On Jan 21, 2010 I had to be at the hospital at 5:00 in the morning for a schedule c-section. We didnt know that are baby had a heart defect. At 7:38 am Jayden Chase Taylor was born weighing 7pounds 3 ounces and 18 inches long. The OB nurse took him so the doctor could do his exam on him. They come in my room when I got back from the OR and told me that they thought Jayden had a heart murmur. So they called WVU childrens Hospital to see if they can transported him to get a better idea. Jayden was 8 hours old when the NICU/PICU team come and got him.
first time seen Jayden
Around 10 pm that night the told my husband that he has the one of worst heart defect there is Hypoplastic Left Heart Syndrome. He was a number 9 with hs heart defect and they gave us two choice to let him die or to go with the 3 open heart surgery. We said the series of 3 open heart surgery cause we couldnt live without are baby boy. I was still in Summersville, WV in the hospital when they find out and Jayden and my husband was in morgantown WVU childrens hospital.
first time i got to hold him
On Jan 28, 2010 Jayden had the Norwood done. Feb 18, 2010 Jayden had a Nissen and a G-tube because he had to much acid reflux and he couldnt keep his food down. He had his up and down for there ontill he went him.
couple weeks after norwood and two days before nissen/g-tube
On March 5, 2010 Jayden got to come home for the first time he came home on oxygen but was home only 12 hours and had to go back because his feeding tube was infected. The notice that the infected was from the g-tube he had in so the change it and it clear up. Jayden was suppose to come home on March 22,2010 but he had a set back and had to go back on the vent. He starting crying and just wouldnt quit crying and finally when they got him to stop crying he couldnt breath very good and they thought it was a seizure.
On April 8, 2010 he had his glenn done . His sats, blood pressure and everything else was fine when he came up and he also came up on room air. But as the day went by everything was not looking good. That night Jayden sats drop done to about 5 so they put the vent in him and they started to come back up so they done a x-ray on him. They found out that his right lung had collaspe from to much fluid around it.
day after Glenn
On June 3, 2010 Jayden got to come home and has been home since then and I am doing everything to keep him out of the hospital. Around August 2011 we are looking forward to have his fontan done. Jayden has been home 2 month and gain 2 pounds in the two month is doing great now that my two kids are in school we are going to be very careful that he doesnt get sick. He also came home on 1/2 L oxygen but has been weaned seens then. Jayden doesnt have his oxygen on during the day but has to wear it at night cause they said that it keeps the blood flowing.
couple weeks after norwood and two days before nissen/g-tube
On March 5, 2010 Jayden got to come home for the first time he came home on oxygen but was home only 12 hours and had to go back because his feeding tube was infected. The notice that the infected was from the g-tube he had in so the change it and it clear up. Jayden was suppose to come home on March 22,2010 but he had a set back and had to go back on the vent. He starting crying and just wouldnt quit crying and finally when they got him to stop crying he couldnt breath very good and they thought it was a seizure.
On April 8, 2010 he had his glenn done . His sats, blood pressure and everything else was fine when he came up and he also came up on room air. But as the day went by everything was not looking good. That night Jayden sats drop done to about 5 so they put the vent in him and they started to come back up so they done a x-ray on him. They found out that his right lung had collaspe from to much fluid around it.
day after Glenn
On June 3, 2010 Jayden got to come home and has been home since then and I am doing everything to keep him out of the hospital. Around August 2011 we are looking forward to have his fontan done. Jayden has been home 2 month and gain 2 pounds in the two month is doing great now that my two kids are in school we are going to be very careful that he doesnt get sick. He also came home on 1/2 L oxygen but has been weaned seens then. Jayden doesnt have his oxygen on during the day but has to wear it at night cause they said that it keeps the blood flowing.
Jayden at home having fun
1 comment:
He is such a cute little guy. I am so in love with his cheeks...I wish I could grab them through the computer. Your story is so moving and I am so glad you shared it today. I hope you don't mind me adding you to my blog list. I will be keeping your family in my prayers.
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