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

off to work again

I went and told walmart that I was ready to come back to work as bad as I hate it. But I have been off for 8 month. I just hate to leave my kids and go back to work but not going to get no money to pay my bills that way. I told them I can work after 6pm cause my husband works during the day and sister doesnt know how to take care of Jayden right now. I had to take off when I was pregnant with Jayden because I was passing out at work and the doctor told me that is was stress on me and then we Jayden was borning we found out he had HLHS. Maybe that could be why I was passing out at work. So hopefully daddy will do find with all 3 of the kids and get Jayden medicine to him when it is time. I have a week left him before I go back to work so maybe I will let him do the work with Jayden when I am here to see if he can get the hang of it because he really has not been alone with Jayden since he has been home. But everything will be fine I trust him.

Pray that Jacob does well through his surgery and recover. For his family to hand their little boy over.

Today the birth to three nurse came and work with Jayden and she said he has come a loong ways since she been here and that was about three weeks ago. Well today he is 6months and they are still working with him to take a bottle cause he doesnt wnat to suck it he just wants to hold it in his mouth but it just takes time. He can hold his head up when sitting up but on his belly he can hold his head up yet so he has to do alot of belly time. But other then that he is doing good and I am so happy that he is home with me and his family. He had along 4 month in the hospital and a lot of up and down when he was in there.


Some lady at the store the other day ask me what was a wrong with him and I told her. Then she said that he shouldnt be born why would she say something like that. But I told her I would not trade him for nothing he just like a normal baby to me. Rude lady to me. I guess you will meet people like that.

My 3 year old Kaleb told me that he was going to take his heart out and give it to Jayden cause he was getting a bigger one and that Jayden need it. I thought that was the cuties thing. Kaleb and his sister Katilynn are so glad that Jayden his home. Katilynn would cry everyday that he was in the hopsital because she wanted him home and was afraid something was going to happen to him and we told her that nothing was going to happen to him. i love my kids.


Look I learn to sit up by myself

Jayden is doing good he got his second set of shot thursday and he has not been a happy camper for a couple of days. We are doing a heart walk October 2nd in Bridgeport, WV. Jayden weighes 15pds 2 ounces he has come along ways sinces he has been home which is a good thing. They are going try to get him to start sucking a bottle because starting after the 21 of this month he can eat baby food but he just acts like he doesnt want to suck a bottle but maybe if mix it with a little cereal he will take it if not they are going to do a test on him to make sure it is going down the right way. The birth three nurses and myself are going to work on that for right now so hopefully everything goes well.

Prayer for Jacob that his surgery goes well , that he does good after his surgery and prayer for his family.

Good Day

Yesterday went good at the cardiology he said that Jayden is gaining weigh like he wants him to and Dr. Phillips went up on his capotril for his weight. Through the day he dont have to have his oxygen or just on a low sitting but he has to have it at night. Jayden doesnt have to see the GI doctor no more cause his liver and jaunice level are normal now but if something would happen he would have to go see him. It was a good day for Jayden but me I got car sick on the way to Morgantown cause I was sitting in the back with Jayden. He doesnt like to be by hisself someone has to be with him at all time. He doesnt go back for 4 months and that is when they are going to do a echo. So hopefully for 4 months everything goes go and we can keep him out of the hospital. Thanks for everyone that is praying for him. My sister told me that god know I could take care of Jayden and thats why he gave him to me. It is so nice to meet other moms on here that is going or has already went through what I am going through right now and that help a lot to read their storys and see what they have alright went through. Before Jayden was released from Morgantown we see a girl I went to school with and her little girl has HLHS and the little girl name was Bailey and she was suppose to have her third surgery but the had to go in a on block her arties. We talk to her mom for along time and she help out alot because where we are at now she already went through it. It is so nice to talk to other parents going through this to because you can learn alot.

cousin buddies

We had a family cookout before we all went to the fireworks and my little neice come down she is 9 months old and want to love all over Jayden. Jayden liked it and he thought it was funny. Jayden has to go to Morgantown wednesday to see the GI dr. reidel and he has to dr phillips to the cardiology. He like watching the fireworks and he went to sleep watching them. Just want to think everyone for coming. We dont have to go to the doctor three times a week now his liver test is normal now, thank god for that cause we was afraid he was going to have to have surgery on his bladder and liver if the medcine didnt help. Sorrry it took me so long to get a post on here but going to the doctor , taking my little girl to summer school and taking care of Jayden and his brother. Birth to three come thursday and friday and worked with Jayden for a little bit. They are going to work getting him to suck a botttle because he was not had one seen he was borning he suck a pacifier now. Wednesday going to be a big day have to be up there by 11 and be there just all most all day.

Thank everyone for all of the prayers and for helping us for when we were going to morgantown three times a week. We when like to think the nurse at the childrens hospital for taking such good care of him could ask for better nurse then them. They are so caring and nice they care about their patient but the well being of the family too. There was a couple of nurse that got attached to Jayden and wanted to take him home with them. The doctors if something went wrong they are right now it ontill they got the right medicine to fix it and they we stay in that room ontill he looked better to them. I dont know what would do if that childrens hospital was so close to us.

Thank my family for being there when we need them the most and we will re-pay you sometime. My husband boss has be excellent to us through such a tough time I dont know what we would do if he didnt have such a nice boss.

Thanks to a good friend of my Barb T. you have been amazing friend to us and you give us a head up of that we were going to look for. Thanks so much for being there for me and thanks for everything you have done. Dr. Gustafson is a excellent surgery. He doesnt have good bedside manners but he save my childs life and we couldnt ask for a better doctor to do the stuff he does. Thanks to all the heart mommys for be there.

Jayden has been home for a month and doing excellent he weighes 14 pounds and 12 ounces now. He is putting a little fat on that body but he looks so cutie with his fat checks. He like to watch cartoons with the other two kids laying in the floor.

Sophie loving on Jayden

June 24,2010

It has been a long time but just been busy with all the medicine and doctor appointments. Jayden got to come home on thursday june 3 and not that tuesday because he had billirubin and it was high so had to wait for that to go do some. He has to have lab work done 3 times a week to make sure that it stays down. Jayden weighs 14pds 5ounces now and his billirubin is down. He seen the cardiology and neurology on June 14 and Dr Gus come and look at him to and made sure everything was alright. He was a little fussy that day. Jayden is doing really good and he loves to go for walks outside but i would like to if i was in a hospital for 4 month i would like to be outside too. We are so glad for him to be home and not in that hospital. Jayden has to go back to the cardiology on July 7 and he has to see the GI doctor that day too so that is going to be fun cause jayden doesnt like anyone touching him. With all the medicine schedule , feeds and going to the doctor appointments and all the nurse coming in i feel like i have no time for other two kids so when Jayden goes to sleep I try to do stuff with them and clean house and it is hard because my husband work and does get home ontill 6 sometime 7 clock. Everyone say I dont see how u do it but it is just something u have to face and do. Thanks for all of the prayers and about around 18 months Jayden will have to his last surgery. So hope he stay out of the hospital ontill then.

Getting ready to go home Tuesday

Trying to get ready for discharge at home and at the hospital. I dont have to have the feeding tube training just have to be refresh in my mind to see if I remembered how to take care of him myself. At home everytime I clean my 3 and 6 year old trys to help which is a good time but they want to make a mess after the pick up where they picked up at but they are kids. They are so glad that their brother is coming home because they miss him so much. I have to stay friday night with a nurse and the weekend on I have to stay in a room with no monitors or nurse to see if I can take care of him myself. His left lung isnt paralzyed no more now they are going to work with him to suck and pacifier so he can get ready to suck a bottle . Jayden will get to go home on Tuesday if everything goes well. Jayden is doing so much better and he likes to watch the monitor. Thanks for all of the prayers to get my little boy to where he is know.

Jaydens day

Jayden has had a pretty good day. He has been on bolus feeds for a couple of days now. Jayden gets 80ml of formula over half hour and then off for 3 hours and he has taking that very well. He is on contiuous feeding at night time which is a good thing. Maybe in 2 to 3 weeks he will get to come home. He is on 1 liter of oxygen cause they said his lung was not developed enough and they was not developed enough when he had his second surgery but he had to have the surgery so early. The doctor told us that Jayden would have his third surgery around 18 months cause he had his second surgery so early. He will have to come home with oxygen on. Thanks for all of the prayers.

May 13,2010

Jayden is doing good today. His oxygen was moved back up to 1 liter cause his sats drop and couldn't get them back up. The doctors had a echo done last night to make sure his glenn is working right cause Jayden has been a little fussy for a couple of days now but today he is doing good. They are not going to wean nothing going to leave all of his medicine where they are at because they think that could be so of the problem. Thanks for all of the prayers and hopefully Jayden will get to come hoime soon.

Happy Mothers Day

Jayden is a little fussy today so they ativian that was increased yesterday the Doctor had the nurse to go back up on it cause they thought he was withdrawling from it. Still trying to work with him to suck a pacificer so he can maybe get ready to suck a bottle. He is still on 1/2 liter of oxygen and is doing great on it his sats are stays above 80s. No changes everything still the same just trying to get him ready to go home maybe in a couple of week if everything goes well. Like the doctors tell us no news is good news and everything from this point is good news. Thanks for all of the prayers. HAPPY MOTHERS DAY to all of the mommys

May 4,2010

Jayden is still doing good and he got to rest for a couple of days before they're going to wean his oxygen and sedation medicine that they give him through his g-tube. Thursday will be his sisters 6th birthday and she was hoping for him to be home on her birthday but he won't be so she went and see him. He is awake more now since he isn't on all of that sedation medicine and we like to see. Jayden is starting to smile more and he trys to giggle. He is coming back to the baby he once was before everything happen because Jayden is a very happy baby. Hopefully soon he will be home and we can love on him with out all of those monitors on him.

Thanks for all of the prayers.
The Taylor Family

April 30,2010

Jayden is doing good. He is off all of his IV sedation medicine. Jayden is on 50% of blended oxygen and they are trying to get him off of it the next two days and on to room air and he is doing very good on 50% oxygen. He is still being pacing because Dr.Gus didnt like where his heart rate was sitting so he hook up the pacer. Tomorrow or the next day they're going to add more calories to Jaydens formula so he can get some more calories. We are so please as how Jayden is doing.


Keep Jayden in ur prayers and thanks for all of the prayers.

Eric, Jessica, Katilynn, and Kaleb

April 25, 2010

Today Jayden is doing good he is on the nasal canula and he has been on it for a couple of days. He is doing very good on it so far. Jayden is coming down on his sedation medicine slowing but that is so he want have no withdrawl from them. They started him back on his lasix drips. Everything is still the same nothing has really change and hopefully he keeps on getting better and nothing happen from know ontill time for him to go home.

Thanks for all of the prayers for Jayden and his family.