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

Tuesday, September 30, 2008

Day 20 On The Floor




Wow, I finally made it to the floor after 20 days in the ICU. My mommy and daddy are so very excited. This means that the doctors feel I am out of the danger zone and no longer listed in "critical" condition. I would like to thank all the nice doctors and nurses who helped me during my stay. There were several who actually aided in saving my life on more than one occasion. My mommy and daddy are so grateful to have such an amazing team working round the clock to keep me here with them. I hope you enjoy the pictures of me in my new room. It is a nice big room and I get it all to myself. Thank you for all the thoughts and prayers, they have not only helped give me strength, but have also helped my mommy and daddy through these difficult times.
Please remember to say a prayer for me.

Love, Drew and Family

Day 20 Movin on Up

Today is a big day for me. The doctors have decided to move me to the floor. My mommy and daddy are so very excited. I have not used c-pap for over a day and I seem to be doing well. Today they did a small wean on my morphine to see how I do. Hopefully soon I will be able to see my sissy's again, they miss me very much. As soon as I am in my new room I will post some pic's for everyone.

Please remember to say a prayer for me.

Love, Drew and Family.

Monday, September 29, 2008

Day 19 More Snuggle Time




Today has been another good day. I am still making progress in the right direction. My c-pap hasn't been used since 8:35am and my numbers are looking good. Most of my medicines are now on orally and they are working my feeds up. The doctors are pleased with my progress which makes my mommy and daddy very happy.

I have been on my morphine and adavant for 19 days now, so it could take some time to wean me down without me going into withdrawls. So I am making steps in the right direction. Hopefully things will continue to move forward and I can see my sissy's again soon.

Please remember to say a prayer for me.

Love, Drew and Family

Day 19 The Work Begins




My doctors just came by and they are very pleased with my progress. The plan is to begin weaning some of my medication and then moving my medication to oral instead of IV drips. They also want to see how long I can go without c-pap, hoping that I will not need it. My mommy and daddy are so happy that the doctors feel I am doing so well. Every one's prayers and the strength of the Lord are helping me through. Hopefully everyone will continue to go well and that I will just get stronger and stronger.
Please remember to say a prayer for me.
Love, Drew and Family

Sunday, September 28, 2008

Day 18 Sleepy Boy

Today I have slept most of the day. Both my mommy and my daddy got to hold me today. It is such a great feeling to be held by my mommy and daddy and I think they enjoy it as much as I do. I am still having to use my c-pap machine to help with my breathing. They doing four hours on and then four hours off. This will help me build up my lung strength and get used to working on my own.

Please remember to say a prayer for me.

Love, Drew and Family

Day 18 What a face




Today has been another good day. I have been off the c-pap for about 3 hours and am doing well. Hopefully I won't need it anymore as that is a lot of stuff attached to my little face. My mommy and daddy took some photos of me with nothing on my face and just with my oxygen. Once I am done with c-pap then they will will start working on my medicines. This will take some time because I have been on the pain killers for so long. They have to go very slow or I will have withdrawls. I hope you like my pictures, it has been a long time since anyone has really got to see my little face.

Please remember to say a prayer for me.

Love, Drew and Family

Saturday, September 27, 2008

Day 17 Daddy's Turn




Today has been great! First my mommy got to hold me and then my daddy. It has been over two weeks and it felt so good to be held. Due to the breathing tube I do not have my voice back yet, but in a couple days they should be able to hear all my sounds. The doctors don't plan on doing much today. It sounds like tomorrow they will start weaning my medicines and hopefully in a few days I will be off the c-pap.

Thank you for all the prayers they are helping! The strength of the Lord is helping me through and hopefully soon I will be home in Kalispell with my sissy's.

Please remember to say a prayer for me.

Love, Drew and Family

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

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

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

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

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

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

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

Monday, September 22, 2008

Day 12 Let Go, Let God

Today has been good so far. I was off for 7 1/2 hours doing pretty well and then they changed the oxygenator again. Then they put me back on for an hour and now I am off again. The doctors want to see how I do through the night before making any decisions. When I say "off", what I mean is that there is no oxygen going through the blood, my lungs are having to provide the oxygen. My mommy and daddy are very proud of how well I have done today and hope that tonight I will do just as good. They are praying very hard along with many others. I know the Lord is giving me strength and hopefully tonight will go smooth and tomorrow I can say goodbye to my friend Ecmo.

Please remember to say a prayer for me.

Love, Drew and Family

Day 12 Strength in the Lord

Today they are trying my lungs again. I know the lord is with me, but I still need lots of prayers. Hopefully today will be the day. My mommy and daddy are praying hard for my lungs, my healing, and the wisdom of these great doctors. When I know more of how they think I am doing I will post again. Until then:

Please remember to say a prayer for me.

Love, Drew and Family

Sunday, September 21, 2008

Day 11 Taking my Time

I am still on Ecmo. They had me off for 7 hours today, but I wasn't ready to do it all on my own. My mommy and daddy are very sad. They were really hoping that I would come off today. When I am all better I will have to give them a big hug. They will probably try to take me off again tomorrow. Hopefully my lungs will be ready soon so that I can get off Ecmo and then focus on the Ventilator and Nitric Oxide. My mommy and daddy are saying lots of prayers for me. They hope it will be very soon. My levels have been fine since they turned it back on and hopefully they will all stay good.

Please remember to say a prayer for me.

Love, Drew and Family

Saturday, September 20, 2008

Day 10 So Far So Good


Today I had a good day. As you can see in my photo, they took my chest draining tubes out. They are going to put a small one in next to my right lung to drain some fluid there. Then if all goes well they will try to take me off Ecmo tomorrow. Mommy and daddy are saying lots of prayers that my lungs will be strong and won't need help anymore. I hope so to, then I can focus on getting off the ventilator. One step at a time though. The Lord is giving me strength and I know that soon I will be on the road to recovery and home to see my sisters.


Please remember to say a prayer for me.


Love, Drew and Family

Day 10 Waiting Until Tomorrow




The doctors decided that they want me to get rid of some more fluid still. So, they will not try to take me off Ecmo until tomorrow. Everyone was praying today would be the day, so now everyone will have to pray tomorrow will be the day. My mommy and daddy are praying very hard because they want me off of Ecmo. I have been stable and doing well, so pray that continues. Mommy and daddy might not be able to handle anymore scares. Today my sissy's went back to Montana. They need prayers for a safe trip home and prayers for comfort while mommy and daddy are away. I love my sissy's and cannot wait to be able to play with them again. The Lord is giving me strength and I know soon this will pass and I will be able to go home.


Please remember to say a prayer for me.


Love, Drew and Family

Friday, September 19, 2008

Day 9 A Good Day

Today was a good day. Everything ran smooth and they feel I am getting some of the fluid off of me. If all looks good in the morning they are going to try my lungs without the Ecmo machine giving my blood oxygen. My mommy and daddy are very excited and are saying lots of prayers that I will be able to come off of Ecmo. They are very happy with how good I have done so far today and are hoping for no more surprises. Hopefully tomorrow will go very well and I can get off this machine.

Please remember to say a prayer for me.

Love, Drew and Family

Day 9 More Resting

Last night went well and so far today has too. The doctors want to get more fluid off me before trying to take me off Echmo. So, they are hopefully to try me again tomorrow. Mommy and daddy are very happy that I am stable and have not given them any more scares. Thank you for all the prayers, I can feel the Lord giving me strength. I am so happy to have so many new friends and my mommy and daddy are amazed by all the people who are praying.
My friend Teagan got released yesterday and hopefully so did my friend Max. I am praying for them that they will do well and am so thankful to have met them.

Please remember to say a prayer for me.

Love, Drew and Family

Thursday, September 18, 2008

Day 8 My Scary Moment

Today went from good to bad rather quickly. The Doctors decided they wanted to rest my lungs for a couple more days, but would need to change out the oxidizer on the Echmo machine before turning me back on it. When they went to start the machine back into me my heart rate started dropping. It was into the 40's when the doctor started doing chest compressions to keep my heart beating. My mommy and daddy were so very scared. I have very good doctors though and they were able to get me through and stable again. They are not sure when they will try to take me off Echmo again. All of your prayers are helping and I know the Lord is with me. I hope my mommy and daddy can feel him as much as I can. They are very scared after what happened today. Hopefully things will remain stable so they can take me off of Echmo soon.

Please remember to say a prayer for me.

Love, Drew and Family

Wednesday, September 17, 2008

Day 8 So far So Good


Today has been very exciting for me and mommy and daddy. Today they turned off the oxygen going through my Echmo, meaning they are making my lungs do all the work. It has been 3 hours and 20 minutes and I am doing good. Hopefully today I will get to come off Echmo. I will still be on the ventilator and Nitrogen Oxide. This will be a big step in the right direction. My mommy and daddy are so very happy. The power of prayer and the work of the Lord is keeping me strong and hopefully soon will be bringing me back to my family. I think my sisters are missing me. Thank you for all your support!
Please remember to say a prayer for me.
Love, Drew and Family

Day 7 Still Resting

Today has been for resting. They are wanting me to get good and rested for when they try my lungs again. My mommy and daddy have been happy that I have been back to stable and comfortable. Hopefully soon my lungs will be ready and I can get off my Echmo machine. My parents are praying that soon I can begin the recovery process. The Lord is giving me strength and will walk with me through these tough times.

Please remember to say a prayer for me.

Love, Drew and Family

Day 7 Special Visitor

Today I had a very special visitor, Sam Middlebrook, who is my friend Max's dad. Sam is a pastor and he said a very special prayer for me with my mommy and daddy. Thank you Sam, I enjoyed the prayer and I believe in the healing power of the Lord. It made my mommy and daddy happy to be able to pray over me. Hopefully my lungs will be ready soon.

Please remember to say a prayer for me.

Love, Drew and Family

Day 7 Holding Steady

Hello again. Last night went well and they are happy thus far. They will do an echo to make sure my heart is still working good. My mommy and daddy are praying that my heart will stay strong so that we can focus on healing my lungs. Thank you to everyone who is praying for me. They are working and I can feel the power of the Lord with me. My mommy and daddy cannot believe all the people who are praying for me, it makes them cry to think about how much love and support I have from so many. Today there is not much planned beside looking at my heart so that I can rest up and be ready to try my lungs soon.

Please remember to say a prayer for me.

Love, Drew and Family

Tuesday, September 16, 2008

Day 6 Back from Surgery




I made it back and my mommy and daddy were so happy to see me. The doctors think my heart is doing well and everyone is praying that it will stay strong. Now it is time for my lungs to get better so I can be on the road to recovery. Thank you for all your kind thoughts and prayers they are truly helping. The Lord is keeping me and my family strong. I cannot wait to see them all again.


Please remember to pray for me.


Love, Drew and Family

Day 6 Off to Surgery

Wow, what a busy day I have had. Two field trips will all my equipment, it is amazing to watch as it takes 8 people working carefully together to move me around. I just entered the OR and it will take half an hour or so before surgery starts. Say prayers that all goes well and my heart works good on its own. Hopefully soon my lungs will be ready. My mommy and daddy have had two big days in a row and they need a hug. I wish I could give them one. Maybe soon I can.

Please remember to say a prayer for me.

Love, Drew and Family

Day 6 Getting Ready for Surgery




My trip to the Cath Lab went good. They think my heart is ready to work on it's own. My lungs are still not ready though. I will be having surgery to remove the two canuals from my chest that are connected to Echmo. They will then insert them into my neck. Essentially my heart will be pumping the blood and Echmo will be oxidizing it. My mommy and daddy are happy and are praying very hard that my heart does well. They are also hoping my lungs will be ready soon so I can start recovering.

Please remember to say a prayer for me.


Love, Drew and Family

Day 6 Off to the Cath Lab

I am now in the Cath Lab. My mommy and daddy are anxiously waiting. Hopefully things will go well and I will be able to get off my machine soon. Thank you for all the wonderful prayers. They are working. When I am out I will let everyone know how it went.
Please remember to say a prayer for me.

Love, Drew and Family

Day 6 Better Day Getting Ready for Cath Lab


Today has been much better. My bleeding has pretty much stopped and my blood levels are looking good. Mommy and daddy are so happy. The Lord has been with me and hopefully with his help I will be off my machine soon. In an hour or so I will be going to Cath Lab where they will inject dye into my blood stream and follow it around my heart to make sure there are no problems that need to be surgically corrected.

I need lots more prayers to help me in the Cath Lab and to get off my Echmo machine soon. Thank you to everyone praying for me. It makes my mommy and daddy happy to know there are so many wonderful people who care about me so much.

Please remember to say a prayer for me.

Love, Drew and Family

Monday, September 15, 2008

Day 5 Another Big Night

Tonight has gone better for me. My bleeding is going down and my levels are starting to look better. It is not perfect yet but hopefully by morning. They did find the start of a blood clot on one of my canuals, which they are hoping doesn't change. If so they will have to do some work to clean it up. I am praying that I will be off my machine before they have to do anything. If things continue to go well through the night they will take me to the cath lab tomorrow to check out my heart and lungs. Thank you to all my new friends. Your prayers and the power of the Lord have been helping me! My mommy and daddy are so happy to have you praying for me. They cannot believe how many wonderful friends Max and the Middlebrooks have.
Please remember to say a prayer for me.

Love, Drew and Family

Day 5 Rough Day

Today has been a very rough day for me and my mommy and daddy. I have been bleeding a lot today and the doctors are trying to figure out why. They changed my Echmo machine thinking maybe that was it. They are also giving me medicine in case it is an infection. Needless to say they did not try to get me off my machine today. My mommy and daddy and all my friends have been praying a lot. Hopefully tonight will go well and tomorrow will be a much better day. Please remember to say a prayer for me.

Love, Drew and Family

Day 5 Big Day

Hello, today will be my big day. Last night was a little bumpy and they think I might be getting an infection, so they are running some checks on me. This afternoon they are going to take me to the cath lab where they will begin to decrease the assistance my machine is giving me. Then they will inject some dye into my bloodstream and follow it around. This will tell them if there is something they have to correct surgically. My mommy and daddy are very anxious and are praying very hard. Hopefully we will know more this afternoon.

Please say a prayer for me.

Love, Drew and Family

Sunday, September 14, 2008

Day 4 Resting up for my Big Day

Tonight I need a lot of rest because tomorrow morning they are going to start slowly taking the machine away to see how my Heart and Lungs do. I need lots of prayers that I will be ready to do all the work on my own. My mommy and daddy are really excited and nervous. They want me to get better and get off my machine. It is time to rest I will talk to everyone tomorrow.
Please remember to say a prayer for me.

Love, Drew and Family.

Day 4 Message from My Friends


Today I received a very special email from some of my friends. I really appreciate the gesture and wanted to share it with my other friends.


Love, Drew and Family

Day 4 I can see you mommy and daddy




Today when my mommy and daddy came to see me I had my eyes open. They were so happy that they actually cried. I was happy to see them. I can hear them, but this is the first time I could see them. This made me so happy that I smiled. The doctors changed the plans again and they will try my heart and lungs tomorrow afternoon. They think all my levels look great and they are not going to do much today. Most of my excess fluid is gone so I am looking back to normal. I have attached some pictures of my eyes open. Hopefully you will be as happy as my mommy and daddy were. Please make sure to say a prayer for me.
Love, Drew and Family

Day 4 Room with a View


Today I got a new room and will have a roomate who is also on "Echmo". It is a great room with a very nice view. Last night I used the bathroom a lot which caused my blood pressure to drop down. The nurses told my mommy and daddy that I opened my eyes really big last night. They are very excited to see my eyes again. I am still comfortable and stable. The doctors decided not to try working my heart and lungs on Monday and that another day of rest would help. So pray that Tuesday my heart and lungs are ready to go so that I can see my family soon.
Love, Drew and Family

Saturday, September 13, 2008

Day 3 Just relaxing with mommy and daddy


The rest of today has gone better than this morning. I have been stable and comfortable. Today was the first day I got to suck on my pacifier, and this was with the help of my stuffed blue jay. I opened my eyes briefly for Mommy and Daddy. It made them very sad because they have not seen my eyes since Wednesday morning. I know they are so very worried. Hopefully I can get off the machine soon and see my family again. They plan on keeping my levels normal for the next day and will try to get me off my machine again Monday morning. Please say lots of prayers for my Heart and Lungs that they will be very rested and ready to start working on their own again.

Love, Drew and Family

Day 3 Not yet ready

Today they tried to see if my heart and lungs were ready to be without my Echmo machine. I was not ready yet. My heart was not as strong as it would need to be. They are going to let me rest for a couple more days and try again Monday morning. I am worrying my mommy and daddy to pieces. Please remember to say a prayer for me.

Love, Drew and Family

Friday, September 12, 2008

Day 2 Me and My friend Echmo

Yesterday was my big heart surgery. Currently I am in stable condition and they are keeping me comfortable. My lungs were not ready to work after my surgery so they had to put me on a machine called an Echmo. This machine does the work of my heart and lungs, it pumps the bad blood out of the body-oxidizes it-then sends it back. I am also on a ventilator to help my lungs. As you can see from my picture I am still a little swollen from Surgery, but hopefully that will not last long.




Right now we are waiting to give my lungs a trial run. Hopefully we will be able to do this tomorrow.

Thank you for visiting and please remember to say a prayer for me.

Love, Drew and Family