jaydenlovesmickey
Earning My Ears
- Joined
- May 28, 2013
- Messages
- 1
I am married and have 3 kids Katilynn9 Kaleb 6 and Jayden 3.
Jayden was born Jan 21,2010 at Summersville Regional Medical Center as we know a healthy baby boy. But in a hour it all went from good to bad. At 9:30 the doctor tols us Jayden was having trouble breathing and turning blue he thought Jayden had a heart murmur but was going to have him transported to WVU Childrens Hospital for more test. Around noon the transport team was there to get Jayden and they bought him to my room for us to tell him bye. I had to tell my baby bye that I never got to hold and to alone see for 2 seconds when he was born that was the heardest part every. Jayden was 8 hrs old when we found out he had one of the worst heart defects there is and with him all the way in Morgantown and I was still in Summersville it was very hard for me. Jayden was born with Hypoplastic Left Heart Syndrome(means he dont have the left side of his heart) on a scale from 1-10 Jaydens heart was a scale 9 and requires to have 3 open heart surgeries by the time he was 3. With the 1st at week old, 2nd 6mths and 3rd at 3yrs but thats not how Jaydens went. We never thought somethung like ths would happen to us we already had 2 healthy kids. On Jan 28, 2010 at a week old Jayden had the first series of open heart surgeries called the Norwood. We waited a very long 8hrs before we got to go back in PICU to see him. When I seen Jayden little body laying there with all those IVs (15) hooked up to him I just wanted to scoop him up out of there and cuddle with him. Jayden chest was still open ontill the swelling went down around his heart and when I seen his little heart pumping inside of his body it was a sign of relief. Jayden had his up and downs but recovery well and they closed his chest up three days after his surgery. At 2mths Jayden had to go back to the OR for g-tube surgery and Nissen because he had so much acid reflux he couldnt keep his food down. March 5, 2010 Jayden got to come home but wasnt home for a very long time 12hrs later he was admitted back to WVU for g-tube infection. On March 22, 201 Jayden was suppose to come home that day but it all went from a good day to a bad day, Jayden started crying they couldnt get him to stop crying and then he started having trouble breathing so he ad to be intubated. The test results showed that Jayden had a seizure. At 2 1/2mths old on April 8,2010 Jayden had his second open heart surgery called Glenn. Jayden came up from the OR breathing on his own but that didnt last long at 9:30-10pm Jaydens O2 level started dropping it drop all the way to 4% I turned and looked at the PICU window and started Praying. My husband and I went out to the waiting room while the nurse and doctors could do their job. Jaydens right lung had collasped making his O2 level to drop. Jayden recovery in 2mths and on June 3, 2010 he got to come home for the first time. He spent very along 4 1/2mths in the hospital but they took very good care of him. Jayden was doing good at home and getting the help he need to get back on track and to learn eat by mouth. Summer 2011 Jayden developed a rash and because of his heart they want to be precaution so they admitted him to WVU. He was there for two days and they ruled the rash out to be petechial rash. Jayden was a yr 1/2 before he started eating by mouth and now he eats all the time. March 6, 2012 At 2 1/2 yrs old Jayden his third open heart surgery called Fontan. He spent 2 wks in the hospital and came home on a fat free diet because after his surgery he had alot of fat draining out of his chest tubes. Jayden was on fat free diet for 6wks in that was the longest 6wks every cause he want to eat what we was but couldnt. Jayden is happy and always smiling. He is a little heart warrior.
Jayden and our family r getting ready to go on our very first trip far away. Jayden make a wish was to go see Mickey Mouse. so on June 28 we will leave Charleston WV airport on our way to Florida.
Jayden was born Jan 21,2010 at Summersville Regional Medical Center as we know a healthy baby boy. But in a hour it all went from good to bad. At 9:30 the doctor tols us Jayden was having trouble breathing and turning blue he thought Jayden had a heart murmur but was going to have him transported to WVU Childrens Hospital for more test. Around noon the transport team was there to get Jayden and they bought him to my room for us to tell him bye. I had to tell my baby bye that I never got to hold and to alone see for 2 seconds when he was born that was the heardest part every. Jayden was 8 hrs old when we found out he had one of the worst heart defects there is and with him all the way in Morgantown and I was still in Summersville it was very hard for me. Jayden was born with Hypoplastic Left Heart Syndrome(means he dont have the left side of his heart) on a scale from 1-10 Jaydens heart was a scale 9 and requires to have 3 open heart surgeries by the time he was 3. With the 1st at week old, 2nd 6mths and 3rd at 3yrs but thats not how Jaydens went. We never thought somethung like ths would happen to us we already had 2 healthy kids. On Jan 28, 2010 at a week old Jayden had the first series of open heart surgeries called the Norwood. We waited a very long 8hrs before we got to go back in PICU to see him. When I seen Jayden little body laying there with all those IVs (15) hooked up to him I just wanted to scoop him up out of there and cuddle with him. Jayden chest was still open ontill the swelling went down around his heart and when I seen his little heart pumping inside of his body it was a sign of relief. Jayden had his up and downs but recovery well and they closed his chest up three days after his surgery. At 2mths Jayden had to go back to the OR for g-tube surgery and Nissen because he had so much acid reflux he couldnt keep his food down. March 5, 2010 Jayden got to come home but wasnt home for a very long time 12hrs later he was admitted back to WVU for g-tube infection. On March 22, 201 Jayden was suppose to come home that day but it all went from a good day to a bad day, Jayden started crying they couldnt get him to stop crying and then he started having trouble breathing so he ad to be intubated. The test results showed that Jayden had a seizure. At 2 1/2mths old on April 8,2010 Jayden had his second open heart surgery called Glenn. Jayden came up from the OR breathing on his own but that didnt last long at 9:30-10pm Jaydens O2 level started dropping it drop all the way to 4% I turned and looked at the PICU window and started Praying. My husband and I went out to the waiting room while the nurse and doctors could do their job. Jaydens right lung had collasped making his O2 level to drop. Jayden recovery in 2mths and on June 3, 2010 he got to come home for the first time. He spent very along 4 1/2mths in the hospital but they took very good care of him. Jayden was doing good at home and getting the help he need to get back on track and to learn eat by mouth. Summer 2011 Jayden developed a rash and because of his heart they want to be precaution so they admitted him to WVU. He was there for two days and they ruled the rash out to be petechial rash. Jayden was a yr 1/2 before he started eating by mouth and now he eats all the time. March 6, 2012 At 2 1/2 yrs old Jayden his third open heart surgery called Fontan. He spent 2 wks in the hospital and came home on a fat free diet because after his surgery he had alot of fat draining out of his chest tubes. Jayden was on fat free diet for 6wks in that was the longest 6wks every cause he want to eat what we was but couldnt. Jayden is happy and always smiling. He is a little heart warrior.
Jayden and our family r getting ready to go on our very first trip far away. Jayden make a wish was to go see Mickey Mouse. so on June 28 we will leave Charleston WV airport on our way to Florida.
Just a bit of hope for your sons future.. The little cutie in my profile pic on the left is a single ventricle/fontan child. She is 9.5 years old! Her CHD was caused by RAI Heterotaxy. We adopted her at age 6 from China and she only had the Glenn Shunt so she was in bad HF.. She had her Fontan at age 7 after a very "iffy" time wondering if she would be a Fontan candidate.. These heart kiddos are fighters! They give us heart moms the strength!!! My dd goes to all day school and takes ballet. Tonight she walked 2 laps around a track!! We are bringing her to Disney June 24-28. We will leave some heart vibes for your Jayden!! 
