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

Saturday, September 27, 2008

Day 17 Mom's Arms at Last




Today has been a good day for me. I did get my breathing tube taken out, so I am no longer on the ventilator. I was not getting rid of my carbon dioxide like they want me to, so I was put on a c-pap machine to help my lungs empty the bad air.

The best part of today is that my mommy is holding me and soon my daddy will get to hold me. It has been 17 days since they were last able to hold me. They are so happy! It is great when my mommy and daddy can hold me. Hopefully in a couple days or so I won't need the c-pap anymore and can start working on getting off my medicines and getting better.

Please remember to say a prayer for me.

Love, Drew and Family
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Friday, September 26, 2008

Day 16 One Down and One to Go

Today has been a good day. Three hours ago my nitric oxide was turned off and so far I am doing well. My mommy and daddy are very excited and so proud of me. Everyone is praying that I continue to do well without the nitric so that I can focus on getting off the ventilator. Hopefully tomorrow my mommy and daddy will be able to hold me. I enjoy getting to see them, but I miss having them hold me. Everyone is really happy about my progress and just keeping praying that it continues. I will have a new roommate today and his mommy and daddy seem like really nice people.

Please remember to say a prayer for me.

Love, Drew and Family
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Thursday, September 25, 2008

Day 15 The Slow Move Forward




Today has been another good day. They are working on weaning down my nitric oxide and hopefully soon I will be off. This helps the pressure in my lungs, so it will be great when I will not need it anymore. Then all I will have left is the ventilator and some medication, after that I should be on the road to recovery. My mommy and daddy are very happy that I am continuing to do so well. They are hoping that soon they will be able to hold me again.


Please remember to say a prayer for me.


Love, Drew and Family
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Wednesday, September 24, 2008

Day 14 Moving Forward

Today has been a good day. My ventilator has gone down a good amount today and they actually started to wean my nitric oxide tonight. They are pleased with how well I have done so far and my mommy and daddy are very proud of me. Hopefully I can continue to improve at this rate. My mommy and daddy continue to pray for the strength of my heart and lungs, that my lungs will do well as they wean the nitric oxide and ventilator, and that I will have a good strong recovery. Hopefully soon I will be able to go home and see all my friends and family. I miss my sissy's who are in Kalispell waiting for me to come home. My friend Max's mom, Shannon, came to see me today and got to see me with my eyes open. She was very happy for me and my mommy and daddy.

Please remember to say a pray for me.

Love, Drew and Family
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Day 14 I can see my Mommy and Daddy again


Today has been a good day for me so far. I am off my "Vec" which is a drug that keeps my body paralyzed. So now I can open my eyes again. My mommy and daddy are very happy to see my eyes again, it has been over a week since they last saw them. They are also starting to take my ventilator settings down and so far I am doing good. The strength of the Lord is keeping me strong. Hopefully soon I will be off my machines.
Please remember to say a prayer for me.
Love, Drew and Family
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Tuesday, September 23, 2008

Day 13 A Good Day

Today has been a good day. No more Ecmo and my numbers have looked good. My mommy and daddy are so very proud of me. They are thankful for the machine that kept me alive but are happy that I no longer need it. Now they pray that my heart and lungs continue to do well, that I continue to do well as they work on getting me off the other machines and some of the medicine, and that soon I will be recovered and back in Kalispell with my family. They are very thankful for all the wonderful people who have been praying so hard for me. These prayers and the strength of the Lord have kept me strong. I hope soon they will be able to hold me again.

Please remember to say a prayer for me.

Love, Drew and Family
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Day 13 Saying goodbye to a Friend




Today I had to say goodbye to my friend Ecmo. While it was my friend that has kept me alive and given me the time to rest it was time for me to take over. After being off for almost 24 hours the doctors decided I had been doing well enough to make it without Ecmo. This is a very big step for me and my mommy and daddy are so happy. While I am still deemed in critical condition on life support, this was a big milestone. Hopefully soon I get off the nitric oxide and the ventilator and then the recovery starts. I am so grateful for the strength the Lord has given me, and the many friends who have prayed for me along the way. I will still need prayers: for my lungs to stay strong and work good, for more strength when they go to get me off the other pieces of life support, and for a speedy recovery. I hope you enjoy the pictures of me without Ecmo.


Please remember to say a prayer for me.


Love, Drew and Family
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