Second Surgery 4 to 6 months

While planning our 2nd trip to Atlanta, I was so excited to take our other kids and planning how we can make it special, seeing as this will be our vacation too, I put in the back of my head it is also surgery. Not that I forgot, just that I put it in a little file. We are still taking them of course but I am thinking we will scale back just a bit, as good as Haleigh does she still needs down time to recover.

And I got word from Atlanta just a few minutes ago. We were asked to look at our calenders for 4-6 months from now! Dr.c has been super busy in his office and that's good, his office being busy allows him to do what he does for Haleigh and other kids that have been applying for help through Emergence!

So I looked at our calenders and as you would expect there is nothing 4-6 months from now! All we want is a Monday or Tuesday surgery so that Jason only has to take the one weekend off, and he will have too, or vacation he can take for that.

As Haleigh gets older I hope she does not fear going to Atlanta. She will tell you all about it in Haleigh talk, I can make out a few words like Haleigh, doctor, face, dog, and fishy. Oh and ride in the car. So she remembers and I am glad she remembers the fishy and dogs along with the doctor and her face.

11Alive News in Atlanta

Below is the link to the 11Alive News clip on Haleigh and Dr. Conners. Please watch it and share it. Our prayer is that this will bring awareness not only for Haleigh but for other children that are in need.

http://www.11alive.com/video/default.aspx?bctid=826468935001

Thank you 11Alive, Dr. Conners, and everyone else for their prayers and help!

Haleigh's First Surgery

Haleigh had her first surgery yesterday, she did really good, there were no problems through out surgery. A few details before I start telling our story. Haleigh was out to sleep with grape flavored gas, then given an IV and a breathing tube, surgery was 2 hours long, the piece that was removed was 5cm long and 2 cm across. He closed with normal stitches not dissolving ones. He gave her a nerve block that lasted about 8 hours, although I think it lasted longer than that.

On to the personals.

We left mobile on Monday the 7th at 6am local time. We didn't dress Haleigh, just changed her diaper and put her pj's back on her. We stopped in evergreen to pick up Jason's mom, eat and fill up. We didn't stop again and Haleigh slept all the way until we were about 30 miles out side of Atlanta. That is when we stopped and got Haleigh some lunch, Jason and I got a snack we were just not all that hungry. And filled up again. Then on to the hotel. I have to say the hotel was very very nice, but unless it was donated to us again we would not choose to stay there, even if it wasn't 350 a night. There was nothing wrong with it, we were just kinds out of place being at a hotel where they wanna do everything for you from opening the car door to your room door. They even knew our names as we walked out the door to get dinner! It was very nice, we are just use to doing stuff our self.

We changed Haleigh's clothes and went to meet Dr C. We got lost 3 times with the GPS, because Jason kept getting in the wrong lane and we would have to turn and then go another way and so on I times lol!

Everyone at Dr C's office was so so nice. They gave her a stuffed dog that Haleigh has been carring around with her ever since. We met Dr.C in the waiting room then went to an exam room, he was real good with Haleigh he played with her and answered all of our questions, and never made us feel that our questions were not important. The news was there setting up and I talked to them and did good with no tears until they asked if anyone had ever been rude to Haleigh or me, and what kind of questions we get in public. Ugh... That is a question that in the past that made me mad and I would always answer with a don't hurt my baby mommy voice. But I had already made it through surgery talk, talk of cancer, and talk of how we were turned down by other places. So when we got to how other kids are mean, my mind rushed to kindergarten and thoughts of Haleigh sitting by herself and I cried. They have me a min and then I furnished the rest of the interview with no more tears. I will let everyone know when its on line, it has not aired yet.

We left there and it was time to eat dinner, so we did that and then went to a cool mall, that was right across from our hotel, it was underground as well as above making it like 5 stories of stores, stores like Tiffany and company! We let Haleigh pick out a cupcake and then we headed to the hotel hoping to turn in early so we would not be late for surgery the next morning. Haleigh feel asleep about 10.30 Atlanta time.

We had to be at The surgery center at 6 Tuesday morning, so we left the hotel at 5.30 the surgery center is right across the street from the Dr office, and connected to the children's hospital, that is connected to north side hospital. We got there a few mins early and checked in at the wrong desk so by the time we got to the right desk we were right on time. They were all super nice and made us feel comfortable and talked to Haleigh in a soft voice. We didn't wait long before we were called back to be weighed and to get her blood pressure and stats done. She was at 95% oxygen for a while so they have her a breathing treatment then she was at 100%. We then went to per op waiting area that was a private waiting room. The nurse took Haleigh to pick a prize and the Dr that put Haleigh to sleep came and talked to us then listened to Haleigh's heart and lungs. We changed her into a hospital gown and socks, I put a gown over my clothes and a hat on my hair and carried her into the OR. There were about 15 people in there and Haleigh got scared because they were all wearing mask. Dr. C took his off to make Haleigh feel better. I laid her on the table and held her hand, she really didn't like the mask on her face but it took 2 deep breaths in and she started to fall asleep, I then had to leave her. I did good and only cried a little.

We were taken to post op and was given a timer. It went off after an hour, they called the or and we were told everything was going great and Haleigh was doing wonderful. 55 mins later Dr. C was out telling us she was in recovery and would be there for about 20 mins then they would bring her to me in post op. She was still sleeping but breathing all on her own age woke up for a min the laid her head down and slept for another 45 mins. After that she wanted me to hold her and her binky and cup. After the nurse saw her drinking age went over everything with us and gave Jason her pain meds to get filled, he ran down stairs and did that while we waited our 30 mins, after drinking before we could leave. By the time Jason was back we were ready to go.

We went to the hotel, Jason dropped me and Haleigh off while he went to get is something for lunch, since we had not eaten that morning and it was 11.30 already. The hotel was super sweet and helped me up to my room with my key, they also told me any thing we needed to just ask.

Haleigh did good through the day and night Dr. C came by the hotel about 4 to see her and was very helpful with some questions we had. We went to see him Tuesday morning and decided she was doing so well, we could head back to mobile. The weather was progressively bad, so we decided that since we had to take Jason's mom home anyway we would just stay with her for the night. Headed home in morning!

Haleigh & Dr. Conners

Haleigh with Dr. Conners at her pre - op appointment
the day before her first surgery in Atlanta!

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!

Change of Plans

I got an e mail from Dr.C's office last night, and we got a small set back, a small change of plans. They had to move her surgery date from Feb 22 to March 8th. This date is set though and everyone has agreed. I know in the end its only 2 weeks and everything is going just as it should be going, but being her first surgery I wanna scream WHAT DO MEAN 2 MORE WEEKS!! But I am just trying to be patient although I have never been good at that ever!

So our plan is to leave our home at 5 am on Monday morning, I am going to be taking lots of snacks so that we don't have to stop every time our drinks need to be refilled. We have a nice cooler that plugs into the car outlet we got from Jason's trucking days, we will use that for cold things.

We will stop for lunch, and have Haleigh's appointment with Dr.C around 1 Monday after noon, then we will head to the hotel or the Ronald McDonald house where ever we will be staying. We'll most likely nap then take Haleigh to a park or some kind of open play place so she can run around, we will eat dinner and head back to the hotel.

We will need to go to sleep early because surgery is at 7:15 am Tuesday morning! We will need to be at the hospital at 5:15 am! So up at 4!?! Going to bed early will be a must. I am not for sure but my thought is we will be back at the hotel after lunch but before dinner.

I am not sue how Haleigh is going to feel either buy my thought is she'll feel pretty rotten, so I will probably send Jason for food that night. The next day, Wed, Haleigh will go back to see Dr.C, we will stay one more night then come home on Thursday morning. Sounds like a lot but I think every thing will run smooth.

We will rest and relax at home until the next Sunday. Sunday we will drive back to Atlanta spend the night have an appointment with Dr.C on Monday and drive back that night. We will not have to go back after that until her next surgery 3 to 6 months later!

Going to Atlanta

Well first I want to say we had the best Christmas and a great new year!

Last Friday afternoon I got a call from Dr.C in Atlanta. We got really good news Haleigh has been approved to have her surgery covered by children's hospital of Atlanta children's medical fund!

This covers what we have been waiting on every thing else has been donated. I almost cried when I heard the news.

But I held it together for the phone call so that I could really hear everything that was being said. I am so excited to get started, I am also scared I have peace with my choice of course and I feel this is right I know this is where we are suppose to be, I have prayed so much about it and talked to so many people that I know this is right.

I am not sure when we will be going I called to give the appointment scheduled the best days for us in Feb and March on Monday, but I got a message saying the office was closed so I called back yesterday, again closed. I am thinking now it's because of the weather up there, so if I do not hear anything by Friday I will call his cell phone.

No that is not a typo I have the doctor's cell phone number, just in case I need something. Another reason Atlanta feels so right, he really cares for Haleigh.

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!

Updates

There is a Foundation that has acepted Haleigh into their surgial program. The only problem is the foundtion is new and in need of funds. They are in Atlanta and are working hard to raise money just for Haleigh's surgeries. The Doctors name is John Connors M.D. and if you like you can check out his facebook page. 

He understands why this is so important to me and for Haleigh. 

They are having a fashion show in Ga. soon as a fund raiser and my sister Heather Montz and my friend Jennifer Holt have some great plans for some fund raisers here in Mobile. I hope when we announce what they are everyone will want to come, its going to be lots of fun!!

This is a much longer road than I ever thought it would be, but by the grace of God we will make it to the end!!