Ivy had her second surgery on December 3rd to remove her expanders, and her third surgery on January 8th to remove the pedicle flap and perform a nose graft. The December surgery went well for the most part. Her cheeks could not have come out more beautiful. However, there was a "complication" with the nasal flap and inadequate blood supply, and what followed was by far the most worrisome time through this entire journey to date. In my mind I had imagined Christmas as an amazingly stress free time after all we had gone through with expansion because her expanders would finally be out. But that is exactly what did not come to pass. The holiday season was incredibly stressful and scary for me. I didn't write about it. I didn't post pictures of her on facebook. I remember thinking that I would never put my fears out there. I didn't want feedback. I didn't want to hear "I told you so." I didn't want to be questioned. I didn't want to be felt sorry for. I could not publicly handle that level of vulnerability. I didn't want to acknowledge my pain and fear any more than what was obvious to those around me. I didn't want to confront my own guilt. Instead, I went inward. I put everything into praying for healing, bargaining, and pleading. God came through, and/or the earth's energy and light was in our favor. I'm constantly going between my faith and my spirituality to get me through tough times. I also was in constant touch with two nevus friends who helped me more than they will ever know. I won't name them here for purposes of privacy, but I surely hope they know who they are. They were a lifeline.
Ivy's nose did in fact heal. Our surgeon was a constant source of reassurance. He was never worried I might add. I can't say enough about how much we adore Dr. Bauer and his team. He is the most compassionate man, and he has gone above and beyond what I ever could have imagined a surgeon would do for a patient. We were in touch with him on a daily basis and not once did he ever give us any indication that we were bothering him. When Ivy is older I will tell her how much her parents, brothers, grandparents, and friends surrounded her with prayer, love and light to see her and our family through what felt like a very dark time.
To summarize what happened at the January surgery: Because the nasal flap had basically died and been removed by Dr. Bauer when we visited him at his vacation home at the end of December, Ivy needed a skin graft to her nose. She had skin from behind her right ear grafted to her nose. The skin behind her ear was replaced from a small section of skin in the fold of her right thigh. The pedicle flap that was created during the December surgery was removed. Although I worried what was behind the bandage to her nose graft, when it finally came off, it was beautiful:) All I ever wanted was to see healthy tissue there and so it was. Ivy has been healing incredibly!
Ivy now has a unique new face. She has the most mesmerizing dark eyes. She has a beautifully shaped little face with a sliver of nevus remaining under her left eye, a smaller sliver of nevus remaining under her right eye, her full intact nevus still above her lip, and a dark nevus eyebrow above her right eye. He nose is flat across the bridge. She has scar lines in her smile lines that wrap under her chin. She has quite a bit of scar tissue between her eyebrows.
At this point, Ivy's "big work" is finished if you choose to look at it that way. No more expanders for Ivy! Alternatively, one could say that the big work remains. She will have a series of surgeries between now and hopefully by the time she is starting school with the goal of thinning her right brow to better match her left brow; doing scar revision around her nose to give it dimension; and other surgical procedures that can aesthetically improve her facial features and diminish scar lines. After the last surgery our surgeon told us that it was time to take a break. She gets to be a regular ole baby and there are no additional procedures slated for 2016. We are so grateful because we all needed a big break. EACH.ONE.OF.US! Instead of planning our next surgery, we just planned a family vacation! Imagine that!
I look back when Ivy was born on March 6, 2015 to now and I marvel at all my little baby girl has gone through. I marvel at what my entire family has gone through. Gabe, Jairus and Jade are strong and loving brothers. They are so good for Ivy. She beams when they are around. Our family feels like it can take a collective sigh of relief.....for the time being. That is what we have - the time being - so we'll rest easy and live our lives.
I remember when I first joined the Nevus facebook pages. So many families undergoing removal talked about how things were generally "OK" but that issues came up that you did not foresee. Oftentimes, the plan was deviated from. They meant to be supportive, but honest. I can vividly recall feeling angry about reading those posts. I wanted to scream, "doesn't anyone just have a complication-free experience???" It was certainly coming from a place of fear. Now that I have been through it and gotten on the other side of it, I can understand those earlier comments from well meaning nevus parents, because I could write that comment myself.
I cannot get over Ivy's transformation. I am happy and sad, hopeful and heavy. I look at other little girl babies her age with their precious "normal" looking faces and hurt for my girl. On the other hand, I wouldn't trade her face for a million bucks. She is Ivy. She is special. She is mine. When I am nursing her and doing scar massage on her imperfectly perfect face, I thank God for her health. To have this baby is a blessing. She has made me stronger and more grateful, she has charmed her brothers, and she has melted her daddy's heart.