An Update

Haleigh is doing really well 5 days post op and most of the swelling has gone. Her eye is still pretty swollen though. Her blue bruises have turned and orange brown color. Meaning she is healing nicely, and has great blood flow. She went all day until about an hour ago with only Advil for pain. But a little bit ago she said she needed the red one, because her eye hurt really bad. She's such a strong little girl.

Expectations

I have friends that I have never met that have children that have exactly what Haleigh had. Born with the same type of Nevus. Some even born with them in the same location as hers. We support each other through tough choices. The good and the bad. They are there to answer questions offer advice. Or just to listen to me vent about people who don't understand. I don't know what I would do without them.

Before Haleigh's first surgery I saw pictures of their children before and after surgeries and their immediate transformation was clear. So when we took Haleigh for her first I expected that an was slightly disappointed when that didn't happen. With her second I understood it would be a slow process. 

Then we changed our course of action and decided to do the expanders. Our first one got infected. So when It was removed there was no Nevus removal and I was sad. Here we were surgery number 4 and nothing. No transformation, no big reveal. I was scared to do another expander, but we tried again and this time it worked wonderfully. 

I'm not sure what my expectations were for Haleigh this time. I was and am thrilled that the expander was such a success. I had thought all of her cheek Nevus would be gone and we would be left with another surgery for her lips and maybe nose. That's what was expected. I was nervous though that there wouldn't be enough skin to cover the cheek and I was scared that when I talked to the dr that he was going to say he didn't get very much. I was scared I was going to be disappointed again and we would have to do another round or two of the expanders. Much to my delight that was not what happened. 

Apparently I did an amazing job of expanding slowly. Her skin was even "stretchy" and of course he was able to remove the Nevus off her lips too. 

I was so nervous when I saw Haleigh. I almost didn't want to look. What if we had made the wrong choice with the expander. What if what some doctors say is true and her skin won't match and look natural. What if this was the wrong choice. 

Then they rolled her in. She scooted herself from her OR bed to her room bed and looked at me. And she looked like my Haleigh. Just as perfect as she was when she went into surgery. This was the right choice. She looks amazing. The risk of melanoma has plummeted to almost nothing. I thanked God for watching my baby through her 6 surgeries and for guiding our surgeon with his knowledge and skills. 

I couldn't have dreamed for better results. Although I'm still not sure what I expected Haleigh to look like after she was done. I surely didn't expect to be 95% Nevus free and I didn't expect her to look so much like herself. But I'm so happy she does. 

 

Oh as The Years Have Went By

24 hours

The past 24 hours have been exhausting. 

I am so tired. I didn't sleep Monday night. Got up at 2:30 on Tuesday morning to leave. Slept from 12-5 and the. 530 to 7 this morning. I dosed off when we got home around 330 but the older kids got home shortly there after and wanted to talk to their mom. So I stayed up. Haleigh wanted to watch cartoons when we got home. She loves pound puppies. I gave her the pain meds and told her she needed to lay on the couch and rest while watching tv. She did and has been asleep for 3 hours. She didn't sleep at all on the way home, it's taken a lot out of her. 

The past 24 hours have been transforming. 

When Haleigh was born the dr thought she has birth bruises on her face along with 3 little "birthmarks". I didn't see them when she was first handed to me. But after they took her and made sure she didn't need nicu (she was born at 34 weeks) the nurse told me she had a few "spots" on her face and asked me if I wanted to see her. I said and I remember very clearly saying it "give me my baby" she did and I have to say Haleigh looked compleatly normal and healthy to me. I didn't see what they were talking about. The nurse however made sure she pointed it out to me. She told me if I  needed her to take Haleigh she would. I told her no and fed her instead. I didn't understand at first why they kept asking if I was ok. Why would I not be ok? I just had a healthy baby girl. I realize now that they thought I would reject Haleigh and I can't see how anyone could reject their beautiful baby. But I guess some mothers do, or they wouldn't have asked. Over the 5 years of her life she has changed so much and her Nevus has as well. She has grown so much and so has the Nevus. It ha also gotten darker and grew hair. Now it's gone and even though she is swollen, the transformation is amazing. She has seen herself and she says she's puffy. Silly girl. 

The Big Day

Today was Haleigh's big day. And this is how it went.

At 230 am I woke up and my mom got to the house we loaded the car and left the house at 3. Haleigh slept most of the way. We live off exit 15. UAB is at exit 259. We were making great time until we got to Clanton. Exit 205, an 18 wheeler had south bound closed. We got off and got on 31 however we were going south and needed to go north. 5 miles and one gps search later we turned around and were headed in the right direction. We got back on the interstate at exit 234. Everything was good until we got to 250. It took 45 minutes to get from mile 250 to  mile 259. 9 miles took 45 minutes. A 4 hour trip took 6 hours. I was annoyed. The hospital was really good and understanding though. So finally we check in and wait. 

We got back into preop and got our gown on and they took her vital signs. Then we waited some more. We were second today. But still his first case ran over. Then Haleigh's case ran way over as well. I never wanna be his last case. It's great that he takes his time. When your dealing with children's faces you do not want to rush. 

They took her back and she was all smiles. "Bye mom, I love you see you soon" 

I was given this pager so They could get me if I left the waiting room. Parents leave the waiting room? I wasn't but I took it anyway. 

I staired at this screen with information about what stage they were in. 

I drank a lot of coffee. I also made a lot of coffee. 

Finally after over 3 hours. It was time to talk to the dr. The first thing he said was " you did such a great job filling the expander. We had enough skin to take all of her Nevus, she looks great" I was overwhelmed. We didn't think there would be enough for her lips. So that also means no more expanders. She may have to have another surgery or two but she will not have to have another expander. I am overjoyed by that. I went to the gift shop and got her a ballon and an animal. Later a really good friend sent her a different ballon and Animal. She loves them. 

Then we loaded our stuff and headed up stairs to her room for the night. 

We got to get room before she did. Sat and waited on her. 

We have a great view from the 9th floor. 

Then my baby girl came in the room. She is sleeping. She needed a little oxygen because she was so sleepy. She has her IV fluids and antibiotics. Her plus ox and BP cuff. 

The dr came by said she looks great and the skin is awesome looking. 

I invision a long night a head of us. And a long week. The swelling will go down the stitches will dissolve on their own. She will be left with scars that will be hidden in the lines of her face. 

God has been so good to us. 

At the moment she has awoke and ate a purple ice pop and is drinking apple juice. 

She is amazing. I am going to go cuddle her and will try to update tomorrow afternoon. When hopefully we home then. 

Removal Surgery is Set

We will be at the Hospital in Birmingham at 8 in the morning. That means we need to be on the road at 3 in the morning. I will not sleep tonight. I will try but it will not happen. I will however lay and rest as early as I can. Probably around 9 tonight. I have somethings I must get done after the kids get home tonight. I have the all squared away. I know who is going where and when and with who. Everyone is taken care of. I just need to pack and get there before I explode. My anxiety has gotten really bad this month. More than ever before. I know it has more to do with me than Haleigh actually having surgery, but it still makes it worse. I will survive this though. Haleigh WILL be fine. We will go, have the expander removed, have (we hope all) her nevus removed and then we will home the next day. She will not have any problems. She will be ok, I will be ok. We can do this, I GOT THIS!

Our Family

I imagine being Haleigh's brother or sister is pretty hard at times.  They have been really great when it comes to people asking questions or pointing. The younger ones even tell adults and kids that, it's just her birthmark. They have told kids not to make fun of her. The older ones have protected her when kids started asking questions and Haleigh got overwhelmed. Madalyn has held her in her lap for her fills and calmed her when she would cry. Collin has held her hand and told her it was ok. They have stayed home, be juggled around during surgeries and trips, and today I had to cancel a birthday party, partly to keep Haleigh well, partly to keep everyone well. They have been understanding and loving of their sister since the day she was born. But I wonder sometimes if they will grow up and look back on it differently. I hope they always know that we are doing the best we can, and that I wish her appointments and surgeries didn't mean a sacrifice on the part of my other children. But sometimes it does, sometimes it's unavoidable. Like this weekend when my oldest daughter can't go anywhere in fear there maybe sick people there and she will bring stuff home. Where my oldest son has to wait another week for his HappyBirthday. Where I have to leave my 4 other children and relie on extended family to get them to school, home, baths, dinner, clubs, practice, band.

It's hard. I know how hard it is on me. I can only imagine how hard it is for children. 

 

A mom thing.

My anxiety has gotten bad over the past year. With everything that has happened with in our family, there is no doubt to why and where it come from. However it is debilitating none the less.

I did well through Haleigh's other surgeries. Even through the emergency one when she had an infection. I held it together and got through it well. 

Then there is the upcoming surgery. I have been having a lot of anxiety over this one. I shouldn't though. It's not more difficult than the others. She will still only need one night in the hospital. We will still travel home the day after. The same people are taking care of her. I know she is in the best of hands there and yet I find myself worried to a point of sickness. I control it well around Haleigh, but I am scared. I just want her to be ok. I want it all to be over and done already and I want to know the complete out come. Yeah I'm impatient i know. But this is my baby. I've had bad dream all week. I can't sleep. 

Please Lord take this worry from me. 

Amen 

Done!!

We are DONE with fills. Compleatly Done. After the no fill that was Monday night, I decided to try again today before everyone came home. It worked. Haleigh was still and we were able to push 15cc in slowly. Her expander is really tight and there is no way I would have been able to push any more in. So that's it we are over 350 and done. I told Haleigh it was the last one. She knows we are going to Birmingham in 6 days and they are going to "take her bubble out" she's so excited. I am too.

A no fill

The fill tonight was a no go. I don't know what happened. She got upset and wouldn't sit still and I couldn't find the port with her moving so much so I decided to put it away. I will try again Thursday. And that will be our last fill!

8 days

In 8 days we will be headed to Birmingham for surgery to remove a good bit of Haleigh's Nevus and the expander.

I took her today for her pre op appointment and 5yr check up. She's 37 inches tall and weighs 36.9 pounds. She is very healthy and we renewed her yearly referral to plastics. Her dr is very happy with the way her expanded skin looks. I have to say I am as well. No openings, no strech marks. It just looks perfect and healthy. 

I am excited and nervous and scared. I believe Haleigh is having the same feelings. I wish I could do this for her. We will be doing a small fill today. 10-15cc sounds good. 

Pictures of Haleigh's 5th Birthday.

Happy Birthday Haleigh

A little fill

We did a small fill this afternoon. 10cc in. We could have done more I think, but I'm tired of her being uncomfortable after. So Monday we will be doing another 10-15cc. I think braking it up now that she's not scared if the fills is much better than the "as much as we can" approach. We are at 320.

Fall Time

There is so much happenings in the fall. I am glad we got to take part in some of them already. We of course had a great Halloween and then yesterday after church we took the kids to the fair. I forgot my phone so there are no pictures none. And that makes me really sad, but they had a wonderful time. Haleigh is right at 42 inches that is the right hight I ride a lot of the rides. She enjoined spinning and going high. She petted the baby cows and pigs, ate a funnel cake and had a hot dog. All good fair stuff to do.

It did get cold when the son went down and when Haleigh gets cold says her bubble is cold, so I wrapped her in a scarf it seemed to help her not feel as cold. She also fell asleep on the way out and Jason carried her to the car. She was very upset when she realized we had left the fair. 

Haleigh's expander is very tight still and I'm not sure if we will even be able to do a fill this week. I will probably do a small one. She is uncomfortable though, but I want to be sure we have enough skin to remove all of her Nevus. I really don't want to do another exander ever. 

We got to see some family today. They wanted to see Haleigh before surgery and before we start our no visitors and no outings after the 10th. I was really glad they were able to come today. Haleigh had a great time playing with them. 

Halloween and an Update

Haleigh had a great Halloween. She was Bat Girl. She was so excited, First we went to our church fall festival, then we went trick or treating. Every house She said "Trick or Treat and Thank you" So very cute. I was really glad she was feeling better. I have had sick kids on Halloween and kids who have been in the hospital even on Halloween, its not good, they miss a lot of fun, I am really glad that she was well enough to go out, and enjoy the events. She got lots of great treats, that are being handed out one by one slowly. 

11-02-13

We did a 25cc fill last night. The skin and expander felt tight at that amount so we stopped there, even though the water was flowing in nicely still. I kept asking her if she was feeling any pain and she said no. About an hour later she said her bubble hurt. I felt of it, No fever in it, not red, just tight. So I gave her some Advil and she watched The Little Mermaid and went to sleep. Around 3 she woke me up and told me her bubble hurt really bad so I gave her some more Advil and put her in the bed with me, 430am she was tossing and turning so I woke her and she said her bubble still hurts and started to cry. That is the hardest thing about this whole process, you as a parent know you are doing what it right for you child, however you also know that its hard on them, you know that what you are doing is causing them physical pain, and that's hard. But hey no one said being a parent was easy. We make have to make hard choices for our children everyday. So I gave her some Rx pain meds and with in 30 minutes she relaxed and was sleeping. She slept until 11am. Ate and I went ahead and gave her some Advil, she seems to be doing ok this afternoon. playing on her games, running around outside and even fighting with her brothers. All very normal Saturday events.

 I am debating on how much to fill next week. We only have 3 fills left. So do I fill as much as I have been and just give her Rx pain meds that night, or do I fill and expand less. We have a goal of 350ish and we are at 310. Only 40cc more to go before goal, and we can "overfill" if we get to that point. Some parents actually fill twice a week in the end, and we could do that, doing less of course. We would do 10-15cc on Thursday and then again on Monday. Its an option. maybe that would keep her from having any pain or discomfort. Its just so hard to know what right is.

I am excited to be done with this expander. I know I keep saying that, but its only because I really am. And Haleigh is so ready to have her bubble out. Just ask her, she will tell you, she's ready.

310

We have been fever free for over 48 hrs and on antibiotics for 48hrs. That meant we got to do our fill tonight. 25 more cc's in for a total of 310!! Haleigh is doing so well. I am so proud of how brave she is. 18 days until surgery 3 more fills!! Excited doesn't begin to cover it.