swing for cohen!

29 March 2014

Hayden's Heart Pennsylvania Golf Tournament
'Swing For Cohen Allen'

To learn more about Cohen and his fight against CHD, please visit his facebook page- Team Cohen

Event Details:
Date: Friday, July 18, 2014
Place: Whitedeer Golf Course, Montgomery PA
Registration: 8am
Shotgun tee time: 9am

Luncheon to follow after tournament at the Sticky Elbow
631 Washington Blvd. Williamsport PA

Price per golfer:
$85 individual
$340 foursome

Register online HERE
Once we receive your registration, we will email you with payment options.

Download paper registration HERE
Mailing instructions are on the form.

For information on this tournament and ways to sponsor click HERE.

For sponsorship levels and opportunities click HERE. 

To sponsor this tournament, please download the form HERE.


28 March 2014

Yesterday I made my second trip back to Philadelphia since Hayden died. Both trips were for a very special boy named Weston, and his remarkable family.  The first trip I made was in December of 2012. We had just started Hayden's Heart and our first mission was to help the Keeton family. Our first fundraiser was dedicated to Weston and his family but since it was around the holidays, we also wanted to provide Weston and his 6 incredible siblings with presents on Christmas day. So Julie, Weston's mom, provided me with a wish list for all 7 kids and I shared that with all of you.  And you all came through- our upstairs bedroom was filled with gifts for the Keeton kids!! Once all the gifts were wrapped, my friend and I made the trip to Philadelphia to give Julie the gifts for her children.
I of course didn't know it at the time, but that would be the last time I ever saw Weston. He was out of the hospital and looked AMAZING. It was the first time I had seen his face without a breathing aparatus covering it- or one hanging from his neck. He looked so good. I just couldn't believe it. It was an emotional trip for me to make- but seeing how good he looked- I just couldn't stop smiling.

Yesterday I went back to Philadelphia. This time for I went for Weston's funeral. I was so scared. The entire ride I sat in the back with Hudson and cried off and on. Just the thought of why we were going was too much for me to handle. I kept thinking about Sunday afternoon when my phone rang. When I saw who was calling- I knew why she was calling. When I answered I asked 'why are you calling me' but I knew why. Weston passed away. Weston went to heaven. Weston was with Hayden. Weston's family had just lost their son and brother. It was too much for me to take. I dropped the phone to my side and my emotions just took over. I cried and wailed so loudly that Jackson came running into the kitchen hanging onto my leg asking me 'mommy what happened? mommy whats wrong?' I couldn't stop. I couldn't pull it together. But Jackson persisted. So I had to pull it together. I got down on his level- pulled my shit together much as I had done 19 months ago- and told him Weston went to heaven. His reaction was very different this time- he knew what that meant. Tears welled in his eyes and his lip turned down. He said 'I'm sad mommy, I miss Weston'- he only met Weston once but prayed for him daily- and he also knows more than any other child what it means when someone goes to heaven. That they aren't coming back- and that it's sad. So he hugged me for a bit but then went back to playing at which time I went upstairs and continued my what I call ugly cry- a cry I've gotten quite used to having and prefer to have it alone.

The entire ride to Philadelphia and all week I've been thinking about Julie, Adam and the kids. How they are just starting this journey of grief and how the beginning for me was so so ugly. And just hoping it isn't the same start for them. Julie had written to me that she felt at peace that he was no longer in pain and I was hopeful she was still feeling that way.

When we pulled up to the church I was prepared as much as I could be to see Julie-Adam- the kids- fellow heart moms and of course Weston's caregivers from CHOP- who were also Hayden's.
Hugging Julie is all I've wanted to do since I got that phone call. I remember people hugging me and me trying to let go but they wouldn't- and thats kinda what I did with Julie. I just wanted to keep hugging her hoping that what I was trying to say but couldn't form into words was being sent to her through my hug. All I could say was 'sorry- I'm so sorry'. Because what do you say? Nothing...

The service was beautiful, sad, happy, special- what it should be for someone as amazing as Weston. I laughed and cried several times at the stories people closest to him shared and was inspired by the words the chaplain spoke about holding onto anger and pain- and how bad that is for the soul. So as I left yesterday I was prepared to cry the entire way home like I did on the way there, but I didn't- I again left Philadelphia with an unexpected smile on my face- a smile given to me by a 7 year old hero who fought the greatest fight I've ever known and even though he died, he didn't loose his fight- he won. He won because he touched and changed thousands of lives in his 7 years here on this earth- and even still changing them after he is gone.

tbt- 3.21.12 'downs and ups'

18 March 2014

Hayden's fight continues to be a roller coaster...
The echocardiogram from Saturday did not show a need to expand the hole in his heart. The doctors were content with just allowing him to take it easy on his new breathing tube for the next 24 hours and hopefully the problem would adjust itself. Sunday lent itself to a pretty low-key day just allowing Hayden to recover slowly. Later in the afternoon, Hayden's numbers and stats went low and he stopped breathing. At first we thought it was just a fluke, but it happened three more times in he next few hours. The doctors started trying to figure out what it could be and when they mentioned 'seizures', both of our hearts dropped. They explained that seizures are more common in babies with HLHS and other heart defects for a couple reasons, one being that they undergo bypass and that could always be a factor. They set up the EEG to get some reads. About a half hour after they set the machine up, he had another 'episode' and the neurologist was able to detect right away that it was in fact, seizures. They immediately started him on a medicine to control the seizures and as of now, he has been seizure free for over 48 hours. It is unknown how long he will have to remain on meds to control these seizures- it could be weeks, months, or years. We are just happy to find out the problem and have it controlled. 
Yesterday and today have been pretty calm days and the doctors have been weaning him off different meds, wires and other steps towards his recovery. His EEG monitors were taken off his head yesterday morning and they started feeds through a feeding tube! After lunch, his RA lines were removed (these are the lines that were connected to his heart, and also the lines that were preventing me from holding him). After 130 hours (5 1/2 days) I was reunited with Hayden in my arms. The emotions that spread through my body will never be describable in words so I won't even try. All I can say is that holding Hayden before surgery was so incredible- but holding him after he had overcome open-heart surgery, periods of not breathing, seizures, and so much more- it truly is a feeling I will never be able to relay properly. I am in such awe and amazement of him and what he has gone through- he truly is a fighter- and as of now, he is winning his fight. 
Today we are expecting more steps towards his recovery- hopefully his umbilical lines will be removed and his feeds will continue to increase. Once his feeds hit a certain level and his body is accepting them, we will be able to try bottle feeds! Hayden currently has a normal high- flow breathing cannula and we hope within a few days they will feel comfortable removing that as well. One day at a time! 
As always, we are grateful for your love and support- I am completely unsure how we would have gotten through all of this without you. 

tbt- 3.17.12- 'fighting through'

13 March 2014

The last five days have been such a roller coaster- full of miracles, stress, pain, love, unknowns, smiles, tears, and so much more. Around 5:30 Wednesday evening, Hayden's cardiologist confirmed that he has HLHS (Hypo plastic Left Heart Syndrome) and would need the 3-stage reconstruction of his heart starting with the Norwood procedure, the first of his three open-heart surgeries. About 20 minutes later we were told that his surgery would take place the following morning at 6:30 am. Processing all of that information in such a short time frame was near impossible but we powered up and made the necessary preparations as quickly as we could to make sure family was here and that Hayden was baptized beforehand. 
The remainder of our evening was spent holding and kissing Hayden. We soaked up every ounce possible for the next 12 hours. We wanted to make sure when he left us the next morning that he was 100% calm and full of peace and love. The next morning started what will hopefully be the hardest day of my life. After we had Hayden baptized in my arms, they took him back to start the preparations. One of the hardest parts of that day was giving him one last kiss and watching him get further and further away from us. Once we were settled, our nurse took us to meet our chosen surgeon, Dr. Spray. Dr. Spray is the chief of surgery and we are told he is among the best surgeons in the world for these operations. Meeting him was breathtaking and surreal. I wanted to say so many things to him, but I just didn't have the words. I thought several times throughout the night before what I wanted to say and how I would express my un-express-able gratitude. What do you say to the man who will be saving your child's life? So I think I just stared at him and nodded- mesmerized by his abilities and by what he would soon be doing for my son and our family. Later that afternoon we joked with another cardiologist about how to ever express our thanks- fruit basket?  Dr. Spray later came in that afternoon to check on him and again we were at a loss for words. I just continued to gaze at him and at the wonder of what he did for my son. 
So, after we met Dr. Spray, we were told to wait in the family room and our nurse would give us hourly updates on his progress. The next few hours were most difficult to think about anything other than the unknowns of what Hayden's surgical outcome would be. So many different scenarios entered my mind and I found myself thinking horrible things. Finally I was able to distract myself a bit and was comforted by the nurse's updates on his progress. When he came to tell us that surgery was over and they were just finishing up, I felt myself breathe just a little bit easier. We met with Dr. Spray and he told us all went well. He was happy with the outcome and expected his recovery to go rather well. He would check in on him in the coming days. 
It felt like forever until we could come see him again- and we were scared about how he would look. The sight was not pleasant, but we knew it was all in good recovery and it is what Hayden needed to save his life. Later that afternoon, he continued to recover and fight hard. He appeared to be doing really well and the doctors were confident he would get his breathing tube and chest tube removed the next day. And they were right! The next morning I was surprised to see a text from Rob of Hayden free of nose tubes! And soon after his chest tube was removed. The rest of the day was pretty mellow- we just stayed bed-side waiting for him to wake up. He was pretty swollen, but did crack his eyes a bit in the later part of the afternoon but he also started struggling to catch his breathe and as the evening went on, he seemed to be in a lot of pain. Any parent knows that watching your child in pain and not being able to do anything to help them is in itself heartbreaking and devastating. I could literally feel my insides tightening and tensing up. They finally gave him morphine and assumed the struggle to breathe was based on his level of pain. 
At around 3am his breathing got worse and they decided to put him on a stronger nose pump to assist him. When I got back to his room at 5am, they said his gases were low and if they did not improve, they would have to put the breathing tube back in and it would remain there for at least 2-3 days or longer. A few hours later, the cardiologist came and did another echocardiogram and explained to us that they thought maybe the hole in Hayden's heart needed to be a little wider from the surgery and that they may need to do a procedure to balloon it or make it wider. If it wasn't that, they thought maybe his breathing tube had been pulled too early and if that was the case, they may just sedate him more and give him some more time to breathe on his own. We are currently awaiting the results from his echo and hopefully we can go forward from here and continue to improve. 
One of the many things I have learned throughout this process is that every baby’s journey is different and that none are free of set-backs. When the surgeons and nurses tell you that the first 72 hours are most critical and unknown, they really do mean it. Day by day, hour by hour. 
Again I thank you for all of your support- I don't know how to properly express my gratitude for all of the love we are receiving and in so many different forms. Please keep it all coming...I am just dying for the moment they tell me I can hold him again. Prayers have been answered in other forms this past week, and I believe they are working. Please keep praying. 
(This picture  is from right after he was baptized and before he went into surgery.)

welcome hudson to our family!

12 March 2014

Happy 2nd Birthday sweet Hayden. Today I dedicate this blog to the gift you sent our family, your baby brother Hudson. I miss you more each day and would give it all to be with you one more day, to watch you run around here like the rambunctious toddler you should be, to get just a quick glimpse into what you would look like today- just how orange your hair would be now, and to see you in action as a big brother- as I know with all my heart you'd be such a great big brother. If only I could have one more moment with you here- now- today. If only...

Just over a month ago we welcomed our rainbow, Hudson Astro!! Astro was his nickname given to him by his big brother Jackson, who had been so anxiously awaiting his little brother since the day back in July that we told him we were having another baby. We all remember that day so well- I was about 8 weeks pregnant and for the few weeks prior, Jackson had really been struggling without Hayden. He was constantly crying asking why he can't come back, asking me when we could have another baby, and saying he just wished he could see Hayden again. So we were on our way to see some fireworks and he again started crying because he missed Hayden and wanted to have another baby. Rob and I had previously decided we weren't going to tell Jackson until I was past the first trimester because the thought of miscarrying and having to tell him the baby was gone made me cry just to think about the sadness he would once again be burdened with. But I guess on our way to the fireworks it just seemed right- so after we got out of the car I bent down and told him there was a baby in my belly that would be joining our family after Christmas but before his birthday. He was so excited and so happy- and we knew telling him was the right decision. His tears for missing Hayden lessened and he seemed overall happier.
For the next few months Rob and I were afraid to acknowledge our pregnancy- I was afraid to fall in love with this baby- all for a very real fear that this baby would also have a heart defect or something else would be wrong and we would have to say goodbye to another child. It was on August 16th that I knew this baby was connected to our Hayden and I started to cautiously feel connected to this baby too. August 16th was one year that we had lost our sweet Hayden. Rob and Jackson went somewhere for the morning to allow me some much needed alone time and just let it all out. As I was sitting on the couch, about 12-13 weeks pregnant, watching videos of Hayden and crying so badly I could barely breath or see, I felt this baby move. I felt our rainbow doing somersaults. Now if you've ever been pregnant before you know that the first kicks happen much later- week 17 or 18 or maybe not until week 20-21. The first few times I felt it I blew it off. But as it continued to happen over and over again, I felt my hand move and cover my belly and at the same time looking up to heaven saying thank  you to Hayden- thank you for this sign that you are always with me- and that you are sending us this very special gift. After that moment I knew they were connected but I found myself still fearing it. It wasn't until later in my pregnancy did I learn that one of the main things I am so thankful for is that even though Hayden lived a very tough life, he knew more than anything that he was loved and that is why he shined so brightly through it all. I was so thankful that he left this earth knowing how much I loved him and was so thankful for the rare relationship he and I developed in such a short time together. When I allowed myself to think of that, I knew that this baby deserved the same. So that even if our family were to endure another tragedy, at least I would know that this baby too knew he was loved and I would spend every day he was with us proving that love to him.

Fast forward to February 7th- when our Hudson finally joined our family! It was an emotional day and first weeks reliving all of Hayden's birth and first weeks of life- part of me really never got to process it all since everything moved so fast with Hayden- and it has truly been a healing experience. It has also been so hard- I miss Hayden even more now that Hudson is here- and can see parts of Hayden shine through his baby brother- especially his red hair!! I know Hayden is an old soul up there in heaven and sent us Hudson as he knew it would help heal all of our broken hearts. Hayden was such a special rare gift and I am finding myself becoming more and more thankful that he was given to our family and that with his life we have been able to continue the work he started while he was here with us on earth.
The hardest part of all of this for me has been feeling so close to a once again full happy life and having it be just out of reach. When Hayden was here I wanted for nothing else- felt so incredibly complete and full. When he died, like I've said before- a part of me went with him. But the first couple weeks we had with Hudson I found myself feeling so close to that type of fulfillment that left with Hayden the day he died- it was like if I reached out far enough I could grab it- but every time I felt like that, I just couldn't get it- couldn't grab that feeling of fulfillment and true happiness again. However, since having Hudson it's the closest I've ever felt to that feeling and it gives me hope that with time, as I continue to work on healing my broken heart, I will once again feel complete and fulfilled in the life I have been blessed- with a devoted and loving husband, a comical and incredibly active almost 5 year old, a perfect and beautiful one month old, and the most amazing angel who I know without a doubt is watching over our family taking care of us every step of the way.

5k walk for nolan!

11 March 2014

Hayden's Heart 5K Walk for Nolan Heart of Steel!

Event Details:
Saturday, April 26, 2014
Williamsport Are HIgh School Track
Registration time: 8:30am
Walk Begins: 10am

Donation: $20


Awesome shirts are for sale for this event!
Check out the design and ordering information on the event posted on facebook.

For information on how you or your business can sponsor this event, please email

tbt- March 13, 2012- hayden's here!

06 March 2014

TBT blog from March 13, 2012- the day after our warrior arrived!!
Hayden Jeter Dorsett blessed this world with his highly anticipated arrival yesterday, Monday March 12th at 5:32pm!
We were preparing for an induction for today, Tuesday, but I received a phone call from an OB at CHOP asking if I wished to move my induction up a day due to more staffing and an overall slower day for deliveries. I had been up the previous 3 nights for over 3 hours each night worrying and researching about the low fluid level and so when they offered a day earlier, I jumped on it!
We got to CHOP at 10:30am, started induction at 12:00 and Hayden was born at 5:32. I will spare you all the details in between! Throughout my labor I made it very clear to anyone who entered that I wanted to be able to hold him after he was born if at all possible. And thankfully, they followed through on that request. It was unfortunately the fastest minute of my life, but I cherished every single second of that minute and I deeply thank my husband for allowing me to be selfish.  Rob then cut the cord, to which he later confessed he wasn’t sure if he wanted to, since knowing all problems with Hayden start as soon as he is no longer attached to me.
But he did cut it and I’m glad he did- not every father gets that chance.
Hayden was then taken to the room next to us through a window Rob and I call the drive through window and there they started his prostaglandin (the medicine keeping him alive) and did other check-ups on him.
We got to watch a lot of this through the window and our parents and sisters, as well as Jackson also came to see him. Jackson was pretty much unfazed by it all but did ask a few times “That’s my brother?” apparently on the walk back to the waiting area, he told pappy “He’s really cute”.
Rob and I spent much of the late evening with Hayden and again, Rob allowed me to be selfish and hold him the entire time. We were told this may or may not be a possibility- that it often depended on the nurse and how they felt about moving him around with his wires. So far, we have been extremely lucky with both nurses- everyone has been allowed to hold him and today I had another miracle of being able to nurse him! Overall, we have had some major miracles and moments we weren’t sure would be possible and we feel so blessed.
As far as Hayden’s diagnosis and what’s next- we have yet to get word on whether he will need the 3-stage reconstruction on his heart and are waiting for that possibly later today, if not in the next two days. However, we were given some insight into his echocardiogram and as of right now, the doctor seems to be leaning towards a 3-stage reconstruction and not just a repair of the aortic arch. This news has been more than heartbreaking for Rob and I and we are both still trying to cope with it. Even though it is not set in stone and there is still hope, we are both struggling today with finding that hope.
For the past two months I have been telling everyone, telling myself that I am preparing for the worst and that he would need the 3-stage reconstruction. But after hearing some thoughts from today, it is clear to me I was just fooling myself into that belief.   Especially after seeing him, hearing him, holding him- you would never know he has a heart problem. It is a hard reality to grasp right now.
As I head back to the CICU to spend some time with our heart warrior, I beg you to pray that the insights from today change and that Hayden does not become classified as an HLHS (Hypoplastic left heart syndrome) baby but rather as a CHD (congenital heart defect) baby. Both are devastating but one road is shorter, more manageable and more promising than the other.  
As always I thank you for your love, prayers, support, phone calls, messages, donations, strength, good vibes, etc- we continue to feel that love and even though we can’t always be strong, we are grateful to pull strength from all of you….

swing for michael!

04 March 2014

Hayden's Heart Golf Tournament-
'Swing for Michael Mudd'

To learn more about Michael's journey and fight against CHD- please visit his care page.

Event Details:
Monday, June 2, 2014
Registration: 8am
Tee time: 9am (shotgun start)
Luncheon at the course immediately to follow the tournament. 

Price per golfer: 
$150 individual 
$600 foursome. 

 Register and pay by May 1, 2014 to receive these rates-
$125 individual 
$500 foursome

Once we receive your registration, we will email you with payment options.

Mailing instructions are on the form. 

For information on this tournament and ways to sponsor, CLICK HERE.

For sponsorship levels and opportunities, CLICK HERE. 

To sponsor this tournament, please download the form HERE. 

3.12.12 - 8.16.12

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