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, October 28, 2008

What a Smile

I hope you like my smile. My family is sure fond of it. Everyone is so very happy to see me smiling again. Being home has been good, a few challenges, but good. I like to keep my mommy and daddy very busy. Last night I couldn't keep my oxygen canuals in my nose. So, my mommy and daddy had to keep getting up and repositioning my head so my oxygen would stay in.
Today my mommy and daddy read a sad posting from my friend Mia's mom, Mimi. It is so sad, Mia really needs a heart. We have been praying for her and her family. We pray for strength, for guidance, for courage, for continued faith, and for healing. If you have a moment to stop by her blog and give her family support it would mean a lot to both them and to me. Her blog is:
Please remember to say a prayer for me.
Love, Drew and Family

Friday, October 24, 2008

Enjoying Home

I hope you like the pictures of me. I have just been enjoying myself at home. The last few nights I have been a little rough, but it seems to be getting better. I am so very blessed to have so many great friends who have been thinking about me, praying for me, and helping my family. My mommy and daddy are very happy to have me home, but they are also a little nervous. It takes a lot of care to keep me safe and healthy. I have to have a special shot every month so I don't get RSV. So far I am doing well and hopefully will just keep getting better.

Please remember to say a prayer for me.

Love, Drew and Family

Wednesday, October 22, 2008

Home Sweet Home

Sorry it has been a while since I have updated everyone. I arrived home last Saturday about 6pm. It has been an adjustment as I am used to dim lighting, little to no noise, and lullabies all day long. I am enjoying being home with my family and am getting more playful by the day.

There is still a lot of care at as my medication schedule is round the clock: 12-4-8-10-start over. I am also on oxygen and my oxygen saturations have to be monitored periodically throughout the day and night.

So far everyday has been a step forward and with the strength of the Lord it will continue that way.

I will keep my blog updated at least once a week and will add some pictures this afternoon. Thank you for all your thoughts and prayers. I look forward to hearing from you.

Please remember to say a prayer for me.

Love, Drew and Family

Thursday, October 16, 2008

Day 36 Big Day

Sorry I was unable to Blog yesterday. My mommy and daddy have been busy getting things ready. Because tomorrow morning I get discharged. It feels so very good to say that and my mommy and daddy are so proud of me. I have been doing very well and the doctors felt it was time for me to be home. We are going to be renting a car to drive to Coeur d' Alene where my new friend Wendell has fixed my mommy and daddy's car. On the way here we broke down and haven't had a car since. Thank you for all the many prayers and blessings. I cannot believe how many new friends I have made. Even when I am home I will continue to keep everyone updated.

Please remember to say a prayer for me.

Love, Drew and Family

Tuesday, October 14, 2008

Day 34 Another Day Closer

My X-Rays showed unchanged this morning...Hooray....This means that so far I am doing ok on the Oral lasixs. Hopefully this keeps going over the next several days. Today has been a stable day and it looks like they are done weaning my oxygen and will have to have it when I go home. We have come to a level that my parents and the doctors are not comfortable decreasing. So it sounds that they will keep the oxygen as is. I am still weaning off my Morphine and Adavant. So, when I get to go home there will be a lot going on. First I will be on oxygen and a medication for my pulmonary hypertension. My mommy and daddy will have to monitor my oxygen saturation's daily to make sure my lungs are working properly. I will then be on a medicine for reflux, aspirin to keep my shunt from clotting, and will still be weaning my morphine and adavant. So hopefully we will be headed home soon. My mommy and daddy are so very excited to see me doing so well. All the doctors and nurses are happy to and feel that I am on the right track.
Please remember to say a prayer for me.
Love, Drew and Family

Monday, October 13, 2008

Day 33 Making Progress

Today has been another good day for me. The doctors have done a couple of different things today. First they changed my lasix from IV to oral. This is the medicine that helps me to diuris fluid, or pee off excess fluid. Changing to oral is a large step, because it is an important step on the path toward home. They will keep a close eye on my saturation's and my fluid levels to make sure my body is handling this change well. The next big change was going from continuous feeds to bolus feeds. This means that I will be fed every four hours instead of non-stop. If these go well that means I might get to go home soon. My mommy and daddy are so proud of me. They are very excited, but know that there are still some hurdles to jump through. The doctors are still weaning down my oxygen to see if I will need it when I go home, and if so how much. So far I have done well. Everyone is excited about how well my scars are healing. Now I just need a good story to tell all my friends, maybe a shark attack. Hopefully things will continue to go well so we can go home to Kalispell.

Please remember to say a prayer for me.

Love, Drew and Family

Sunday, October 12, 2008

Day 32 My First Mobile

I have my first mobile and it is really neat. I like to watch it spin around and around while it plays music. Today has been a good day as they continue to wean down my oxygen and my medication. The X-Ray did not look as good as the doctors hoped, so my mommy and daddy are going to talk with them more about it tomorrow. This weekend has went really well and my mommy and daddy are very proud of me. They say as the medicine wears off that I am acting more like my normal self. To them this is a great sight and really reassuring. Hopefully things are going well enough that the doctors might have an idea when I could go home. I hope it is soon, I really miss my house and my sissy's. Mommy and Daddy continue to pray for my healing and my safe trip home.

Please remember to say a prayer for me.

Love, Drew and Family

Saturday, October 11, 2008

Day 31 Unicorn

Today has been a good day for me. My Saturation's have been steady and that is with an oxygen wean. Yes, they are going to try to wean my oxygen to see if I will need it at home. Tomorrow I will have an X-Ray to see how the fluid on my right lung is looking. Hopefully better so I won't have to have a chest tube. Today the doctors told my mommy and daddy that they are very proud of me. This made my mommy and daddy so happy. Hopefully if I keep doing so good we will get to go home soon. The only downside to today was that my IV blew out and they had to put a new one on the top of my head. They call this a unicorn, probably because that is what I look like. I also got a mobile for my hospital bed today and really enjoy watching it.
Please remember to say a prayer for me.
Love, Drew and Family

Friday, October 10, 2008

Day 30 How many Pokes can a Boy Get

To answer the above question, it would be 6. That is how many pokes it took to get my new IV in. So today I had 3 X-Rays, a good nose suctioning, 6 IV pokes, and a sponge bath. Other than that the doctors are pleased with how I have been doing and they gave my mommy and daddy some rough guidelines that I will have to meet in order to go home. First and foremost will be to keep my oxygen saturation's stable. Second will be to get rid of the fluid on my right lung. Third, to do well on my feeds. Finally will be to have a good schedule for my medication weans. When they feel that I have all these under control it will be time for the big trip home. We are all hoping this will be sooner than later. My sissy's miss me and my mommy and daddy very much. It makes me sad to know they are sad. Hopefully soon I can give them hugs.

Please remember to say a prayer for me.

Love, Drew and Family

Thursday, October 9, 2008

Day 29 Another Day in the Hospital

Today has been a good day. My "Sat's" Have done well today and the doctors seem very pleased. It is always nice to make a step in the right direction, at least that is what my mommy and daddy say. I am very excited for tomorrow because I get to eat from a bottle. It has been over a month and I can't wait, neither can mommy and daddy. This is another step in the right direction. Hopefully soon I will be ready to go home to see my sisters and the rest of my family.

Since there is not much about me I want to tell you about some of the people I have met here. First was Teagan, it was her mommy that showed us how to do the blog. She is home now after having the bi-directional Glenn procedure, this is the next surgery I will have. The last I heard she is doing well, I keep praying for her. Next I met Max. His mommy and daddy are Shannon and Sam, they are very wonderful people and have helped my mommy and daddy very much. Max was here because he got sick and his kidneys weren't working right. He is home now and his mommy and daddy still talk to my mommy and daddy. They are going to come see us soon. They have become good friends of our family. I still pray for Max. Then we met two wonderful Ladies, Baby Mia and her mom Mimi. I pray for them very often. They have had a very long and difficult journey as Mia needs a new heart. She is two days older than me and has been waiting all this time. I pray that soon she will get a heart and that God will comfort her family and be with them through this difficult time. I then met Tyler from Missoula. He hurt his head very bad. His mommy and daddy told my mommy and daddy that he is still going to be here for a long time. I pray for them, that Tyler will keep getting better and be able to go home soon. Ethan was my old roommate in the ICU and now he is down the hall from me. His mommy and daddy talk to my mommy and daddy all the time, they have become good friends. Tomorrow Ethan gets to go home and they are all very excited. I pray for Ethan that all goes well at home.

My mommy and daddy and I have met many, many wonderful families, doctors, nurses, and surgeons that we pray for all the time. I hope you will join me in praying for all the people here and all those helping these people.

Please remember to say a prayer for me.

Love, Drew and Family

Wednesday, October 8, 2008

Day 28 Holding Steady

Today has been a pretty uneventful day, which is just how my mommy and daddy like it. The biggest events today were some X-Rays and an IV. I have some fluid next to my right lung which the doctors feel could be making it more difficult to breath. So they have been trying to determine the best solution. Today the decision was to put in a new IV and give me some medicine through it and see what happens. If this doesn't seem to work they will put a drain tube in the right side of my chest. My mommy and daddy are hoping that they do not have to put a tube in. I guess only time will tell. Today has been a good day for me and so far my mommy and daddy are so proud of me. Hopefully my days will just keep getting better and better so I will be able to go home and be with my family.
Please remember to say a prayer for me.
Love, Drew and Family

Tuesday, October 7, 2008

Day 27 Goodbye Stitches

Today I got all my stitches but one taken out. I put a photo on here so everyone can see my cool scar. All in all I had 14 stitches from the incision down my chest, 5 stitches from tubes in my chest, and one in my neck from Ecmo. That is a lot of stitches for a little guy like me. This doesn't even include the stitches in my heart, arteries, and my sternum. Today they weaned my morphine and adavant, but other than that they have just been monitoring me. I have done pretty well, no big scares. Hopefully this continues so that they can continue weaning my medication and then work on bottle feeding. I haven't gotten to be bottle fed since the 9th of September and I am ready to start again. Hopefully in the next couple of days I can have my bottle again. I am really hopeful that my lungs continue to improve so that I can get on the path toward going home. My mommy and daddy are praying very hard for my lungs and that they will start to get better.

Please remember to say a prayer for me.

Love, Drew and Family

Monday, October 6, 2008

Day 26 Keeping Everyone on Their Toes

Today has been a fairly good day after a rough night and morning. Once again I didn't let my parents get any sleep, so they have been very tired today. The morning started out rough and my oxygen saturation's went down and weren't coming back up. Several nurses and doctors were in my room trying to figure out what was going on with me and what the best thing for me was. They thought about another move to the ICU, but decided to hold off to see how I do. So far so good. A couple of minor desaturations, but I have recovered quickly. The doctors feel it is due to my pulmonary hypertension and that it will just take time for it to level out. Hopefully sooner than later. I wish I could give my mommy and daddy a great big hug and tell them everything will be OK. They get so scared and they worry so much about me. Hopefully soon I will level out and they won't have to worry so much. Everyone hopes tonight will go smooth and that I won't have any problems.

Please remember to say a prayer for me.

Love, Drew and Family

Sunday, October 5, 2008

Day 25 A Fickle Boy

Today has been a pretty good day. I like to keep the nurses on their toes to. It is a good thing my mommy and daddy know me well and know how fickle I am. It seems that the "Sat Probe", checks oxygen saturation levels, only works well on my hands. This morning one of the nurses put it on my foot and it looked like my "sats", oxygen saturation levels, were low. When they moved it back to my hand they looked very good. This makes it difficult because my mommy and daddy have to try to explain things to the nurses and get them to believe them. Hopefully they will listen to my mommy and daddy, because I am doing pretty good. I can not wait to go home to be with all my family. My sisters miss me and mommy and daddy very much. Sometimes they cry and it makes us very sad. They will not let me go home until I am doing well on a feeding routine, doing well on a medicine weaning schedule, and am keep all my numbers good. Hopefully this will be soon.

Please remember to say a prayer for me.

Love, Drew and family

Saturday, October 4, 2008

Day 24 Mommy and Daddys Little Pill

Last night I was a little rough on mommy and daddy. I kept them up almost all night. If it wasn't one thing it was another. First I couldn't get comfortable and would fuss a lot. Then my Oxygen Saturation levels were bouncing around. My daddy finally got to bed at 5 am and mommy napped for about an hour. I have been working them pretty hard. Finally they took away my wedge and I did much better. It seems that since they got rid of the wedge I have done well and am doing well right now. Today they are weaning my morphine and adavant along with increasing my feeds. This will likely continue daily as long as I do not have any problems. I know the healing power of the Lord is with me.
Please remember to say a prayer for me.
Love, Drew and Family

Friday, October 3, 2008

Day 23 Back to The Floor

We have arrived back on the floor. This time I am not in a room of my own and we now have a roommate. Today my levels have looked good and the doctors felt that I was not in need of the ICU. The plan for tonight is rather simple and the only changes they plan on making is upping my feeds. Tomorrow they will reassess and hopefully start working on my medication weans. Hopefully I will have no more episodes and have a smooth recovery. Right now my mommy and daddy are praying for my lungs and that my pulmonary hypertension starts to lower.
Please remember to say a prayer for me.
Love, Drew and Family

Day 23 Another Move

Today has been good so far and the doctors have been pleased with everything they see. They feel that I am ready to go back to the floor. My mommy and daddy are so proud of me, but they are also anxious about going back to the floor. In the ICU it is one on one care, while the floor is one on four or five or six, so it is a bit of a transition. Then add this in with my episode and they are filled with excitement and nervousness. This is a step in the right direction and hopefully I will do well and not need to come back up to the ICU. Hopefully this time everything will go smooth and I can get back on the path toward going home. My sissy's really miss me and mommy and daddy. It has been hard on them and I can't wait to give them a hug. I will give everyone an update when I am officially on the floor.

Please remember to say a prayer for me.

Love, Drew and Family

Thursday, October 2, 2008

Day 22 Back to the ICU

I have had a rough day. This morning my oxygen saturation started dropping and they could not figure out why or how to get them back up. The decision was made that I need to be in the ICU for closer monitoring and in case more needs to be done. My mommy and daddy are very scared and worried for me. Hopefully soon I will be ready to go back onto the floor. At the moment my levels look OK, which is at least a little reassuring.

My Aunt Shawna and her boyfriend Seth are here to visit me and unfortunately they will not be able to hold me. Max's mom Shannon came to see me today as well. While she was looking at me Sam was talking to my daddy about the word of the Lord and faith in Jesus. I just wish I felt a little better to see all my special visitors.

Please remember to say a prayer for me.

Love, Drew and Family

Wednesday, October 1, 2008

Day 21 The Wedge

Today has been an interesting day. First I had a swallow test. This is a test to determine if I can swallow without asphyxiating into my lungs. I was not able to pass with normal formula, so I will have to have a thickener added when I bottle feed. They also determined that I have reflux and therefore have created a "wedge" for me. I will have to remain in an almost upright position at all times, therefore I will sleep on the wedge, relax on the wedge, and play on the wedge. You can see a little of the wedge in my photos. Hopefully in about 4 months I won't need the wedge anymore. Tomorrow they will work on feeding me out of a bottle with the thickened formula.
Please remember to say a prayer for me.
Love, Drew and Family