Lindsay was born October 2nd, 1990. That same night the doctor noticed that when she cried she would turn blue, so they transferred her to Texas Children's Hospital. We learned later in the day that she was born with a complex heart defect: Atrial Septal Defect (ASD), Ventricular Septal Defect (VSD) which are holes in the chambers; Pulmonary and Mitral Atresia meaning those valves were missing; Hypoplastic Left Ventricle, the left ventricle was not properly formed and Transposition of the Great Vessels which means they were reversed.

We were told had she not had the transposition she would not have lived. She was a frail, small and thin baby. Lindsay had a heart shunt (a little plastic valve that helped the blood flow in the proper direction) put in when she was only 2 days old. She stayed for weeks in the neonatal ICU and had many problems while there. Lindsay was on a ventilator , had a NG tube and many other wires and tubes hooked up to her. Her lymphatic system began leaking so they had to put her on a specialized formula. She had constant thrush and then came home only to stop breathing in the middle of the night which was terrifying. Back to TCH we went, Lindsay was in for several more weeks of ICU. When she got out this time she seamed to be OK and progressed as a normal baby so we thought things were great.

When Lindsay was about 15 months old she went in for a routine heart cath (she had been having these periodically) and they accidentally bumped the AV node in her heart causing it to not beat properly, so she had a pacemaker put. We were then told she would need a heart transplant. We went home to wait. On April 9th, 1992 her sister Lana had gone with her grandma out of town fishing and Lindsay and I were outside decorating for Easter when my husband Lanny came outside and said "We have to go... they have a heart!!!". We were so excited but terrified at the same time. So at 18 months old Lindsay had her first heart transplant.

The doctors told us they had trouble attaching the donor heart because of the way Lindsay's pulmonary artery was, but she had done very well. Later that night she began having problems with the heart rhythm so they took her back into surgery, reopened her up and inserted pacing wires into the heart to help regulate the beat. She was on a ventilator, had several chest tubes, arterial lines and many others. They were giving her high doses of morphine for the pain. She still continued to have problems so they gave her OKT3, a strong drug hoping to regulate her heart and get things back on track. Lindsay began to run fevers and throw up.

After a week, she slowly started to improve. She tried to pull out her tubes and wires and started asking for Lana. They were doing so many lab draws squeezing her fingers and toes that her skin started to come off her fingers and toes. She was in the hospital for about four weeks. Her color changed from blue to rosy and she looked like a different child. She did well. Lindsay began to gain weight and catch up to other babies her age. She learned to walk and do all the "normal" things. She did have to go back to the hospital many times (too many to count) for numerous cardiac biopsies to check for rejection and check the arteries which were painful for her. Many times she was so bruised and sore she couldn't walk for several days. Lindsay did have one episode of rejection which was treated with MEDS in the hospital for a few days but other than that she did well.

When Lindsay entered Kindergarten she didn't really like school. She continually said that she was quitting and moving to Rockport with Grandma Judy. She would do little dances in class, pour all the soap out of the soap container, get up off her nap pad (when the teacher went to potty) because she hated nap time. She was really mischievous. When she started telling the teacher that her heart was stopping so she could go to the nurse we thought she was trying to get out of nap time but it went on for 2 days so I called the doctor. Sure enough her heart was stopping. She had a microny pacemaker put in on April of 97. She was invited to New York to close the New York Stock Exchange for St. Jude's Hospital (the maker of the microny pacemaker) and she had a ball.

Lindsay continued to do well in school and at home. She enrolled in Ballet at the local community center. Things went smoothly for a couple of years with an occasional inpatient stay. She had many clinic visits and lab draws and cardiac biopsies. Then in November of 99, we noticed she was becoming very tired frequently. She quit ballet which she loved, quit ridding her bike, we no longer could walk the three blocks from school... it became too much for her. She went to half day school, they began modifying her work. We did sleep studies, saw neurologists and had many tests done. The doctors had no answers.

Lindsay began to say that she didn't want to go anywhere, she was too tired, she just wanted to stay at home all the time so we got a wheelchair which helped her to get out more again. At this time she also started to have some problems with her short term memory forgetting where things were in school she had been going there for a year already. As time went on, she continued to complain of feeling tired and of chronic leg pains, she would be pale, and vomit frequently. We began to see on her biopsies that her arteries were becoming smaller and narrower knowing the end result was Coronary Artery Disease and the only solution was another transplant.

In December of 2000 we were told that the arteries were so bad that she had been listed for transplant again. We explained to her what she would need and she just said "Well ok then". She has a great attitude. She gets tired of going to doctors but knows that this is what she must do and she keeps a great attitude about it and asks regularly "Am I going get a new heart maybe this week?" Her friends at school decided to have a walkathon to help her get a new heart and the response from the surrounding schools was truly amazing. Our local news did a little story on Lindsay too.

Lindsay began having more problems as time went on with being very tired, trouble concentrating, severe short term memory loss, having spells of being so tired she can't get out of bed, vomiting sometimes, daily headaches, leg cramps, looking pale, etc... She was on homebound school. They canceled her last cardiac biopsy because the doctors said there was no point on putting her through it because all they would find is that the CAD had gotten worse and since she was listed for retransplant there is nothing more that could be done. She was REALLY happy about not having to have that done.

Then in November of 2001 she began to get sicker so we were told the only option was to admit her and wait for a new heart so she was admitted during Thanksgiving . Then on January 16, 2002 she got a new heart. She was sitting in bed eating a burrito when the nurse came in and said they had found her a heart. She was so excited. They took her to surgery but things did not turn out to well in the beginning. The surgeon when opening her chest sawed through her heart so she had to be put on emergency bypass which later caused a HUGE wound in her left leg along with severe nerve damage (she still has no feeling in parts of her leg and thigh). She made it through the surgery however we were told to stay close as they did not know if she would make the first 24hrs. She started bleeding from everywhere, so hours later they took her back to surgery again. She was in ICU for over a month.

Things were so hard for her she went into total renal failure and had to be put on dialysis around the clock she was in constant pain, she developed severe stomach problems with bleeding in the stomach from all the medications they were giving her they put a tube in for liquid feedings her mouth got sores in it as well as her tongue her leg wound became infected so she had to have surgery to clean it out her legs and feet would swell so huge she could not walk, it was so much I truly don't have the space to tell all that happened during this time, you name it she had it. On February 13 finally got her staples out, all 71 of them but when they removed the top few her chest did not close properly so we had to put packing and a dressing on it and they said we could finally go home.

We went home and things didn't go so well she developed a stomach infection her wound was oozing constantly it was so deep you could see bone and muscle, she was on something like 120 pills a day and in constant pain so we went back to the hospital and was admitted again and we stayed. She would feel better and we would go home a day or two and then be back in the hospital so she was basically in the hospital from November 01 until May of 02. She got to take her FIRST shower since January 15 on June 2, she said she had already forgot what it was like to take a REAL bath.

2007 and 2008 were very tough for Lindsay. We had major issues with her homebound tutor who didn't believe Lindsay was that ill. She thought she "was faking". She was under constant stress. She developed chronic pain syndrome, chronic fatigue syndrome and severe migraines. We had many excruciating meetings with her school over this .We had her tested and had someone go to the school and "lay down the law" to them. All this was very stressful for her. She struggled all year. We had this person removed and got someone else who was wonderful, things seemed to get a bit better.

Then in September 2008, she had a cardiac biopsy where they told us her heart looked a little "stiff". She had gotten a job on the weekend as a hostess at a small family owed business close to us. He was very accommodating to what ever she needed. SHE LOVED IT, this was something we never thought possible. She then got her Letterman for being in Choir (she would go to school one hour a day), she was so proud of these two things. She ended up having another 2 heart biopsies each one with a worse outcome. I noticed she started to get tired easily and was nauseous more.

The last biopsy they said she may need plasmapheresis or think about re-listing for a third transplant. It looked like she had some rejection. We tried another treatment but that did not help. We had planned on going to her grandma's the day she went to the hospital. She told her wonderful tutor "if you are going to come see me you better come in the next two days or I may be dead" we were so shocked as this is not how she talked and had never said anything like this before. I was later told by her doctors that EVERY TIME a child has said something like this they always sit up and take note as it comes to pass. I called the hospital to let them know we were going out of town as they were still waiting on some test results. We had just picked up her senior photos. Within a few minuets they called back and said "No, come to the hospital to be admitted".

She got a port placed in her neck and a picc line the next day. The following day they started the plasmapheresis. She tolerated it well. The third day she did so well they said in another day she could move to a regular room and just come down for treatments. She was watching tv, eating pizza, texting her cousin, being a normal teen with the exception we were in the hospital. I went one floor up to lay down and about two hours later they said she wanted me. I walked through the door she was sitting in bed with a bucket. I said Lindsay do you feel bad? She just fell back on the bed and that was it. They tried to resuscitate her for an hour with no luck.

We later learned that she had an extremely rare form of Transplant Coronary Artery Disease that attacked her veins and there have not been any documented cases like hers. They said there was no way to see it or tell. They have only seen 6 kids that had a small amount on the veins but nothing like she had. We heard so many times through the years "We have never seen this before, we don't know what this is, it's new to us, etc..." So she kept with true Lindsay fashion in having something rare.

The past few months have been hard, she was my life, for 18 years we were together 24 hours a day, 7 days a week, a package deal. Things will never be the same but I know she is no longer in pain and no longer suffering. She is in a better place. I received a heart locket from "It's My Heart" after Lindsay passed away. It said "Always in my heart", and on the back "See you in one hour, Love Lindsay".

I was told there is a verse in the Bible that says how many days on earth are equal to the time in heaven. It was all calculated out, and my age now based on my life span, would mean I would see Lindsay in one hour Heaven Time.

So "See you in an hour"!

I love you!
Mom

Thank you all for the wonderful cards and gifts that were sent over the years. MACS was a GOD sent for Lindsay. Each card, note and package made her smile. Lindsay would get so excited each time she got something in the mail. Thanks to MACS, she became friends with someone who truly made her life much easier to bear, her face lit up each time something arrived or she got a call .She would not have had this loving friendship if it were not for MACS.