hypoplastic left heart syndrome Pictures, Images and Photos

Tuesday, April 19, 2011

Heart Walk 2011

This year we are doing the heart walk in charleston and not bridgeport cause the time for the one in Bridgeport would just be to cold for Jayden. This year we are going to do the walk for Jayden and couple of other kids that live close to us and that we have coming to know with facebook and in person. The first little girl her parents just find out three month ago that she has a large hole in the top to chambers of her heart and will have surgery in June. Her name is


Riley Phares





This little girl her mom has been by my side ever since I find out about Jayden and She has been there with us through his surgery and is still here with us. I cant thank her either for all she has done for us. Barb done the heart walk with us last year and is going to do it this year to.

Alexis



This one is a little boy named Mason Brogan I meet his mom on facebook and he has a pacemaker and has to go every so often and have open heart to get the pacer wires change from where he is growing.


The last one is my little trooper Jayden and I am so proud og him today he has come a long ways. Jayden is pulling his self up, eating by mouth, in to everything. jibber jabbers to everything, loves to go outside, and want let mommy out os his sight. Jayden fontan will be in the fall or this time next year he is under weight right now. But thats ok cause I am not ready to give me baby up I want to spend as much time as I can with him.

Jayden Chase Taylor





Please help us meet are goal or join Team Jayden Chase
http://heartwalk.kintera.org/charlestonwv/teamjaydenchase

Friday, April 8, 2011

One year

One year ago today I watch my little baby be wheeled to the OR room for his second open heart surgey. One year ago today I watch my baby little heart beat inside of his chest. One year ago today we almost lost my little baby but think to the staff and doctors at Morgantown as they acted quickly of keeping him with us. Jayden u have thrill to be with us today and we have love spending time with u and hope to spend many more. You have learn how to crawl, climb, and also learn to eat by mouth. Your family is so proud of you and is so glad you have come so far. The day we brought you home you could hold your head up or nothing and you show them nurse for Birth to Three that you can do everything that they want you to do. Jayden is eating 4 jars of 4oz jars of baby food a day plus the doctor just put him of Pedisure with fiber cause they said he was under weight. Jayden cardilogist wants to wait ontill he gains weight to do his third surgery and he said probably this fall or this time next year. He is starting to pull hisself up, waving bye bye, saying bye, and he says momom and he also blows kiss.

Tuesday, March 15, 2011

Jayden goes to the cardilogist March 28 to check his sats and to schedule for his heart cath to see when his Fontan is. I have a million of thing going through my head everytime I think about this. I am not ready to hand my baby over i want to keep him in my arm for every. Jayden is doing good getting over a cough and double ear infection. He is starting to eat more by mouth. He eat a 1/2 jar of peas yesterday and I am so happy. We also have a OT that comes in and works with him cause we want the feeding tube gone.



PRAYER NEEDED FOR RILEY AND HER FAMILY


The hole in Riley heart has got bigger and she will be having surgery soon. Please pray for her a her family cause this is her first time and her familys.


Friday, March 4, 2011

Pray needed



This little girl need alot of pray. Her name is Riley Phares. She will be going to have heart surgery. Riley has a large hole in the the top chamber on the right side of her heart and the right side of the heart is bigger then the left side. If u could please pray for this little girl and her family.

Thursday, March 3, 2011

Good Day

Jayden is doing good he is starting to eat by mouth more and he has learned to army crawl. He has also learned to pull his self up but cant stand there by his self. He loves to be outside and talks to the dog thinking they can talk back to him but it is so cute. Jayden likes to pick on his brother and he thinks it is funny and he thinks everything Kaleb does is funny to him. He goes to the cardilogist on March 28 to see how well he is doing and then they will schedule him for a heart cath to see when his fontan will be. Hopefully not soon cause I dont want to hand my baby over now I want to spend all the time I can with him. He is very much so a mommys boy and I like it. I cant wait for spring to come so Jayden and the other to can go outside more they are very much so tried of being in the house. But they have been sick to Jayden has double ear infection , Kaleb has ear infection and Katilynn did have that virus. Jayden weighes 20 pounds and 10 ounces and is 28 inches long he isnt a baby no more where has the time went. I cant believe that he is already 13 months old it just seemed like yesterday I had him. We have a OT nurse starting tomorrow to work with Jayden on feeding and to working on his mobile skills. So hopefully he likes her and doesnt cry on her cause if he dont like you he want go to you and he will cry when you talk to him. Which is a good thing because i dont want him to go to strange or let them talk to him.

Saturday, January 22, 2011

JAYDENS 1ST BIRTHDAY


Jayden and Kaylee(Jaydens Cousin)










He like to put his hands in the cake but he didnt like the icing on his hands













Friday, January 21, 2011

Happy 1st Birthday

Happy 1st Birthday to my little miracle baby Jayden Chase Taylor.

Dear Jayden

One year ago you where borning and they thought you had a heart murmur so when you was 8hrs old you was transported to WVU childrens hospital and they told us you had one of the worst kind of heart defect there is. They told us we had two choice to let you die in 24hrs or to do the series of three open heart surgeries and we pick the series of heart surgerys. One year ago you was the light of our life and still are we hold you love you and cuddle you which you like. You have show us so many things to life and we are glad that you have. Jayden you are my little miracle baby and will always be. We love you so much and glad you are here with today.


You fight for you life and you still are people dont know much about you and when they ask mommy tells them and if they dont know what Hypoplastic Left Heart Syndrome is we tell them but most of them look at us like we are stupid. We have made to 1 year and many more to come. Just keep up the go work and hopefully when you grow up you will tell you story about living with half heart.

On April 8, 2010 it was the night you had your Glenn we thought that we was going to lose you. Your oxygen sats drop to 6 and your left lung collasped. But you show they doctors nurse and staff at WVU childrens hospital that you was letting go and that you was going to fight for everything you have and you did that is why you are here with you today. We just like to think WVU Childrens Hospital doctors, nurse, and staff for keeping you here with us and especially your surgeon Dr. Gustafons for everything he has done and is still doing for you.


Jayden you had a nice birthday with all of your family and friends so couldnt show up cause they where sick but mommy told them not to come cause she didnt want you sick.

HAPPY 1ST BIRTHDAY MOMMY, DADDY, KATILYNN AND KALEB LOVES YOU

Monday, January 3, 2011

2011

Jayden will be a year in two weeks doesnt ever seem like. On Jan 21,2010 is when Jayden was borning and that is when we found out he had Hypoplastic Left Heart Syndrome and that he would have to have a series of three open heart surgery. Jayden is such a miracle baby to are family and he show us not to take life for granted and that god is good for what he does. We would just like to thank everyone for the support, prays, and thought when we was going through this hard time. It was hard know that my baby was healthy the whole time and me asking they doctor over and over why I was passing out. Founding out 8 hours after he was borning that he had HLHS. We couldnt ask for a better baby then Jayden is we love him so much and glad he is here with us today. Katilynn and Kaleb both love there little brother and want let nothing happen to him and they want let no one to touch him.He weighs 21 pounds and 7.3 ounces and is 28 inches long. So by far he is doing great keep him at home from everyone and if they are sick or feel sick they cant come to my house I want to keep him from getting sick as much as I can. He got his bottom teeth in around christmas time and Katilynn lost her to front teeth on christmas. We had a great christmas Jayden like his toys but he didnt want the paper on them. Jayden is taking solid foods but liquid he still gags and crys. Birth to Three is sending a nurse to help with that. So far 2011 has start out a good year for us. Jayden is very mobile he rolls all over the floor and he like to be on his tummy more. He just like everything Kaleb does is funny.

My goal for 2011 is to keep doing want I am doing with Jayden and to keep him as safe as possible from getting sick. Jayden goes and see the ENT Jan 24, 2011 I am hoping everything goes well there and He goes back in March to see the cardiologist and they maybe do a heart cath on him then to see when he is ready for his FONTAN maybe in sept or oct. He can say momm when he get mad or upset cause he knows mommy with came and get him. Jayden likes to play peck boo and his new thing is when u tell him something he will shack his head NO.

Hope everyone 2011 is great