BabyDrew

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. Thank you for visiting my site.

Here are a few statistics about my life from July 10, 2008 to May 6, 2009:

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
2 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

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

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

Tuesday, July 21, 2009

One boy and his Special Day

Hello everyone,

I am sorry it has been so long since I have posted. Things have been going very well. I have been off oxygen for about 2 months and off my feeding tube for about a month and a half. As my mommy and daddy say, I'm tubeless. Yay!

On July 10th we celebrated my first birthday. Me, my mommy, and my daddy all had a cold, so we didn't do much. We waited until the 18th and then we had my party. My mommy and daddy are so happy to celebrate my first year and all my accomplishments. They love me so much and are so very thankful for all the blessings God has given us.

Thank you to all my friends out there who continue to follow my story and pray for me. I will work on getting better at updating my blog on a more regular basis.

Please remember to say a prayer for me.

Love, Baby Drew and Family

Wednesday, May 13, 2009

Enjoying Home

Hello,

Sorry I haven't posted in a little while. Me and my mommy and daddy are enjoying being home and spending time together as a family. My chest is still a little sore and it hurts when I cough, sneeze, get upset, or roll over to far. It usually takes 6 weeks to heal, but hopefully the soreness will go away soon.

As far as long term I should not have to have any further surgeries for about 2-3 years. In a year they might want me to go back for a heart cauterization to ensure my pressure levels are good and my heart is working well. Other than that I will be see my cardiologist weekly for check up's and echocardiograms.

Thank you for all your love, prayers, and support. It truly means a lot to my family and I.

Please remember to say a prayer for me.

Love, Drew and Family

Wednesday, May 6, 2009

New Journey: Awaiting Discharge

Hello,

I had a great night which means I will be discharged today. At the moment we are not sure when as these things can take awhile. We will stay in Spokane tonight and then finish our trip home tomorrow. Thank you for your thoughts and prayers, they mean so much to me and my mommy and daddy. Hopefully we will have a good trip home and I will continue to do well.

I will make sure to keep blogging and posting photos so everyone can watch me grow. My mommy and daddy are excited that I get a few years off before my next surgery.

Please remember to say a prayer for me.

Love, Drew and Family

Tuesday, May 5, 2009

New Journey: Good News

Hello,

Today we received some good news. As long as I tolerate my feeds well I will be discharged tomorrow, yay. My mommy and daddy are so proud of how well I have done and so very thankful that this trip was much easier than the last. So we are all praying that my feeding goes well and that tomorrow will be the day.

Thank you so much for all your prayers, they really have made a difference. My mommy and daddy are very thankful for them as well.

Please remember to say a prayer for me.

Love, Drew and Family

Monday, May 4, 2009

New Journey: On the Floor

Hello,

Today i made it down to the floor. My mommy and daddy are so very proud of me and so very thankful that I am doing so well. The Doctors are working on getting my feeding routine back on track and seeing if they can wean off my oxygen. They think that I will be able to go home within the next couple of days. I really hope so, I miss my sisters so very much.

Please remember to say a prayer for me.

Love, Drew and Family