BabyDrew: Now comes Da Da

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, April 4, 2009

Now comes Da Da

Now my daddy is happy. I now say da da! Of course my mommy reminds him that the ma ma came first.

My next trip to Seattle is coming very quickly. We will leave here on the 22nd of this month and if all my tests go well my next surgery will be the 28th. My mommy and daddy are very nervous. They cannot believe how quickly this came. Everyone has been saying a lot of prayers for me and that really means a lot to both me and my family. As our trip nears I will be blogging more to keep everyone updated of the next part to our journey.

Please remember to say a pray for me.

Love, Drew and Family

3 comments:

Susie Maxwell said...: What a nice picture of Drew and his Daddy! I can't believe its time to head back either, it always comes too soon! I wanted to let you guys know that I'll be in Seattle April 22nd-23rd with Teagan for an appointment so maybe we'll see you guys! I know you're schedule is probably pretty busy, but let me know if you have time for a quick visit! (we'll be at the hospital!) my email: kicks5@hotmail.com or 509-392-1557
-Susie; April 14, 2009 at 12:17 PM
grandma great said...: What a precious precious little
boy. He is so handsome! We will
be praying and believing for the
very best on your trip back to
Seattle. Sometimes the hardest
things a person can do are doing
only what is necessary.
God Bless All of You and especially
Baby Drew.

Love forever, Grandma Great; April 19, 2009 at 12:44 PM
Mimi said...: Oh goodness... I was at the hospital today-and saw Susie after our appointment. I would have loved to seen you guys!! I can't it is already time for his surgery... that is crazy!!

I will be watching for updates!; April 22, 2009 at 11:25 PM