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Jennifer and Kody's Story

Jennifer became pregnant with Kody when she was 18.

When she was 6 months pregnant she was put on bedrest until Kody's birth, she also went to fetal assessment, because Kody wasn't getting the bloodflow through the umbilical cord like he needed. At that time none of us knew it was because of his heart.

As time went by we became more and more excited about his birth. We would go to Jen's appts. (her husband Kevin too) each time excited to see him on ultra sound and to listen to his heart beat!

We were so happy when we found out they were having a boy!

We laughed and joked when we would see the size of his feet, they Were Big! Not knowing until later that meant something serious. When we started getting worried was when the Ultra Sound Tech was doing measurements and started looking serious.

We asked her if anything was wrong, she said she couldn't read the tests that she would have to go get the radiology doctor.

He reported to us that Kody's head was large, that he had large Ventricles, but we still didn't know what that meant. They still didn't tell us anything about his heart.

Kody was born 3 wks early. We weren't prepared for what was to happen next.

Kody was rushed directly to the "neo-natal unit" of the hospital.

He fought for his Life and so did Jennifer and Kevin.

All kinds of specialists were brought in and tests of all kinds were done.

Poor little Kody went through so much suffering and Jen and Kevins hearts were breaking seeing their precious little Kody going through so much.

They practically lived at the hospital with him.

At this same time Jens Grandfather Russ (who she was very close to ) lay in a bed up on the 4th floor, due to a heart attack. She was so pulled because she wanted to be with her grandfather, but she didn't want to leave her son. Jens grandfather died 4 days later after his heart attack.

At first Kody was diagnosed with Marfans Syndrom ... and then the genetisis diagnosed him with Trisomy 15q-21 (very rare disease).

No one had any information on any other patients with this. So they had nothing to go by.

Only that he had severe heart problems, a large head, a high-arched palate, long arms & legs, fingers, torso, big feet, a big nose, his nipples were far apart, extra wrinkles on his forehead and extra wrinkles on his chin. He was said to have Dysmorphic features. Cardiac Diagnosis consisted of: Multi- Valvular abnomalities with mild Tricuspid Regurgitation. He had dilated lateral ventricles of CNS. His facial abnormalities included; macrocephaly, prominent nasal bridge, abnormal ears, hypertelorism. Eyes, deep set and down slanted and eyes had muscle weakness. Kody also suffered from Apnea. He would stop breathing while he was sleeping.

He had a blood transfussion, due to his stomach bleeding.

Him and his parents were sent home 7/23/96. Kody was sent home attached to a Apnea Bradycardia monitor.

And before Jen and Kevin left the hosp. they recieved CPR training.

Jen and Kev were very young parents, (Jen 19 and Kev 17). They took on a huge job of taking care of their Dear Sweet Son, a job many parents might walk away from!

Their jobs were long and tireing and frightful.

But not only did they have the job of Kody's home care, they had to fight many doctors, just to get him medical care.

Many doctors would drop him as a patient after the first time of seeing him. Some would explain they didn't have enough knowledge to treat him, others just dropped him or said he didn't have the right insurance. Some doctors were rude and cold and treated Kody like he was a vegetable.

Jen battled like this for the first year of his life. (especially the first 6 mo.)

They also had to battle over health insurance.

Many times Jen would break into tears from frustration, but she never gave up, if she did it meant giving up on her son.

Because of Kody's high palate, he had a hard time sucking. So Jen began to feed him his formula with a dropper.

She worked and worked with Kody on everything!

Okay Kody Work With Me Here!
Get On Your Knees!
This Is Fun Mommy!
I Want To Stand On My Head!
giggle...giggle...giggle!

Jen tried to learn everything she could about his syndrome. Kody's doctor's were amazed at what she absorbed and understood.

She finally won the respect of all of Kody's doctors. They listened to what she had to say and asked for her opinions.

Kody had several heart caths, as well as neck surgery, hernia surgery, had to be hopitalized to have his 4 top front teeth removed before major heart surgery.

Each heart cath, surgery and having his teeth removed became more life threatening for him, because his heart was so bad.

The doctors were afraid that he wasn't even going to make it through having his teeth pulled. When the dentist came out to tell us he was doing ok and everything went well, he was close to tears.

He said he prayed the night before to help Kody pull through this. But they couldn't do heart surgery first, because of fear of infection.






 

Kody is listening
to his favorite song
"My Heart Will Go On"
He loved to dance to it
Whenever he heard it play
He would hold his arms up
Letting you know he wanted
to dance
This is the only song
Kody reacted this way to

Kody had heart surgery in May of 1999, it was called the "Ross Proceedure".

Kody was so ill by then that the doctors didn't think he would make it through the first hour. But it had to be done or he would surely die at home, his time was running out.

It was a very long day that day! There were so many people from all walks of life praying for him, even in different parts of the U.S.

We had him Blessed, and the night before his surgery.

I was amazed at how many people were there.

When eveyone finally left, Jen was in the room with Kody. When I went in to check on them, there was Jen by Kody's side, holding his hand while her sweet baby slept, and she was crying as she watched him.

I had never felt a hurt as bad before as I did then. My grandson fighting for his life and seeing my daughter in pain and not being able to help either of them. But I knew that everything was in Gods hands.

The next morning Jen and Kevin walked their son into the surgery room. His Daddy laid him on the operating table, and he was given meds to put him to sleep.

They watched their son fight to stay awake. When it was time to go, they couldn't kiss him good-bye because they had masks on. So they bent down and whispered in Kody's ear "I LOVE YOU KODY" and as Jen looked at Kody she saw that a tear had welled up in the corner of his eye. Her and Kevin wondered if that would be the last time they would see their son alive. That had to have been so hard to walk out of that room.

Kody made it after 6 hours of surgery. When Kody's heart doctor (Dr. Stamato) saw Jen and Kevin right after the surgery they all hugged each other and began to cry.

God had Blessed Kody with a Miracle. He bounched back quicker than most patients do. He was home within 5 days of his surgery.

A week after surgery, around 6 o'clock in the morning Kody stopped breathing. I woke to Kevin screaming, "NO!... NO! " I rushed out to find Kody limp and grey in his Daddy's arms. I thought he had passed away in his sleep. We didn't know what to do, because he still had stitches in from heart surgery.

The paramedics revived him enough to get him to the hospital. He was there for 3 days, but the doctors never knew then what caused it, even when it happened there.

We finally got Kody home and he got stronger and stronger. He began to do more and more. He would go from room to room by rolling where ever he wanted to go. He would love to play with doors, by partly opening and closing them. When he would shut himself in a room, pretty soon you would here him banging on the door. You would go to open the door, and there he would be grinning up at you!

He began learning more and more, his therapist Wendy would come every week to work with him. She would get so excited on how well he was doing.

Then on Oct. 1,1999 (on his Aunt Nicky's B-day) he stopped breathing again! Jen had him partly revived by the time the paramedics got here. But they kept loosing him in the ambulance.

There were 2 ambulances that came, one escorted the other one with Kody in it to the hospital. He was so serious that they couldn't make it to the hospital that he normally went to. He went to a trauma center.

This was a blessing in disguise, because he had doctors who hadn't treated him before. And so they ran extensive test on him and called in other specialists. This is when we got the horrible news.

Kody's Trache (windpipe) kept collapsing, due to the soft tissue caused by his syndrome.

The only opptions he had was surgery to put in a "stent" in his windpipe, which could slip or his tissues could tear during the proceedure.

His pediatrician and heart doctor strongly advised against it. The other option was to do a trache and attach him to a ventilator.

Jen and Kevin choose not to have that done either, because he would totally be bed ridden and would no longer be able to move about. They felt he would not have any sort of life that way.

So, they gave it all to God.

It was so hard for Kody, Jen and Kevin as well as the rest of us.

We couldn't let Kody cry or his windpipe would collapse.

Kody Jen and Kevin went to Hospice to stay, but it was too hard for all of them, they weren't happy and they felt isolated and alone. They needed to come back home.

So they did. With the wonderful help and guidance of the Hospice Staff we were able to have Kody home with us.

As time went on, it got harder and harder for Kody to breathe, especially at night. Even with medication he couldn't sleep well, and neither did his parents.

Just hearing him struggling for air at night and not being able to do anything for him, Jen couldn't sleep in the bedroom anymore. Kevin stayed with Kody in the bedroom and Jen slept in the living room, within range in case Kevin needed her.

I would often come out of my room all hours of the night and find her awake. She would be writing stories or poems about her son.

After a short while Kody went back to Hospice to monitor him so they could adjust his morphine. He was only suppose to be in their for a day or two and then come back home.

After the second day there Kody went into distress.

Kody's Aunt Nicky was with him, she had spent the night, to give Jen and Kevin a rest. She had done this many times during his heart surgery and before he left the hospital to go to Hospice.

That morning he was doing great, he was happy and playful and shared Aunt Nicky's breakfast.

Then it happened! Jen and Kevin got a call to get to hospice as soon as possible.

Kody's Aunt Nicky was doing all she could to keep Kody with her until his parents got there. She felt she needed to do this for them. She sang to him and talked to him, she rocked him and at one time she started to get up and walk with him, but the nurse said, "it's okay to let him go." She said, "no not until his parents get here!"

When Jen and Kevin got there, Kody was in medically induced coma, and barely breathing.

Jen took Kody from her sister arms and began to sob.

Kody passed away in his mothers arms. Jen had her sister Nicky and her best friend Robbin at her side when Kody passed away. They cried and laughed together and celebrated Kody's death, because even though it hurt to loose him, they knew his suffering had ended and he was now with our Heavenly Father!

Jen held Kody for about an hour before she laid him to rest.

God Blessed Jen when Kody passed away.

She was given the beautiful gift of feeling his spirit leave his body, and it gave her so much peace. As Jen told us about it, she had the most beautiful smile on her face and her eyes sparkled as tears rolled down her cheeks!

~ Even though he couldn't Speak ~
He spoke with his bright eyes...
and his Wonderful Sweet Smile.

He was very intelligent...
You could tell he was a deep thinker

and he was always trying to learn
new things no matter how difficult

Watching Kody face each new day with all his struggles he had to face and the mountains he had to climb and frustrations he met, and also see what his parents were going through and the determination they had to help their Son live life the best he could, made me take a different look at my own personal life. My troubles compared to theirs was like one single grain of sand. It helped to change my way of thinking and gave me the strength and courage I needed to face things in my own life. I began to appreciate my life more and the Blessings that God had Blessed me with.

Before Kody came into my life, I was intimidated by anyone who had special needs, and I felt sorry for them. I never gave it a thought that they had a beautiful and loving spirit and that they had so much courage. I didn't smile at them because I thought they might think I was staring at them, so I wouldn't make eye contact with them. I didn't look at their parents either, because I didn't want them to see the pitty I felt.

Because of Kody, I now look to see their sparkling eyes, their wonderful sweet smiles, and I feel so much respect and admiration for them and their parents and family members.








 

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