hypoplastic left heart syndrome Pictures, Images and Photos

Monday, August 23, 2010

"Every Heart Has a Story"

Every Heart Has a Story


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.



Jayden at home having fun





Thursday, August 19, 2010

Jayden seen the Dr. Tomsho ped. and he was please of howJayden was gaining weigh. He is 17 pounds 1 ounces and is 25 inches long , sats where 82. He doesnt want to see Jayden ontill 4 weeks for his 6 month shots yay that day is going to be fun. Well not much to say right now just loving my baby for doing so great. Here is a couple of picture that we got taking















Thursday, August 12, 2010

GOOD DAY

Jayden is doing good. The birth to three nurse come and seen him yesterday and she was please on how far he has come in two month sinces he has be home. Jayden is starting to roll over, cooing alot , grasp toys with his hands, hold his head up when he is on his belly, stand up on his legs, gives mommy kisses, and trying to crawl. Now we are working on him to suck a bottle and eat baby food. He will hold the food in his mouth but wont swallow it so we are going to have a suck and swallow test done to see what is going on.

Other then that Jayden is doing really good and he starting get some teeth in. Apria sent a new feeding pump and he takes all of his feeds with out crying when they are half through it. We are doing a heart walk on october 2 and we need walks and donate. I need 10 walks to support team Jayden Chase and American Heart Association.


Here is a couple of pictures of Jayden playing in his brother dump truck.






Got have fun in he house cause it is just too hot to be outside and Jayden stays hot all the time so we keep him inside as much as we can.



Here is Jayden giving mommy kisses