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!

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.

Better... Lost

Better

Haleigh is feeling better, we probably will not be doing a filling on Thursday, she needs to be completely well for that and still has a cough. I don't think I will need to wait another full week though. I am thinking by Saturday or Sunday she should be well enough to have a fill done.

We are taking our family to the fair on Sunday afternoon, its suppose to be a beautiful day. We were going tomorrow night, but I think it will be better for Haleigh not to be out on the windy mid-way at night. Got to keep that girl well!

Lost

I'm thinking maybe my message to the surgery scheduler got lost somewhere. I was told she should call me by today and well she didn't. I am going to give her a couple days I mean maybe she is trying to get us in so we are not there Thanksgiving Day. I would rather not be there that day. I really do want to know when its going to be though. I am a planner and I cant plan without a date.

Cough, Cough, Smile

Haleigh still has a nasty sounding cough. However she is Happy as can be and feeling good. I don't believe this cold is going to stick around very long. We want it gone!

I talked with Birmingham this morning and they are scheduling her surgery and calling me back today or tomorrow with a surgery date. Said to make sure she is drinking a lot of fluids and as long as she has no more fever she doesn't need any meds at the moment. If her expander gets red call right away and We can move surgery up or give her antibotics if needed, but because of all the new super bugs out there they don't like to give meds unless they actually are developing an infection. I agree with that.

Not much longer!

Communication.... Or the lack of

Apparently I had missed a phone call yesterday from Birmingham, I know exactly when I missed it, I was on the phone with Pre-op with the Hospital for my surgery on Monday. The call waiting just said "unknown" number "unknown" I had the thought that if it was very important that they would call back or leave a message. Neither happened so I figured it was either not important or a wrong number. It was however important and no one left a message or called back.

We left for Birmingham early this morning at 6am, her appointment was at 11am. We were hoping to be seen early and head back early. We get there at 10:05 and sign in. I get called to the window at 10:20. Our doctor is not there all his appointments have been rescheduled for "personal reasons". He was also not in the office last week. They called the PA. She was the one I talked to last week. She said she called yesterday to tell me the appointment was moved to October 10th and that they overnighted me the supplies I need. That was awesome........ EXCEPT I was already in Birmingham. I had already driven 4 hours to get there, I had already paid out the 150$ to get there and back. So we leave, There was really nothing else to do. We drive back to Mobile and my supplies are waiting for me when I get home.

I am not sure how I feel at the moment. Who only calls once, when they know I live 4 hours away! Its so aggravating.

No News..... Road Trip?!

I havent heard from Birmingham yet, so we are planning on heading up Thursday morning. While we were hoping to avoid this one trip up there, sometimes things work in a way they need to and if we have to go maybe we really need to go. May be her surgeon needs to see her progress, we probably need to be scheduled in anyway. I didn't really think about what we were suppose to do after her expander was full. Do we call and say "hey we are done"? He's usually booked up a month or so in advanced so with 6 fills left to do we probably need to head up and talk about what will happen on expander removal day and when that will be. It will give us some comfort of having him see our handy work at filling and how well she is doing. The only draw back is the long ride there, the 45 minutes we are actually at the office and then the long 4 hour ride back. He appointment is at 11am so we should be back by dinner Thursday. I will be sure to update on what the doctor said after that.

Birmingham

Heard from birmingham today, they said they use to ship supplies all the time, but it has recently changed and they can't ship the numbing cream anymore. Lucky for us we have plenty of that. The only thing we are not really sure of is the Needles. She's going to check for me on monday and if they can ship it they will. If they cant ship it, she is going to call home supplies and see if our insurance will pay for us to get it from them, If they will pay for it through them, OR if it is cheaper or about the same to just buy the supplies (under 200$) then we will do that. If its more we will drive to birmingham see the doctor for a check up and drive home. PLEASE pray that they can ship it to us, or that we can get it from home health here fore a lesser price. It would be so much better on us to no have to go all the way up there to be told what we already know, and that is Haleigh is doing wonderfully!

Another surgery in the bag

Haleigh had surgery in Birmingham in the 26th of June. She did so good.

The hospital is really great gave her lots I things to do, while we waited. I was so tired. We had to be there at 730am so we left home at 230am. Haleigh slept all be the last 30 minutes there. She colored while we waited. They came to get her at 11 and I walked with her to the bubble wall. The bubble wall is where you say goodbye. Haleigh gave me a kiss and said "bye mama, I'm going to sleep see you after I wake up" smiles and was gone. It was the first time she's gone with out tears. I wanted to cry so bad, I'm sad that surgery is normal and that in her little life being put to sleep after being rolled into a room full of strangers is ok. On the other hand I'm glad she wasn't scared.

Dr Grant said things went really well. She had a lot of scar tissue from where the expander was before so he cleaned that up and couldn't put the expander exactly where it was before. Her port is not behind her ear it's in her cheek. But I think it's going to go better this time, it looks better and less painful. We all have very high hopes.

Haleigh was given Morphine as soon as she was out if surgery, that was the only time she needed anything other that Motrin. She slept that night from 10pm until 7am without waking up for pain meds. She got some Motrin at 730, showered, ate and was ready to go home. We left the hospital at 10. Traffics was really bad and we didn't get home until 4:30. Yes 6 and a half hours. It should have taken 4.

At home she has only needed Motrin for pain. She has slept a lot, and isn't eating wonderfully but is doing great. We go back for post op and our first fill in 3 weeks.

On the Rode Again

In about 7 hours we will be headed up to Birmingham again to see what's in store for Haleigh. Suppose to be a pretty day. Maybe we can get by without driving through rain. I will update as soon as I can about what the dr says!!

Next Up

Just a small update.

Haleigh is doing very well. She has fully recovered from her infection and two very close together surgeries. She's growing and becoming a big kids. Her next appointment is Tuesday the 23rd. We will be discussing when her next surgery will be and how to go about doing fills. I know I won't agree to do them at home. I'm not sure if the doctor will want to find a dr here or for us to drive to Birmingham every week. I don't think doing the fills at home was what caused the infection but I am not comfortable doing them at all. Especially since I'm on my own with no help holding or detracting her.

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.

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.

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.

All Set

We are all set to go to Birmingham on Monday. All the kids are taken care of and my mom will be going with me. The hospital called last night and asked there 101 Health questions and she passed those then the dr office called this morning.

We are to be at children's hospital on the 3 rd floor at 10am. Nothing to eat after midnight and nothing to drink after 6am. I don't think it will be too hard for her she normally won't eat until around 930 any way and we will be in the car then at the hospital so I'm thinking she will be good and destracted. I'm hoping so anyway.

I found her some button up shirts today and a zip up footed pj. They only had 1 in a 5t left, but that's ok. I am really wanting it more to bring her home in since Tuesday morning is suppose to be 32 an the high for the day is 44. It will be warm and I won't have to pull it over her head at all. I have a feeling she's going to get some good use out of it.

I was also given the name and number to the head of surgery at the children's hospital here that can help with fills and if we have any problems. That's great news because that was Jason's biggest fear that something would go wrong and we'd have to hurry to Birmingham in the middle of the night.

I'm nervous but excited and ready all at the same time. Please keep Haleigh in your prayers this week.

Still on track

I haven't updated in a while and if your following this blog your probably aware as to why. If not quickly I will say that we had a great loss in our family as Haleigh's newborn brother passed away soon after his birth. You can find all the information on that at joshuahensongreer.blogspot.com

With that said we are still on track for surgery on Monday the 14th and yes that is this coming Monday. I will know the exact time tomorrow and then we will be all set. I've been talking to Haleigh and she is understanding about surgery now that she's 4 she is more aware of what's going on. I can tell she's a little nervously excited. It will be the first time we've done expanders and we are having an over night stay in the hospital. I am nervous as well since its a new surgery and new doctor and new hospital. I know we are in good hands its just mommy worries.

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.

Christmas Time & Other Updates

Haleigh is loving the lights and the tree. When we ride down the road she is always saying "mama mama look look lights!" Its so exciting to see your children so excited about Christmas lights.

We have taken Haleigh to see Santa a few times. The first time was before Thanksgiving, we were just at the mall and didn't expect to see Santa, but he was there and all the kids wanted to talk to him. Haleigh sat in the stroller and did not cry, she took her book he gave her and waved good bye to him. This made me think, we needed to have Santa pictures made, because they would be really good since she was not scared. So the week after thanksgiving we took them to the bass pro shop to have Santa pictures made. Haleigh would not get down, would not talk to him, would not wave! We got their free offer picture of none of the kids looking and Madalyn holding an upset Haleigh. Then we went to a family Christmas party, Santa showed up and as soon as he walked in the door, Haleigh starts screaming like someone was hurting her, it was crazy, but by the time he was going she had waved a few times. This past weekend we went to the Shriners Christmas party for kids they have helped this year. They sent me a invite in the mail in October, we RSVP in November. They fed us lunch and had a DJ playing Christmas songs and other children's songs. Haleigh no plays Head, Sholders, Knees, and Toes all day long! The Shriners are so so nice. The bought Haleigh a gift, a peek a boo baby, she loves it. I think that is going to be it in Santa visits, although Haleigh was not scared at all at the Shriners party.



Other news, Haleigh is off her formula, she is on whole milk! We are so excited, we go to the GI on the 16th of December and can not wait to tell him she is doing so well on whole milk.

We are traveled to Birmingham, Alabama to see plastics at UAB on December 28th to see what they have to say! They were willing to do the surgery but seemed to have cocerns about her size. I am still trying to decide what to do.

Haliegh playing in the waiting room at UAB Children's South

I want to again thank all the people who have given money to Haleigh, please know it is all going to her. Some will be used to get her to her appointments, because if we can't get her there what's the point of having all the medical covered?

Haleigh is doing good with her Asthma too, we now have her on the right meds it believe to help her get through the winters. She weighed in the other day a 24 pounds and 8 ounces, and even though her iron level is a little low at 10.6 she is healthy, there is nothing better than hearing the doctors say she's healthy!