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

Surgery #2, Life with Khloe, and preparing for Round 2

Sorry it has taken me so long to update Khloe's blog.  After Khloe's removal surgery, it has been so nice to just be able to live life without thinking about her nevus, expanders, fills, etc. all of the time. As we prepare for surgery #3 and round two of expanders, I decided it was time to give an update.

Khloe was scheduled to have her tissue expanders and as much of her nevus as possible removed on October 2nd, 2013. As you can imagine, getting ready for her surgeries takes a good deal of preparation on our part, both mentally and logistically. On our way to Nashville on the evening of October 1st, I just happened to call our insurance company because I had a question. I never expected to hear what I heard on the other line... When I mentioned that Khloe had surgery scheduled for the following morning, the lady from the insurance company proceeded to tell me that nothing had been submitted to them for her surgery and that it wouldn't be covered. My heart immediately fell to my feet and I began making phone calls. Dr. Chester and her nurse were amazing! We were all on the line with the insurance company trying to get everything taken care of. We already had surgery scheduled, we had been preparing for this day for 3 months and her expanders had to come out. How could they approve the expanders to be inserted but not for them to be removed? Since it was the end of the business day, there was not much left to do but wait until the next morning. We were at the mercy of the insurance company which didn't open until 8am. Surgery was pushed back until 11 a.m. so we could get a chance to talk to the insurance company the following morning. Fortunately, I was able to get on the phone with a supervisor who got it all straightened out in 5 minutes!!! Surgery was on! I have to give many thanks to those who reached out to us and helped us with the insurance situation, especially Keith Gambrel and Casey Capps Joyce! I also want to thank everyone who shared my post on Facebook,Twitter, and the insurance company's web page. I honestly believe that it was because of all of you that we were able to get the insurance company's attention which led to them doing the right thing.

Sweet baby

Her "mole-hawk"

Getting ready to leave for the hospital

One more of the expander, 131ccs

One last look at her in-tact nevus

 Once we arrived at the hospital, it wasn't long before she was checked in and getting prepared for surgery.

She is thinking, "Hold on, I have been here before!"

While we knew that Dr. Chester didn't think she could remove the entire nevus, we still had hope that there was a possibility she may be able to remove it all. Surgery took close to three hours and when Dr. Chester came in and told us that surgery went great, I felt that I could breathe again. Dr. Chester was able to remove a good portion of her nevus including her entire "mole-hawk." Of course we were going to have to wait until Sunday (her surgery was on Wednesday) to see it.

Once Khloe was moved into recovery we found that she was having a really hard time with the anesthesia and couldn't keep anything down so she was admitted to the hospital for the night to keep her from becoming dehydrated and was released to come home early on Thursday morning so we were able to head home.

On our way home... Don't anyone mess with her balloons!

It is truly amazing how quickly Khloe bounced back! She was very excited to get home and see her brothers and her toys and by Friday, she was back to her smiling, happy self.

As I mentioned before, we were supposed to wait until Sunday to remove her head wrap but because it was rubbing her neck and chin pretty badly, we went ahead and removed on Saturday night. When Dr. Chester was explaining Khloe's sutures to us at the hospital she said to expect it to be "Frankenstein-like" so you can imagine what Sammy and I expected to see. Once the wrap was removed we were amazed by Dr. Chester's work! The majority of her nevus was gone and the scar line was nothing like what we had prepared ourselves for! I cried tears of joy!

It was a bit of a shock to see her with a little round head again after she had had the expander for so long, but it was also a wonderful sight! And to know that a large portion of her nevus was GONE and that she actually had hair on the top of her head, I can't explain the relief that I felt. Even though her nevus was not completely gone, for the first time since Khloe's birth, I felt like I could breathe. Yes, we would have to go through another removal but we had survived and Dr. Chester did an amazing job! The bottom picture above is after the stitches were removed and the picture below is two days ago!

Khloe's nevus on 4/9/2014

As you can imagine, we are very pleased with how thin her scar is and we are confident as she grows more hair, it will be hidden completely and all of this will just be a memory that we will be reminded of while washing and brushing her hair.

Miss Khloe is now 15 months old and is walking and talking and very opinionated for her age. She knows what she wants when she wants it and expects to get it! She might be just a little spoiled. In the past several months she has celebrated her first Halloween, Christmas, and first birthday! It is crazy to think she is already over a year old!

She loved Santa! 

And the Easter Bunny! 

We had Khloe's follow up appointment with Dr. Chester on January 27th, and Dr. Chester was very pleased with her work as well. Although I knew deep down Khloe was going to need another round of expanders for the best results, part of me thought maybe, just maybe excision might work on what was left. But because Dr. Chester is the perfectionist that she is (which we LOVE about her), she feels that for the best results, Khloe will need another round of expansion using the same crescent shape expander that she had last time. Khloe will be receiving her new expander through surgery #3 on Wednesday, April 16th.

Although I am completely dreading her upcoming surgery and round of fills, it definitely feels a little different this time knowing that this should be our last round and then Khloe will be NEVUS FREE! This round should also be a little more interesting since Khloe is a lot more aware of her surroundings. Distracting her during her fills this time should be very interesting!

We truly appreciate all of your love and prayers for our baby girl! Love to you all!