The McDonalds

Oh how much I miss those pigtails!

Expander in head = No pigtails.

When we began the nevus removal process in January, I had no idea we would be at the spot where we are now. Here was our original plan...

January- Insert expanders and expand skin through winter and spring
April- Have first large surgery to remove expanders and use expanded skin to cover the majority of nevus.
May thru July: Have a few more minor surgeries to remove the rest of the nevus

Be COMPLETELY DONE with nevus removal by the end of summer!

The plan would allow us to only be in 'Chaos Mode' for half of the year, and we would only have to pay out our high deductible for one year. Did I think we would have a few hiccups? Absolutely. But...

...Never in a million years did I think we would be sitting here seven months later with expanders still underneath her skin, NOT expanded, with the high possibility this nevus removal will not take place AT ALL.

How did it all go to pot?

Well, The initial surgery went well.

Vivi Cate spent the two days giving her nurses THIS look.

Her stink-eye is top notch!

We expanded her skin weekly for about six weeks. Then...

Here is what happened in February... (please excuse the highlighting. I'm too lazy to fix that right now.)
Bottom line: She has thin sensitive skin that reacts under normal circumstances. When it is expanded, it reacts even more and is easily traumatized. It gets irritated. It tears. I'm not posting pics of this because it's pretty graphic.

After that last update, Vivi's skin healed nicely from what we could see.

Her head expander (usually hidden under her bow) looked great
and her neck was healing.

Since there was a lot of stretched skin, it folded over in an odd way, and it was very difficult to see all of it. We started expanding again at the end of May. I was hopeful it would go well.

And it did... for a few weeks of expanding. Then I noticed the skin that had been folded under was starting to show itself again.

See the tiny dark spot at the left side of her scarred skin?
Scarred skin okay. Purple skin bad.

It was purplish-looking like the other expanded skin which eventually tore. I knew where we were heading next. Another tear. Our surgeon got us in that week (the week before July 4th), he agreed with my findings, and we decided to go back in and take the expanding fluid out (again), remove the bad skin, stitch it, and take a few months off AGAIN to heal. This was another roadblock, but I was used to them, so it wasn't that big of a deal. The stitched wound healed great, and we decided to remove the stitches in his office. Poor Vivi had been under enough anesthesia already, and we thought we could manage taking out six stitches without putting her under.

Ahem. If 'managing' translates to 'two nurses and mama holding a screaming, kicking, hitting, wiggling, shoulder-wielding, and hysterical Vivi Cate, while her surgeon uses very sharp scissors to remove the stitches'... than we managed. (How he managed to keep his hands completely steady and not flinch once with the very sharp scissors is beyond incredible.)

If she would have sat still, it would have taken two seconds with no pain... but Vivi Cate's heightened fight or flight reaction kicked in, and she had the strength of a teenage boy. and I'm not exaggerating. We thought we got all of the stitches snipped and decided to let them fall out. He glued the skin and taped it for extra measure because you just never know with Vivi. When the tape fell off a week later, I saw one stitch was still in tact. I messaged his PA (we are text buddies now), and I took a picture of the bad news. We went in the next week (mid-July) to remove the lone stitch, and Vivi had the same reaction (of course). I heard the stitch snip. I thought he cut it. He thought he cut it. We could finally start our sabbatical of no appointments for six weeks.

Last weekend... Vivi moved her neck to the side, and I saw it. That stitch. That dadgum stitch and it was still attached. How on earth?!? In our surgeons defense, it's hard to see everything with the expander fold. Add in Vivi's perfected shoulder-blocking maneuver, and it's practically impossible to clearly see her neck. Heck, I didn't even see it for a whole week.

So... I called my pediatrician on Monday morning who agreed to take Vivi's stubborn stitch out, so we wouldn't have to go to OKC. I threw the three kids in the car, and off we went to see her.

Ya'll, she is the sweetest person ever. I always leave her office thinking I should have brought a bottle of wine as a 'Thank You' for handling our spicy girl. She loves Vivi, and she has been so supportive with every issue (and there has been quite a few) we have had since coming home. Of course, Vivi didn't handle the removal of the single stitch well. The secretary who helped me hold her down commented, "My word. That girl is a fighter! I've never seen a child that small be so strong!" Yes, she is fierce.

The stitch was very tight, so when we finally got it out, the skin tore a little bit. When we got home, I texted a picture to our surgeon's PA, and she said to glue and tape it. I have a stash of skin repair supplies, so I glued and taped it myself. While holding her down. Because even though it doesn't hurt AT ALL, Vivi Cate was not in the mood.

So... that's where we are at right now. Tiny tear in the skin, which hopefully heal on it's own.

Now some most asked questions...

What happens next?
Best case scenario? We will start expanding at the end of September, expand every week, and have the big removal surgery at the end of December. We will finish up the removal in the Winter 2015.

What are the chances of it working?
Not great. Without a miraculous healing, will it work? Probably not. We know this is our last shot. We know we will never be able to try the expanders in her neck after this because of the scar tissue in her neck now. If it rips again, we are done with expanders for good.

What are the options if it doesn't work?
None for us right now. The next option is to skin graft the stomach, remove the nevus, and use the grafted skin to cover her face. It would be painful, the grafted skin would not look good, and her stomach would be scarred. No, thank you. They would not be able to get rid of all of the nevus this way, and the whole point of the removal was to get rid of the 4-6% chance of melanoma the nevus could cause later in her life. If she is still going to have that melanoma chance, the skin graft is pointless. If she chooses this option as a teenager, we will 100% support that. We are just not making that kind of decision without her input. So... until that day comes, no removal. Perhaps medical advances will give her a clear option down the road. Who knows?

Whose fault is it that this has been one hot mess?
No One. Vivi's cranial-plastic surgeon is one of the best in the nation. He's amazing. He has successfully done this exact removal process more than once. I'm weary of doctors because of past history, and I understand they make mistakes and are human, but Vivi's surgeon is not at fault here. In hindsight, are there a few minor things we should have done differently? Yes. But there was NO way of knowing how harshly Vivi's skin would react. I think the results would have been the same regardless. It is what it is. If I brought home another child with a facial nevus, I would head straight to his office again. No doubts.

How can we help?
Schedule-wise, we are doing great right now. We have arranged our Fall semester to make things as easy as possible for the expander process. Cam and Caroline are only in one activity each. Instead of homeschooling full-time, we have enrolled all three kids at a new University Model private school where the kids will go to school two days a week, and they will do the rest of the work assigned by the teacher at home the rest of the week. Perfect combo for this season! This will take a lot of stress off of me, and I will also be able to get some things done on school days or take Vivi to her expander appointment without hauling the other two kiddos back and forth. (I may even get back to blogging on a regular basis!) I am also clearing my calendar of most responsibilities this year except being homeroom mom for Camden's class because I think it will be good for him. The goal this Fall is 'less stress' and 'more normalcy' for the kids.

Here are our immediate needs...

-Please pray her skin will have a miraculous healing. We believe her skin can be healed, and we have faith that anything is possible!

-At the same time, please accept this removal may not be a part of God's plan for Vivi Cate. We have some well meaning friends and family who simply state, "Well it has to work."

The truth? No, it doesn't. And the comment kinda sorta hurts.

You can imagine how difficult it is as parents to put your child through all of these medical procedures, arrange your family's year around these procedures, and still rest in the possibility this journey may not end the way you want. It's been a hard year, ya'll. We are exhausted, but we have come to a place mentally and emotionally that God's plan for Vivi Cate may be different than our original plan. Please understand we are fighting hard, and we have exhausted every option. If this doesn't work? We gave it our all. Months ago, I told a friend I wanted to be able to tell Vivi Cate that mommy and daddy tried their best. We have done that, but it's clear mommy and daddy aren't running this show. And that's hard. Watching Vivi Cate go through all of this and not being able to simply fix the problem has.been.hard, and it has been a faith stretching/building time for us.

To our friends and family who have stated how the removal doesn't matter because she's beautiful the way she is...THANK YOU. Thank you for being supportive and accepting our Vivi Cate for who she is... a gorgeous spicy little girl who will glorify God with or without the nevus. She's perfect and made in His image. She is healthy, and we don't take this for granted. I don't know what her life will be like if the nevus is not removed. I could sit all day and wonder what will happen once she is a teenager and then an adult. I could stress about the slight melanoma risk. Trust me. I could develop fears faster than anyone. But I refuse to do that. My focus will be one day at a time. God loves Vivi Cate more than I ever could. His hand has been on her this entire journey, and it will not leave. I have to trust that. He has some amazing plans for my Vivi Cate. This I do know.

This was our last day of vacation. Around 3am, I started to feel a little sick.

By 6am, I wanted to die.

I was so sick that it literally hurt to move. It was like I had severe motion sickness... but I wasn't moving. I crashed on the bathroom floor. By 7am, I realized I had food poisoning. I slightly remember changing our schedule for the day on my Disney app. The big kids would go with Aaron, and Vivi Cate would stay with me in the hotel room. Instead of Epcot, they would go to Hollywood Studios because Caroline could ride all of the rides there. I remember sending Caroline to my mom's room, so she could fix her hair... and that's about it. The hotel let us extend check-out until 1pm, which was very nice of them. I laid on the bathroom floor, while Vivi Cate quietly played with my phone. She even fell asleep for a very early nap, which was a huge blessing.

Whilewe were in the hotel room...

The kids met Princess Sophia!

And Jake the Pirate!

and Wreck-It Ralph and Venellope, which Aaron said they were super excited about!

They even caught up with Chip and Dale while they were walking.

They also managed to ride Star Tours a few more times before the morning was over.

I'm not quite sure what all exactly happened while I was in the hotel room..

but apparently Caroline likes to swing on poles...?

Thankfully I had everything pretty much packed the night before. At 1pm, Aaron threw the rest of the stuff in random bags, and I managed to get myself down to the lobby with several stops along the way. I found a couch near a bathroom in the lobby and that is where I planted myself for two hours. I remember African Christmas music and bongo drums playing. That's about it.

While I was crashed on the couch, apparently this is what was happening...

The kids watched the safari animals and ate lunch.

Aaron managing single parenting as best as he can!

When I saw this picture for the first time, I wondered how no one noticed this girl didn't have a bow in her hair.

Poor baby can't see with her hair in her face!

At 3pm, we had to get on the Magical Express bus, and I prayed and prayed that I wouldn't throw up on the bus. My prayers were answered because I managed to get to the airport to find yet another couch where I crashed for a few more hours.

Apparently here is what was going on at the airport without me...

Looks like they had fun!

Our flight was delayed because of the bad weather across the country, which was fine because I needed as much recovery time as possible. I managed to keep down a Zofran nausea pill I had from my trip to China, and I started feeling better. We put all of the kids in PJs, got on the plane, and made the trip back home. It felt soooo good when I crawled into bed that night! The trip was such a blast despite the last day's events!

In 24 hours, we went from 80 degree weather...

to 20 degree weather and snow!

This was the final project of Caroline's autograph pillowcase. We used the Sharpie brand fabric markers and six months later, the signatures have not faded.