The Story of Sugar Bear

This is the story of our first daughter Taryn or more famously known as Sugar Bear!!! Taryn Marie Jellison entered this world on February 12, 2002 at 5:04am. She was born at Via-Christi St. Joseph. She weighed 6lbs 7.9oz and was 17 1/2 inches long. Shortly after being born she began her life in the Neonatal Intensive Care Unit. Taryn was born with Down Syndrome and an atrioventricular canal heart defect. Taryn had to work hard on things most of us take for granted. Taryn's heart defect and low muscle tone caused her to have a very difficult time with drinking from a bottle let alone the energy she would burn with her heart not working at full capacity.  After about five weeks of working with Taryn she was still struggling to drink from a bottle. At this time the doctors decided to perform a gastrostomy (placement of feeding tube) on Taryn.
On March 24, Taryn was finally able to come home with Mommy and Daddy. Taryn began physical, occupational, and speech therapy along with early childhood education with the staff at Bright Beginnings. Taryn loved to play "possum" and pretend she was not awake when they came to her house. She knew it would be time to work. Taryn also loved to listen to Daddy sing to her and watch tv with him. Mommy enjoyed taking baths with Taryn and reading the Bible to her.
Taryn was three months old when she took her first long road trip. We were on a journey to the Children's Mercy Hospital in Kansas City, MO. Taryn was going to have a repair on her AV Canal Defect by Dr. Lofland. We took Taryn on her first shopping trip at the Plaza in downtown Kansas City the day before heart surgery. She went into her first toy store, FAO Schwartz. We bought her first Groovy Girl Doll.
May 21st was surgery day for Taryn. The surgery team started shortly after 7am am was finished by noon. The surgery went excellent! About an hour after surgery Taryn developed some blood pressure problems. She became very critical. Dr. Lofland decided he would need to reopen her chest and leave it open. Taryn's chest was open for over a week before she drained off enough fluid from her heart to close it back up.
June 7th we finally were able to come home from the hospital. Mommy and Daddy just held her and loved her. Saturday June 8th, Daddy went to be with Uncle David when he married Lindsey in Topeka. Mommy stayed with Taryn at home. Grandma Marilyn and Aunt Jennifer came to help Mommy since she was so nervous about being at home along with Taryn.  Taryn smiled her first social smile when Mommy called her a little "turd". It was wonderful!!! Taryn was a little fussy and wanted to be held all of the time. Mommy loved it!! Daddy came home on Sunday and for the first time Taryn got to meet her Great Grandparents, Tommy and Vicki, and her Great-Great Grandma Edna. Taryn started to become very fussy but seemed to be doing well. Later that night Taryn took a bottle and pacifier. She was not able to do this before because of her gag reflex and lack of energy!!  Yeah Taryn!!
Mommy and Daddy stayed up with Taryn very late that night and got in what we now know as her last cuddle times. Shortly after 7am Grandma Marilyn arrived and we called Dr. Harrington to find out if we needed to do anything with Taryn to help her because she was still a little fussy but seemed to be okay on the outside. She thought we needed to go to the ER room to have her checked out just to make sure nothing was wrong on the inside. Ten minutes later Taryn started gasping for air. Mommy called 911 and began CPR. Daddy responded on his firetruck along with EMS and took over on CPR. Taryn took her last breath at home. We got to the hospital and the doctor's tried to help Taryn but were unable. It was time for Taryn to be home with God. No more pain, no more suffering, but in the most wonderful place!!
We were so happy to have four months with Taryn. She was an absolute blessing and gift from God!!! Our hearts ache with her death and not a day has gone by that she does not enter our minds. We will never be the same again, we will never forget, and we will always love our Sweet Sugar Bear!!