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

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.

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.

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.

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.

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

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

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

PRAYING FOR BAYLEIGH

Pray

This post is going to be about a little girl that need EXTRA prays for her and her family her name is Bayleigh. She will be going for her fontan but this will be her 4th open heart surgery and it will be her second one this year so she needs lots of pray. Bayleigh will have her fontan on the thursday the 16th.

This is Bayleigh please pray for her

Jayden

He is doing good and he will be going to morgantown on the 15th for a check up with the surgey to see how thing are going. Jayden is pulling hisself up to sitting and can sit all by hisself. He is very mobile he rolls all over the floor to where ever he wants to go.

Eating

We are still working with Jayden to get him to eat by mouth so far it is going great. He likes mac and cheese , grees beans and banna and yogurt.

We took the kids to see santa and Jayden didnt know what to think of him. He cried when we sit him on his lap but if he was sitting in the floor beside him he was ok. I did get a picture with him on his lap without him crying.

PRAYING FOR BAYLEIGH AND HER FAMILY HOPEFULLY A LAST RECOVER SO SHE CAN BE HOME FOR CHRISTMAS

Sorry it has took me a long to put a blog on here but between moving and getting everything put in the right place have not had no time. Well Jayden like the new home and so does the other two kids. Jayden goes to morgantown and see DR. Gustafson on the dec 15 and he is just going to check his scar and make sure he is doing ok. I took the kids this pasted saturday and let them see santa. Jayden is starting to eat back mouth he likes mac and cheese, bannas and green beans right now but we are trying him with different stuff everyday. He has learned to sit up by hisself and is in a big boy car seat and he loves it cause he can see different stuff. Now that he knows how to sit up he does want to be laid down at all but when he is sleeping. We put are christmas tree up and he roll his way over to it and was playing with the ornaments.

Jayden went to the cardiologist last monday and everything was good. He had a echo done and DR. Phillips said that everything looks good and he just want to leave his medcinie alone for right now. Jayden goes back in march and they are going to check his o2 sats if they are good going to bring him back april or may and do a heart cath. They will decide from there when he will have his Fontan but Dr. Phillips said proably sept or oct. Jayden went today and had his RSV shot and he was not a happy camper cause he was asleep when the nurse came in a gve it to him.

Sorry it has took me so long to blog but we bought a new house and trying to get everything pack up to move in it and I work in the evening. But Jayden is doing great and Katilynn and Kaleb had the stomach virus and he didnt get which I am thankfully for that cause I wouldnt know what to do if he got that where he had a nissen done it would be hard on him. So when they are sick the try to stay away from him ontill the get better. They didnt get to go trick or treat cause they were sick so a bought some candy for them from work. I dont think I want Kaleb to go trick or treating cause he say everything scares him and it is hard for me to get him to go to sleep at night now hopefully it will go away soon. Jayden is starting to eat some baby food but we have to take it slow with him where he hasnt eat by mouth at all ontill now but he is doing go with it.

Happy 9 months

Happy 9 month

Dear Jayden

9 months ago I was not sure if I was going to smile, laugh, and cry. 9 months ago you had your ups and downs and a very scary journey. You have touch alot of people for your amazing journey and you show the nurse and doctor in the hospital who was boss cause you are such a fighter. Thank you so much for being here with your family we love you everyday and so glad to have you with us . You are so amazing for what you have been through.

You have grow up so much and learn so much in the last 4 months that you have been home . Everytime I see you smile or laugh just makes me want to cry happy tears. When you was in the hospital for 4 months I would cry everyday cause I want you home with me. I love watching you play with your brother and sister and how they make you so happy. I love watching you smile at daddy cause he makes you happy. You are our little miracle.

Thank you for making us see how good life can be to us and that miracles do happen. Thank you for all the smiles and laughs. Thank you for fighting so hard to be with us. Thank you for everything that you have done.

9 months ago you change evrything in our lifes. 9 months ago you show us that god is very good to us. 9 months ago you was fighting for your life to be with us. 9 months ago I was pacing the hallaway floor of the hospital worry if you made it and everything was alright.

I wont say the 9 months have been stressful. You mean the world to us and we would not trade you for nothing. The time I have with you now I will love you and enjoying being with you. I know I worry to much but I think all heart mommies worry to cause I will wake up every hour on the hour to make sure you are breathing. I will love always. Mommy, Daddy, Katilynn, and Kaleb are very proud of you just keep up the good work.

This was you 9 months ago

This is you know look how big you are

Jaydens day

Jayden is doing great he went to the doctor and had his ear checked cause he had ear infection about 3 weeks ago. He also got is flu shot and he didnt even cry. Jayden went to the suck and swallow clinic a week ago and the said we had to take things slow with the eat. He likes so baby food but he eats a little at a time which is good. Jayden weighs 19 pounds 19.1 ounces he is gaining two pounds in 2 weeks. Jayden has to go to the cardilogist Oct 25 for a Echo and he has to see the seizure doctor hopefully everything goes good I will so much better when that day is over cause I wont have to worry so much. Well update when that day comes. The heart walk was Oct 2, 2010 and it was a good day Jayden got a award for being on the honorary chair and he got to start the walk out.

Katilynn and Kaleb are doing good in school. This is Kaleb first year in school and he loves it cause he said he has alot of friends to play with. Thank to everyone who donation to american heart association and team jayden chase. Thank to everyone that was walker on team Jayden Chase.

On Oct 8th made 6 month since Jayden had is Glenn and he has been doing very great trying to keep him away from the sick when he goes to the doctor. I make the kids and husband was their hands before the touch him. Wont let no one visit my house if they are sick.I told them if the are sick they cant visit ontill the are better cause I want him to stay from the hospital he was in there for a long time. Jayden has been home for 4 month and we want it to stay that way.

Barb and Jayden

Jayden found this leave and play with it waiting for the walk to start. It is amazing what kid find to play with and too keep there mind off of everything.

This is Jayden award for being on the Honrary Chair you cant see it that good

This is Jayden Grandpa favorite shirt ( DONT MESS WITH ME CAUSE MY GRANDPA KICKS BUTT)

Jayden after havin his flu shot

AHA start heart walk

this is why you should help out

JAYDEN 8 MONTH

Jayden had a doctors appointment today and everything is good except he got three shots. He will be 8 month tomorrow and it is also my birthday. Jayden weighs 18 pounds and 8 ounces and is 28 inches long. He is just growing up to fast on me. He goes sept 30 and has the swallow test done so hopefully he will start o eat by mouth.

Kaleb is in preschool and he loves it. He cry in the morning when he leave the house cause he dont want to leave mommy but he is fine the rest of the day. Katilynn is in first grade and she is doing really good since the teacher put her in front of the class.

The START HEART WALK is next week help me by clicking the start heart walk button at the top of the page and donation for a good cause. Jayden is in a video and on a billboard for the Harrison County Start Heart Walk.

Well Jayden is doing great. We went to bridgeport two weeks ago for Jayden to be put on tv for Harrison County Heart Walk. Had a family reunion yesterday and it was cold so my family from out of state got to see Jayden for the first time but they were just a little stick up about it. Kaleb started preschool and he loves it. Jayden has a swallow test schedule for Sept 30 so hope everything goes go and we can start to work with him to suck a bottle and eat baby food. He is starting to talk more and more everyday and he is in 3-6 months clothes now and size 1 in shoes he is getting there. Jayden just love to take thing a make noise with them he thinks it is so funny. I get all the walkers for the heart walk in october I got more than my goal. Jayden is scheduled to see the cardiologist on Oct 25 and he will have a echo done that day to.

Kaleb

this is jaydens newest cousin kayla paige




Katilynn with her new hair cut

"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

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

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

Jayden had a pediatrics appointment today and he weighs 16pounds and 1 ounces. Since I got a new feed pump from apria Jayden has been taking his feed all at one time dont have to stop in between wait a little and then start it back up. But he still wont take a bottle so Dr. Tomsho is sending him to Morgantown for a test. Dr. Tomsho is Jayden pediatrics and he is best where we live at I dont know what I would do if he was not here. He told us to try Jayden on baby food to see if he would take it because he wants to start now to get him to eat food by mouth and not everything through the feed tube. I have two normal kids the girl has astma but nothing like Jayden and you dont know how good life is to you ontill something like this happens to you. Jayden has show how good life can be to us and how good god is to us and I think him everyday just waking up to see my little boy laying there in his bed laughing and just looking at his hands. Jayden is doing good and the doctor is please with him he likes his fat on him. He calls Jayden his "little chunky monkey".

Jayden still wears 0-3 months some 3-6 in clothes and newborn in shoes. I think he teething because he has been chewing on his fingers sometimes you look at him and he has both hands in his mouth. If you child had a feeding tube did you have trouble getting them to suck a bottle. I just think Jayden problem is he was not had a bottle since the day he was borning.

My fingers taste good