happened. I snuggled with her all night and woke her at 3:20am to nurse her for the last time she could have something to eat before surgery. Having her in bed with me is as comforting to me as I'm sure it is comforting to her.
The hospital was quite nice and sits in a residential area. It is small and doesn’t have the hustle and bustle feel of a larger hospital. I was glad about that. It seemed very low key. Everything went smoothly as Ivy was checked in and changed into her hospital attire. We eventually met the anesthesiologist. I probably insulted her when I asked her how long she had been doing this, but it's my baby girl. She reassured me that Ivy would be fine. We saw Dr. Bauer briefly before the surgery. He was bright and chipper. As I watched the flow of medical personnel around the surgical area, I couldn't help but think how exciting it all felt and wondered what it might have been like to have gone into the field of medicine. Each person has their specific role and when put all together, amazing things happen! I thought about Kelly during this time and her short time working in a hospital as a nurse before she passed away. She worked on the peds floor. I wonder how many scared moms and dads she helped comfort during her short time there. I always hope for nurses that can live up to Kelly's standard of care. I think my wandering thoughts helped distract me from my fears. I know Kelly was with Ivy that morning.
Chris and I sat in the waiting area and I tried to stay calm and poised. It was terrible to wait and wonder what was happening but I got through it. I tried to distract myself on my phone but I had little luck. In the meantime, Chris had gotten a call from the elementary school that Jairus had been complaining of a stomach ache. I was able to talk on the phone with him to reassure him that Ivy was going to be fine. The poor little guy was just worried about his sister. But how does a little kid really understand all that was going on? This was really hard on his little mind. We knew it was anxiety so we had my parents pick him up early. He's got such a sweet soul. I know Jairus will forever look out for his little sister. Their bond is incredible.
Finally! Dr. Bauer came out I guess it was a little over two hours after it had started....maybe closer to three....funny how the details seems to fade. He told us all went great and she was in recovery and we would be able to see her soon. What a relief. Understatement of the year!
When we first saw her, that moment is when I was the most upset. She had bandages on her head, there was moist air flow going into her nose, and she was still very much sedated. That's an image I did not care to capture on film. I would prefer for that one to fade and perhaps in time it will. She looked so tiny and vulnerable and of course, my thought was "what have I done?" Recovery was ok. I don't think it was realistic to expect that it would be better. She was confused, probably experiencing some degree of discomfort, cranky, and most likely starting to get hungry. So there were lots of tears. There was one vomiting episode. Once she was more awake we were transferred to our room where we would stay the night.
Our first nurse was pretty amazing. All these nurses have been working with Dr. Bauer’s patients for years so they are well versed in nevus removal and surgical aftercare. We were instructed on how to change the drains every four hours. It was a pretty straight forward process. I don't recall the nurse's name but she was so sweet and comforting and I really appreciated her compassion. I thought we had certainly scored with her.
Ivy didn't smile for a long time that day. That made me the saddest. Even my best efforts to get her to smile were in vain. Finally Friday evening after I had jumped through hoops, stood on my head and balanced a plate on the pinky of my left hand, I got a smile from her.... and then a laugh. That brightened my day and renewed my hope that all would be ok. I felt like she was reassuring me that she was ok. She's my baby girl....she's stronger than I am, and I'm pretty darn strong!
The night was rough. She vomited a large quantity which was scary. It was thought to be a reaction to antibiotics she was taking. I was also so very very thankful that I was still nursing because that was my way to feel like I was truly able to comfort my child. We laid in that tiny uncomfortable hospital bed and I stiffened up in cramps all night but I didn't care so long as Ivy had just a moment of comfort. I was never so glad to see the light of day as I was that next morning. I think starting Saturday morning, things began to stabilize, improve and normalize. We checked out around lunch time and headed back to the hotel with our sweet little girl who looked like a science project. That is a term another nevus mommy shared and I couldn't help but agree. Ivy had three drains coming out of her head going into three test tubes filling with blood and fluid, so she did sort of look like a science project. I believe you must find humor in life....it's therapeutic. This analogy helped me smile more.
People are very compassionate when they see a little baby all bandaged up with tubes coming out of her head. We walked to Trader Joe's the day after surgery and at the checkout, I asked the cashier if he had some hand sanitizer I could use. He directed me to some behind him and I asked him if they sold it because I really liked how it dispensed in such a fine mist. He regrettably said they did not sell it. After we checked out and turned to walk out of the store, this young man grabbed the hand sanitizer bottle and said, "Here, you can have it." It's things like that....just really small gestures that go such a long way. We carried that hand sanitizer everywhere.
I could go on and on about every detail of Ivy's recovery. But I would be writing for hours....kind of like I already have....haha.... and unfortunately I just don't have that kind of time. But I want to emphasize that although this experience was not a pleasant one, through it all, I felt the love and support from our family, friends and strangers. I cannot thank each of you enough for all you did. Whether it was to help us financially, or taking the boys for a playdate, or bringing the boys a special treat while we were gone, or hosting us at your house for a week, or subbing our fitness classes, or checking in with us, or praying for us, or any number of things you did to lend your support and love, we are grateful for each and every one of you.
Chris and I had to do dressing changes that weekend and that was the worst. The drains were no big deal, but the actual dressing changes pretty much sucked. They were miserable for Ivy because they were uncomfortable. We got through them though. You honestly don't realize what you are capable of until you are truly put to the test in that moment. You will rise to the occasion and do what you must do and deal with your emotions later.
We stayed with our dear friend Shawn and his wife, whom we had never met. What a wonderful lady. She had two boys and they were so pleasant. I think it was good for Ivy to be around these boys because they probably helped remind her of her own brothers who I knew she was missing. We can't thank them enough for their hospitality. They gave us a car to drive all week and Chris had fun driving his first electric car. We were so lucky to have friends in the Chicago area. It made our trip much less lonely. We had fun times for sure. It certainly was not all stressful. We spent a day in the city sightseeing with our other friends Maribel and Brian. It was so great to see them and catch up! We took Ivy to the Lincoln Park Zoo. We visited Naperville and Geneva and enjoyed both these cute towns. We went to Schaumburg to meet Ms. Rita Pink (aka Nevus QUEEN), who was in town for the pre-Nevus Conference planning. What a treat that was. We were invited into the board meeting and got to meet Mark Beckwith who started Nevus Outreach Inc. We also got to meet a fellow nevus mom and board member, Merilee Vance. We also met the rest of the board members so we felt very grateful for that opportunity. At this point, we have decided to attend the 2016 Nevus Conference with our entire family. And I have to say, I'm looking forward to it.
We met with Susan, one of Dr. Bauer's other nurses, on Monday, September 28th, for our first fill. We were trained and I was able to do one of the ports. It's all about sterile procedures and getting the "right" amount in so as to facilitate the growth of a healthy flap. The fill went well and we were able to add 5 ccs to each cheek and 10 to the forehead. Chris and I will get our system into place hopefully as we do each weekly fill. We've had several nurse friends offer to help us and I'm grateful for you all, but I am a control freak, and I know that I'll be far more comfortable doing this myself. My experience with Susan was very positive. I was able to get the needle in exactly where it needed to go, and Chris plunged the saline. The numbing cream did its job and Ivy didn't flinch with any of the three needle sticks. I hope this continues to be the case. I may reach out to my nurse friends if things change. We have our first fill coming up tomorrow where we will truly be on our own. Maybe I'll be singing a different tune after that.....stay tuned.
So, we are home now....back to reality. The boys are so happy we are home. We are so happy to be home. They had a GREAT time with my parents. My mom and dad are so good with them. My mom kept their homework on track all week, she checked agendas, emailed with the teachers, and their getting to and from school ran like a well oiled machine with my dad doing drop off and my mom doing pick up. During the time we were gone, my parents cleaned and organized in anticipation of Ivy being home. My dad also built a paver walk way on the side of the house to help with the drainage issues we have had. They replanted plants too. Even though we knock heads routinely my parents are the bomb and we absolutely could not do the things we do without their love and support. We are so grateful for them. I'm lucky that I have my mom and dad in my life and I'm lucky that they are such hands-on grandparents.
Ivy is doing well for the most part. Her sleep has been disrupted once again due to surgery and probably from cutting her first tooth. The first tooth appeared on Saturday September 26th. She's definitely not herself completely. She is fussier and extremely clingy to me. Of course that is ok but it is upsetting for me to see her upset. I am looking forward to her returning to her nanny because I think that will help establish some routine back into her life. What a cutie pie she is despite it all. Her cheeks are still showing bruising but I've been reassured this is normal. She has one sharp corner in the right cheek expander where the expander is folded. This is what creates the "corner." I'm also reassured this eventually will smooth out as the expander takes shape, however, if it does not, I'm still reassured that this corner will not break through her skin. Her face is changing for sure. It makes me sad, yet excited, scared yet hopeful. When I think about the next surgery and the scars she will be left with my heart breaks all over again, but I'm doing my best to take this one day at a time. If I get too far down the road, and think about what lies ahead in the future, I become overwhelmed and stuck. One day at a time, one day at a time.
I recently received a message from a friend I know from my gym. She shared her personal story with me of her youngest being born very premature and how stressful and scary this experience was. Her nurse began to use a phrase with her that she shared with me. It's powerful to say the least, and now my new mantra for Ivy's journey....
"In the end it will be ok, if it isn't ok, it isn't the end."