Hmmm... I suppose I'll start at the beginning. Hope you don't mind all of my rambling. :) - Andrea

Tony and I tried for many months to get pregnant. We were very excited when finally a pregnancy test turned up positive. Overall, it was a very uneventful pregnancy. Everything went as it should have. My only ultrasound was so exciting! We got a wonderful picture of Jayli's little hands covering her face. I loved being able to see all of Jayli's tiny parts. All except one. Jayli just wouldn't cooperate and Tony got his way. I was rather upset that I had to wait another 5 months to find out if we were having a boy or girl. Not that I cared one way or the other, just as long as the baby was healthy.

A few days after my due date (which was Christmas), we decided to induce labor. Labor was awful....it was all in my back. About 4cm along, I was begging for drugs. The dr.s checked to see how far along I was and felt something wasn't right. Oh no, it was Jayli's little butt sitting down there! I should have known then that Jayli wouldn't do anything by the book. At 4:54pm on Dec. 28, 2000 Jayli was delivered by c-section. 18 and a half inches long and 7lbs 2oz. She cried so loud when she came out. It was the most wonderful thing I've ever heard.

A couple days after Jayli was born, we found out she was jaundiced. That's when she got her bili blanket and also the nickname Jayli bug. All of the nurses in the nursery called her a little glowbug and the name stuck.

Jayli's jaundice never went away and we were at the doctor's an awful lot. We finally found out what was wrong with Jayli when she was 11 wks old. I kept saying to the dr. she has "what? huh?" Finally, I told him to write it down. From that point on, I learned more about the medical field than I ever cared to. Many of our days were spent either at the dr's, hospital, or lab. I've decided that liver disease has got to be the most awful disease to ever have. Although we cried with each thing that Jayli had to endure, for the most part she took everything in stride. Even though Jayli's liver disease made up a huge part of who she was, I'm going leave it up to you to imagine all that she went through. For now, I'd just like to tell you some of my favorite Jayli memories.

One of my favorite times with Jayli was in the middle of the night. I loved to get up with her to feed her, snuggle with her, and smell that sweet baby scent. I guess that was a fortunate thing because Jayli didn't sleep through the night until she was almost a year old. When she was really little, she would fall asleep by rubbing her head. It always reminded me of the ultrasound pic that we have. I just loved when she was sleeping in my arms and would laugh in her sleep. :)

One of Jayli's favorite things when she was little were her books. We would spend hours and hours snuggling and reading to her. She especially loved Dr. Suess. Jayli also loved taking baths. She would get the whole bathroom wet with her kicking.

Jayli's love of music started at a very early age. It's hard to remember a time when she wasn't bopping or dancing to music. And she loved all types of music, Tony's rock music, my country, and of course Sesame Street music.

Jayli loved stinky feet. The first time she laughed really hard was after her first transplant and I pretended her feet were really stinky. She thought it was so funny that she fell backwards into the couch laughing and then she fell over sideways. I'll never forget Jayli's million different laughs and how she always got the hiccups afterwards.

My most favorite memory of Jayli was when she was about 14 months old. She was on a medication that needed to be given every 6 hours. We would wake her up at 5am, Tony would go to work and Jayli would get to come into bed with me. One morning, I heard Jayli stirring and I pretended to be asleep thinking that she might go back to sleep as well. Jayli didn't, instead she crawled up so that she could put her head on my pillow and put her little face about an inch away from mine. Then she did one of her little "booo-ahhh's" (That's REALLY hard to type. She kind of rolled her b's, like when you make a motor sound and ended it with an "ah" sound). I just had to laugh and there was no going back to sleep that morning.

About a month later, Jayli learned to blow kisses. She was awfully good at it. It was Jayli's way of saying goodbye. All of the nurses in the hospital thought it was very cute. I just had to laugh because it was Jayli's way of telling them to leave.

Last summer at the Kohls house, there was a dog next door. That started Jayli's fascination with dogs. She called them "diggies" and would bark when she heard or saw them. One of our favorite things to do was to walk to the park and see all of the dogs. Jayli made lots of people laugh when she would point at the dogs and exclaim "diggie, diggie, ooh ooh ooh." Jayli's two year pictures turned out so well because my cousin had a couple dogs that were running around. One of them would growl whenever Jayli would touch him and Jayli thought that was Very funny.

Jayli also began to like fish that summer. She got excited whenever she saw them. We bought her a few plastic ones to put in her pink hospital tub during sponge baths. One day she was in the bathroom at the Kohls house playing with her fish while I was getting her medicine ready. I heard Jayli screaming, went into the bathroom and she had gotten stuck in the pink tub. Of course being the good mom that I am, I had to get the camera and take a picture. Luckily, Jayli forgave me and we ended up laughing pretty hard together after I pulled her out of the tub. Recently, Jayli would enjoy drawing what she would call fish and having me make fish out of her playdough.

One day as were leaving the hospital, Jayli saw a little boy who was crying at the nurses station. Jayli stopped where she was and stared at him a minute. Then she put her hand up to her mouth, sucked on her paci really hard, and pulled it out. It made a pop sound as if she wasn't sure she wanted to stop sucking on it. Then she walked over to the little boy and offered it to him.

Jayli's paci's were a lifesaver for her. They were wonderful on the days when she couldn't eat. On really bad days, Jayli would have one in her mouth and one in each hand. When the paci in her mouth wasn't working, she would pull it out and switch it with another. She even got to where she could suck on two at a time. I caught her sleeping with two in her mouth a couple of times.

On one of Jayli's admissions to the hospital, she arrived by ambulance. She was up on the stretcher doing fine until her regular nurses came up to her. Those poor nurses got a bunch of paci's whipped at them. Jayli was sooo mad that she was back at Children's again.

Another of Jayli's favorite comfort things was her baby. She would tuck her under her arm and take her everywhere. The baby almost became as famous as Jayli.

Jayli always had what I would call crazy hair. Everyone loved it, but since it was the exact same as mine, I knew that Jayli probably wouldn't like it much as she got older. Her curly hair was always tangled and was usually sticking up all over. I loved to play with her hair, but she never left the barrettes or rubberbands in for long. Jayli always let me do her hair though, as long as she could play with all of her hair things. She would always pick all of the butterfly barrettes out on the container. They were her favorite. In fact, the first day that she got them Jayli made me put all ten in her hair at once. One of Jayli's doctors called her a ragglemuffin one day because of her crazy hair and I thought it was such a fitting name. Tony and I were joking about it the next day and Jayli's other doctor said "no, she has angel hair."

After Jayli's second transplant, she really started getting into movies. Anything with music and dancing or the ones where someone would get hurt were her favorites. A few days before Jayli passed away, she really got into Pooh Bear. She would make Tony rewind the part where Pooh fell out of the tree at least 20 times so she could laugh her little head off. Jayli would also bang her baby's head only to laugh really hard afterwards.

One of Jayli's odd little things was that she always had to have socks and a shirt on. If her socks were off, she would point to her feet and say "mmmmmm" in a really stern little voice. She would also do the same when her shirt was off. I think the reason for this is that Jayli knew she wasn't going to be hurt of poked at when she was dressed. Jayli also developed a love for her blankets for this same reason. Whenever we were in the hospital, she always had to be in her high chair or be covered with her blanket so no one would poke at her.

With each hospital stay, Jayli would come up with a new phrase. It started with blowing kisses, and then progressed to "I go", "go bye" and eventually "all done" Two other favorite phrases were "no" and "okay". Jayli didn't need to learn any other words once she had those phrases mastered.

One of my favorite phrases of Jayli's was when she started saying "Oh Yea" and clap her hands when I would ask her if she wanted something. That only lasted a couple of weeks though. And then she was back to not feeling well.

I have many many more wonderful memories of Jayli......These are just some of my very favorites.

I suppose this brings me to Jayli's last day. I'll never forget that morning.... It started with Jayli wanting to watch Winnie the Pooh. She was having trouble breathing and staying awake and yet she still wanted to watch him. When the doctors told us she needed to be put on the ventilator, Tony and I got lots of kisses from her. She was sooo sweet! Jayli had just recently learned how to give real kisses and loved taking her paci out to give them. She was also great at giving hugs.

Jayli was then placed on the ventilator and soon after experienced a major bleed. We knew there wasn't much hope that she could recover from it and then go through a third transplant. I think the one thing that made me realize that Jayli had enough was when I looked at her bare feet and realized that she had her socks off for over 24 hours and didn't even tell me to put them back on. I always told Jayli that as long as she wanted to fight I would do everything that I could to help her. That day though I knew she was tired of fighting. So instead of saying, "go my little fighter" we had to say, "go Jayli, go. You don't have to fight anymore."

All of Jayli's nurses came in to say goodbye in groups of threes and fours. Some even came in on their day off. I will never forget all of the love that the doctors and nurses showed towards Jayli and to us. And her one special nurse who stayed with us until the very end.

Jayli fought a long tough battle and yet in spite of everything seemed to find joy in something each day. Just before Jayli was taken off the ventilator, one of her doctors asked if we felt any sort of relief. I think about that all the time. I am very sad that she is no longer with us and at the same time happy that she is in a better place.

Jayli was taken off the ventilator and was placed in my arms. She went so peacefully....

And the rest of that day and into the next, all I could hear was Jayli's little voice saying "oh, yea!" as clear as can be. She must be having lots of fun in Heaven.


We miss Jayli more than you can imagine..... I think my toughest times are when it is time for her medicine or before I go to bed. At nine o'clock each day I still go to get Jayli's meds and then realize that she doesn't need them anymore. And I can't help but stop in her room each night to make sure she's covered, kiss her little head, and say a prayer before I go to sleep. I suppose things will get easier in time.... Until then I have lots of happy memories and pictures to help.

Thank you for being a part of Jayli's life...