Glenn head

Those swollen Glenn heads. What I wouldn't do to go back in time three years to this very day when our lives were so full of hope I could burst. Three years ago today Hayden had his second of three life saving surgeries- the Glenn. In the heart world, we have a term for when our warriors go into one of these surgeries- we all pull together and root each other on in hopes that child will 'ROCK THE GLENN' (or Norwood or Fontan). Let it be known, Hayden rocked it harder and better than anyone. But no Glenn baby can escape that damn Glenn head- that swollen head and those terribly painful (so we are told) headaches. Looking at this photo now with his swollen little head I can't even take how much he looks just like my sleeping Hudson.
Hayden rocked the Glenn so well we were going home in 6 days total- and that included an extra procedure that had us staying an extra day. So 5 days of recovery for an open heart surgery. Still takes my breath away when I think about it. And the hope- that wonderful feeling of hope that was filling every inch of my body all the way from the bottoms of my feet to the tips of my fingers. This week we were told Hayden practically cured his own brain injury that he suffered while recovering from his Norwood. The neurologist wouldn't use those words of course- but he did say- verbatim- 'I no longer see the damage we saw at his last MRI in March.' And yes- I remember those exact words because once I figured out what he really was trying to tell us, I fell to my knees in the most joyful and hopeful tears I think exist. You never forget moments like that.
Hayden had his Glenn July 30th- and we went home August 4th. The week we were home we spent indoors- out of the hot sun- and letting him recover a little more before introducing him to the world. I am sure I've written about this before- maybe even last year- but we had so many plans already in place for our sweet warrior Hayden. In two weeks we were supposed to be going to my hometown and introducing him to all of our extended family and friends there. A month after that Hayden was going to have a huge celebration at the beach for his baptism- he'd already been baptized in the privacy of our pod space the morning of his Norwood- but his godparents weren't able to be there and neither was our family and friends so we had a beautiful plan for this celebration and I was loving finally planning something more than doctor appointments or pre-op visits for Hayden. Just 12 days after we went home from the Glenn, Hayden died- and instead of planning a celebration, I was planning a funeral. I know some people will think or even have the nerve to say 'but you were still celebrating his life'. No. Please don't say that. A funeral is no way to celebrate a five month olds life.

So this time of year is always incredibly and indescribably difficult for me. This week three years ago my heart, mind and body were so completely full of happiness, hope and peace for what our lives were headed for next. And now every year today starts a constant pain again of what was to come for Hayden and our family over the next two weeks- and then of course ultimately the rest of our lives.

I woke up this morning thinking of Hayden on this day three years ago and of course cried at the thought of him flying through this surgery and how I just couldn't wait to move forward in our lives together as a family. If only we would have made it to the Fontan so you could've rocked that too. Where would we be now...it always comes back to what would life be like now with you still in it...

NJ golf tournament a success!!!

Thank you to all who supported 2nd Annual Golf Tournament this past Friday at Preakness Valley Golf Course in Wayne, NJ!
We were thrilled to honor a very deserving family with two special heart warriors, Charlie and Brooklyn. Honored to have them at the luncheon afterwards as well!!
Thank you again to our dedicated neighbor, Allan Ford- this tournament would not exist without you! Thank you to the Auskings family for rounding up several golfers and sponsors- so incredible to see this family so well supported! Also, thanks to our hole sponsors, donors to our door prize raffle, and to the 87 golfers who came out and supported Hayden and the Auskings family!
The weather was perfect and the event could not have gone better! We are so blessed to have such great support and hope to see you all there again next year!!

healing of the heart- retreat for mamas of angels

A few weeks ago I came across a fellow angel mom's instagram account and became captivated by her posts about the 'Healing Retreat' she was planning for grieving mothers. I immediately googled it and when I found out the details, I was bummed to know it took place in mid June- I had just missed it. And to boot, it was in Canada- which may have been pushing it a bit with travel expenses. So I tried to forget about it because it wasn't likely I would ever be able to attend one that far away- even if it was an annual event. But I just couldn't get it out of my mind. How amazing would something like this be. So many times I feel so alone in my grief and the thought of being surrounded by moms just like me was just giving me a feeling of belonging that I can't even explain. I started searching for other retreats similar to that on the east coast and came up short. There were some in the US- but for whatever reason, none of them seemed to hit me like that first one did. But still, I couldn't stop thinking about how much I could use a retreat where everyone around me understood exactly how it felt to loose a child- and who knows, maybe we could even help each other heal a little by just being together supporting and relating to one another.

The next morning I woke up and just knew this was my next adventure. I knew Hayden had planted that seed and that this was going to be my next step in honoring him and helping other heart families. I quickly got to work and contacted a few other angel moms who I felt close with and who immediately came to mind when I first started looking into the possibility of planning this incredible event. After a few days of going back and forth on messenger and a lot of researching of places to host this retreat, 'Healing of the Heart' Retreat for Mamas of Angels was quickly born. A date was set for early October and wheels just literally feeling like burning rubber inside my head- idea after idea just kept coming. In my true fashion, I took this lead from Hayden and ran with it like I do anything else he leads me to.

SO just over a week ago our foundation put a deposit down on a Retreat center in Pennsylvania with the hopes that this is in fact the next adventure Hayden is leading me to do to continue to help heart families in his name and honor. It is for sure a huge leap of faith, but I truly believe this is the next path I am supposed to take. It is my hope that in less than three months I will be surrounded by 24 of the strongest mothers I will ever meet. I know we will connect on levels and in ways we connect with no one else on the planet. We will spend the weekend honoring and remembering our warriors and we will focus on ourselves- on our healing and on our broken hearts and hopefully we will all leave with a little less of a broken heart as we had when we walked in.

The retreat will be full of healing and pampering for our honored guests. We will start the weekend with a welcome bag full of ways to show these mama's some extra love and support and items to help them relax and heal. Items like pocket journals, heart jewelry, calming mist spray, and so much more. We will have several group discussions that will most likely be the core of our weekend- with other healing activities surrounding them. A candle lighting service will start each day, and we are looking into incorporating yoga, art therapy, special crafts, possibly reiki, a medium and a masseuse. We hope to conclude the retreat with a butterfly release.

If you would like to register for our 'Healing of the Heart' retreat, please fill out the registration form. Mailing instructions are listed on the form. Please email me if you have any questions! If you are traveling far and need to fly, please note that on your registration form. Payments can also be made to our PayPal using our email: haydensheart@yahoo.com
**Payment plans available upon request**

If you are a Hayden's Heart supporter, or simply want to GIVE to this event in some way, we would love your support. There are several ways you can help with this retreat- you can donate an item for our welcome bags, sponsor an item already chosen for the welcome bags, provide a full or partial scholarship for a grieving mama to attend, or help pay for one of the services or activities we are hosting for the weekend. If interested, please either email me (haydensheart@yahoo.com) for specific details about which portion you are interested in learning more about, or make a general donation through PayPal to haydensheart@yahoo.com- please put RETREAT in the comments section. There is also a link to donate on the main page of our website on the sidebar and on the events page.  www.haydensheart.org 

Thank you in advance for helping us host this very special and much needed event. I feel so strongly and passionately about this retreat and am so thankful for your support in helping make this a weekend full of hope and healing.

Please visit our 'home' for our Retreat weekend!!
The Country Place Retreat and Conference Center

Hayden passed away almost three years ago and every single day since has proven its own challenges in one way or another. It very often feels like a continuous nightmare that is just that- never ending. On the whole, most days are more happy than sad- but some days are just completely brutal and trying to survive the pain it almost impossible. One of those dates for me is August 16th- the day his life ended and part of me went right with him.
This day gives little reason to smile- but one thing that does bring a little brightness is knowing that cardiac kids are smiling on this very day in Philadelphia and also in New York City - because of Hayden and all of you.
Our Smile Sacs are filled with activities and fun for toddlers and young kids that are spending a nice summer day, week, month or even longer stuck indoors. Our hope is to fill 50 sacs this year- 25 for each pediatric cardiac unit for both hospitals. We would love your help in filling our sacs!
Please check out our amazon wish list or feel free to mail us anything similar to add to these- the wish list is just ideas of what can go in these packages.
Thank you again for your help in keeping Hayden's memory alive. We are beyond grateful and know this would not be possible without your continuous love and support!!!

CAR WASH!!!

Hayden's Heart Car Wash!!

Details on the event:

Date: Saturday August 22nd (rain date Sunday August 23rd)

Time: 9am-1pm

Place: VFW in North Arlington- 222 River Road, North Arlington NJ 

We will be honoring Jamian Rivera and his family at this event and are hoping to raise a lot of local awareness for Hayden's Heart!

Jamian is a heart warrior from Elmwood Park and was diagnosed with his Congenital Heart Defects at 8 weeks of age. Please read more about Jamian and his heart journey on our blog. 

Please help us spread the word about this event and bring your car down for a good washing!!

Meet Jamian

Our baby boy Jamian is 6 months old. We are blessed as all parents are with sleepless nights, and the usual trials and tribulations that newborns create.

What makes our family different is that Jamian was born with a VSD, (Ventricular Septal Defect), which is compounded by a PDA, (Patent Ductus Arteriosus).  My son has a hole in his little heart.  Its a common heart defect that is present at birth (congenital).  He was diagnosed just 8 weeks after he was born. The hole occurs in the wall that separates the heart's lower chambers (septum) and allows blood to pass from the left to the right side of the heart. The oxygen-rich blood then gets pumped back to the lungs instead of out of the body, causing the heart to work harder.

My poor little guy breathes heavily and so fast that when I place my hand softly on his chest, I can feel his too rapid heartbeat.  In his case, its a small hole, but bi-weekly cardiologist visits are important, so that he can be monitored with the hopes that the holes will close on their own.

You might be thinking...holes?  There are two?  The PDA is actually another unclosed hole in the aorta.  Before a baby is born, the fetus' blood does not need to go through the lungs to get oxygenated.  The ductus arteriosus is a hole that allows the blood to skip the circulation to the lungs.  However, when the baby is born, the blood must receive oxygen in the lungs and this hole is supposed to close. If the ductus arteriosus is still open, the blood may skip this necessary step of circulation. Thankfully, that hole is small and our doctors have every hope that this too will close on its own.

I wish that I could stop here.  There is one more problem with Jamian's heart.  He has a leaky valve. Leaking through the valve is also called valve regurgitation.  The valves consist of flaps that open to let blood flow in one direction as it moves through the chambers of the heart.  Then the valves close to keep blood from flowing backwards into the chamber it just left.  Except for the mitral valve, each valve typically has three flaps. The mitral valve has two flaps.  Any of the four valves can become leaky. This means that just after the heart squeezes and pumps blood forward, some blood will leak backward through the valve.

My son's fast breathing does not help with his eating. He is a "little" little guy, Born weighing just 5lbs 11oz. Even now, 6 months later, he is weighs only 12lbs.  This is not an average weight for babies this age.

On March 27, 2015, we rushed to the ER because for a few days, baby Jay had low grade fevers.  He was coughing, had a runny nose and was very congested. He was admitted and diagnosed with RSV.  Respiratory syncytial (sin-SISH-uhl) virus, is a respiratory virus that infects the lungs and breathing passages. Healthy people usually experience mild, cold-like symptoms and recover in a week or two. But RSV can be serious, especially for infants and older adults. In fact, RSV is the most common cause of bronchiolitis (inflammation of the small airways in the lung) and pneumonia in children younger than 1 year of age in the United States. In addition, RSV is being recognized more often as a significant cause of respiratory illness in older adults. After being in the hospital for over 2 weeks being clinically treated for it, we were able to go home on April 7th.

It did not end there. We only just returned home today, May 3, 2015 after spending another 4 days in the hospital because my son has developed pneumonia. He is on antibiotics and will be for the next 6 days.

He really needs to get his mitral valve repaired in order to avoid getting any more sick and getting any more infections.  There are 3 really great hospitals in NYC that can perform this surgery.  The one we chose is not in network because it's out of state.

There have been many medical bills and expenses thus far. Now that we are facing the possibility of having to pay for the surgery, we are humbly asking our friends, family and anyone who is able for support, donations and help.

**On May 27, 2015, Jamian's Mitral Valve was repaired,  they also closed the PDA,  Thry were unable to reach the VSD. He now has modermoderate leakage and he's currently on both Lasix and Enalapril to help stabilize that. We take him every two weeks for check up with his cardiologist.