1 month post op

A month post op and Haleigh is acting her normal self. She still has some healing to do. Stitches are slowly dissolving, she still has some tenderness around her ear and nose. We have started doing some Antibiotic cream twice a day. Her follow up was moved to January 2nd. After that we will see what the next step should be. I think she may need the small surgery for her eye.

1 month post removal surgery. 

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. 

 

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. 

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.

Pictures of Haleigh's 5th Birthday.

Happy Birthday Haleigh

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. 

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.

Yard Sale number 3

Today we had a yard sale to help with Haleigh's expensive trips to Birmingham. We made 130$. That is going to pay for about half of our next trip. Thank you to everyone who has helped out.

Speaking of next trip. I called Birmingham and will call again Monday if they don't call me back. I am so ready to get the surgery scheduled. This will be removal surgery so it's a little more detailed a did course we will be staying over night in the hospital. 

I will update when we have the big news. 

Uncomfortable

Haleigh is getting uncomfortable and I don't blame her. If I had a bubble on the side of my face I would be uncomfortable too, Honestly I would have been complaining long before now. I am amazed by the ability and strength my daughter has.

We are at 250cc of saline now and we will try to add in another 30cc tomorrow night. I have had to give her Motrin this week because at first she said her bubble hurt. Now she says its pulling her nose. And I can see how it feels like its pulling her to one side. I can't wait to have this part of the process over with. I know I have said this over and over, but I hate the expander. I love that they were invented and are there to help children and others like Haleigh, but I hate dealing with them. I never wanted to do expanders and I am praying we never have to do another one. I am in awe of these other parents who do 3,4, or more rounds of expanders. I am not sure I would be strong enough to handle round after round of this. But I also never thought I would be strong enough to do one round, I never thought I would be able to fill her bubble at home myself, and I do that. I guess you never know what you can do until you are given no choice.

So Haleigh is uncomfortable but not in pain. Her bubble still has a way to grow, and I know she's going to be more uncomfortable as time goes on and it stays bigger after each fill. But we dont have much longer. I should have a removal date in a couple weeks. I can call them when I get to 280-300 and we will set surgery 2-3 weeks from then. If we can get the 30 in this week we will be at 280. We are looking at the week of Thanksgiving at that point.

Another fill up

Everything went great tonight. So excited. Skin look great. Was able to easily get in 30cc tonight. So we are at about 250cc. Not much longer!

Back on Track

We made the trip to Birmingham last Thursday and after massaging the expander and tilting her head just so we were able to get 30cc in. I was so excited that we didn't have to have surgery.

The first try the dr did was just like at home.... Nothing. So I am not crazy it was/is not exactly right. Our options were  to go in and see the line and port to see if It was kinked or blocked with scar tissue or keep trying. We tried again after the dr massaged the expander and he had her tilt her head over and it went in. I have a lot of Hope that this weeks at home fill will go smoothly. 

With the 30cc we got in at the office we are at 210cc total.  Our goal is 350ish. We will set up surgery date when we get to 300. I hope to be able to get in 30 a week still. But her expander is bigger now and it stays tighter for longer so we may not be able to get 30 in every week. But our personal goal is to have surgery in about 6 weeks. That puts us at thanksgiving. I'm ok with that. I want her good by Christmas. 

Haleigh is doing really well. Learning and playing. She's so smart and is wanting to start "real school" next fall. I pray I make the right choice when it comes to her starting school. When and where.

Last week... this week

Last week's fill went awful, I dont think I got anything in. I counted it as a loss. I am not sure what was going on, but she was in pain and I just stopped and started over, more magic cream, and it still was hurting. she was flinching and moving, something she never does so I just told her great job and that we were done. I couldn't get the placement right or something I am not sure, it just felt off so I just pulled it.

That was last Sunday night

I then had surgery Monday and there was no way I could have done a fill this week, we will however be attempting one tomorrow night, I am feeling much better and I think things will go better, or at least I really hope so. I hate that we had the wasted (or so it felt like it) non-fill last week, but I'm not going to hurt her. The last time it hurt she had an infection and we didnt know it yet. I dont think now that she has one, if she did she would have become red, swollen, and sick over the past week, but the fact that it hurt was enough for me to hold back and just see. It's been fine though.

I wonder sometimes if she is developing a tolerance to the magic cream. I think I will leave it on a little longer this week to see if it helps, we normally leave it on about 20-30 minutes, I think I will try 45 tomorrow night and just see if it will control her pain better.

I will be so happy when we are done with the expander, This should be our only expander. Her nose and lip, will probably have to be done with a graft or excision only.

Here's to a better fill tomorrow!

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.

What it taking so long ?

I wanted to let everyone know that we have not forgotten about Haleigh's blog. We have hit a few snags on our journey, but are pleased to announce that we have resolved them all and are back on track. I will be updating soon with a lot of new and exciting details so stay tuned.