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. 

We have a date

Surgery to removal the expander and the Nevus is set for November 19th a Tuesday. I got t chose between that day and the Tuesday before Thanksgiving, that would mean Thanksgiving would not be a happy day for Haleigh. So I went with the earlier date. She has a Check up/ pre-op on the 11th. We must keep her well! We have to get rid of his cough and be careful. I understand you cant always keep kids from getting sick especially since I have other kids in school. But, I bought her special vitamins that have extra C in them and after Halloween tomorrow and the Fair on Sunday afternoon, we will be very picky on where we take her. No Wal-Mart for sure. And the week before surgery no Church, no nothing. I am even cutting her birthday small. I know that may sound over the top, but this has to happen on the 19th. I need this to happen with out delays because she is sick. She is ready to be done, I am ready for this part to be over. This has been physically and emotionally draining. The surgery is physically and emotionally draining as well and I am so tired already. I need this to be done before Thanksgiving, way before Christmas! Please pray that Haleigh gets and stays well and that surgery goes well for her.

The next step

The Next Step is actually the last step we made. Insert an expander.

We made a trip up to Birmingham yesterday. We haven't been since they took the expander out. The dr had some personal issues and then I was sick so this was the 3rd appointment and we finally made it up there.

Dr. Grant said Haleigh has healed well and despite the infection he feels the best course of action is still expansion for removal. At first he said we could wait a while and timing was up to us summer or fall. Then he said Summer because Haleigh's face is growing at different rates. One side is actually growing faster than the other. He said that he can fix it but not until the Nevus is removed. So we decided that June 26th would be the date to put the expander in. So removal would be the end of October.

Even with the set back Dr. Grant believes he can get everything done before she starts 1st grade. Lips are still going to be a harder surgery done all by them self. And then evening out everything.

I've been talking to Haleigh about her next bubble and she demands she is put to sleep for all "poky things". Poor baby I hate to see her go through so very much.

A New Start

Alright here is a big update on everything. I will start with some non Haleigh just family things.

First Jason and I are making Haleigh a big sister by May! We are very excited to be expecting our 6th child. Haleigh is equally excited.
We are taking a family vacation next week to Disney World. It's been a long time coming and Haleigh can not wait to meet Mickey Mouse. We are all very excited. We have not taken a vacation since Haleigh was born 4 years ago.
Speaking of 4 years ago Haleigh just had her 4th birthday party. She was so happy that it was finally her turn. She's been waiting a long time. Her cake was Tangled but everything else was Hello Kitty. She loved all her gifts and by the time everyone left she was ready to pass out.
The last week of October we took Haleigh for her check up. She is 3foot 4inches tall and 34 pounds. Growing and developing normally.

On to the medical stuff.
About a month ago I decided we should look into seeing a different plastic surgeon. While we really liked the other one the fact is that he is 6-7 hours away, we are having scheduling difficulties, and we can now provide the finances and insurance we could not provide a few years ago. So I scheduled an appointment with a PS in town. I went with high hopes and while he is not the surgeon we need he was very open and honest about his abilities and experience and gave us the number to a PS in Birmingham. Now you may be saying "you took her to Birmingham before" and Yes we did. So the difference was this time I knew so much more and this time I was not scared.
On Tuesday November 13th, my sister Heather and I took Haleigh to Birmingham to see Dr. Grant a facial pediatric surgeon at Children's South. The first thing I said to him was "I'm scared to do expanders" he quickly excused himself and I really didn't know what he was doing. He came back a few mins later with another mom who's son had a Facial/scalp nevus who he had worked on with expanders. There is nothing like meeting another mom who's been exactly where you are sitting. Something until then I had never done before. After a long talk with her and a long talk with Dr Grant we decided to proceed with the expander surgery. It's set for January 14th 2013. She will need a 1 night stay in the hospital. Then we will return home. We will fill the expander with water for 3 months then have it taken out the nevus removed and the skin we expanded will cover the now nevus area. So 2 surgeries. Dr Grant is about 90% sure he can get all of the nevus in one round. That's really great news.

We are ready for this Haleigh is ready for this. She wants it. She's asked for it. I know she is only 4 and doesn't understand surgery or pain or recovery , but she does understand that she has a birthmark and that she wants it off. She ask most everyday to "just take it off ". If only it were that simple.

The Birmingham Trip

I realize this blog entry is late I want to ensure you the reason for its lateness is my anger not forgetfulness.

The doctor in Birmingham is a plastic surgery specialist, he has 2 offices the one we went to us at Children's South in Birmingham. It is a specialist center so one day thee is plastics in there the next day may be GI. So calling them for an answer to question falls on who ever is there that day. I never know if my message ever got to the right person, I think its crazy!

So back up a bit, we were contacted by Dr Grant's office through a foundation we applied for. Haleigh was turned down by that foundation because we were too poor, yes you read that right, we had alabama medical and you can not have that or qualify for it to recive service through them, although if your really poor and live in Mexico there is no problem they are more than happy to help you then, guess we are just poor Americans!

Any way they have all our information to Dr grant because he takes state medical. His office called me got the paper work and set an appointment, that appointment was December 28th,2010. We road up and came home in one day, using the money we raised at the ball park to go on and it was a compleate waste!

The Dr had the bed side manner of a stale piece of bread, he told me he would do the surgeries if I wanted him to but it made no differance to him if we did it now or later. He said we should talk with the dermatologist who had told us a year before to do nothing until she was 10, because some of it would have to be done with light therapy and he didn't do that.

I want to stop here and say that the dr he was talking about was no help to us and jason refused to let Haleigh go see them ever again. He then said we would have to see if they made a ballon small enough to fit her face, he was not sure if they did because he had never worked on someone so small. Just to make things real clear, he has maybe not on a face that small but he has done work on smaller children. Any way they needed to look in a book to see, remember when I went to the gentic doctor back in november we were told if there was any looking in books to run fast lol.

So that was it we left with no contact information for questions, no next appointment just the fact that once they looked the the book they would call me.

I have yet to revive a call from them, I called once, it was not his day in clinic so I don't know if they got my message or not.

How long exactly does it take this Dr and his staff to look at a book? Must be one big book!

Shortly after that appointment when I was actually thinking of going with this Dr just to get things started, because I suck at waiting, Dr C called with the news we were approved in Atlanta! God knew I was struggling with what was best, I prayed he would show me the path and he did.

The path was not to Birmingham!

Growing

Haleigh and her Mom, Crystal

Haleigh had a genetics appointment today, its been a year since we have seen him. They showed me a picture they took at her last appointment and I was surprised at how much of a baby she looked then and how much of a big girl she looks now. I also realized how much her nevus has grow in a year, last year it was not on her nose or chin and this year its half way across her nose and 1/4 of the way across her chin. That's pretty fast growth no matter who you ask.

She is also growing in other ways, Haleigh weighed in at 23 pounds 6 ounces and is 2 feet 9 inches tall, her head is 42 cm around. When we 1st went to him Haleigh was 7 months old and all of about 11 pounds, so for them to see her doing so well made them smile.

They asked me all kinds of questions, like they always do. They want to be sure she is having no major health problems that have come up in the past year. The only this that has changed is her Asthma, and since we are not seeing an asthma doctor, they call it mild. I told them how she was talking, walking, running every where, and how good of an eater and sleeper she is. Everything I told them was normal for a 2 year old. They asked what if any concerns I had for her and the only one is her nevus.

Dr. M, said told me that  if Jason and I were to have 20 more kids none of them would be at any more risk for the birth defect Haleigh has than any other child, that this is just something that happens and its not my fought and its not Jason's fought. My grand kids have no greater risk of the birth defect either. He has told me this before, but its so good to hear someone say "you did not do this". No matter how hard a mother tries anytime anything ever happens to her kids, even if she was not there when it happened, she feels it's her fought. I have thoughts, What could have have eaten, what could I have avoided, did y throwing up my prenatal do it? Every thought ends with it being my fought!

I got some other news that I really did not and still am unsure of what to do with it. I asked Dr. M, what his advice was and he had no problems giving it. So here is the news, there is this doctor is B'ham, he somehow found out about Haleigh and the trouble we were having with finding a plastic surgeon in Alabama that we could get a referral to see. With out contacting me first, they contacted Haleigh's primary doctor and told them they thought they needed to see her and got them to give a referral, the surgeon's office then contacted me with an appointment date and time. I was very taken back, because I know nothing about this doctor and have never contacted them. I do not even know if I want them to do surgery on my child. I do not know if I trust them. It seems to me or at least feels like they went behind my back at 1st, but maybe they were just trying to help, I really do not know.

So, Dr.M, asked today about our plans for removal and I told him about Dr. Connors and then about Dr. Grant in B'ham. What he said makes since, He told me there is no reason not to go meet the doctor in B'ham. He did say that the way they got Haleigh's referral was not the way it should have been done, and that he has a feeling he wants Haleigh's case because it will bring him in more kids like Haleigh and with that means more money for him. While we do  not know for sure, he also said to not be surprised if they ask to take a lot of pictures, have a bunch of students come in and look at her and want to publish a study. Of course I can say no and they can not do any of it. And nothing will be done with out my OK. He said if it was him he would take his daughter and see what his intent is. He also said that what Dr. Connors is doing sounds great, and we should continue to help him in any way we can, not only for Haleigh, but for other children that will be in her shoes in the future. He also said if there was anything he could do for us to let him know. I wish he could be our primary doctor, he's so great and just sits and listens and then talks to you like a parent, like a person. He explains everything to you and makes sure you leave understanding everything he has said!

He also talked to me about 2 ways they surgery could be done, he did say he was not a plastic surgeon though and for the most up to date information there is that plastics would be able to give me that information. He advised me to go to B'ham armed with information and ask questions I already know it answers to, just to see what the top of his head answer will be, if he needs a computer or a book to answer me, then don't trust him.

So I guess I am going to take Haleigh to B'ham at the end of December to talk with this doctor and see what his intent was on getting Haleigh in to see him.

Maybe this is the way God is leading us, maybe God just wants me to visit B'ham for another reason, maybe it's to see what not to do. I am not sure, what I am sure of though is no matter what I have 2 great doctors behind me no matter what!

We go back to see him in a year, unless we need something I can call at anytime!