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!