Surgery #5

Please keep Khloe in your prayers as we prepare for Surgery #5 on Wednesday, September 30th in Nashville. This should be her last surgery for her CMN!!!

I can't wait to post that she is officially done!

Thank you all for all of your love and support throughout this journey!

-❤ Nikki, Sammy, Kahne, Kole, & Khloe!

To Fellow Nevus Parents...

I felt led to write this post solely to share with other parents who have a brand new baby born with CMN. I know you are trying to sort through all of the information and research, which I did from my hospital bed just after we learned what this "birthmark" actually was. I remember googling it and all I read about was melanoma. Then I remember googling babies born with melanoma. I didn't think I would turn up any results as I never thought this was even possible! When I found the results, I lost it. I remember hiding in the bathroom in the hospital just hours after giving birth crying and praying that this was not my baby's fate. A time when I should have been celebrating this perfect baby girl, I was consumed by fear. I robbed myself of joy. I will live to regret that everyday for the rest of my life.

I was depressed in the beginning, paralyzed by anxiety, and was so afraid of losing my little girl I had waited my whole life to meet, and I was afraid to get close to her. There... I said it. It is true. I feel horrible for that now, and I wish I had a crystal ball to know how it was all going to turn out. My daughter is a happy, healthy, smart 2 year old diva. She is well adjusted, very social and you would never know what she has been through. I say this to you because I don't want you to make the same mistakes I did. I wish I would have known that it was all going to be okay. Of course, people kept telling me that. I just wish I could have let myself believe that. Let yourself believe that!!! So, I am telling you now, it will all be okay.

I am so thankful for all of the parents I met through Nevus Outreach and the strength and reassurance they gave me through such an uncertain time, and I thank God for the lifelong friends we have made through this journey who we would have never met otherwise! Know that we are all here for YOU!

You will do your research, you will make the best decisions when it comes to removal or not to remove, choosing surgeons, and no matter how rough the road seems, you will get through it. It definitely isn't what we expected or planned for our little ones but for some reason, this is their journey. I am praying for you and your babies. I know how hard this is for you and the road is going to be.

We chose to remove Khloe's nevus for several reasons and after much research and consultation chose tissue expansion with Dr. Caroline Chester in Nashville, TN. I wanted to share a little of Khloe's journey through the removal process in pictures so you can see that we survived and how unaffected she is.

Enjoy those babies!!! It is all going to be okay! Love and prayers to you all!

---- <3  Nikki

Khloe's intact nevus a few hours after birth

A few pics of a full scalp expander at 101 ccs

Before any expanders & right after last expander removal

One year after Surgery #4!!! Khloe is nevus free!

I apologize that it has been a year since I have updated Khloe's blog! The awesome news is that as of July 2, 2014 Khloe is NEVUS FREE!!! I kept saying I was going to do it next week, or after the stitches came out, or after vacation. What I found was that I did not want to go back to "that place." It was an absolutely amazing feeling when Dr. Chester came out of the operating room to tell us she got it all; Khloe was NEVUS FREE! All I could do was hug Dr. Chester and then not so patiently wait to get my baby back in my arms. I wish I could put into words the feeling of being done! Done with the scary nevus, done with expanders, and done with the anxiety that comes along with tissue expanders and fills and all of the what if's from the nevus! We have been truly blessed. The outcome of Khloe's situation could have been worse, but we are some of the lucky ones!

This trip to Nashville was more celebratory than anything. We had the end in sight and wanted to actually get a chance to see Nashville instead of just the Dr.'s office or the hospital so we took the boys with us and went down a few days early. We stayed downtown and actually got to see the sights. Nashville has to be one of my favorite cities now that I have had the chance to actually see it!

The first night we enjoyed dinner at Merchants Restaurant and walked around downtown. We also shopped at Opry Mills, the kids enjoyed lunch at the Aquarium restaurant and did a little back to school shopping during our trip.

Khloe's brothers

Khloe is getting attacked by a fish!

On July 1st we had lunch at the Hard Rock Cafe and then toured the The Country Music Hall of Fame. We also took the RCA Studio B tour which was amazing. I can't describe the feeling you get when you are in the Studio and think about all of the history that took place there. Khloe slept through the museum tour and cried most of the time we were in the Studio so I am sorry to say, Sammy didn't enjoy it as much as Kole and I did!

Lunch at Hard Rock Cafe

Khloe enjoying the Country Music Hall of Fame

Kole at The RCA Studio B Tour

After the tour, we did more sight-seeing, walking across the bridge and letting the kids play in the splash pad. We really enjoyed Nashville from this perspective! A lot better than previous trips!

Because Khloe's surgery was early the next morning (July 2, 2014) we decided to have dinner at the hotel and relax the rest of the evening. When we got back to the hotel, there was an awesome basket waiting in our room filled with stuff for the kids from the hotel! We really appreciated it!

We also had to have fun with Khloe's expanders one last time!

She doesn't seem to mind!

The following morning, we had to be at the hospital at 8am. Nana and Papaw met us at the hotel to stay with the boys and bring them to the hospital a little later. As we were walking out, I snapped this picture of Khloe and her daddy. I am pretty sure she knew what was up by the look on her face! 

But she had cheered up by the time we made it to the car. She was as ready to get this behind her as we were!

Strong baby

Once we arrived at the hospital, everything seemed to move pretty fast. Nana and Papaw arrived with the boys for some last minute hugs and kisses before Khloe was taken back. She did such a good job waiting this time. Since she couldn't have anything to eat or drink. She stayed pacified sucking on an empty bottle once again and playing with her Papaw's phone and walking up and down the hall. She was also given a really sweet bear by the hospital.

The surgery took approximately 3-4 hours. I can't be sure because time seemed to creep by. Fortunately, we got the opportunity to meet another nevus family, The Dixons, whose daughter, Anna Faith, was scheduled for surgery with Dr. Chester right after Khloe. It is such a blessing to be able to meet other nevus families! Anna Faith was such a sweet and entertaining child. It definitely helped pass the time! You can follow Anna Faith's story on her amazing family's blog Never Too Many Flowers. They are such an amazing family! Few families are as special as the Dixons!

Sammy and I with The Dixon Family

Dr. Chester comes to Khloe's room to inform us that Khloe was out of surgery and that she got it ALL!!! Khloe is nevus free. I can not explain the joy and relief that I felt and I know Sammy felt the same way. Almost 2 years to the day of beginning the process, Khloe was done! The nightmare was over! I just wanted her back in my arms!

Finally in my arms!

In recovery

We were able to leave the hospital and head back to the hotel in a few hours where we all rested and planned to head home tomorrow. It is truly amazing how quickly babies bounce back from such a major surgery! Don't believe me? Check her out!

She is so fancy, as if you didn't know. This child never ceases to amaze us!

Once we arrived home, we got to see our Puppy who mysteriously broke a leg while we were away. We had to get a picture of the two bandaged buddies together!

Neither one felt great at this point!

But Khloe was fine by the 4th and was up for the 4th of the July fireworks at Nana and Papaw's

Enjoying a ride with her brothers

We weren't supposed to take the bandage off until Sunday but Miss Khloe had had enough by Saturday and pulled it off most of the way herself so we had to remove it. Needless to say, we were thrilled with the results!

Check out her smurf hat

Khloe had her stitches removed on July 17, 2014!

Khloe with Dr. Chester

We can't say enough wonderful things about Dr. Chester and her staff! She is amazing at what she does and truly cares about the patients and their families. Thank you so much Dr. Chester and your staff, Susan and Kim and everyone for all of your thoughts and prayers! It has been a crazy ride but we are on the other side. I just wish I could have had a crystal ball on the day Khloe was born to see that it was all going to be okay! 

Khloe will have one more surgery on September 30th to clean up her scar, remove a tiny bit of nevus that popped back up since her surgery and shorten a muscle that got stretched during expansion that is affecting her eyebrow. But no more expanders! We are so very blessed. Khloe will continued to be monitored once a year by her dermatologist but we do not expect to have any other issues. 

 Please continue to pray for our nevus families as everyone has a different struggle and different journey! I pray for the day a cause of CMN is determined and a cure for CMN and NCM is found!

Khloe is a happy, healthy two year old. 

It is Khloe's World. We Are Just Living In It

She is loving gymnastics class (or "nastics" as she calls it)

Khloe's 2nd Birthday

Halloween 2014, Tinkerbell

July 2014, Chasing birds at the beach

Enjoying the pool with Daddy

Khloe and her puppy, Elsa (aka "Selsa" according to Khloe)

Tiny Dancer

Swimming like a big girl. She loves the pool

Surgery #3, Expanders, and the Light at the End of the Tunnel!

On April, 16th 2014, Khloe underwent surgery #3 to get another tissue expander to begin her second and what should be her final round of tissue expansion to remove what is left of her CMN on her scalp. Her expander will be removed on July 2nd 2014. As I have said before, we definitely weren't looking forward to it but we knew that this would be the beginning of what should be the end. Below is a picture of the remaining nevus that will be removed this round:

Getting ready to leave for the hospital

We were a little concerned how Khloe would handle not being able to have any food (this kid loves to eat) or drink after midnight but she was a trooper. She never once cried for food. She is quite the fan of a bottle and once we gave her an empty one to suck on, she was good to go!

When Dr. Chester, the anesthesiologist, and nurses came back to speak with us before surgery, I was really worried how she would react and if she would be willing to go with them when the time came for them to take her back for surgery. One of the hardest things I have ever had to do is hand my baby over to go to surgery and it would have been complete torture if she had been screaming, crying, and clinging to us when it was time for them to carry her back. We had prayed this wouldn't happen. I am not sure my heart could have handled it!

The surgery before Khloe lasted longer than expected so in typical Khloe fashion, she was walking the halls and entertaining the hospital staff while she waited. If you have met Miss Khloe, then you know exactly what I am talking about! Nana, Papaw, and her brothers being there was definitely a welcomed distraction. When the time came for them to take her back to surgery, she was more than happy to go with them. I can not tell you what a relief that was!

Walking the halls like she owned the place

Surgery went well and Khloe got another crescent-shaped 100 cc expander just like the one she had the last round; it is just placed a little further up on her head than last time. When we were able to go back to recovery, she was doing much better this time than her last surgery. After a couple of hours, we were able to leave the hospital. Because she was doing so well, we decided to make the trip home (4 hours) so she could recover in her own bed!

And by the next morning, Happy Khloe was back!

One of Khloe's favorite things to do is go to the baseball field (she seriously points to the window and says "ball") so we were able to take her out to get some fresh air and watch her brother play.

We were instructed that the head wrap should stay on until Sunday morning, however, by Saturday morning, she had had enough and we were able to remove it on Saturday night.

She was a little bit swollen and bruised for Easter morning but that didn't keep her from her Easter Egg Hunt!

Khloe in Mommy's Easter Dress

She went for her first fill in Nashville on May 5th, but we were able to do the majority of the fills at home. This was a huge relief because after about 2 hours in the car, Khloe had had enough and would cry the rest of the trip. I guess she could only watch so much FROZEN. It was a rough trip for all of us. 

We filled her expander weekly. It is now at 101ccs! They put 10ccs in the expander at the time of surgery and this is how the rest of her fills went:

• Fill 1 (5/5/14)- 16ccs Nashville
• Fill 2 (5/12/14)- 18ccs 
• Fill 3 (5/19/14)- 20ccs Nashville
• Fill 4 (5/26/14)- 11ccs 
• Fill 5 (6/2/14)- 11ccs Nashville
• Fill 6 (6/9/14)- 5ccs 
• Fill 7 (6/16/14)- 5ccs 
• Fill 8 (6/23/14)- 5ccs 

Grand Total: 101 ccs

10ccs before any fills

101ccs

101ccs

The first fill we did at home, we tried to do at night while she was sleeping. Unfortunately, the minute I wiped her numbing cream off, she woke up. Needless to say, that fill didn't go so great; however, we got into a rhythm and had it down! This is a picture of Khloe right after her last fill EVER! I really do think she knew it was her last and was as excited as we were:

6/23/14, Last fill EVER!

I often get asked if her expander (a.k.a. Bubble) has bothered Khloe at all. When we first removed the bandage, she wanted to play with her stitches. We immediately pulled her hand away, let her feel the actual expander and told her it was her bubble and to be "soft." Since then, she has been so good about leaving it alone. Every now and then she will grab it and say, "bubble" (which I am determined to get on camera before it is removed). You can also ask her where her bubble is and she will be more than happy to show you! She is very proud of her bubble. Every now and then notice her tilting her head back and forth oddly. Dr. Chester explained that she is probably hearing the saline sloshing around in there. This has also been confirmed to me by a few older children and adults who have had scalp expanders. I can't imagine how frustrating that would be! Other than that, Khloe hasn't missed a beat! She is developing just as any 17 month old should, which has been such a huge relief to us considering we were unsure how she would be affected early on. The fills weren't too bad either. Of course she cried; not because it hurt her but because she was being held down and this was very upsetting to her.

We still can't believe how smooth this round of expansion went. Having already gone through this once so we knew what to expect. But, I really didn't expect it to go by as fast as it has. Since Khloe is older and walking/sprinting around all of the time, we have tried really hard to protect her bubble as much as we can without making her and ourselves crazy. 

With all of the activities and end of the year stuff we have had going on this round, Khloe has been out and about with her expanders a lot more than she was last round. In the beginning, I was insistent that we keep her hat on her head. To be honest, I just didn't want to have to endure the stares and explain Khloe's situation to everyone. However, Khloe wasn't as keen about keeping her hat on as I had hoped and in the midst of life, I stopped worrying about what everyone else thought and just let Khloe be Khloe. And you know what? No one cared! We are so appreciative of our great community, family, and friends who see Khloe for Khloe, and instead of shying away from her "bubble," have embraced her and her bubble! THANK YOU ALL for making this whole process so much easier on all of us. 

Now I have to address my feelings toward removal... I am going to be 100% honest and say that I am looking forward to this surgery but it isn't without a mix of emotions. When they handed me the papers from the hospital for this surgery, I felt relief. Like maybe I could breathe, really breathe for the first time since Khloe has been born. However, part of me is a little sad to see the nevus go. While it has been the source of so much fear, hurt, and pain, it is a part of Khloe and will always be. I heard some of the other nevus moms say they felt a sense of loss when their baby's nevus was gone and I didn't understand until Khloe's "mole-hawk" was gone.  It is a strange feeling to say the least. Nonetheless, it has to go, it needs to go, and in the end, I can't wait for it to be gone. 

On Wednesday, July 2, 2014, almost one year to the day we began her removal journey, Khloe will undergo what should be her LAST surgery for her nevus! Dr. Chester feels confident that she has plenty of skin to remove the entire remaining nevus, and we are very confident in Dr. Chester. While Khloe is in surgery, she will not only remove the nevus but will also clean up the scar line from her previous surgery. Please keep Khloe and Dr. Chester in your prayers!

I can't wait to update this blog declaring that Khloe is NEVUS FREE! 

We can't thank you all enough for all of the prayers, support, and love you have shown us and continue to show us throughout this journey! You have all made a scary situation a lot easier, and we are forever grateful. We know God has a plan for our sweet, special girl! Much love! 

A Day in the Life of Miss Khloe Elizabeth

Diva