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!
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.