tbt- 7.20.12- 'ten days'

SO, what will you be doing in ten days? It will be a Monday so many will be stumbling out of bed after a fulfilling summer weekend and heading to work- others may be making it a three day weekend and enjoying some more time at the beach- and some will be dropping your toddlers or kids off to summer camp and taking your baby or other kids back home to get your life back together after a hectic weekend...

Rob and I will have no doubt barely slept yet and will be preparing to hand our precious 4 month old over for yet another life altering procedure. But not before he is taken in for a follow-up MRi of which the results will eat me alive waiting to hear. March 15th Hayden was taken back for his first open- heart surgery and I thought for sure that was and would hopefully be the hardest day of my life. It was only going to get easier...I was proven wrong a few times since then- first was the night we found out his MRI results and the pain and cries that filled that conference room as I fell to my knees infront of my three year old when told how significant the damage was...and the cries I could hear all the way down the hall back to Hayden, giving Rob some much needed space to let out his anger, devastation and frustration. Then the evening of May 7th when 8pm felt like 4am and I found that loosing Hayden could really happen and I might not even have time to prepare for it. And now in 10 days I will for sure be experiencing yet another 'worst day of my life' moments. The thought of giving Hayden to a group of men and women in scrubs and caps makes my stomach literally turn and leaves me with a feeling of nausea. Hayden isn't just a baby anymore- he is a person who has a personality, who has stolen my heart and anyone's who have met him, who smiles ALL THE TIME and tries like crazy to laugh, who snores when he sleeps on his back, whose favorite toy is a crinkly butterfly from his auntie lauren, who wakes up every morning with this shy smile watching me as I pump his morning milk. Hayden is a four month old miracle who loves when his brother sings to him and plays with him, and tries with everything he has to do his tummy time, reach for his toys, play on his side and successfully complete all the other tasks his mommy strives to help him with on a daily basis. Hayden is a baby boy, my baby boy whom I literally could not love any more. So to hand him over to someone who I know will return him in a much different state is scarier than the scariest monster I ever feared growing up. I will hand over this beautifully happy smiling fully awake baby boy- and four hours later come to a POD where three other babies and their families will already call home and see my perfect baby looking nothing like my perfect baby. He will be swollen, he will have tubes and wires coming out of his perfect little chest, he will have a fresh incision right on top of his freshly healed incision, he will have a breathing tube- or oxygen at the very least. He will be unconscious- thank God- because when he does finally wake up, he will be in pain- and I won't be able to hold him and comfort him through his pain for at least 48 excruciating hours. He will have medicines pumping into him through an IV that probably took them 4-5 tries to get in the first place. But somewhere in all of that will be Hayden- that beautiful boy who can turn my most stressful day completely around with one simply perfect smile, who gets excited and kicks his feet at the sound of my voice, and who will turn his head upside down to follow his happy playful brother around the room. What will get me through this day will be knowing that Hayden is still in there and that even though it will feel like an eternity, when Hayden does recover- he will come back a much healthier, more stable Hayden and at that moment, this will all have been worth it. 

In ten days I will be roaming the halls of CHOP praying to God that Dr Spray and his team have once again successfully operated on my baby's heart and that Hayden will fight through this surgery and recovery like the warrior he is and has been. I hope you will join me in this prayer.

2nd Annual Blood Drive!

Thrilled to be gearing up to host our second Hayden's Heart Blood Drive!

I have to say of all of our events we host, this is one of my favorites. Its the one event we host that people come to give us something and get nothing in return. They don't get to participate in a 5k and then enjoy tons of food and family fun afterwards, they don't get to golf 18 holes with their buddies and have a few beers, their car doesn't get cleaned, and they don't get to bid on and win items at our holiday silent auctions. The people who attend and participate in this 'event' are the most selfless people I know. They come to lie on a table and donate their blood- they come to save lives and they come to support Hayden's Heart. It is the most incredible sight- and I cannot wait to see the place filled up again and people lined up waiting to show their support and to help save lives. Last year our goal was 20 successful donors- and we blew the Red Cross Team away with 38!! This year our goal with the Red Cross is 38- and my personal goal is 50! Last year I couldn't donate because I was pregnant- but this year I will be working on my iron levels and am looking forward to being one of those 50!

Why do we do this you ask??
As many of you know Hayden had three blood transfusions in his short sweet life and the last three days of his life he was placed on ECMO- which is a machine that circulates donor blood in and out of the body. I asked our ECMO nurse the morning he died if this were transfusions, about how many would he be up to at that point and she said around 20. We already knew at that time that Hayden would die later that day- and at that moment I knew we needed to do something to help replenish this blood bank and give back in honor and memory of Hayden and all of our cardiac friends.
So please, join us on Wednesday AUGUST 6th at the Elks Lodge in North Arlington NJ for our second annual blood drive in honor of Hayden. Help us save a few lives and give back to honor a sweet boy who died way too soon.

To make an appointment, visit redcrossblood.org and enter sponsor code: Haydens Heart

the look on his face...

When Hayden went into his second surgery, the Glenn, we sat down with Dr Spray and spoke about what he was going to be doing. We already did our research so we pretty much knew what he was going to say - but thats the protocol at CHOP- you meet with the surgeon just minutes after they wheel your baby away with the anesthesiologist and discuss the plans for the next couple of hours. I knew what I would be doing- sitting in waiting room with our family and a few friends hoping Jackson would once again be the distraction I so needed. Watching the clock waiting for another hour to pass when our nurse would come give us an update on what was happening.
But before all of that- we met with Dr. Spray- the chief of cardiac surgery at CHOP. I had such a doctor crush on him and got shy and speechless whenever I was around him. I never got a photo of Hayden with Dr Spray- pretty much because I could barely talk when he was around, let alone ask him to pose in a picture. I always joked with the other doctors and nurses about what to get him as a thank you for what he had done for us both after the Norwood and then after the Glenn. I felt  indebted to him and had no idea what to do to repay that, and I know thousands of other families feel the exact same way.  Nothing could ever be good enough to say thank you for giving me the 5 months and 4 days we did have with Hayden. But, I will say I think we did give him a tiny gift that day we met with him to discuss what was about to happen in that operating room.
Dr Spray began with telling us he would be removing the stent that was placed in Hayden's heart during his cath procedure back in May- he then continued to tell us all about what would happen next, how long everything would take, when we could see him, what to expect during recovery etc. All of this we pretty much knew either because we researched it or had friends who already went through the Glenn. So, when Dr Spray looked at us and asked if we had any questions, Rob and I looked at each other and started half smiling a bit. Then we turned to Dr Spray and said that we understood what would happen during surgery but we did have one question- what does he do with the stent once he removes it from Hayden's heart? He told us he would dispose of it. We then asked if he would mind saving it for us- if we could keep it. Honestly going into this we didn't think that was odd at all- we figured lots of parents asked him these kind of questions and just assumed he'd say ok or no and that would be it. But thats not all that happened- for a few seconds it was silent and Dr Spray smirked, smiled, and said 'Well, I've never been asked that before!'. Which kind of shocked me and I remember thinking oh jeez-he must think we are so weird..oh no...And then I remember the look on his face- a half smile, slight chuckle- and he said, half laughing- 'Sure you can have it!'
And so the next few hours we waited for hourly updates and then finally got word from our nurse that the surgery went perfect and that we would be meeting with Dr Spray soon and then we could see Hayden. And thats all we wanted was to see Hayden- but first we met with Spray- and the first thing he did when he walked into the room was hand us this clear plastic container with a blue lid labeled with Hayden's medical ID number and name- and said 'Here you go'- again with that same half smile/smirk/laugh that he gave us when we first asked. I think about that moment all the time- anyone who knows Dr Spray knows that he is top notch when it comes to surgeons but personality wise- well, his strengths aren't really in that department. And we were ok with that when we chose him as Haydens surgeon- because we wanted the best of the best- but honestly he really doesn't have great bedside manner. And I often wonder if thats because he's seen and been through too much. Too many hearts have stopped and not restarted on his table, too many couldn't make it through the recovery, too many deaths-period. And not because it is his fault, but because this is what happens in the heart world. So maybe he used to connect better to his families and get attached- and then maybe that got too hard for him. I don't know the reason- although that certainly would make sense to me. Regardless of why Dr Spray is the way he is, he's the chief of surgery on that floor- and thats all the title he needs.  But seeing him smile/smirk/laugh at us when we asked him what I thought at the time was a normal question, well- it makes me smile right now just thinking back on that moment. Almost like we cracked him. We got him to smile. Not that anyone could ever forget Hayden- but I bet he'll never forget that babies parents who asked to keep the stent that was removed from their child's heart- and it sure was the topic of discussion going around the cardiac floor for the remainder of the day- countless nurses came in to check out Hayden's stent and agreed with us at how amazing that little spring looking piece of metal was- and that it was what helped Hayden survive his interstage.

(the pic of Hayden is during his recovery from the Glenn)

tbt- 7.6.12- thankful for the little things...

Today was another unexpected trip to the ER for Hayden- he had some issues with his incision and needed to make sure it was not infected. Luckily, we were surprised to be sent home for the first time, not to CHOP-

So tonight I am thankful that my entire family is under the same roof. It seems like something silly to be thankful for, but when you spend part of your day packing everyone up for an unknown amount of time in a hospital, then happily unpacking a few hours later, I am once again reminded to be thankful for the little things in life...

I am so sad that our family has to go through so much day after day...I share the major events on facebook and this blog- but there are daily struggles that only we know about. Like every three hours I have to walk, rock and sing as I try to feed Hayden some of his bottle. The entire time I find myself internally praying, pleading- Hayden please drink your bottle- please just suck for a little bit...please...only to have him take 10ml...

And then there's that damn NG tube that I love and hate- with it Hayden's reflux is at its highest and he tries every day to rip it out- without it Hayden would starve. I have daily anxiety about that damn tube and him pulling it out. I get ill every time I have to put that tube down his tiny nostril all the way to his tiny stomach. Can you tell how much I HATE it?!

Every time I allow my eyes to close at night and find some sleep, I wake often throughout the night either to a beep sounding a feed is complete, or to Hayden coughing, gagging, choking- and every single morning of Hayden's precious little life I have woken up and the first thing I do is check to make sure he is breathing- that he is alive and we are blessed to have another day together. Because as I have said before- every day with Hayden is a blessing. I have only been a heart mom for 9 months and I have already known far far too many heart warriors who are as healthy, or unhealthy (however you choose to look at it) as Hayden who have lost their battle far too soon.

I could go on and on about our daily struggles- but you get the point. Hayden has taught me more than I could ever dream to teach him- most importantly to be thankful for the little things in life. I truly hope that Hayden has taught you that priceless lesson too...so, what are you thankful for tonight?

lucky + blessed...

Since Hayden died, the last thing I would label myself as is 'blessed' or 'lucky', How could either of those be true when Hayden is gone? How could anyone possibly see my life as blessed?? It is anything but blessed. My child died. My life was shattered. It was definitely not blessed. Or lucky.
Or is it- and I just didn't want to hear it- because hearing it would be believing it and that just wasn't possible.
Monday we had our first New Jersey Golf Tournament for Hayden's Heart. Like any other event, leading up was a stressful worry of how many people would show up.  But the week before the event we added up the teams and to our surprise we had a total of 17 foursomes- we were thrilled!! The day of the event, as everyone was loading into their golf carts, Rob and I thanked everyone for coming out today and wished them all luck and were anxious to hear all about it at the luncheon afterwards!
They carts started pulling away and I stood there with Hudson in his carrier smiling and waving yelling have fun! to all the carts as they passed me. And then the tears started welling up and I kept thinking hold it together until they are all gone- and I did. But not a second after they passed me I turned to Rob and hugged him with tears starting to flow. The feelings that I was experiencing were so overwhelming- 68 people came out to golf- many we didn't even know- some who never golfed before- all taking the day off to help us- to show their support. I was just floored once again by the impact Hayden had and continues to have on people.
I left soon after registration to get home, feed Hudson and go pick Jackson up from school and head back in a couple hours for the luncheon afterwards.  On my way home I kept smiling and crying- thinking over and over again how LUCKY and BLESSED we are to have so many people supporting us. This whole foundation idea I had a year and a half ago could have completely flopped. And yes, we put a lot of work into making sure that doesn't happen on our end, BUT without support where would we be? Without 68 golfers and 15 sponsors that day, we wouldn't have had a tournament and been able to send the Mudd family a support check. Without the 28 people who purchased cinch sacs during the month of May, we wouldn't be able to put a smile on 28 tots at CHOP this summer.
Without all of you- this would not be. My goal in life to honor and remember Hayden through his legacy, Hayden's Heart, would not be possible. So- am I lucky that Hayden died? Of course not- but I now can see I am so lucky and blessed that while he was here, he impacted the world in such a way that no one will ever forget him and his fight. And through that amazing journey he had, we will now be able to help heart families all over the world in his memory and honor because of all of you and your ongoing-never ending support.  Thank you for allowing me to see that even though there was a time that I would never entertain the idea or those words- I am lucky and blessed and it is because of all of you.

tbt- 6.3.12- Thirty Days~

Hayden and I spent 30 days in the cardiac center at CHOP. What started out at a simple admission for a cold, turned into an unexpected lengthy journey of which at times I was unsure would ever end. After about two weeks, it seemed one wrong thing lead to another and I started to wonder if we would be able to leave before his next surgery. I had become very negative, and not because I am typically a negative person, but because if I allowed myself to think positive and get my hopes crushed one more time, I think I might possibly loose my mind. Literally. 

I learned a lot about myself in those 30 days... 

The night we were readmitted to CHOP started off as what we thought was a quick trip to the ER. We were there for 7 hours before the team from CHOP got there to get Hayden and I. Funny how after spending three weeks in the hospital made those seven hours feel like nothing- where as before, I would have been pacing the halls and clawing at the wall to get out of there. I learned that I can be patient. 

Any parent who has yet to ride in an ambulance with their child- its not like the movies- well atleast if you are going to CHOP- you don't get to ride in the back and hold your baby's hand like I thought- you ride upfront with the driver and let the trained nurses sit with your baby. At first I was pretty upset by this, but at the first red light the ambulance came to a stop and I could hear him crying in the back. It was then that I was so thankful I wasn't back there witnessing that- not being able to comfort him and hold him while he was so upset for three hours would have been excruciating. I learned that I can be thankful for things when I least expect. 

Walking back through the halls of the CICU that early morning felt oddly like being home. Like we had never left. We were placed in Pod 4, Bed 1. Just one pod over from Hayden's first bed. The faces that greeted us were familiar, half smiling- wanting to show they were happy to see us, but..not happy to see us...The nurses and doctors that were waiting for us knew Hayden-knew every single detail about Hayden- and there are a lot of details...it was at that moment that I was thankful we were transported back to CHOP. A few hours ago I was wishing they would just send us to St Peters where Hayden's cardiologist is located and affiliated through CHOP but it was then that I realized we were right where we needed to be. Especially when a nurse- turn friend immediately came over to me and embraced me telling me he's here now, everything will be fine. I learned that feeling at home doesn't always mean being inside your actual house. 

The next few days somehow turned into weeks and about two weeks into our stay I started becoming depressed. I starting crying myself to sleep every night because every time I turned around something else was wrong with Hayden. I started thinking we were going to be one of those families that never gets to leave the hospital. I know, pretty dramatic to think after only a couple of weeks. But I think I had to get in that mind set- because otherwise I felt like i was crawling out of my skin. Two weeks in there felt like two years- especially when Jackson finally came back that first weekend to see me- he had grown and changed so much in one measly week. When he came running around that corner to our new bed, Pod 5 Bed 2, I picked him up and just cried and held him against me until he made me put him down. He had matured in that one week- and I'll never know if he changed because it was his time to or because he was once again without his mommy and was forced to. One of the hardest parts of this entire journey has been cutting the cord with Jackson. Mainly because it was a forced cut- not one either of us welcomed, but was given no other choice. I still get upset thinking how the first week of Hayden's life I think I saw Jackson three times. The only way I was able to overcome this depression was through a lot of visits from my best friends and getting it in my head that we were never leaving- even though I think I had to know that wasn't true. I learned that sometimes you have to lie to yourself to get by.

The scariest moment of my life came on May 7- cath day. If you've read my blog, you know how his recovery went. If you haven't read it, go read the entry 'cath aftermath'. It will send any parent rushing to their child and squeezing them harder and tighter than ever before. It was the closest we ever came to loosing Hayden and it was then that I truly learned that outcome is always possible. My mind always knew it, but my heart refused to acknowledge it. I have learned that each day Hayden is with us is truly a blessing. I've learned the real meaning of taking it one day at a time, sometimes one minute at a time. I have learned that on a daily basis Hayden's condition can go from good to bad very quickly. I have learned that we have hundreds, almost thousands of people who love Hayden and are praying for him- and because of that we are lucky. I've learned to never take for granted the little things that make life worth living- like having someone to eat dinner with, or even eating dinner at all, sleeping in your own bed, tucking your children into their beds. I have learned that my 12 week old miracle, my three year old super star, my rock solid husband and I can pretty much get through anything this crazy world hands us...