Drain Free

Haleigh is now tube and drain free!! It wasn't bad taking it out, no crying, not scared no pain.

I still haven't talked to the doctor I called left 2 messages yesterday and 3 today. All voice mails. I'm not even sure they have gotten them. Her drain was still putting out about half a ml. A day. But I had no choice tonight while taking her bandaid off I cut the stitch. So I told Haleigh that it was time to take her tube off. She was excited and I told her to pull. She got this look on her Face saying "me? Really" I pulled just a little and then she pulled it the rest of the way out. When it was out she of course wanted a bandaid but she said "ah much better". Poor baby must have been uncomfortable.

Still draining

I called the dr office 3 times today. Left 3 messages and will be calling back in the morning. I don't know why they have a hard time getting my messages. I know they are going to say they didn't get any from me. They always say that.

Haleigh's drain is draining still so I'm not sure if they would have let me pull it tonight or not but man I want to so bad. I almost did any way and if it had not drained after her bath any I think I would have. It's such a small amount though in not even sure if it matters. I mean we are talking less than 1cc all day today. She's gotten pretty use to it though. She rucks the little tube behind her ear and makes sure the longer part is taped to her shirt so it doesn't pull. Then she goes about her day like its nothing. I'm pretty sure I'd still be in the bed from the first surgery. Needing something, she's so strong to go through it all. She's less swollen and less bruised today. She looks like my Haleigh.

Playing and Fundraising

Haleigh is outside playing today. Jumping around as if nothing ever happened. She still has her drain but we tape it to her shirt and she has no problems with it, although it does get in the way sometimes. It should come out tomorrow.

Her skin is still a little pinker than the other parts and some is blue and I'm thinking that is normal she always has a little bruising.

I've been doing a lot of thinking on how I can do fundraising for our upcoming trips and together with my family we've decided to take a page from our own book and repeat some of our most profitable fundraisers.

I had been getting things together for a softball yard sale that I didn't get to finish because I was wrapped up in Haleigh so since I missed that, I've decided to hold a yard sale for Haleigh. We've set a date if March 9th and it will be held at my sisters house in Saraland. If you have anything you would like to donate please contact me or Heather or my mom and we will be happy to pick the stuff up for you.

We are doing a paint party on April the 27th we love our paint parties.

We are pre selling cookbooks. That's right our cook book is finally in production. Presell price is 15$ after they come in its 20$ so don't wait!!!

Update 02/21/2013

Haleigh is doing really well. I gave her a shower and removed all the tape that was stuck to her hair. She was such a big girl. I also changed out her band aids. Again she was a little scared but didn't cry. Haleigh does much better with things when you explain things to her. So this time there is no hair under her tape. We made extra sure of that. I'm a little concerned with removing her drain myself. I don't want to screw it up. I feel like I messed her fill up and maybe that I gave her the infection because I didn't do something right. I don't want to pull the drain out wrong. Haleigh hates that thing! So I know she can't wait until I can remove it Monday. She's such a trooper I'm so proud of how she's handled all of this.

Painting For Haleigh

The 3rd annual Painting for Haleigh date has been set!

I'm very excited because last year I was unable to attend and this year I'm bringing Haleigh.

This event is always so much fun for everyone who attends.

We will be serving refreshments during the party.

So mark your calendars and plan on coming and having a great time.

The 3rd Annual Panting for Haleigh is scheduled to take place SAturday April 27th, 2013

These are the paintings we will be choosing from this year.

Home

Well we are home again.

Haleigh is doing good. Recovery is going well, she still has a drain and that should come out on Monday. She hates the drain and it's not my favorite thing either.

We go back in 3 weeks. Should have another surgery in 3 months and will go to Birmingham for fills every week for 10 weeks then removal surgery!

Did ya get all that? Cause my head hurts.

Removal Surgery

Well we had to take Haleigh back to Birmingham today. It was very rushed.

I called the doctor at 9 this morning and was put through to the PA because he doctor was in surgery. I described what was going on and she said since we were so far to e mail her some pictures and she would text them to her doctor. So I took 4 just the way she said and then sent her one from yesterday. It didn't take long. 20 minutes tops and I was called back with the news to head to Birmingham. The dr was in surgery and all he said was to head up. But he was pretty sure the expander was going to need to come out.

We got everything together and left the house by 11am. It was a rough trip. Haleigh didn't eat much breakfast and was hungry but she couldn't eat or drink anything.

We arrived at UAB AT 4pm. We had to stop twice for Haleigh to go to the bathroom.

We were taken right to Admitting and her surgeon came there he took one look and decided it needed to come our. We were take to her room gave her a bath and dressed her in her gown. I was telling her how we would need to take her bubble out but everything was going so fast that she was scarred. I tried my best to sooth her though.

By 530 she was all prepped and by 630 she was being wheeled into surgery. I then ate for the first time today.

Her surgeon said it would take about 30 minutes and it took an hour, he said there was just so much fluid and infection, and he had to leave a drain in as well. 1 in 10 get infected None of the nevus was removed. We can restart with a new expander in 3 months. 99.9% never have another infected expander. We will try again.

Haleigh did great as always in surgery and in recovery. By 8pm we were back in our room. Everyone has been awesome up here. And I'm confident in the care we are reviving and I know we are still doing the right thing for Haleigh.

I am so ready to have this chapter in our lives and I'm ready to move on. But I know we are not on my time we are all on Gods time. Everything happens on his terms not ours.

Thank you for all the prayers and thoughts for Haleigh today and always.

Updating 02-17-13

Today has been much of the same. Haleigh is very whiny she wants me to sit with her, but unlike yesterday, today I must get some things done. I have stopped and just held her so its taking me 3 times as long as normal to do things. But I am getting things ready.

Haleigh woke up with a slightly elevated temp this morning 99.9 and complaints of pain. So I gave her Motrin. I'm scared the pain meds are maybe hiding a fever, but I can't just let her be in pain.

I know she needs to be seen and probably Iv antibiotics. So we will be heading to Birmingham this week. I needed to get the house in order and all the clothes clean. The other kids need to have their uniforms all together and cleaned so I've been working on that today. I don't know how long she will need to be there buy looking at the pictures I know it will be an overnight stay.

I put together these pictures
The first is from Thursday, the second is yesterday and the third is today's.

Hold me

That's what Haleigh has said to me all day "mommy just hold me". So what do you do when there is dishes to do, a floor to vacuum, brownies to make, and clothes to wash? Well let me tell you as a mom when your baby needs you, the dishes wait, the floor had crumbs, the brownies burnt, and the clothes are still dirty, because I held my baby today. We watched Disney movies and laid on the couch. I then had to go to Madalyn's sift ball pot luck. And my mom watched the kids for me. I'm so glad she was here and ready to go if need be at any time. I come home and it's more "hold me". And that's ok. She needs me and i will by here to hold her. I wish I could take this pain and hurt for her. I hate it so much.

She's had 2 doses of antibiotics so far. And I don't see any difference yet. I know that doesn't mean it's not working just that I can't see it yet. I'm staying positive. This will work and we will continue with fill in another week (won't be able to do it this week). We will not loose the expander to infection and in a couple months we will have removal surgery!

Infection

Today Haleigh woke up and her expander looked red. I ran Madalyn to her softball practice and then came home to check Haleigh out. Took a picture and posted it on my support group page and everyone thought it looked infected. I called the doctor in Birmingham and he said we had 2 options. One we could drive there now and be put on Iv antibiotics until Monday when her surgeon would be back in. The coving doctor would only be there for a surgical emergency. Or we could start oral antibiotics at home and call back Monday. If she Is better Monday we will probably be seen by Friday any way. If she is not better we will be seen on Tuesday. If she develops a fever of 101.5 or higher we will need to head on to Birmingham for Iv antibiotics. I decided to try the oral antibiotics at home first.

This is so had. Haleigh feels bad. And as her mom I just want to make her feel better and I know she will be more comfortable at home than in the hospital. And then there is the drive there and back. I hate to even think about the money. And really I would spend every dime I have to make sure she gets everything she needs. But it's still stressful. I need to chill out and just think
about right now today and a day of toy story movies and Peter Pan. Let God take care if tomorrow and focus on my baby.

It's so hard!!

Please pray for Haleigh.

The first picture is from Thursday the 2nd one is this morning.

My baby

I am having a really hard day. I hate this so much. I never wanted to do expanders. They scare me. And now that we have them. I hate it. My baby is hating it. She was so ready for her bubble she wants he nevus gone. At 4 she knows what she wants. She just didn't understand what it was going to take. My heart brakes for her it really does. I worry about her. How her life is going to go. I know we are doing the right thing with removal but it being right doesn't make it easy. I don't want my baby hurt any more. I just want her to be able to be a normal girl and for her not to worry.

She told me tonight she hurt. I asked her if it hurt really bad or a little she said really bad. I gave her some meds. And she is feeling better. She deserves so much better.

Next week

I contacted the head of surgery at children's hospital this morning and he said that because of the placement ( face) he would suggest plastics help with the fills. I was transferred over there and the Dr was not in today but his nurse paged him. Dr. Harris saw Haleigh when she was under a year and he has the worse bed side manner, but he has agreed to try and help me with fills. He will do them if she will sit in my lap and let me hold her. She did while we are in Birmingham. Please pray this works if it doesn't we will have to travel to Birmingham every Thursday morning for fills. We were not prepared to have to do that and we have not raised the funds to travel there and back each week for 10+ weeks. It cost about 200 for each trip. We have enough funds left for 2 trips and Maybe a 3rd. But that's it.

I believe God will provide for us a way for Haleigh. And I trust that if we must go to Birmingham that means that is best and what God wants for her. I also trust that God will provide the funds in some way to make sure she gets there.

From bad to Worst

Today was the day. We talked to Haleigh last night and this morning about her fill today. She was scared but ok. Then came the "magic cream" ( that nubs) and she cried. Then came the gloves and she fell apart. So we decided to wait until she was asleep and do it.

She falls asleep, I put on the cream and wait. I get everything ready and as I go to start she wakes up. We hold her down and she cried so hard. It was so bad much worse than last week at the dr office. Haleigh was screaming, Jason was yelling at me to hurry up and I was trying and crying so I only got in 20cc. Better than no fill at all I guess, but tomorrow I will be calling the head of surgery at children's hospital to see if his office will help with fills. If not we will go to Birmingham every week. Jason refuses to have them done at home every again. Home is a safe place. Not a place to be scared. :-(

First Fill

We traveled in the rain today to learn to do fills for Haleigh's expander. And to make sure she is healing good from surgery 3 weeks ago.

Good news she is healing perfectly. Thank goodness. She however didn't like the fill. She didn't want the nurse putting on the "magic cream" (that numbs the skin) on her. Then she wanted me to hold her. Then she just wanted her daddy. (Who was at home) she was not in any pain because we were still filling it when she stopped crying. So I believe she was just scared.

The doctor gave me all the things I need to do the fills at home every wed. If we have any problems I can call him and they will see me on Thursday. But there is also 2 drs here that will help me if I need it. I think I am going to be able to do this at home though. It's not hard. The actual hard part is going to be keeping Haleigh still so I don't poke her skin and I get the port everytime.

I have enough supplies to do 6 fills the. He wants to see her in the office on March 21st to see how we are coming with the expander and how much we've gotten in it.

The expander will hold 300cc. We are using a 30cc plunder so and there is 30 cc already in there so I'm hoping in 8-9 weeks we will be done!! I am so excited to use that word!

Learning to fill

Tomorrow morning we will be leaving our house at 730am to head to Birmingham. Haleigh will have her follow up appointment. And I will learn how to do her fills. This is the scariest part for me. Even though they will be giving me numbing cream I'm still going to be injecting my child once a week for 3ish months. I'm trying to look at it as 12 times. In the span of a whole life time 12 is a very small number of weeks right, I know I can do this. I just worry on how Haleigh is going to do with it all. I wish she was younger and didn't understand, the. Maybe I could do them while she slept of she could be distracted. But as an active 4 year old there will be no distraction big enough. We will just have to talk her through it.

So safe travel prayers, and strength for me! I will update when we are home!

Follow up

Haleigh is doing really well, her fever was from a virus that ran through everyone in our house. But everyone is better now.

Tomorrow is 3 weeks from surgery and Haleigh has had no problems. And the expander and skin look awesome. We go for her follow up and for our teaching of the fills on Thursday. I'm really nervous about the fills. I know I can do it. I'm just worried about Haleigh and how she is going to do. My mom is going with me so someone can hold Haleigh's hand. She won't even let me put a band aid on get with out someone holding her hand so it's very much needed.

Our next step is keeping her well through fills and then removal surgery in April. It's going by so fast!