Hayden's Heart Monthly Beat- MAY

Hayden’s Heart Monthly Beat

MAY 

SUMMER GOLF OUTINGS!

New Jersey

Join us Friday June 9th for our ‘Heart Strong’ outing where we will honor heart warrior Shea Oldenburger!

Registration is limited- please visit our website. Sponsorships are also available on our website. Looking forward to a beautiful and successful day!

Pennsylvania 

 

On Friday, July 28, we are hosting our 5th annual golf tournament to honor Jude Solderich from Allentown, PA.

If you would like information on how to sponsor this event, or register as a golfer, please visit our website or email Rebecca.perrotto@haydensheart.org

Hayden's House of Healing - Update

Since launching our project for ‘Hayden’s House of Healing’, we have had great progress in some areas, and setbacks in others. If you haven’t visited our website for Hayden’s House, please check it out- we would love to hear your feedback! www.haydenshouse.org

Ady and Mandy (a fellow Hayden’s House board member) visited Faith’s Lodge in April. Faith’s Lodge is a house for bereaved families located in Wisconsin- doing essentially what we hope to achieve. Their CEO spent a day with us- touring the facility followed by a three-hour lunch where she gave us so much insight to this type of project. And while the visit was both emotional and overwhelming, we left with fresh ideas and are working towards a plan of attack that we look forward to sharing with you all soon! STAY TUNED!!

We are in the fundraising stages for the house - if you or anyone you know is interested in donating or hosting their own fundraiser to benefit this project, please email ady.dorsett@haydensheart.org for more information!

Save the Date! 

 

Please SAVE THE DATE for our Heart to Heart Gala on Saturday November 18th at Herman and Luther’s in Montoursville, Pennsylvania. This formal event promises to be a night full of dancing, dining, drinks and entertainment- as well as auction items and raffles to helping our fundraising efforts. This event is honoring heart warrior Harper Renshaw, of Conshohocken, Pa.

Please visit our website under the events tab for more information! If you wish to receive a formal invitation to this event, please email: tatum.heiser@haydensheart.org

Contact us:

CEO- Ady Dorsett
Ady.dorsett@haydensheart.org
www.haydensheart.org
www.haydenshouse.org

118 Bathurst Ave | North Arlington | New Jersey | 07031

Heart Strong NJ Golf Outing- meet the warrior!

Heart Strong Golf Outing!

On Friday, June 9th 2017, Hayden’s Heart + Madison Strong will join forces to host our 4th Annual Golf Outing at Preakness Valley Golf Course, appropriately titled ‘Heart Strong’.

Together we will honor Shea Oldenburger, a toddler from Washington Township, NJ, who is fighting a multitude of Congenital Heart Defects. (Read his story below)

At the event, we will have prizes for the 1st, 2nd and 3rd place foursomes, as well as door prizes, raffles and contests throughout the event.

Breakfast, drinks and a luncheon following the tournament is included in the price.

Please see flyer or website for all event details and to register for this event! - space is limited! If you would like to sponsor this event, please email ady.dorsett@haydensheart.org 

Meet Shea

My husband and I were so excited to find out we were having our first baby. We went for my 20 week ultrasound and after lots of moving and readjusting, the ultrasound technician went to get the doctor. After a 30 minute wait, the doctor returned and informed us that our baby had a complex series of heart defects. We rushed to a pediatric cardiologist who confirmed the diagnosis.

The next day we went to Morgan Stanley Children’s Hospital at Columbia NYP where we began our heart journey. Shea Noah was born on February 27, 2016 with hypoplastic right ventricle and tricuspid valve, aortic atresia, VSD, and interrupted IVC. He had his first open heart surgery when he was four days old and did so well in recovery that he came home after only 16 days in the NICU.

Shea was monitored very closely for the next 5 weeks, until he displayed lower oxygen levels and was eating less. Due to the quick intervention at Columbia NYP, it was determined that his aortic arch repair was clogged with scar tissue, reducing his aorta to the size of a pin hole and barely allowing blood to pass. He had a heart catheterization the day after his 2-month birthday, where the doctor inflated a balloon in his aorta to stretch it out and allow more blood to pass. This fix worked for 3 more months.

On Shea’s 5-month birthday he had his second open heart surgery. Although he recovered quickly, this surgery came with many complications. Shea’s vocal cord needed to be moved during surgery because of it’s proximity to the heart, resulting in vocal cord paralysis. He developed a blood clot from the central IV line that was inserted to administer medications. He got a Strep blood infection, and a Staph wound infection. All of these complications resolved themselves, and now Shea is completely recovered from this surgery!

Shea needs one more open heart surgery when he is around 4 years old. He is now thriving due to the incredible care from Morgan Stanley Children’s Hospital at Columbia NYP. He loves to swing his baseball bat and play with his puppy. This journey hasn’t been easy, but we wouldn’t trade it for anything in the world.

 

Grief and Faith...

Before I got pregnant with Hayden I lived a pretty standard life in faith- I was raised a Christian, went to church, believed in prayer and that God was in charge of all things in this life. I believed and lived by the quote ‘Everything happens for a reason’ and believed God was behind all reasons.

The day Hayden was diagnosed with Hypo-plastic Left Heart Syndrome, my faith changed. I dived in deeper- begged and pleaded for prayers from anyone who was willing around the world. I set up a public Facebook page called ‘Prayer Page for Baby Hayden’ and invited all to join and share in helping us pray for a miracle. The day he died he had over 22,000 followers- all with intentions of praying for him and his fight for life.

I truly believed through Hayden’s life that prayer was going to be what saved him and what had previously been what saved him through all of his near-death experiences. The day he died, I felt confused, cheated, betrayed. 22,000 + people were praying for him- praying for him to come back to us- for his brain function to return- for a second, even third chance at life. I couldn’t figure out why if all of these people were praying to God for a miracle, why didn’t it happen? Why did he die? What did I do that was so wrong in my life to deserve this? Was I being punished? Why didn’t we get our miracle?  I’ve never pretended to be perfect- I’ve made plenty of mistakes- but thought overall I was a pretty decent person- caring, loving, with good intentions. Did I personally not pray enough? Not go to church enough? I was shattered- and I was ANGRY with God. From the day he died, I refused to pray. Refused. What was the point? He wasn’t hearing me anyways.

I went through about three years of feeling this way, but through it all knew that the ill feelings I was harboring towards God were also hindering me in my path towards healing. I will never forget our first retreat- the fall of 2015- three years into my grief. We spoke about our biggest relationship struggles and mine was with God, as were several other mothers. I said I wondered where God was when Hayden died- why he wasn’t with me- why he didn’t save him and give us our miracle. I remember one mother spoke some time after I did and I will never forget what she said. She said she knew God was with her. That when her daughter died, she knew he wept with her. He was just as sad as she was that her daughter had died. And although parts of that still do not make sense to me, it hit me. It hit me hard. I thought about that comment for weeks- months. I couldn’t get it out of my head. Maybe God wasn’t punishing me. Maybe he WAS sad Hayden had died. Maybe he was there all along. That New Years my resolution was to try to go to church again. Try to pray a little again- and maybe let God in a little. I felt like if this mother who also lost her child was able to remain trusting in God and have faith, maybe I could too.

It has been just over a year since I had that conversation at the first retreat and I am so thankful to say that so much of my outlook has changed. I am still so confused and may never understand why God didn’t give us our miracle and the act of prayer is often still confusing but what I do know is that God loves me- God didn’t punish me. He doesn’t work like that. He did take Hayden for reasons I don’t know that I will ever understand, but he also gave me so much and continues to- all I have to do is allow myself an opportunity to see it and accept it. He gave me 5 months and 4 days with that sweet boy- the same boy doctors were urging me to terminate at 21 weeks gestation when he was diagnosed. He gave Hayden to ME- he gave me the honor of being his mommy- to love on him and for him to love me. He gave me a sunshine baby before Hayden to make me get out of bed every day after Hayden was gone. He gave me two of the happiest, most loving rainbows on the planet and he helped me and continues to help me build a legacy for my son that I could not be more proud of.

So, I no longer believe everything happens for a reason.  But I do believe that people come into our lives for a reason. I do believe that good can come from heartache. I do believe that God has blessed me, and continues to, in several areas of my life. Some days it takes great effort, but I choose to focus on the good that He brings to my life and the good that Hayden has brought to my life- both while he was here and now that he is gone.

This past August marked four years without Hayden and while I feel I still have a long way to go in restoring my faith in God, I’ve also come a long way and I will continue to work on it because if nothing else, I know that God holds the key to my eternity with my son.

For those of you struggling with your faith since your loss, hang in there. Don’t give up.  It took time for me to look at my life from a different perspective. It took time for me to realize how blessed I was, even though I had experienced the greatest heartache ever known. Maybe your blessings come in different forms- maybe you haven’t even realized what they are yet- but they are there and when the time is right, I promise you they will become crystal clear.

Hayden's Heart Monthly Beat- APRIL

Hayden's Heart Monthly Beat

APRIL

 

Hayden's Heart 5th Annual 5K Re-cap

What a great turnout for our 5th annual 5K Birthday Bash for Hayden- despite the freezing cold! We were humbled by yet again a packed park full of sponsors, vendors, food, kid activities, runners, walkers, strollers, high school teams, family, friends, heart warriors, heart mamas- all there supporting our mission- Hayden's legacy.

Because of the cold, we had less people register the day of the event than years prior, but regardless, there were still over 500 participants, over 50 kids in the Fun Run, and around 650 people braving the cold, celebrating a very special boy.

In addition to celebrating Hayden's 5th birthday, we also honored heart warrior sisters- 4 year old Aylin and 8 month old Isabella Conil- of North Bergen, New Jersey- both with a CHD called Tetralogy of Fallot. We were honored to have their parents Julio and Yenni participating and expressing their gratitude for the support given and we hope the proceeds from the event will assist them in their journey!

Thank you again to all who played a part in making this event amazing!!

And…

SAVE THE DATE for our 6th annual- March 24, 2018!!

Pictures from PhotoSesh

Video from Real Arch Videography

            

SAVE THE DATE!!! 

  

Our New Jersey and Pennsylvania Golf Outings for this summer are posted on the website! Several sponsorships are available and registration for golfers has also begun. Both tournaments have limited space for participants and sponsors.

New Jersey

On June 9th, the New Jersey tournament is teaming up with ‘Madison Strong’ - coined after a brave baby girl who was born with HRHS- Hypo-plastic Right Heart Syndrome- which is even more rare than HLHS. Madison Cohen was placed on the transplant list at just one month old but tragically passed away at two months old while waiting for her new heart. Madison’s parents, Matt and Stephanie Cohen, reside in Hoboken New Jersey. We are honored to team up with this incredible family and honor Hayden and Madison, as well as heart warrior Shea Oldenburger from Washington Township, NJ. Please check out our website and email ady.dorsett@haydensheart.org if you have any questions!

Pennsylvania

On Friday, July 28, we are hosting our 5th annual Golf Tournament at White Deer Golf Course to honor Jude Solderich from Allentown, PA. Jude was born in July 2016 with a heart defect and was placed on the transplant list at only three and a half months old. It is with your support and donations that help us help families like Jude.

If you would like information on how to sponsor this event, or register as a golfer, please visit our website www.haydensheart.org, or email Rebecca.perrotto@haydensheart.org