Shelly's Story - part three

part 1
part 2
part 3
part 4
Read "The Heart of This Dear Child", a poem by Judi Bash

By the time we arrived at the hospital, Mark met us and said that the helicopter had just taken off for U of M. I remember that I kept saying “my poor baby, oh God please be with Shelly”. Mark proceeded to tell us about what had taken place that morning before we got to the hospital. Shelly was startled when they woke her up and the nurses started changing I.V’s getting her ready for the move to U of M in the helicopter. As the nurses wheeled Shelly down to the helicopter pad outside of the hospital, several nurses were standing with Mark. Mark was trying to keep calm and proceeded to tell Shelly that “there are a lot of people that are praying for you right now”. Shelly said, “Dad, let’s pray right now”. So she took hold of the nurses and Mark’s hands and they all stood in a circle around her gurney as Mark prayed for this dear child that God had given to us to love.

Through God’s grace and protection, we all drove down to U of M safely. We looked back later and realized if God had ordained to have a new heart available even twelve hours early, there was a U of M football game going on and we would not have been able to get there in record time. When we arrived at U of M, Mott’s Children’s Hospital, we were directed to the Pediatric Intense Care Unit (PICU) where Shelly was being prepared for surgery.

We were able to go in to see her, hug her and tell her that we loved her so much and how proud we were of her to ride that big helicopter. We later found out that the crew on the helicopter had told the staff at the hospital that Shelly’s flight was one of the nicest flights they had with a ‘almost 4 year old’. They said that Shelly sang “Jesus Loves Me” all the way down to the hospital. God’s precious gift! Something that I always said to the doctor’s before they would go into a surgical procedure was “now you take good care of our baby and we are praying for you”. They would smile and say thank you. That day was no different! We were told to wait in the PICU family waiting room and it could be for many hours.

Another answer to prayer was that Kimberly was able to get a flight home to be with Shelly and us and was at the hospital when Shelly came out of recovery. Even though Kimberly was away in college, she and Shelly had a special sister bond. One day when Kimberly came home from college, Shelly was sitting at the counter coloring and she looked at Kimberly and said “Hey Kimberly, you are no longer Kimberly. You are now Lilly and I am Billy.” And that’s how it was. If Mark or I would say to Shelly “where’s Lilly” Shelly would say, “you mean Kimberly?” And then holler “hey Lilly, Mom wants you”.

Because of Jason’s new job schedule in South Carolina, he was not able to come to the hospital but would call every night and check on Shelly and want to know of any changes. An email that I sent to family and friends after Shelly’s surgery read: “Shelly is Fine! It’s about 11:00 p.m. and we are heading to a room to get some much needed sleep but I couldn’t go to sleep without writing and telling you just what a awesome God we have! They took Shelly down to surgery at 6:00 a.m. The new heart was to arrive at 8:00-8:30a.m.

But it didn’t arrive until 10:30a.m. The surgeon came up to talk to us about 2:30 and said that the new heart was in and started working right off really well. BUT her lungs were very weak and she was bleeding. But they hoped to have her closed up and ready to be brought up to the PICU in about 2 hours. Well, about 3 hours later, they did bring Shelly up but there were many nurses and doctors working on her because she was bleeding so badly and they had already given her an extra 2 liters of blood. About 2 hours later and another prayer meeting time with friends and family in the waiting room, the nurses and a doctor came to us and said that they had to take her back to the operating room to open her back up. Shelly was bleeding so badly through her chest tubes they were afraid that the bleeding would settle in her lungs making them weaker yet. They rushed Shelly down to the O.R. and about 45 minutes later while we just finished another prayer time with the Lord, the surgeon came in with a smile on his face saying that they got the bleeder and they would be closing up the chest AGAIN! Praise the Lord! We just were able to spend some time with her and WOW her oxygen levels were 99% and her little feet and hands are so pink.

The doctors again said how serious she was and how much danger she was in but now she is doing better and for us to get some rest. We know that Shelly isn’t out of complete danger but we feel we can rest a little better right now.” Two days later another email was being sent out to say “pray for Shelly”. Because of the surgeries, her diaphragm had collapsed and she again was in danger. It was decided that the doctors had to do a procedure on her side to repair the diaphragm and that surgical procedure went well. While in the intensive care waiting room over the next week, we can now look back and realize God would use us then and later to encourage other families. One particular family that we met in the waiting room was waiting for the doctor’s report on their young son with a head injury, who the day before had fallen out of a tree. Unfortunately it was determined that the child was brain dead and was put on life support.

Talking with some of the friends and relatives that came in for the boy, they had asked why we were in the waiting room. We explained to them that our daughter was in having a heart transplant and a chance for a new life and we were waiting for the doctors to come out. We can’t help but think that when the doctors came to that family and it was decided to turn off the machines and then they talked about and consented to the donation of their son’s organs, that Shelly had a big part of another child’s life. After almost 2 weeks in the hospital we were able to bring Shelly home.

She was a whole new and different little girl! She was running, jumping, looking for bugs, jumping into leaf piles, and eating without throwing up. She also was not sleeping and because of all of the medications, very cranky. Because of one of the medications, she began to grow a lot of hair on her eyebrows, arms, and legs. Although Shelly was biracial her skin color was always light before the transplant. Now her skin was turning really dark. We had a new daughter home with us but we loved her even more! Almost everyday during the next 3 ½ years after the heart transplant was something new. Shelly had trouble with high blood pressures so we would have to make a chart of blood pressures that we took through out the day. There were several times when she had to switch to a new medication and we dealt with the side affects of each new one. She was immune suppressed so to try to keep her healthy, Mark and I decided to home school Shelly. It was decided that Mark would be the principal and I would be the teacher.

It was a nice threat if Shelly was giving me a hard time about wanting to do a lesson, to just say, “do I have to call the principal?” We’d laugh and she’d get her work done. We both enjoyed the one on one time of home schooling and we both learned so much! I tried to make it as enjoyable as possible. Yet if Shelly had to go into the hospital, I’d pack up all of her books and we’d be able to catch up while lying in the hospital bed. Even though we home schooled, we were involved with a group of other home school children and did field trip outings with the group. Shelly and I would visit the local library every other week and sometimes we’d wait for Mark to come home and it could be a “Dad and Shelly time”. Of course we never left the house without some kind of hand disinfectant. When we used a grocery cart or swing at the park or a 10-cent ride on a horse at the store, we would wipe our hands really well with a disinfectant wipe. Anything to try to keep the germs away to avoid an illness. We even took a plane trip to South Carolina for Jason and Mo’s wedding. Shelly looked and acted like a “normal healthy child”!

It was at this point, about 3 years after our first attempt to try to adopt Shelly, that we decided to try to pursue adoption again. So again we filled out all of the necessary paper work and sent everything that was needed to the State of Michigan Department of Social Services for approval. We waited and waited. But no one could find out what happened to Shelly’s paper work or what the hold up was. Every week I’d call Shelly caseworker and say “could you please call and see what the hold up is?”. He would call back to report that “they are still working on it”.

Shelly enjoyed life! She would light up a room when she walked in. She was familiar with every surgical procedure she had, what medication she had to take at each time of the day. She would tell the nurse what gauge needle to use when having to give blood for a test. (And also remind the nurses and doctors that her Mom had a Latex allergy so don’t come into the room if you have Latex gloves). One day while having a check up with Dr. Hani, her pediatric cardiologist, he asked Shelly if he could take a picture of Shelly’s new heart? Shelly looked at him with a puzzled look on her face as if he had just asked her to jump off the roof. I then said “Shelly, Dr. Hani, wants to do an echogram (ultrasound) of your heart – is that OK? She looked at Dr. Hani as she jumped off the examination table and said, “oh, OK lets go”.

Shelly loved to sing praises to God and enjoyed it when our pastor asked her to sing a solo or a duet with him on a Sunday morning. No one was a stranger or visitor to Shelly. She would always introduce herself to visitors at church and would make sure if there were new children that they knew which class they needed to go to during Sunday school. She befriended a physically handicap gentleman that adults would sometimes shy away from. She saw past all of David’s handicaps and every Sunday made a point to go to him and say “Hi, David, how’s it going?”

Even one Sunday she introduced herself to a young visiting pastor and informed him that our family was taking him out to lunch after he preaches. What the pastor didn’t realize was that Shelly’s older sister was a classmate of his that he hadn’t seen for several years and they started dating and were married a year later. Shelly enjoyed horseback riding, jumping on her trampoline, swinging on her swing in our back yard while singing songs so loudly the neighbors could hear. Wintertime she enjoyed snow sledding, gymnastics visiting the animals at the Animal Control, going to piano lesson (but not wanting to practice!).

Summer time was camping in our trailer, painting rocks while Mark and I would prepare the trailer for camping, capturing a “wolf spider”, daddy long legs, and a dragon fly, and swimming lessons. She loved to go shopping for clothes. She had a favorite girl-clothing store at the Mall that we frequented and she modeled during a model show a new Christmas outfit. Visiting and talking with clients at Mark’s veterinary clinic during the day and bringing in her stuffed animals to be treated was a routine. She would also visit the pet shop with Mark and even took a liking to tarantulas. Shelly named every doll and toy animal that she has. She also enjoyed all her American Girl dolls (she has 10 dolls with the latest one being Marisol), a lot of Barbie dolls, Bratz Dolls, Betty Spaghetti’s and a play horse figurine that she named spot. Every doll and animal had their own place in her room and she was so creative in her imagination when playing with each of her “friends” whether they were pretend or human.

As one of her home school field trips, one week we took Shelly to Chicago to visit the American Girl Store where Shelly had a way of talking Mark and I into buying another American Girl doll with her clothes and also a couple of matching outfits for Shelly. We also had time to go to the dinosaur museum to visit “Sue” the dinosaur and visit the Chicago area. Shelly loved to pretend and tell stories! After church on Sunday mornings we would come home and she would line up several of her American Girl dolls and Barbie dolls in front of our refrigerator and open her Bible and start preaching to her dolls saying something like “now the Bible says we have to obey our parents for this is right. Now that means….”. Even during home school time she would bring in a box full of dolls or animals and in our “record” book, of what we did during each school day I would have to list each and every name under the attendance category.

One day during our home school Bible lesson, Shelly and we had been studying Heaven and how wonderful it will be. There would be no more shots, IV’s, heart biopsies, heart catherizations, night time bed rules, rainy days, doctor visits and exams, high blood pressures, latex, and our list just continued. About 2 weeks later, Shelly’s blood pressures kept rising, her tummy was hurting and becoming enlarged and she was vomiting a lot. After several calls to U of M, Shelly was admitted into the hospital near our home to have Dr. Hani and Dr. Debbie keep an eye on her. Shelly’s condition worsened so we were sent to U of M by an ambulance. Of course Shelly was thrilled because they even turned on the siren when they could.

Being Shelly, after the paramedics got her all settled in the ambulance and they started driving (I was able to be in the front seat with the driver), she said, “ok, are there any questions you have for me?” She proceeded to tell them about her cat she named Dub-Be-Dubs, her fish in the aquarium, her pet snail, and all about her life as a kid. Several days after Shelly was admitted back to U of M, it was decided by the doctors to do a procedure to try to slow down her heart rate. The procedure itself went fine but when she was taken to recovery Shelly arrested.


go to part four



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