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!

Preparing for Surgery #2

I can't believe the time is here! Twelve weeks after Khloe's first surgery to get her expander, it is now time for her removal surgery. Sometimes it seems like this journey has taken forever; other days it seems as though it has flown by! Since my last post, life has been as normal as it can be with three kids with the exception of our once a week trips to Nashville for Khloe's fills. You would never know that our happy, funny little girl has a huge bubble on her head!

Miss Khloe is now 8 months old! She is saying Mama, Dada, and Nana and is waving "Hi," "Bye," and shakes her head "No No." She can also clap and say "Yay." She gives the best, the biggest, and the sloppiest kisses ever. She hasn't officially mastered crawling yet but can crawl backwards very well. She is also starting to pull up on everything. When she gets mobile, we are all in trouble! She loves being outside and watching her "Bubbas" play. She has such a big personality! It is crazy how fast she is growing up and I can not imagine our lives without our precious girl. She is such a blessing to us all.

I have gotten a lot of questions about how this process has worked so I wanted to go into a little more detail about it. Below you can see a picture of an actual fill. Khloe has a port on top of her head where a needle is inserted. Saline is injected into her tissue expander that has been placed under the good skin where there is no nevus. This good skin stretches as the expander expands when it is filled with the saline. This expanded skin will be used to cover the area where the nevus is removed. We use a numbing cream on her port an hour before the fill so she doesn't feel anything at all. The only thing she doesn't like is being still long enough to get the needle in. We use things to distract like her alphabet toy, her nursery book, her I AM A BABY book and of course, Daddy's phone.

Khloe's last fill in Nashville

Because the skin that is being expanded is on her scalp, her hair shouldn't be affected and will grow as it normally would have if it had never been expanded. While it may be a little thinner, it won't be noticeable. Because you don't want to expand the skin too fast, the fills were done over the course of 9 weeks, starting 3 weeks after her expander was placed. The expander is hard immediately after a fill but over the course of a week and the skin expands with the expander, the expander softens up and it is then time for another fill. This is a list of Khloe's fills and how much was injected each time. The amount that is injected depends on how much the expander will take at the time of the fill.

• Fill 1 (8/9/13)- 20 ccs 
• Fill 2 (8/15/13)- 20ccs
• Fill 3 (8/22/13)- 17ccs
• Fill 4 (8/29/13) -19ccs
• Fill 5 (9/5/13)- 10ccs
• Fill 6 (9/11/13) -11ccs
• Fill 7 (9/19/13)- 15ccs
• Fill 8 (9/26/13)- 15ccs 
• Fill 9 (9/30/13)-9ccs 

Grand Total: 140 ccs!

To cut down on some of our travel, we did fills 4, 7, and 9 at home. There was a reason I did not go to school to be a nurse and even more, there was no way I was going to be able to stick my baby (believe me, I tried and it was a total disaster) so our neighbor came to our rescue and helped us with the first two at home fills and my friend, Nephy and my mom came to help with the last. But guess what?! WE DID IT!!! No more fills in this expander! Now it is up to God and Dr. Chester! I can rest knowing we did everything we could.

Here is a few pictures of Khloe's expanders. The first two are after her expander was inserted and the swelling had gone down. When the expander was placed, it was filled with 5ccs. The bottom two are pictures of her expander on 9/29/13 with a total of 131ccs.

Before Khloe's first fill. 5ccs 

Khloe with 131 ccs in her expanders after 8 fills

Doesn't it look like a giant boomerang? What a long way we have come!!!

And of course, we had to have a little fun with the expanders! The boys thought this was pretty cool.

As most of you know, the decision to remove Khloe's nevus didn't come easy. We spent months praying about it, speaking with other parents, doctors, plastic surgeons, etc. trying to make the right decision for our baby girl and removal through tissue expansion is the only option that gave me/us a sense of peace about what we were dealing with. However, as time grew closer for her first operation, the reality of what we were doing really hit us and I did question whether or not we were doing the right thing. But this was the only option that made sense. If I am being completely honest, even after her first surgery on our first night home with Khloe and a few nights thereafter, I would wake in a panic in the middle of the night fearing we had made a mistake. It was a horrible feeling but something I had to come to terms with. Since then, Khloe's nevus has started changing. Many black spots that are slightly raised have popped up and have caused me a lot of concern. To me, this was all the reassurance I needed that we had in fact made the right decision! I don't want to mess around with this thing and risk our daughter having another PEM or something even worse.

Khloe will have surgery to remove her expander and as much of the nevus as Dr. Chester is able to remove with the expanded skin that she has this Wednesday, October 2nd at 8:30 am CST in Nashville. While we knew going in this process may take more than one round of expanders, I didn't want to admit this was a possibility. However, a few weeks ago, Dr. Chester let us know that she isn't sure we will be able to get the entire nevus this round; however, if she can get as far over as the scar from where she had the PEM removed, she could do an excision of what is left rather than another round of expanders. I am praying that Dr. Chester has more skin than she thinks and is able to remove the entire nevus during this surgery. We know that she will do what is possible with the best outcome for Khloe. God has a plan and we trust Him.

As surgery day comes upon us, so too do the nerves and anxiety we felt before. Although this surgery isn't any easier for us, there is a different feel to it. We are starting to see the light at the end of the tunnel! I will admit that I am a little sad to see her nevus go as it has been a part of her since she came into this world, but I will also be glad to see some of the risk it brings with it gone as well. I am not sure how we will feel when her "mole-hawk" is gone or how it will be seeing her look change once again, but we will get used to that just as we got used to her nevus and her growing "bubble."

I want to thank everyone who has been so supportive throughout all of this. My Mom and Dad are amazing and I can't imagine going through this without them and their support, our family, our friends, our neighbor Jodie for helping out with the fills, Pansy Ramsey for helping out with Kahne on the days we had to travel to Nashville for the fills, Nephy Bean for helping out with Khloe's last fill today, Lauren, Laura, and all of the nevus moms who have roped me back in when I wanted to go off the deep end. Thank you all for all of your thoughts, love, prayers, and support!

Much love!

Giving Bubba kisses

Peek

A

Boo! 

Khloe's First Fill

Friday, August 9th 2013 was a big day in our house! It was Khloe's oldest brother's (Kahne) first day of 4th grade as well as Khloe's first fill on her tissue expander. I am not sure which one I was more nervous for, lol! 

Big Bro Kahne who was not excited about having his picture taken

After we got Kahne off to school, My mom (Nana) and I headed to Nashville for Khloe's fill. I was a little nervous about what the fill would entail but I was also excited to take the next step in this process. We were given a prescription for numbing cream that we were instructed to put on her port an hour before her appointment. Just like we over due everything else, applying the numbing cream was no exception. Not only did we apply a ton an hour before her appointment, we applied more about 30 minutes later, and then again in the waiting room of the office. 

Once they took us back, Dr. Chester checked Khloe's stitches out and got everything ready for the fill. I had absolutely no clue what to expect. We got Khloe's toy out to distract her and Dr. Chester put the needle in her port and began to fill. Khloe did not even know she had put the needle in! She was completely oblivious to the fact they were injecting anything in to her head. Dr. Chester was able to get 20 ccs in her 100 cc expander to give her a total of 25ccs. She did great and only seemed a little uncomfortable when Dr. Chester was almost done with the fill. I would have to think she could feel that going into the expander. It has to be a little weird! The entire fill only took about 2 minutes and was way easier than I had expected! This was such a relief for us! She goes back this week for her second fill. If everything goes well, she should be scheduled for removal surgery the first week in October. 

Thank you all so much for your love and support! 

About an hour after her first fill. Really impressed by the guy making balloon animals 

Miss Khloe is 7 months old! 

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!!!