Surgery #1

Surgery #1 is behind us!!!  Sorry it took so long for me to post but as you know, life is crazy. Once again, I can't say how much I appreciate all of the prayers, texts and well wishes for Khloe! She is an amazing little girl and was a total champ through surgery and recovery!

Her first surgery to place the tissue expanders in her scalp was on Wednesday, July 17th in Nashville. Even though I knew this day was rapidly approaching, there is nothing that can prepare you for handing your little one off for surgery. Her surgery was scheduled for 9 a.m. and we had to be at the hospital by 7 a.m. The night before surgery I was a total mess. The thought of what the next day and the next few months were going to be like, and the fear of the unknown was and is still so hard for me. I still couldn't believe (and still can't) that this is the reality for our sweet girl. As scary as it is, we know this is something that we have to do for her and will be best in the long run. We are also well aware that this is nothing compared to what some families have to go through. We are blessed. We have a plan. She will be fine.

The night before surgery. She loves hotels!

One last picture of her "mole-hawk"

Having a good time with the baby wipes

Wednesday morning when we were pulling into the parking lot of the hospital, I felt my legs get weak. I didn't think they were going to be able to support my body. Walking into the hospital, all I wanted to do was turn her stroller around and take her back home. All I could think about was how my poor baby had no idea what she was getting ready to go through. My stomach still aches thinking about it. 

Once we arrived, we were visited by the anesthesiologist and Khloe's plastic surgeon, Dr. Chester. Khloe was completely unphased by everything and had a good time smiling and showing off for everyone in typical Khloe fashion. 

Playing before her surgery

Fortunately, Nana and Papaw (my mom and dad) made the trip down early that morning to be with us for surgery. They made it in time to see Khloe before she went back. It was so great to have them there. I am not sure what Sammy and I would have done to pass the time if they hadn't been there! At about 8:52 am, the nurse came to get Khloe and take her back for surgery. Of course I cried! 

Last minute cuddles before they took her back

She had absolutely no problem going with the nurse as they took her back for surgery. Of course her blankie and her bear went too. The entire surgery lasted about 2 hours and 15 minutes and then we were allowed to go back to see her in recovery. The minute we hit the doors I heard her crying. I couldn't get my hands on her fast enough. 

Sweet Baby Girl

Once we got back to the recovery room, Dr. Chester met us and explained that instead of the two expanders she had planned for Khloe, she only had one crescent shaped expander. At first I was concerned. Would this mean that she would require an extra round of expanders to remove the entire nevus? Fortunately, Dr. Chester was able to address my concerns and explained that once she got in the O.R., the one crescent expander was a perfect fit for Khloe's nevus and that it just didn't make sense to put in an additional expander. This was great news!!! Does this mean Khloe will only need one round of expanders? Not necessarily. It is impossible for Dr. Chester to know how much she can get until she gets Khloe's expander to capacity and in surgery. However, we are hopeful this will be the only round of expanders she will have to have.

Khloe was able to leave the hospital after a few hours. She spent most of the rest of the day sleeping. Finally, by that night, Khloe was awake! We even got a little smile out of her!

Not so happy baby :( 

Finally awake! 

The following morning, happy Khloe was back! It was so nice to see her awake and acting like herself again. She immediately went right back to playing with her bear, her balloon that Nana and Papaw got her and the baby wipes bag! We even went for a walk!

Ready to get our bandage off! 

On Friday morning, we had Khloe's follow up appointment. This was the first time we saw the expander that she will have for the next 9-12 weeks. I am not going to lie, when they took the bandage off of Khloe's head, it was a bit of a shock. It was still really swollen so you couldn't see a lot about it but you could see the outline of the expander. It also made her nevus look extremely flat against the raised expander! Dr. Chester did confirm that Khloe did not have any fat behind her nevus which is typical for CMN. Once Dr. Chester got a good look at her work, we were on our way home.

We couldn't wait to get home to the boys. They had been living it up with their great Aunt Kathy who kept them busy the whole time we were gone. We can't thank you enough, Aunt Kathy!!! I am pretty sure they would have just moved in if it had been an option!

I was very anxious to see the boys and how they would react to Khloe's new "bubble." Once they were home, they were a little confused by the fact that Khloe still had her nevus even though we had explained how the process would work. However, they really didn't care; they were just happy to have her home!

The past few weeks have been life as usual for the most part. Just as we got used to Khloe's CMN, we have gotten used to seeing her with her expander and stitches. Other than her sleeping, Khloe is back to being Khloe. She is learning to maneuver her walker (everyone watch out!) and doing things that every little 6 month old does. While I have had my moments after the surgery where the concerns of all of the unknowns get to me, I do feel at peace with our decision for the most part. Her speedy recovery has definitely made the process a little easier to deal with and has once again confirmed that we are doing the right thing for her.

Carrots!

We have had to wait a few weeks for Khloe to heal from the surgery before she can have her first fill which will take place on August 9th. We are both excited and a little apprehensive to begin filling her expander as we are just now getting used to it being there. However, we can't wait to take another step forward. Below you will see a picture of her expander that I took tonight now that most of the swelling has gone down. You can see what Dr. Chester meant by it being a perfect fit for her nevus. It really is!

I can't say enough how much we appreciate all of the prayers for our little girl! Love to you all and thanks for the support!!!