Watch me Grow

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My Story

Hello, my name is Andrew Wade Jackson. My friends call me Drew. When my mommy was 17 weeks pregnant they found out that I have a severe heart defect called an unbalanced atrioventricular septal defect. This means I have holes in the septal wall of my heart and that only 1 of my 2 ventricles is working properly. This heart defect was caused by trisomy 21 often known as Downs Syndrome.
I was born in Kalispell on July 10th and 3 hours after birth took my first plane ride to Seattle. I was there for 10 days as they monitored my heart. Then I went home to Kalispell to be with my family.
On September 10th I was set to have a pulmonary band surgery which is normally a low risk surgery. However, they were not able to do this surgery and had to begin the "Norwood" series of surgeries. My first surgery was Sept. 11th. Early in the morning I went into surgery spending 4 hours on the heart and lung by-pass machine. When it was time to come off they could not get my heart and lungs started again. I went on a life support machine called ECMO which takes the blood from the body, gives it oxygen and sends it back. This machine would be my best friend for the next 12 days and ultimately saved my life. After many days on life support, many more in the CICU, and a while on the floor I was able to return home. At home I was on oxygen full time, had a feeding tube, and many medications. On April 28th, 2009 I had my second open heart surgery, the Glenn. This surgery was not near as eventful as the first and we were able to return home after only 15 days away. At home things have gone well. I am now without oxygen and without my feeding tube. Currently my Cardiologist is watching me closly as we wait for my next open heart surgery, the Fontan. This will take place between the ages of three and five. My mommy and daddy are nervous as this surgery is more major than the last. Given the complexity of my heart, my past history of issues, and my trisomy 21 make my surgerys more difficult. However, my mommy and daddy trust in the Lord and the Power of Prayer.

August of 2011 we decided to move to Seattle to be closer to Childrens and are adjusting to life in the big city. On Tuesday July 31st I will have my next major open heart surgery. Please remember to say a prayer for me.

Thank you for visiting my site.

Here are a few statistics about my life from July 10, 2008 to July 24,2012:

Days lived at Childrens: 55
Days in ICU: 33
Days on Life Support: 17
2 Open Heart Surgery(Complete with Heart and Lung By-Pass machine)
1 Heart Surgery
3 Heart Cauterization
1 Life Flight(Kalispell to Seattle)
1 Ambulance Ride(Kalispell Hospital to Airport)
3 Trips to Seattle
1 Cardiac Arrest(Complete with CPR and Epinephrine-This saved my life)
To many Echocardiograms to count
To many trips to Cardiologist to count
To many blood transfusions to count

Please say a prayer for me.

Love, Baby Drew and Family

Wednesday, October 31, 2012

Fontan Surgery Day 3: A Good Day

Hello Friends,

Today has been a pretty good day:

Big Drain Out: Check
All IV's Out: Check

I am still in the ICU because when I get mad my oxygen levels go down and I turn really blue. I still hurt a little. Maybe some of that will go away when I can get the other two chest tubes out. They are still draining a little bit though. I didn't eat or drink much today so they really want to see me doing more of that. My mommy and daddy are so proud of me. I cannot wait to be home with my family again. I hope it's really soon.

Love, Baby Drew

Please remember to say a prayer for me.

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Tuesday, October 30, 2012

Fontan Surgery Day 2:

Well while the operation went well and they are pleased with my heart and lungs, I am not very happy being here. Last night was pretty rough cause I just don't like hospitals, things attached to me, and having to sleep in strange beds without my mommy and daddy. They miss me so much and I know they want to hold me so bad. Because I am so strong and am not happy to be here they are having to keep me sedated. I will be in the ICU at least another day or two and then hopefully to the Floor. I will post some new pics later.

Love, Baby Drew

Please remember to say a prayer for me.

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Monday, October 29, 2012

Fontan Surgery Day 1 Post Surgery:

Hello Friend,

I am out of surgery and everything went very well. They are gonna try to take my breathing tube out soon. My mommy and daddy are so proud of me. They said they will take me to Olive Garden for pasta when I go home. I am so excited to get healed up and go back to my family. I will miss snuggling my mommy and daddy in bed.

Love, Baby Drew

Please remember to say a prayer for me.







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Fontan Surgery Day 1:

I am in surgery right now. They started about half an hour ago. I will be back there 4-6 hours. My mommy and daddy are very sad. They are praying very hard for me. I love them so much and I cannot wait to be home with them again. Here are some of my pre-op photos:

Please remember to say a prayer for me.

 

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Hello Friends, I am back

Hello everyone! I am sorry is has been sometime since my last post. The last few years have been filled with much joy and laughter with me and my family. Much has happend since my last post. The biggest news is that we moved to Seattle just over a year ago. We really like it here and have enjoyed our new home. I have attached some updated photos below so you can see me and my family.







Today I had my Major Open Heart Surgery, The Fontan. Please remember to say a prayer for me.

Love, Baby Drew and Family



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Monday, October 26, 2009

A Busy Boy




Hello Everyone,

I hope you all had a nice summer. Our summer has been busy, but fun. I have learned to Army crawl and am into everything. My mommy and daddy are excited to see be doing so well, but they seem to have forgotten what it's like having a baby crawling around the house. So far I have done well without my oxygen and feeding tube. The doctors are happy with my progress and feel I am growing well. I still have physical and occupational therapy every week. My mommy, daddy, and my sissies enjoying playing with me and we have been having a lot of fun together as a family. We are getting ready as this winter I will be stuck back in doors away from people and from germs. Since my immune system is very week I have to be very careful not to get sick.

I would also like to thank my new friends at 8leggedgecko for all they are doing for my family. If you are visiting this site from theirs you can track my story back to my first surgery just over a year ago.

Please remember to say a prayer for me.

Love, Drew and Family
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Friday, September 4, 2009

A visit with Family

Hello Everyone,

I hope you are all doing well. Life has been good for me. Recently me and my mommy and my daddy and my sissy's drove to Torrington, WY. We went there to see my Great Grandma Veneda, along with a few of my aunt's, uncle's, and cousins. It was great to get away as a family and this was the first time many of them got to meet me. I really enjoyed meeting some of the family that I had not had the chance to meet. I do miss them and wish we would have had more time to spend with them.

Right now things are going well with me. Once we get back to cold a flu season I will be stuck in doors again as we try to keep the germs away from me. Hopefully I will be able to stay healthy and germ free.

Please remember to say a prayer for me.

Love, Baby Drew and Family
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