Skylar is on her way to Miami!

06/15/01

The liver was damaged. Skylar and Marquette will stay in Miami so they can watch Skylar closely. Her condition is deteriating quickly. Pray for Skylar and Marquette.

06/16/01
12:30 a.m. EST

Skylar is in surgery!

7:15 a.m. EST

Skylar is in stable condition. They are just now removing her liver. Pray for both Skylar and Marquette.

06/17/01
7:00 a.m. EST

Skylar made it through her 13 1/2 hour surgery. She is in critical but stable condition. Doctors are concerned that she ran a steady 101 degree temperature through surgery. The first week after a transplant is the most critical. The biggest concern is infection, rejection and bleeding. Skylar will remain in pediatric ICU for 3-5 days before moved to her room.

Marquette will get the hospital address if anyone should want to send something to Skylar. Please do not send fresh flowers or fruit. She can't have either.

06/18/01
3 a.m. EST

Skylar is getting a blood transfusion tonight, still very swollen. Her right upper lobe in her lung collapsed. They are doing everything they can to re-inflate it without inserting a lung tube.

She actually talked to me tonight and opened her eyes for a second to look at me. She said Mummy pick me up please... I cried but the nurse helped me hold her on my lap and she went back to sleep. It felt wonderful :)

I'll send another update later... Marquette

P.S. Still concerned about possible infection and temps but they are watching her very closely.

Hi Everybody,

Well, tonight Skylar has taken a few baby steps backward. When we got to the Peds Intensive Care Unit this morning Skylar actually looked a little better to my husband and I. But we were told they are still concerned about her lung and the main artery. Because her veins were so small they had to split the main artery vein to make it larger. One side is doing great the other looks like it may clot which is not good! They gave her more plasma tonight because her blood was too low and so many other drugs I have to write them all down to remember them. They are also trying to tank her up again on the IV fluids so she will be swollen again when we arrive in the morning. Just came back to the apartment for a shower and a quick nap. The fluids and Heparin will keep the blood thin so the vein has a better chance of not clotting. She has bruises everywhere and her eyes are swollen but she is still my sweet Skylar. She is hanging in there. Thank you for all the prayers..

God bless you all,
Marquette

06/20/01
7:30 EST

Please everyone we need you.... Skylar has been rushed back to Emergency Surgery, she is bleeding in the abdomen. She is critical!!!! WE NEED YOUR PRAYERS!!!!!! Please Lord don't take my baby after all she has been thru please.....She is at Miami/Jackson Memorial Hospital in Miami, Florida.... Thank you for the prayers!!!!!!

Marquette (Skylar's MUM)

12:30 p.m. EST

Skylar is out of surgery. They were able to stop the bleeding, the liver is not damaged and she is still in critical but stable condition in Pediatric ICU. Skylar has had 6 transfusions and they removed a liter of blood from her abdomen.

5:00 p.m. EST

The doctors have removed some of the tubes from her body and Skylar's normal color has started to return. She is still running a temperature and is in a lot of pain. Thank God she is making some progress, a little at a time. Keep praying for her and her mum.

06/22/01

Skylar is still in a lot of pain. They are trying to provide enough medication for the pain without putting her to sleep. Skylar spoke today. The nurse was playing 'HipHop' music. Skylar said "no moosic, no moosic". Marquette asked, "what's wrong, don't you like the music?". Skylar replied, "no". Marquette then asked "what would you like to listen to?". Skylar replied, "Cwaig and Faith" (Craig Morgan and Faith Hill are her favorite artists). Marquette put on Skylar's favorite cd's and she settled right down.

The Leaf Chronicle (newspaper in Clarksville) printed an article about Skylar today in the local section.

06/23/01

Skylar has been moved from Pediatrics ICU to Post Transplant Surgical Unit (PTSU). All lines have been removed except for 2 main IV lines in the jugular vein on the left side of her neck. She is no longer in critical condition. She is not in stable condition, they are still watching her closely for clotting. She should remain in the hospital for another 9 to 10 days.

Skylar is sleeping peacefully for the first time. She is smiling, talking and even hugged her baby doll.

Cards can be sent to:
Skylar Haynes Room 6067
East Tower 6A (PTSU)
1611 NW 12th Avenue
Miami, Florida 33136

Please continue praying for her progress. Thank God and God bless you all for your prayers and support.

06/24/01

Hi Everybody,

Skylar is doing wonderful today. She actually walked around the hall a few times. She was crying very quietly but when she got back to the bed she smiled. It was all I could not to cry myself so I gave her a big smile back. She is finally sleeping and hopefully will have a good night.

I want to thank all of you for praying for Skylar. I know in my heart the Lord heard your prayers and saved her when she was bleeding. That was the scariest time of my life. To watch Skylar go thru all this and then not make it, was impossible. Sometimes... we don't always understand the Lord's plan but He is always there.

God bless you all and thank you for caring about my Skylar.

Marquette Haynes (Skylar's Mum)

6/26/01

Hello Everybody,

just a quick note to let you know about Skylar's progress. Well, the last few days she seems a little depressed and has really missed her sisters. So the Doctor let her go to Mickey Dee's today. I wheeled her into McDonald's in a wagon and a mask on her face, it was so cute. Afterwards, we had to come right back because they were changing the bandage on her incision which has become infected in one area.

They are still concerned about her hepatic veins clotting and are doing an Ultra Sound everyday until they are sure it won't clot. She has also been walking around the hall at least once a day. She cries because of the pain and is hunched over as she walks but she does it anyway. That's my little fighter. Thank you all for the prayer... God bless you

Marquette Haynes (Skylar's Mum)

06/28/01

Skylar may get to go home on Tuesday or Wednesday, depending on the condition of her incision which has become infected. She is no longer running a temperature. She will have a home care nurse come twice each day to give Skylar her IV medications.

Skylar and Marquette will be staying in an apartment in Miami near the transplant center for the next couple of months.
Here is the address:

Skylar and Marquette Haynes
The Summit Aventura
3040 NE 190th Street #312
Aventura, Florida 33180

06/30/01

Skylar is experiencing mild rejection. It is not serious yet, still treatable with medication. If liver enzymes are still high tomorrow, they will do a liver biopsy.

The infection in her incision is better, it is drying up some.

Thanks for all your prayers and cards. Skylar loves getting mail and the cards really cheer her up. God Bless you.

07/02/01

Skylar is doing very well. She is out of the hospital. Marquette and Skylar are staying in an apartment in Aventura, just outside of Miami.

A nurse will come twice a day for cleaning her incision and giving her IV medication. They will be staying in the area for up to two months in case of any surprises with Skylar's health.

A "Thank You" to Matt, Maria, Misty and Jessie for raising over $1400 at the bake sale in front of Wal-Mart last week-end.

Thank you also to all those who have made a donation to Skylar's account. Every dollar helps.

God bless you all !!! Thank you so much!!!

07/07/01

Skylar had blood test done on Thursday, all liver function levels are good. Her incision is still infected. They removed 5 of the staples do to the infection.

Overall, she is doing well. Her father and sisters are coming to visit this weekend. Hopefully, this will bring up her spirits. Doctors are concerned that her spirits have been down which can affect her recovery.

07/19/01

Skylar only had to spend 2 1/2 days in the hospital. They got her medication balanced and she is doing very well.

Skylar is home in North Carolina for a temporary visit. They flew home on Tues., the 17th and will stay until Sunday, then return to the Miami area. She is thrilled to be home again.

07/30/01

Skylar is doing wonderful. Tomorrow she has her blood labs and sees the transplant team for an evaluation. She may be able to go home. A nurse will come every 2 weeks for her IV medications and Skylar will see a pediatrician for weekly blood draws.

N'Sync sent 5 tickets to Skylar. She will take her 9-year-old friend, Christine with her (the girl who had two kidneys and liver transplant).

08/10/01

Hi Everybody,

Many of you have been asking about Skylar so I thought I would give you a update. Skylar is doing WONDERFUL!!! You would never know this is the same little girl who went thru 8 operations prior to transplant and 1 emergency one after transplant at 5 days out. It's so great to see her swimming in the pool with her sisters, eating, playing, and most of all, laughing. She is taking a lot of different medications about 18 doses a day and does it without complaint although there are a few she makes a funny face after taking because she hates them :) But overall, the Lord has been good to us and we are very blessed to have Skylar still here with us.

I wanted to walk you thru the first days after transplant. For those of you who don't know her, Skylar will be 3 years old on the 24th of August. She was listed for a liver transplant on April 20th 2001 in Miami, Florida and received the call on June 15th.

The first liver Skylar was offered was damaged but we didn't know that until we had taken a lear jet Medflight to Miami. We arrived about 11:00 p.m. in the ER to find all the Doctors standing there waiting for us so I knew something was wrong. They told us the liver was damaged but after examining Skylar they wanted us to stay in Miami and wait. We stayed in a hotel that first night and found an apartment with Robin and Fred Ashmore's help the very next day. It was a wonderful blessing the apartment was 25 minutes from the hospital in a safe area of town.

We spent the morning getting supplies for the wait. At about 4:30 that afternoon (we were on our out way out to the pool for a swim) the call came again. We had 1 hour to make it there. It was rush hour traffic but my husband flew to the hospital, where we waited to begin. Fred and Robin Ashmore met us there, we were all so nervous but each trying not to show it. Skylar was laughing and taking pictures not knowing what was about to happen. She fell asleep just before they came for her so she won't remember being wheeled into the operating room. I was really glad she did. Fred, Robin, my husband Roy and I followed her down to the OR that was about 11:30 PM, we were not to see her again until 2:30 p.m. the next day.

At about 2:15 p.m., Dr. Kato, the surgeon, came walking down the hall with a big smile on his face...I remember running to him crying and hugging him. She was doing great there were a few problems, a temp and some difficulty finding an IV site. (Skylar had 7 IV's, 3 in her neck, one in each arm and both legs).

The first time I saw her I was so overwhelmed I started to cry, so did my husband. Nothing prepares you for how they look when you first see your loved one. Skylar was swollen everywhere, her tongue was so large it didn't fit in her mouth, her eyes were swollen shut and her little body looked so big it was tight to the touch. But I knew it was going to be ok the Lord was holding her hand thru it all. Skylar would smile again I knew it.

The next few days she made slow progress, off the ventilator on the second day but her throat was sore she couldn't talk to us just tried to open her eyes that were still very swollen. On the third day she could open her eyes enough to see me and asked me for the first time to hold her. I cried as the nurse helped her to my lap so did Skylar. I knew it was painful for her but she wanted to be held. It felt wonderful!!!

On day four she was sitting up in the chair by herself but crying a lot because she said her belly hurt. That's when I noticed her belly was bigger after transplant than before. I started to get concerned. She was very uncomfortable and the morphine was not helping. I knew something wasn't right. The nurse and I watch her closely all night.

At 5 a.m. I told the nurse I was going home for 2 hours to shower and change and I would be back. By the time I got to the apartment I was so tired I laid on the bed for 30 minutes before showering. At 6:15 a.m. the phone rang it was the Doctor. Ms. Haynes he said "we have an EMERGENCY", I need to operate. I can't wait for you to get back here to sign the form I need to operate Now!!!! Do you understand???" I said YES DO IT!!! The nurse than told us what was happening. Skylar was bleeding and they needed to stop it right away.

My husband and I raced back to the hospital for Skylar's secon surgery in 5 days. 4 of the longest hours went by before we saw the Doctor again. We were waiting with Julissa, Skylar's nurse in PICU. Skylar was still in surgery being closed but was stable AND WAS GOING TO BE OK. I think I breathed for the first time in hours. He first hugged Julissa the nurse and than told us it was Julissa who had saved Skylar's life. She had noticed the bleeding the minute her shift had began. "Minutes more" he said we could not have saved Skylar due to the fact she had already lost over a liter of her blood. A small child only has about 3 liters......I got down on my knees after hugging them both and starting thanking the Lord for keeping his promise and keeping Skylar safe.

We are home now in North Carolina awaiting a new brother or sister for Skylar and her sisters, due sometime in February....But now you see why it's so wonderful to see Skylar laughing and playing. We are 6 weeks out and she is acting like your normal little child. There have been many tears thru this ordeal but now they are happy ones. Her liver numbers are great and although there will be bumps in our future it looks like smooth sailing from here.

God bless you all and thank you for letting me share,

Marquette Haynes (Mum to Skylar)

8/30/2001

Greeting from Skylar's House,

I know it's been a few weeks since our last update but we have run into a few bumps in the road with Skylar. For the last 2 weeks she has had a running nose, an ear infection that would not go away and vomitting off and on. She had surgery this morning to remove her ear tubes, they were causing most of the problems. One tube was clogged with blood and the other had scar tissue in and around it. Hopefully, removing them will help her ears to heal. Bless her heart she kept telling me "her ears were not working." In spite of the few problems they are not affecting the new liver. It's working wonderfully.

She also celebrated a big day this pass week, it was her birthday, August 24th. She is now 3 years old. Wow, I still can't believe it but I'm so thankful to all our friends and family who never stop believing that Skylar would make it thru all this. It's been 9 weeks since her liver transplant and, other than a few bumps (none we can't overcome), she is doing wonderfully.

I want to thank all of you for the prayers and continued support for Skylar. The Lord has exciting plans for her and I can't wait to see it happen. Thank you for coming to visit, we'll see you next Friday the 7th of Sept. for our next update.

Until than god bless you all......Marquette Haynes (Skylar's Mum)

09/09/01

Hi Everybody,

Skylar is in the paper today. Since I know many of you won't be able to read it, I rewrote the article for you below. They did a great job in my opinion, tell me what you think?........Oh by the way GUESS WHAT I don't have chickenpox it was a heat rash :) :) YEAH!!!!!!

There is a huge picture of my husband holding Skylar and me looking on smiling. The Article reads...GIRL SURVIVES LIVER TRANSPLANT!!!

Asheville--Marquette Haynes saw how the power of prayer and other support from people throughout the world helped save her 3-year-old daughter's life when she seemed destined for death. Now this grateful mother feels it's her turn to give back what she can, which, in this case, is knowledge and passion.

Roy and Marquette Haynes's daughter Skylar, who turned 3 on August 24th, survived a liver transplant on June 17th, following nine surgeries before the transplant and one five days afterward. The toddler was born with Alpha1 Antitrypsin Deficiency, a genetic metabolic disorder that attacks the liver and lungs.

There have been numerous fund-raisers by friends and supporters to help defray the nearly $100,000 in out-of-pocket medical bills their family is facing. Thousands of people worldwide have visited Skylar's website (www.rdwebworks.com/skylar) and sent along their good wishes. Members of the Haynes church Biltmore Baptist, have encircled the family with prayers and love.

But it is another Mother, in Florida that Marquette Haynes most wants to celebrate- the mother of Amber, a 3 year old who drowned with her 4 year old brother in a backyard swimming pool just as Skylar's own liver was failing.

It is Ambers liver that now lives on inside Skylar, who is expecting to grow up healthy because Amber's mother was willing to give the gift of life, even in the midst of unspeakable grief at losing her only two children. Skylar is now cured of Alpha1.

With Skylar in stable condition, her mother is eager to help other families facing the same crises.

"I want to raise Awareness, to ask people to be donors to save lives", Haynes said from the south Buncombe County home she shares with Roy and their other daughters Jenee, 14, and Makayla, 5.

"A parent cannot imagine donating their child's organs, but if they only knew how many children they could save...the little girl and boy that drowned together, they saved 8 children, which, to me, is incredible. That this mom, in her time of grieving, actually thought about saving the lives of other children when she could not help her own," Haynes said.

In addition to speaking publicly- and passionately- in support of organ donation, Haynes also has been speaking to medical students, nursing students and others who will listen, about the Alpha1 disease, which she said is often misdiagnosed.

"Part of what I do, I talk to new doctors or students who are coming into the medical professions, who want to learn about Alpha1", she said. I'm coming from the perspective of a parent whose child has had a transplant, and has had a disease, and knows what to look for. It can attack children and adults, and there is not pattern to the disorder yet, but one in four Americans are either carriers or actually have it.

"If there is anyone who would like me to tell Skylar's story...I don't do this for money. I do it to help Skylar and anyone who might have this disease and it's undisgnosed," she said. "If I save one life, I did what the Lord wanted me to do."

This is printed in the Asheville North Carolina Citizen Times Today Sept. 9th, 2001. I also gave the Alpha1 1 800 number for more information.

9/29/2001

Greetings from Skylar's place,

I know this update is late in coming. I'm sorry to say that Skylar has not been well. Her ears are still bleeding off and on with no warning and she has been vomiting as well. The Doctors believes that she has Acid Reflux again. After she gets sick she feels better until she tries to eat or drink something, then everything starts over. She is on a great deal of medication both for transplant and for the Acid Reflux. But it does not seem to be helping. So Skylar and I are heading back to the hospital in Miami for a upper GI series and further testing to determine if they will need to operate to fix it. I'm hoping they will not have to operate but it may be the only way to relieve her pain. This is not the first time Skylar has had Acid Reflux. She had a operation in Jan. 2000 called a Nisanfundiplication. It's where they wrap the bottom of the esophagus to keep the acid from splashing up from the stomach. It took 10 days for Skylar to recover but she was only 13 months old at the time.

She also has an abscess or something growing on her incision they want to take a closer look at it as well. They may need to remove it, we won't know until after the Transplant Team has examined her. All in all these are all little bumps in the road. Nothing compares to the liver transplant which was the most difficult time but I'll be glad when she is feeling better again. The Transplant team told us to expect some minor problems afterwards so we are not worried. And I know in my heart the Lord is always with her.

I want to thank all of you who have continued to visit Skylar's site and pray for her daily. It means so much to us. I also want to thank Ms. Williams, 5th grade class for making it possible for Skylar to go to DisneyWorld for her WISH, Nov. 11. Ms. Willaims and her class are partners with MAKE A WISH. They have been doing the fundraising to make Skylar's wish come true. The kids are having a Fundraising Dinner Nov. 8th at Asheville Catholic School in Asheville, NC. They will be serving a Mexican meal catered by La PAZ's, a local Restaurant. Hope to see you all there.

I will not update her site again until we return from the hospital in Miami. We may be there only a week or two but when I return I will post an update right away.

God bless you and thank you for your prayers and support,
Marquette Haynes (Skylar's Mum)

10/15/2001

Hi Everybody,

I have promised all of you this update for a week now but I haven't been on the computer much, sorry.

Wanted to share with you Skylar latest experience at the hospital a week ago in Miami. If you remember they were looking for the cause of her vomiting and the abscess on her transplant incision. Well the mystery is solved!!!! She had a yeast infection at the bottom of her esophagus. VERY GROSS!!! Thankfully, she didn't need surgery to fix the reflux only a new medication and she is on the mend. The abscess on her incision was actually a inner stitch that became green with infection as it worked it's way to the surface of her skin. They did operate to remove it but there are others they could not reach at the time and will need to be removed as well. So far 2 more have come to the surface this week and will need to be cut out.

The testing was the worst part of our visit. I want to share this with you for future reference for children who may need this procedure done. They did a upper GI on Skylar the second day. Skylar is only 3 so please keep that in mind.

First they did NOT come for her until 2:00 pm in the afternoon that's a long time for a 3 year to be without food and water. Next, the contrast you are expected to drink is terrible so Skylar could not drink it without vomiting. They had to insert an NG tube down her nose into her stomach WITH NO SEDATION!!! During the procedure, because I am pregnant, I could not stand next to her but could watch thru a window. They strap her down with her arms above her head like a mummy. She started screaming "Mummy please save me, make the bad people stop"...it was awful. The NG tube fell out 4 times and had to be reinserted each time. There was blood running from her nose and mouth. I will NEVER let them do this again without sedation and would NOT recommend it any other way for children.

When it was over she held onto me so tight, we were both crying. The Doctor was very shaken up and told me he will never try it again without sedating the child. It was one of the worst experiences she has ever been thru and Skylar has had 11 operations so far including her liver transplant on June 17, 2001.

ONTO OTHER NEWS:

Skylar was chosen by the MAKE A WISH FOUNDATION for a series of commercials for North Carolina. (For those of you who don't know who they are it's a foundation for chronically ill children. They grant each child under the age of 18 a wish. Skylar will be going to DISNEYWORLD on Nov.10-15. Anyway.. she will tape them tomorrow afternoon along with 2 other wish kids :) They will be showing them thru the month of November all over NC on channel 13. We have also been asked to do a few radio spots as well. I thought it was kind of neat. She has become quite a little spokesperson for Organ donation and ALPHA1. I believe the Lord can take a difficult experience and make it into something good.

God bless you all and I look forward to hearing from you again,

Marquette Haynes, 5 months pregnant with 4th child and Mum to Skylar a beautiful 3 yr. old little girl transplanted with a new liver on June 17, 2001 in Miami, Florida after a 6 week wait on the list.

10/30/2001

Hi Everybody,

I wanted to tell you the latest from our house and wish you well at yours. Please be safe this Halloween or Fall Harvest :)

First I wanted to tell everyone that Skylar is potty trained!!!! Big news at my house since I'll have another in diapers soon. She was doing great before her transplant in June. But the transplant set us back a bit but yesterday she decided it was time!!! She took off her pull-up at 1:00 in the afternoon and has been going to the potty all by herself ever since than. I hide around the corner and watch since she doesn't want me to help. (laughing)

Next, many of you know that her incision has become a problem. We are not sure why but her internal stitches have been abscessing and becoming infected. She has already had one surgery to remove a few of them. Well there are 6 more abscesses all the way across her abdomen. So they have decided the best course of action is to reconstruct the incision. Cutting out all the old stitches and starting again. The transplant team will be doing the surgery sometime in the next month, I think. It's not an emergency but it will have to be done. This makes 14 surgeries for Skylar and that's not counting all the procedures. So I'm praying this is the last one. Please let me say that she is not in pain just very uncomfortable and tender.

The best news is on Nov. 10 we are going to DisneyWorld!!!! And Skylar is in for a special surprise!!! Brittany Christensen and her family will be going at the same time. (Brittany is a 12 year old little girl who had a liver transplant about a month before Skylar for Alpha1 as well). Brittany's wish was to go to DisneyWorld and meet Skylar. I think that is so sweet!!!! So we'll be spending a lot of time at the Ice Cream Parlor at the end of each day :) :)

Well...Hang in there everybody, the Lord only gives us what we can handle.....remember that. The Skylar's next update will be on or before the 9th of Nov.

God bless you all..Marquette Haynes (Skylar's Mum)

11/22/01

Skylar has returned from the hospital. Surgery went well. They had to reconstruct her incision by cutting out infected tissue along the incision. Skylar came home with stitches and three drainage holes. The stitches will be removed by a local pediatrician. Skylar is feeling a bit under-the-weather, but over all she is doing great. There will be a full update on Monday.

Happy Thanksgiving and God bless all of you,

11/28/2001

Greetings from Skylar's Hospital room......

Skylar is in the hospital and has been since last Wednesday!!!

Most of you know that we left for DisneyWorld on the 10th of November and were there until the 15th. In spite of running a low grade temp she had a great time. On the 15th we flew to Miami to the Transplant Center for an operation on her incision. Things seem to go well so we flew home late Monday night in time we thought for Thanksgiving.

We were home maybe 36 hours when she spiked a high temp and the incision looked like it had become infected again. So Wednesday I took her back to the hospital here in North Carolina. They admitted her right away and started her on IV medications in hopes of killing the bacteria causing the problem. By Saturday the infection had tunneled it's way across her abdomen under her skin and was making a mess. So they decided to operate again to remove it. She went into surgery on Sunday morning at 7:30. When she came back to the room we notice her incision had a slow drip and was bleeding out on her bandages. At the time we thought it was just oozing from the surgery and would stop.

By that afternoon Skylar was looking very pale and had soaked thru her bandages so they called the Surgeon in to change it. When he removed them we notice a steady slow drip coming from the incision. In hopes of stopping it they started giving her fresh frozen plasma. I thought it had worked but she looked so pale, I was worried.

At 10:30 pm she finally fell into a fitful sleep. I awoke to her calling me very quietly about 1:30 in the morning. She was so weak and looked terrible. There's was no color in her cheeks or lips and looked very white next to the sheets. I walked over to change her and see what was wrong. When I pulled back the covers I almost screamed she was covered in blood. It was everywhere, all over the bed sheets, her bandages and all the way up her back. I yelled for the nurse, she called the Doctor, the Surgeon and did a STAT CBC to check her blood levels. The surgeon came running into the room I swear the man lives in the parking lot in a camper he was here so fast. They rushed Skylar back into surgery.

After about 2 hours (5:30am) she was back in the room and they had stopped the bleeding. The surgeon, Dr. Walburg is amazing and a very kindhearted person, I can't thank him enough for taking care of Skylar.

She slept most of the following day and was in a lot of pain. On Tuesday morning after another sleepless night for me because I was so worried, they did another CBC to check her blood level. When the results of her blood work came back, it showed they were all dangerously low. The Doctor (Dr. Walter) decided she needed a blood transfusion right away. This time they gave her whole red blood cells. It seems to have helped!!!!

Although still a little pale she is looking better and color is returning to her lips. Once again Skylar has pulled thru like the fighter she is with the help of the Lord and all the Doctors and nurses at Mission Memorial Hospital in Asheville, North Carolina.

To the staff I want to say, although we may forget some of your names, your faces are imprinted in my mind forever and I thank you for taking such wonderful care of Skylar. God bless you all !!!!!!

We are hoping to be able to go home soon. It will depend on if she'll need more blood in the morning. I'll be in touch and let you know in an update again next week.....Hopefully by next Wednesday, I promise!!!

God bless you all. Thank you for the prayers and for caring about our Skylar!!!!........Marquette Haynes (Skylar's Mum)

12/6/2001

Greetings from Skylar's Place,

Skylar is finally home and doing so much better. Many of you know she received her gift of life, a new liver on June 17th. Well, for some reason she contracted a flesh eating bacteria in her incision. After 5 additional surgeries to correct the problem, I'm happy to say it's finally under control. The latest surgery was a week ago Sunday.

There was a complication from all the surgeries (3 within an 8 day period) and she started hemorrhaging. They had to give her 2 blood transfusions and operate again later that night to stop the bleeding but she is doing great now. Her color has return to her face and she is laughing with her sisters. Skylar never ceases to amaze me.

She went to have her stitches removed yesterday and I have to say, although big, the incision is beautiful with NO infection!!!! Dr. Walburgh did a fantastic job and we are grateful to him and the staff at Missions St. Joseph for all they did to help Skylar.

We are now looking forward to Christmas as I pray all of you are. Skylar will actually be able to enjoy it this year and I can't wait to see her eyes light up when she sees the Christmas tree and presents.

There have been many additional costs with all the surgeries and the anti-rejection medication she has to have everyday. But we have a lot to be thankful for, because Skylar is still here with us. In spite of the difficult journey to transplant and after, she has had 15 surgeries so far. I will say it again, it was all worth it!!! It's amazing to see her laughing, playing. And I would do it all again just to see her smile.

There may be some of you out there who are thinking of being an Organ donor and have not yet signed your card. I encourage you to be a donor and help save a life. I'm so thankful to the Mother who in the mist of her grief gave my child life. Saying "Thank you" to her will never be enough..........

I'll be updating Skylar's site again by Monday the 17th. Until than God bless you all and Happy Holiday!!!

Marquette Haynes (Skylar's Mum)

12/21/01

Hello from Skylar's Place

I know I promised you all an update on Skylar by the 17th but it never fails, I'm always a few days behind. I'm sorry to say it's because Skylar has pneumonia this time. It started with a croupy cough, a fever, and running nose. The Doctor put her on antiboditics but she is not responding to the medication. Her blood levels are dropping (showing she can not fight the infection) and she may have to be admittted to hospital if she has not improved by morning. We are going back to the Doctor tomorrow for more labs and Dr. Walter will decided what to do than. I will call Darlene the webmaster of Skylar's page to add to this update....God bless you all and thank you for the prayers.....

Marquette Haynes (Skylar's Mum)

12/22/01

Skylar has been admitted to the hospital in Arden, NC. She has Viral Pneumonia and Neutropenia. Normal White Blood Cell count is 5.5-15.5, Skylar's is 1.5 way too low. This means she has nothing to fight the viral infection with. She is receiving IV antiboditics and fluids to keep her hydrated but it's a waiting game from here.

I will try to keep you all posted and thank you for the prayers. This has been a difficult year for Skylar but she WILL get pass it.

God bless you and have a wonderful holiday,
Marquette Haynes (Skylar's Mum)

12/26/2001

As you all know Skylar was admitted to the hospital on the 22th. What we didn't know was she is battling more than one virus. Skylar has 4 different virues, Viral Pneumonia, Influenza B, RSV and Parafluenza. It's because her WBC (white blood cell count) has dropped so low she cannot fight off any infections or viruses. The Doctor let her go home Christmas Eve but told us we may be coming back into the hospital. We were happy to be with family even if it meant wearing a mask at all times. We are on are way for more blood work today and a checkup. They may have to re-admit her. I'll be in touch thru Darlene.

12/27/2001

We have wonderful news!!!! Skylar's white blood cell count (WBC) has come up to 3.5, normal is 5.5-15.5. The Doctor decided I could keep her home to recover unless there is another problem. She is still running a slight temperature, diarrhea, coughing, runny nose and wheezing when she breathes but she is making small baby steps of progress. Being here with her best friends (her sisters) really helps. She is wearing a mask at all times to keep her from any further infections. And it will be another week before she is feeling more like herself but at least she is home with us. Thank you for all the prayers!!!!

God bless you all and have a wonderful NEW YEAR!!!
Marquette Haynes (Skylar's Mum)

1/10/2002

Greetings from Skylar's Place,

I have a lot to share with you today. First, let me say that Skylar is doing much better. Still having some diarrhea but her liver numbers look great, so they are not as worried about her. She will continue to wear a mask thru the next 6 months or so to protect her from infections that will cause damage to her new liver. We will always have to be careful but the first year after transplant is the most critical.

The WONDERFUL NEWS is as of March, Skylar will be getting 6 adorable little false teeth to replace the 7 that were pulled last year due to Acid Reflux. We waited until after transplant to replace them for fear, of them falling out during the operation. She was so brave in the Dentist's chair as they filled one tooth and put a new silver crown on another, yesterday. I can't wait to see her with all her new teeth :)

Well if you have been keeping up with Skylar by now you know that Collin Raye is doing a Fundraising Concert for her on Jan. 24th. He is a very sweet man and it means the world to us he wanted to do this again. There have been many items donated by other Artists and local businesses to be auctioned at the concert as well. To all of them I want to say thank you for helping....and God bless you.

Skylar and I will be driving over for the event so I hope to see you all there. We have missed our friends in Clarksville since my husband got out of the military in Jan. of last year. We didn't really want to, but in truth getting out was the best thing for Skylar. She was listed for transplant the following April and received her new liver on June 17th, 6 weeks later. So the Lord does work things out for the good.

God bless you all and thank you for all your love and support.
Marquette Haynes (Skylar's Mum)

1/28/2002

Hello it's Marquette (Skylar's Mum)

Just want to update everyone on the fundraiser. First it was wonderful!!! Skylar had a GREAT time. Collin Raye, Kevin Sharp, Hometown News and the Billie Griffin Band were WONDERFUL!!! We were asked to come on stage when both Kevin and Collin sang so that was a real treat. Needless to say we had the best seats in the house :)

12,772.00 was raised from the event. There are so many people to thank, where do I begin. Darlene Noennig for organizing the concert along with Jennifer Poage. Hank Emrick for letting us use his club and giving all the proceeds to Skylar. For the all the Singers and their bands, the artists and businesses who gave items to auction and of course all the people behind the scenes who donated their time to make it run so smoothly. And for all of you who came to support us. God bless you all and thank you for caring about Skylar.

I will update again in a week.....God bless you and thank you,
Marquette Haynes (Skylar's Mum)

2/7/2002

Hello from Skylar's Place,

Well this has been a very busy week for Skylar. She had her monthly blood draw to check on her new liver this morning. I still don't have the results but I'll post them next time. We also had a visit to the surgeon earlier in the week.

I'm sorry to say we found another granulamona stitch bulging from her incision. Right now it's about the size of a walnut and hard to the touch. The surgeon, Dr. Walburgh will be operating again in a few weeks to repair it. I'm very scared for her to have another operation. Last time Dr. Walburgh had to rush her back into surgery because she started hemorrhaging. Her little body has been thru so much already, I'm really worried. But I know the Lord will be holding her hand and she'll come thru again. This will be the 7th surgery since her transplant in June and sixteen surgeries over all. She never ceases to amaze me.

I want to thank all of you who continue to visit Skylar's site and pray for her. It means alot to us that you care. I'll be asking for extra prayers during the time of her operation. When I know the date I will post it on her site.

On a happy note Skylar's new baby sister Kylee Morgan Haynes will be born by c-section on Feb. 12th. Skylar is very excited because she thinks Kylee is a gift for her from the Lord. You see, I found out I was pregnant with Kylee during the time of Skylar's transplant. And although a complete surprise we are all very excited about her arrival. Kylee makes 4 beautiful daughters for my husband and I :):)

Well thank you again for coming to visit Skylar it will be a few weeks from today before I update again. God bless you and keep you all safe.

Marquette Haynes (Skylar's Mum)

2/20/2002

Hello Everyone,

It's been an exciting 2 weeks since my last update to Skylar's site. She is doing well has the flu right now but hopefully it will pass.

Last time I posted I told you about the granulamona on her incision well she now has 3 obsess granulamona's that will need to be removed. I'm calling the surgeon again today for an appointment. I'll know more details later.

I don't understand why this keeps happening it's very frustrating to me. When I told Skylar she had to have another operation she just said "Ok Mummy". I don't think I could do all this with such grace. I'm actually mad that she has to do this again.

I made a promise last time she didn't have to have another surgery. I know I should not have done that but I wanted to make her smile and I was praying I was right. I just keep telling myself the Lord knows the plan and I need to focus on the fact that her new liver is doing wonderful and enjoy everyday...I'm trying.

Skylar's new little sister made her debut into the world on Feb. 9th by caesarean. Guess she decided not to wait until the planned c-section on the 12th. So Kylee Morgan Haynes, weighing 6 pounds 11 oz, 19 inches long has joined the family. Skylar and her big sisters, Jenee and Makayla are thrilled to have her here. They are even helping with diapers...for the moment (laughing).

Again... I thank you for coming to visit Skylar's site and for your continued prayers and support......God bless you all,

March 22, 2002

Greetings Everyone,

First I want to thank you all for being so patience regarding Skylar's update. It's been a long month and I have a lot to share with you. In the last update I told you that Skylar would be having surgery again because of an infection in her incision. Well the transplant team operated on March 12th in Miami, Florida. I'm happy to say it was a success.

As I've posted before when Skylar is scared she likes to sing to calm herself. Well on the day of surgery was no different. We were in pre-op when Skylar suddenly broke out in song. There were several patients and hospital personnel around when she began to sing rather loudly "Twinkle Twinkle Little Star". It was so sweet, when she finished they all clapped and she felt better. But I was crying, my daughter is a true gift from the Lord :)

The surgery turned out to be a bit more complicated than we thought. Skylar had 4 cists growing inside her abdominal cavity as well as several granulamona stitches. After removing all the stitches and cists they had to completely revise the incision cutting her all the way across her abdomen following the same path as transplant. They closed her using a type of glue and then put in over 75 to 100 metal staples. Believe it or not, it actually looks great.

A few days after surgery Skylar started to look pale. Daily blood work showed her blood levels had dropped very low and she was given a blood transfusion. (She has had about 12 or 13 transfusions since transplant). The next day she perked up and although in pain was looking a bit better.

Being in the hospital so often you get to know the other children awaiting transplant or recovering from transplant. Seeing several kids over and over again you become part of an unusual family but a strong one. Well, since November, four kids in our hospital family have died. Two sweet little boys not much older than Skylar (who's 3) and 2 young girls. One awaiting transplant and one who had her new organ for years when she went into rejection and could not recover. We will miss them but they will live on in our hearts forever.

This is a world I pray none of you ever have to enter. Watching your child or loved one wait for a donor organ that may never come, but clinging to hope that it might is very difficult. Skylar was blessed and received a new liver but others won't be. I want to encourage you to sign your donor card than talk to your family making your wishes known to them.

Every day I have with Skylar is a gift from the Lord I cherish. I don't know how long that will be but I promise it will be spent making memories that will last a lifetime.

Thank you for continuing to pray and support my daughter. It's because of you and the Lord that Skylar is still here in my arms to hold.

God bless you and thank you.......Marquette Haynes (Skylar's Mum)

3/13/2002

Hi Everybody,

I want to say THANK YOU to all of you for the well wishes and the prayers. I know the Lord is keeping a close eye on Skylar and he does hear you. :)

Let me share the good news first.....Skylar's surgery on the 12th. of March went great as you know from my last update. The staples were removed a little over a week ago and the scar is large but it looks great.

And now for the current news.....I took Skylar to the Doctor on Thursday because she had a running nose, vomiting and having partial seizures. (Skylar has Epilepsy for those of you who don't know on top of being a liver transplant recipient. She takes medication daily to control it but when she is not feeling well she will have a seizure). The Doctor took her blood and told me Skylar looked pale but because she seemed to be ok, let me take her home.

Well...On Friday I was going to my Doctor's appt. when Skylar started having a seizure in the car and throwing up. I quickly turned around and headed to her Doctor's office right away. When I got there the seizure was over and she was talking to me but very tired. They drew blood again but this time the Dr. Walter came back very worried and told me her blood count including her WBC (white blood cell) count were too low. She said from her labs she had a virus causing the partial seizures and vomiting and wanted to admit her.

After we were settled into the isolation room they came in to do an IV. Well as you know Skylar had surgery recently and her veins have not recovered yet. Finding a IV site was next to impossible. She was so brave but we were both crying after the fourth try on her HANDS and both FEET. Skylar was holding out her little arm and crying for them to "please stop". It broke my heart and the NURSE, so she asked the Doctor if we could wait to see if Skylar could drink enough on her own. Skylar smiled thru her tears and told her she would try.

We spent all Friday and Saturday in the hospital. Because it was viral and there was nothing they could do but monitor her, I asked to take her home. Dr. Walter told me it was ok but because her blood is so low and she is vulnerable to infection we can't leave the house. If we do she has to wear a mask. I'm taking her temp every few hours and watching for other signs incase she gets worse but so far she is doing ok. Skylar's baby sister Kylee (8 weeks old) is sick with the same virus. So I'll be running back and forth between them for a few days until everyone feels better.

I know it seems like Skylar is sick alot but having a compromised immune system makes it difficult for her to fight off infections of any kind. To us...these are little "bumps in the road" compared to having a liver transplant so we understand this is going to happen.

On to the FUN news...Skylar and I will be on KISS COUNTRY 99.9 here in Asheville, NC. April 16th in the 7:00am to 8:00am hour promoting Organ Donation and Alpha1 Awareness. Radio personalities, CARRIE HUNTER AND CHUCK IN THE MORNING will be interviewing both Skylar and I. They will also be playing a song written by Skylar's big sister, Jenee when she was 12 years old and telling the story. Hope you'll all tune in.

Until next time God bless you and thank you for your prayers,

Marquette Haynes (Skylar's Mum)

05/21/02 Skylar Needs Our Prayers

Skylar developed a low-grade fever, vomitting and diahrea a couple of weeks ago. Last week she was taken to the hospital in Miami where they found her bone marrow has stopped producing white blood cells. Source is unknown at this time. If she does not respond to the drug treatment to increase the white blood cells in the next few days, they will need to do a bone marrow biopsy. Skylar is in serious but stable condition. She has been running a fever of about 102 for the past couple of days.

I will post more details as soon as Marquette is able to get them to me.

Please, no flowers, she is not allowed to have them, but will love your cards.

Pray also for Marquette and Skylar's family. Marquette is very scared.

Darlene

05/29/02

The blood transfusion was unsuccessful and her body is not absorbing any nutrition. She is supposed to have more blood tests and a bone marrow biopsy today and tomorrow. Things don't sound good, so I'm keeping her in my constant prayers. Marquette sounds ok, but she says she has no excuse to sit and cry if Skylar isn't.
(message received from Jennifer)

The Collinators (Collin Raye fans) are auctioning donated items for Sylar's fund. For more info click here.

06/12/02

Hi Everyone,

In spite of everything, Skylar is cheerful. She appreciates her cards and gifts. Every time she opens a card she says 'somebody loves me'. Please continue praying for Skylar, her condition is still serious.

Marquette does not have her computer with her and is not able to send or receive email. They anticipate being there for several more weeks.

Marquette thanks all of you for your prayers. She knows they are in the right place and the doctors will figure it all out and she believes Skylar will pull through again.

I have posted the address to which cards can be sent at the bottom of the left column. Thank you all so much for your wonderful response and prayers. All your cards help keep up Skylar's spirits. The rest of her family were able to come to Miami to visit last week and she was thrilled to see her daddy and sisters. Skylar has a will to live and we can help keep up her spirit with our cards and prayers. Thank you so much. Pray for the doctors, that they will be able to find the answers. Pray for Skylar and her family. I have Marquette's phone number (I had lost it) and will be calling her to get updates to pass on to all of you.

Darlene

06/21/02

Hi Everyone,

Marquette and Skylar are staying at the hospital hotel and Skylar is now being seen as an out patient. A nurse comes everyday to give her a neupagen treatment (shots) to boost her bone marrow. Her blood levels are still too low.

Skylar has a four foot IV pole with her feeding pump attached weighing roughly 8 lbs. that she is able to push herself which enables her to move around independently.

The formula they are using to feed Skylar is Peptamen Jr. The insurance company has refused to pay for it. It costs $5 per can. Skylar needs 5 cans per 24 hours. It costs roughly $750 per month to feed Skylar.

They don't know yet when they can go home. Hopefully, in about two weeks. Despite everything, Skylar has not complained. She is singing, playing and joyful.

Thank you so much for all the cards. Cards should be sent to her home address in North Carolina. Skylar has received cards from all around the world - Thank you... Your cards are keeping her spirit up. Thank you for your love, prayers and support.

Darlene

July 1, 2002

Hi Everybody,

As you know Skylar and I are back from the hospital in Miami after being in for a month and a half. I want to say thank you to all the Doctor's and Nurses at Miami/Jackson Memorial for caring for Skylar. They have become family to us and truly care. God bless you!

I have so much I want to say so please forgive me for cramming it all in :)

The transplant team still doesn't know what's wrong with Skylar but they are treating the problems. First her pancreas has stopped producing a enzyme needed to absorb nutrition. I think it's safe to say her body was starving itself. She will be on pancreatic enzyme replacement therapy for the rest of her life. They have put in a feeding tube, a Gastric J Tube (it bypasses the stomach and feeds directly into her intestines). This is helping to keep Skylar alive.

We still don't know why her blood levels keep dropping even after 2 blood tran