Give Back and Light the Way

Ask any heart parent about the moment their child was diagnosed and they can tell you, in great detail, exactly how it happened, who was in the room, how they felt, what else happened that day. One of the most difficult aspects of the heart parent journey is that moment of diagnosis - the moment when your life changes forever. There is so much to process at that pivotal point and in the days and weeks to follow. Most newly diagnosed heart parents turn to the internet for answers and information about their child’s heart condition. Hypoplastic Left Heart Syndrome (HLHS) is, in particular, an extremely complex condition and much of the medical information available online is out-of-date and speaks of hopelessly outdated survival rates and lack of quality of life for singleventricle children. As a result, many newly diagnosed parents are left feeling hopeless and very much alone, forced to make critical decisions about their unborn child without a true understanding or complete picture of how well many of these children actually do.

I, along with nine fellow heart moms, would like to reshape the outlook for HLHS infants and children. Over the last few months, we formed Sisters by heart - an HLHS support group - to provide support and resources to newly diagnosed HLHS parents. It is a way for us to give back and light the way for another family following behind us on an otherwise very dark path. We want to give hope, to give love, to give support, and to give practically. We provide care packages for newly diagnosed parents which includes many items we’ve found useful to us along our journeys (pacifiers, mini-notebooks, specialized baby clothes that allow for tubes and wires, etc.), bio sheets on our children (there is nothing to give you hope quite like seeing an older child with your child’s same condition who is flourishing) and informational booklets and fliers providing current information on HLHS and options for newly diagnosed parents.

I know many of you who read my blog have been touched by Travis’ story and the stories of so many of his heart friends and are eager to find a way to help. Here is your chance.

Sisters by heart is comprised of 10 heart moms from various cities around the United States. We are seeking help with our initiative, either through donated items or financial assistance. (Please understand that we are not yet incorporated as a 501(c)(3) – we have not ruled this out, but it is not yet something we have pursued – so any financial contributions will not be tax-deductible at this point.) We hold Sisters by heart dear to our hearts, as we realize there is a significant need and lack of direct support to newly diagnosed HLHS parents. To help Sisters or to learn more about our mission, please visit our blog at www.heartsisters.blogspot.com or email sbhmoms@gmail.comwith any questions.

Please, join us in giving back and lighting the path for newly diagnosed heart parents.

From our hearts to yours,

Been a while....

I wanted to start blogging, but life gets in the way and by the time I get settled down, I am too tired to compose anything. So here's to 2011 and a new start for us. The kids go back to school today and I am ready to start this fresh. Might make things easier on my mind if I keep this up. So here goes.

Year in rewind... 2010 started off on the wrong foot. 1st 2 weekends of January I'm at CHOP. 2 days with Kaileigh and 3 with Gabby. Both in for UTIs. Everything was good, nice and quiet. We took a weekend vacation to Baltimore. Went to the Aquarium and stayed overnight. Was alot of fun. Will have to do more weekend trips as a family.

April started the preparations for Gabby's Fontan. She had her Cardiac cath and everything went well until Monday the 2nd when they told me that her surgery needs to be rescheduled until they can get a CT scan of her heart/lungs because during the cath they found AVM's http://en.wikipedia.org/wiki/Arteriovenous_malformation. And depending on what they found on CT is how they would do her fontan. Somehow we got this scheduled for Thursday of this week and surgery went on as planned for Friday. May 7th is a day I will never forget. I met some of the most amazing women on the planet: Kathy, Stacey, Joy, Christina, Lisa and Senalda. Gabby's surgery went well with no real complications. Her drainage tubes clogged with protein leaving her chest filled with fluid... They pumped her full of diuretics causing her potassium levels to drop. If this hadn't happened we would have had a shorter stay. 8 days after OHS is awesome. Her Sats on 5/20 were 98%. AWESOME!!!

Tristan had his drama program at Swedesboro-woolwich FunDay and he did great. My dad was in town so was a good time had by all. Baseball ended soon as did school. Tristan did great, so proud of him!! Summer went by quick, but not without its issues. Kaileigh got potty trained. We had a meeting at school about her eligibility for the preschool program and one of the main issues is she was not potty trained. She started the next day. Guess better late than never.

July and August,were fun. Gabby had an echo and cardiology appt. Everything looked good and her sats were 100%. AMAZING. But wow... 3 kids to the dr 3 times each. Kaileigh ended up with an ear infection on her birthday and poor Tristan had an ear infection and pneumonia.

September was the beginning of school for Tristan and Kaileigh. Tristan was eager to get into the routine, but Kaileigh was very hesitant. She didn't want me to leave after dropping her off. this moved on into October, but finally she got comfortable. By the end of November she started on the bus!!! Tristan played soccer this fall. Had tons of fun.

Tristan made honor roll for the 3rd grade. So proud of him. Such a bright kid.

Holidays were good. My parents came out the weekend before Christmas. So nice to see them. Miss them dearly. Can't wait until they are back together under the same roof in AZ. More reason for us to go visit and see Stacey, Zoe and family. Christmas was good for all of us... Santa thought we were all on the nice list. Kaileigh got the Tag system, Gabby a v-motion and Tristan A PS3 move. New years week was crazy, Tim found out he was getting moved to a different building on Jan 2nd. But other than that things are good.