TBT- 'chop update, december 20, 2011'

This is the second 'throw back thursday' entry for the blog from December, 2011. The photo above is from one of the hundreds of hearts we received while waiting for Hayden's arrival. It said exactly what I had prayed for every night while we waited for Hayden's birth. 

Today we had our second appointment at CHOP. We started with our echocardiogram and then met with a team of doctors, coordinators and social workers. The end result from their findings today was that Hayden’s prognosis is the same- his heart did grow, but in proportion to what it has been growing, so it remains Hypoplastic. There is still a 50/50 chance that Hayden will need the 3-stage reconstructive surgery and there is a chance we may not know that until he is born. The uncertainty and unknown is a scary place to be, but we prefer the chance for hope over anything else. Hayden’s aortic arch is still severely narrow so he will still undergo open heart surgery within a few days of life. Because of that certainty, Jackson and I will definitely be relocating to the Philadelphia area sometime in the middle/end of February. We have been blessed to have a friend reach out and offer us to stay with her and her family for the weeks leading up to Hayden’s birth and are so incredibly grateful for this offer! Hayden will be born at CHOP and because of this, we were given a tour today of the SDU (Special Delivery Unit) as well as the CICU (Cardiac Intensive Care Unit). Both are incredible and we stand firm in knowing that no matter what happens in the months to come, Hayden is in the best hands possible! For today, we will take our ‘no news’ as good news….we are thankful his heart has not gotten smaller and that it still may have a chance to grow…Hayden is so incredibly special to us…he is our warrior and hero already!

We have another appointment on January 17th to do another echocardiogram as well as meet with our chosen surgeon to discuss our concerns and questions with him.

Thank you for your support, thoughts, prayers, calls, emails, hearts etc….people continuously tell me how strong I am- but only because of all of the support I receive from all of you….

2nd Annual Hayden's Heart 5K Run/Walk

GENERAL INFORMATION
Date: Saturday, March 8, 2014
Registration Time: 9am
Start Time: 11am
Location: Riverside County Park South (for directions use: 795 Riverside Ave, Lyndhurst NJ 07071)
Registration fee: $35 (for more information on how to raise money, see below)

Following the run/walk we will be celebrating Hayden's 2nd birthday with entertainment for the kids and family activities as well as ending the celebration by singing Happy Birthday to sweet Hayden.

Early Check In: On Thursday March 6th & Friday March 7th from 5-8pm, at The Sports Authority in the Clifton Commons, you can pick up your Bib, shirt, and runners bag.  This will save you time from having to check in the morning of the 5K.  You will also receive 15% off any purchase at The Sports Authority when checking in early.

REGISTER TO RUN:
The first 500 participants who have registered and paid will receive a Hayden's Heart 5K shirt and  reusable tote bag. Click on the button below to register.  After submission you have the option to pay via credit card.

VIRTUAL RUNNERS:
Can't make the run? You can still participate from wherever you are!
How to become a virtual runner:
1. Register for the race following the same steps above (click the option for virtual runner on registration form.)
2. The week of the run, complete a 5K course from your location and email us your time at haydensheart@yahoo.com.
3. Any virtual runners who are registered by February 15th will receive their participants bag (tshirt, tote, runners bib) by March 1st. Other virtual runners can not be guaranteed that they will receive their bag before the run date.

TODDLER TROT:
There is no registration fee for the toddler trot however tots still need to be registered under the registration page to help us prepare for the kids activities following the run.

FUNDRAISING:
To fundraise for your $35 registration fee, download the pledge form below and have friends, family. coworkers etc sponsor you! (or to get a pledge form, email haydensheart@yahoo.com and we will send you one)
And why stop at $35? Help Hayden's Heart beat their record from last year!!

VOLUNTEER:
If you would like to be a part of the event but are unable to participate in the actual run/walk, please email us at haydensheart@yahoo.com.

SPONSORED BY:

Moda Capelli Hair Salon

Sherwin Williams Paint

TBT- 'CHOP update- November 22, 2011'

I notice on facebook people post 'TBT' (throw back Thursday) photos of obviously themselves or someone else from the past. I am going to steal the idea and repost old blogs that did not carry over from when we switched blog sources. I will label each post 'TBT' and then the name and date of the blog I am reposting. This way, all of Hayden's blogs can be in one place again! Hope this isn't too confusing- here it goes!

Today we had our first visit with CHOP. We started out with a 2-hour ultrasound followed by a 1.5 hour echocardiogram. At that point, the radiologist was able to rule out any extra developmental problems in Hayden-meaning his heart issue is the only focus. We then met with a cardio specialist and a coordinator of the hospital. The cardio specialist saw the drawn pictures of Hayden's heart from the NJ specialist and agreed that he gave us a good visual of his heart to date. He also agreed that Hayden has aortic arch issues that also need to be dealt with within 1-2 days of life. HOWEVER- the specialist we saw in NJ last Friday basically told us that Hayden's heart was done growing, it would no longer grow and would most likely only become smaller as time in utero progressed. Today, the specialist told us he is more optimistic than that and thinks there may still be a chance that Hayden's left ventricle could possibly show growth in the coming weeks in utero. If that happens, and Hayden's left ventricle not only grows, but grows enough to perform and work as a separate ventricle, Hayden WILL NOT need complete heart reconstruction (meaning he will not need the three surgeries- the Norwood, Glenn and Fontan). He will, no matter what, need open heart surgery within 1-2 days of life to repair the aortic arch. If Hayden's heart stays the size it is today, or gets any smaller, he will need the 3-step reconstruction we have been preparing ourselves for. The first surgery will be when they also correct his aortic arch.

This news leaves us both confused- as the specialist was telling us this, tears of joy poured out of me=- knowing and believing that prayer is most definitely working for Hayden!!! The other side of me was angry that the specialist we saw last Friday had given us a window of time to decide the fate of our unborn baby. I vocalized this to the doctors at CHOP and said the NJ spec. said it was one of the worst cases he had ever seen- why did he not give us any hope? They basically explained it to me like this- to him, it very well may have been one of the worst cases of Hypoplastic he has ever seen, but here at CHOP- this is what they do and they do it every single day. They also stated that this is definitely a serious case right now- but it does have what they think some possible potential to improve. They also assured me that the specialist we saw in NJ is a great doctor and that he, like any other doctor, was just doing his job by giving us all of our options. Unfortunately, the doctors today could not tell us what they personally thought would or might happen with Hayden's heart in the coming weeks- it really is unknown. For Rob and I, we both immediately cried tears of joy- and then were reminded by the doctors that this is so unpredictable. We left there wondering what to feel- as we both want to celebrate this strand of hope- we want to grab it and run with it. However, we both are so completely afraid that if we do, we will get our hopes up way too high and if his heart does not grow, we will be once again devastated by the news like we were a week ago Friday. Even as I write this I find myself getting too hopeful...I guess that’s only natural.

 So, what I am asking of all of you is to PLEASE have all the hope and faith that you possibly can that Hayden's heart will grow over the next 17 weeks- grow enough that he will not need the three-step reconstruction and both ventricles can function separately.

We want to again thank each and every one of you for your prayers for our baby Hayden- they are most definitely being heard! And thank you for your ongoing support as we continue on this unknown journey we have been dealt. Having such incredible support is most definitely what has gotten me through the last 12 days!!!

What next? We have our second appointment scheduled with CHOP on December 20th where they will do another echocardiogram and we will meet with the specialists again to see what changes, if any, have occurred in Hayden's heart. I am sure I will not be alone when I say I will be literally holding my breathe that day waiting for the results!!! I promise to keep everyone informed as we find out more information, but for now- KEEP PRAYING!!!!

Happy Holidays from Hayden's Heart!

What a year 2013 has been for Hayden's Heart. It is still amazing to me what all we have done in one year- and as I have said several times before, it would not have been possible without the support of all of you. The reason we are able to financially help heart families, send care packages to grieving families, send holiday cheer packages to hospital bound families- it is all because of you and your support. 

When I picture Hayden in my mind while thinking of all that everyone has done for our foundation and for our family I see him as an old soul, smiling with such pride for what we have all created in his honor and memory. Every event might not be a huge success, but the reality is that we are helping families who need it- in big ways and small.  Thank you again for helping to make this all a success and we hope in the coming year and years you will continue to help where you can- every little bit helps!!

Wishing you all a happy holiday! I look forward to another year working together to help raise awareness for CHD and help keep Hayden's memory alive! 

thankful~

Like anyone who celebrates thanksgiving, I too reflect on what I am thankful for. Last year I tried to reflect on things I was thankful for, and while there were plenty, I couldn't get past the fact that Hayden was gone- and shouldn't be- and so therefore in my mind there was no one to thank, and nothing to be thankful for. I've come a long way in a year I think- and even though I am still weaving in and out of the stages of grief and have not yet felt any part of the acceptance stage, I do believe that I have grown and my grief has changed. I will always miss Hayden- he will always be the one thing missing from my every day. Holidays will always have a sad part to them because he will never be here with our family. Watching Jackson and his (soon to be born) baby brother grow up will always be a blessing, but there will be a part of my insides that sheds a tear knowing Hayden will never do the things that they will here on earth. 

All of that being said, Hayden did more on this earth than any other 5 month old I know- he taught us all the value of importance in life and I remind myself of that every day. So this year and moving forward I will try very hard to focus on, and be thankful for the time I had with sweet Hayden and continue to celebrate the amazing things he did achieve in his short time here. 

So this year I am thankful for... (and in no particular order)

*my one of a kind 4 and a half year old (because at his age, the 'half' is huge!) who takes better care of me than I do myself. 

*this blessing of a baby growing in my belly- and for the new found connection I feel between this baby and Hayden, making me feel an extreme connection to him as well. He is truly, without a doubt, a combo gift from God and Hayden. 

*my hard working and patient husband who takes such great care of our family, even though I don't tell him nearly enough. 

*the continued support of my exceptional friends and family of which I have always been thankful for and know how blessed I am in that area. 

*and for you, Hayden- for the extreme love we shared in the incredibly short time we were given together. And for continuing to show me that you really are always with me- just like I tell Jackson every day that even though Hayden is gone and we are sad, he will always be with us in our hearts. 

2nd Annual Holiday happy hour!!

In just about two weeks, we will be hosting our 2nd Annual Happy Hour! We have chosen to honor Samantha Denti- a very brave CHD survivor who is currently recovering from a heart transplant.  You can read more about her journey in a previous post!

The event is Saturday, November 30th at the Sticky Elbow in Williamsport, PA from 7-9pm. It promises to be a night full of great food, music, and of course- prizes!! We are so thrilled to have so many local sponsors participating this year as well as national 'Big Name' donors too!

So, come out and support Samantha and Hayden's Heart- and win some prizes for yourself, or someone on your Christmas list!

Please contact haydensheart@yahoo.com for more information on the event or how you can donate an item.

Samantha Denti- our November heart warrior

Samantha's Story~

Samantha is a 28 year old diagnosed with Dilated Genetic Cardiomyopathy at the age of 24. Although looking back now we can say she had her disease issues in her high school years. When she was diagnosed in June 2009 it was confirmed she did in fact carry the gene that took her fathers life at the early age of 39. Samantha’s world turned upside down, many tests, and numerous cardiologists later, it showed her injection fraction was a 15, which is dangerously low. A healthy heart should be between 50 and 70. In December of 2009 she received a pacemaker and defibulator.

Samantha tried to carry on to live a ‘normal’ life but her health was a constant issue. She suffered many side effects from medicines and was continuously diagnosed with ‘other’ medical issues or ‘unknowns’.  Hindsight is a beautiful thing because looking back now we clearly see all the while it was her heart. Since February of 2013 she declined rapidly. Was constantly in and out of different hospitals. Finally and miraculously landing her in Newark Beth Israel permanently since August 2013.

Samantha had numerous procedures during her time here and also withstood 4 major surgeries in a 3 day period. She intrigued her amazing group of doctors and certainly put her doctors education and strength to the test. As bad as it got, Samantha and her doctors continued to try. Her family, friends, wonderful doctors, and power of prayer gave Sami the will to live.

She received a beautiful heart on September 28^th, 2013. We thank God everyday for the miracle we witnessed. We thank God for the donor and pray for their family. We hope they feel our love and appreciation for the life they gave to Samantha.

Happy 1st Birthday Hayden's Heart INC!!

When Hayden tragically and very unexpectedly died last August, I found myself lost in so many ways. Loosing a child in the first place is the world's ultimate tragedy- I truly believe that nothing can bring the heart, mind and body more pain than this. Then add in that my child was sick and required my care more than a healthy 5 month old, and lost doesn't even begin to describe what I was feeling after Hayden was gone.

My days revolved around his medical needs as well as trying my best to make sure he had what he could of a normal infancy. Here is a peek back into what one of our weeks would have been like:

Monday - the pediatrician in the morning, and Physical Therapy in the afternoon.

Tuesday - trip to the cardiologist - 45 minutes away, so an all morning and afternoon affair.

Wednesday - trip to his chiropractor, a 30 minute drive - but well worth it for Hayden and his development.

Thursdays - either feeding therapy or a visit to his Developmental Team, another 30 minute drive- but again, doing everything we could to make sure Hayden was given the best chance at a normal, long life.

Friday - a down day this week - I tried to keep jackson home with me on Mondays and Fridays so this week in particular, we had Jackson at home with us as well as his babysitter, who we needed there because we never knew what the day would bring for sweet Hayden, it could very well be a day full of vomit and stressed breathing where I would be on the phone with CHOP and face-timing trying to figure out what to do for him and if we would need to be visiting the ER or transported back to CHOP.

I am telling you all of this so you can see what a week might be like for us- and in no way am I complaining - I'd do every single part of it again, live life in the hospital - if he could just be here with us today. In between all of the appointments we had medicine that needed administered every couple of hours throughout the day and of course, feeding time through his NG tube - which would often be followed up by a reflux like you've never seen. But as you know, somehow all of this didn't effect the smile Hayden had and how happy he always was - love carried him through everything.

When he died, a large part of me died too- and I will never get that back. Like most grieving parents, I walked around my house in circles, literally, trying to figure out what to do with myself. Not only had I lost my child, but I felt like I lost my purpose in life. I thought my purpose was to be Hayden's 'nurse' and caregiver and when he died, I truly didn't know what to do. I couldn't bare the thought of going back to work yet - for months I couldn't function for more than an hour or two without having a breakdown. I certainly couldn't do that in front of 25- 4th graders. I still had Jackson, but as parents know, the older they get, the less they need you to care for them. He was becoming (mostly because he had to) pretty self sufficient. And he was in school three mornings a week. So - after about 6 weeks of literally crawling out of my own skin, and out of sheer desperation to find a way to pass the time, we decided my new purpose in life was to keep Hayden's memory alive, to help other families battling with CHD, and to start Hayden's Heart INC.

Rob and I have always been the type of people who, when putting their mind to something, it gets done. We have a vision of something and run with it with all we have. Hayden's Heart INC was of course, no exception. Rob had the paperwork completed and our first event was planned within a few weeks of founding Hayden's Heart. Our mission was clear and came very easy to us- we wanted to help raise awareness for Congenital HEart Defects as well as financially helping a heart family in need all while spreading Hayden's story around and keeping his memory alive. Our first fundraiser we made over $4,000. We were amazed at how many people wanted to help us with our mission and make it successful. Hayden's 1st birthday we also coupled with a 5K- and raised over $12,000. We've had a total of 6 fundraisers this year that we have hosted and each one we honored a different heart family. Some more successful than others, but all of them adding to our goal of raising awareness and funds for CHD families. We've had around 20 other fundraisers hosted by supporters from all over the country for Hayden's Heart. It truly is something spectacular to receive an email or message from someone saying they would like to host their own fundraiser and help us first hand in our mission.

I never dreamed that in one year we would have raised as much awareness and as much money as we have. I plan in the next couple of weeks to get breakdowns and very specific numbers for everyone to see just what their help and support has done for Hayden's Heart. It is simply unbelievable and I want to thank every one of you who have supported us in this mission and making it as successful as it is in just one year. Thank you to all of you who have helped out at one of our events, participated in an event, hosted your own event, sent in donations, purchased clothes, travelers, and other Hayden's Heart goods, sent in items for auctions, shared our events on your pages, and told Hayden's story - it is truly because of all of you that our dream of Hayden's Heart has become a crazy successful reality and we are forever grateful.

So, take some time this month and celebrate Hayden, his foundation, and his sweet little heart. And cheers to you for being a factor in helping our vision and our dream become what it is today. I cannot wait to see what's to come in the year and years ahead!!