Timothy's Summery


Hello All,

Timothy, was born with CHDs. Timothy was born December 31, 2010. Prior to his birth we had no idea he had a “Broken Heart” Timothy was born In Hillsboro Oregon. When he was born he turned so blue, his Sats (oxygen saturations) where down in the 20’s and no one knew why. A few hours after birth they started up. Staying in the 50’s for awhile and then 80’s..
He was transported to OHSU (Doernbecher) the next day. That is where we found out he was born with Double outlet right ventricle, Ventricular septal defect, Bicuspid aortic valve, Pulmonary hypertension… When leaving the hospital on day 5 his sats where in upper 80’s lower 90’s. Upon leaving we were told his surgery would be between 4-6 months of age.

Between 1month and 7 ½ months old. Timothy’s life was filled with Dr visits, hospital stays, Timothy was seen for reflux disease, dietician consult, poor growth, NG Tube placement, ( at 2 months old) G-Tube placement, heart failer after being placed on oxygen, balloon dilation/atrial septostomy, feeding intolerance, echocardiograms demonstrated a muscle bundle, cardiac MRIs, he had an average of 8 medications at a time, Failure to thrive, worsening heart failure, RSV Positive, High flow nasal cannula, respitory distress, rash all over body, poor weight gain, cardiac catheterization, sats dropping to 50-60’s, Tissue bundle (in his heart), We was told Timothy would most likely need all the surgery’s Dr Langley would do on one patient over the course of Timothy’s life. This would be 6 surgery’s.

On our pre op appointment Dr Kelly and Dr Langley had informed us that a Dr (Forgot his name) from Canada had come in for Fridays meeting and they talked about Timothy’s heart. The Dr asked them if they can push off Timothy’s surgery for another so his team can build some 3D models of Timothy’s Heart.

Aug 10, 2011 is now surgery Day
Mike, Christopher & I walked Timothy down the hall to hand him to the nurses. I kissed him and told him how much we love him. .. That morning Dr Kelly showed me the models. It was so cool. They made 5 of them to the size of his heart at 6 weeks old. WOW was it big for being 6 weeks old.
Surgery went wonderful they found a Atrial septal defect. They cut the Tissue bundle, and put in 2 patches.
The Surgeon said no bigger surgery’s are planed. Timothy’s tissue bundle that they had cut could be a main artery to his heart. The Dr’s said it could take minutes, weeks, hours, months, years, before his heart decides to shut down. This would mean Timothy may need a pacemaker in the future.

Timothy will have another Echo April 2014 and find out if/when he will need to have another heart surgery. He now has subpulmonary stenosis. His pulmonary wall is thickening. Subpulmonary stenosis: A narrowing in the artery that allows blood to flow from the right heart ventricle to the lungs in order to be oxygenated. Severity of symptoms is determined by the degree of narrowing.

For more CHD information go to The Children Heart Foundation. Or visit my sons page Facebook:CHD Fighter Team TimothyTimothyoylear.blogspot.com

Today and everyday we are beyond thankful for your boys. The tears are something that always fall when I get to thinking of all the things we have been through in Timothy’s life and all the things the future can bring. I spend most of my time trying to help spread awareness for CHD. You can help spread awareness by telling people about CHD, pregnant woman, people who are thinking of starting or adding to their family. You do not have to do anything wrong in your pregnancy or eat/ take something wrong while nursing. CHD just happens.

February 7-14 is Congenital Heart Defect Awareness week.
But we should be spreading the awareness all year long.
Raising national awareness about CHD is so important. It will provide hope for many families of CHD fighters and comfort to those whose loved ones have lost their battles. It will inform the general public about symptoms of CHDs and could save lives. It will affirm the need for researchers and medical professionals to continue their work to improve the outcome for CHD patients.

Congenital Heart Defects (CHD) affects approximately 1.8 Million Families in the United States. CHDs are the most common birth defect and the leading cause of birth-defect related deaths WORLDWIDE. Nearly twice as many children die from CHDs as from all childhood cancers combined, yet research for cancer receives five times the funding. There are currently 35 distinct CHDs recognized. There is no known cause for CHDs and there is NO CURE. Only treatment, such as medicines, numerous surgeries and heart transplants. Each year an estimated 1 in 100 babies are born in the United States with a congenital heart defect, 1in 10 of those are born with a fatal defect. 50% of those babies will need at lease 1 life saving operation. Many families do not even know about CHDs until it happens to someone they love. The earlier CHD is detected and treated, the more likely it is that the affected child will survive and have fewer long term health complications. Early detection is important.

PULSE OXIMETRY. Is a non-invasive method allowing the monitoring of the saturation of a patients oxygen. A sensor is placed on your fingertip(Children/Adults) and across a food (infant).

Funding and research for CHDs is very little. We need more funding so we can treat, prevent, save lives and cure CHD.
Most of the U.S. Funding goes to Childhood cancers, and Breast Cancer.

Here are a few ways you can help bring awareness to CHD
Share these links. These are Team Timothy links. One is his blog where you can give to a donation to Childrens Heart Foundation, Join Team Timothy Heart Walk in Portland Oregon. Wear Red For CHD on February 14, Share his youtube video, and add him on facebook.

1 comment:

  1. That was a beautiful story. And OMG Dr. Langley is Harlans doctor!!

    ReplyDelete