tbt- 4.12.12- Happy 1 month Hayden!

Happy 1 month birthday to our personal hero and heart warrior!! 
This month I have learned more about myself than I have my entire life. I have learned that just when you think you have nothing left to give, you find the inner strength to give ten times more. I've learned that I have the most selfless, caring friends in the entire world, that I've got great cat-like reflexes when it comes to catching vomit. That being a mother to a heart baby and one with a brain injury means giving up a good portion, if not all, of your personal life- of which I am sure this is just the beginning of. I've learned that so many people care about and love me and my family- that may be the most overwhelming lesson yet.  I've learned that it is possible to love two children with all of your heart and love them equally but for different reasons. I've learned and accepted that Hayden was given to us for a reason- because God knew me better than I knew myself and he knew I'd fight every second of my life to make sure Hayden's life is all he deserves it to be....

Happy one-month birthday Hayden. Thank you for teaching me and allowing me to be all I was meant to be.

tbt- 'happily home' 4.7.12

If you haven't heard already, we are HOME!!!!

Hayden was discharged from CHOP this past Monday! It was quite a ride home. Hayden passed his 2-hour car seat test at CHOP but unfortunately we were in the car for over 3.5 hours. Not my idea of a homecoming ride home! We hit major traffic and had to administer Hayden's first feed out of the hospital on the side of the NJ turnpike! Good news is we did it- and we are now pro's at tube feeding on the go! We were welcomed to a decorated home and my spirits were lifted when I saw the outpour of love for Hayden and for us....

Since we have been home, Hayden has developed quite a bad case of reflux. He is on meds for it now but it hasn't stopped him from vomiting. As long as he continues to gain weight, they say he is fine but any parent knows watching your child projectile vomit several times a day is anything but fine. Hayden's insides are all still trying to get familiar with one another since his surgery. Heart babies often struggle with reflux because of the change in their organs. But even though this is common, it is still so hard to watch. 

Otherwise, Hayden is doing pretty well! We are all adjusting to our new life and Rob and I are 

becoming great at our nursing duties. My days are full of feeding tubes, administering medications, phone calls to teams monitoring him at CHOP, facetime visits with nurses, home care nurse visits, pediatrician and cardiologist appointments, scales and pulse-ox monitors, as well as changing diapers, snuggles on the couch, listening to lullabies, and all the other normal baby things- and I wouldn't trade any part of it. Hayden is a true miracle and blessing to our family and we are so amazed at his strength! 

'fbf'- road to recovery 3.31.12

OOPS! Forgot to post a TBT yesterday so here's a flashback Friday instead from March 31, 2012~

ROAD TO RECOVERY!

Hayden is recovering well in the CCU (Cardiac Care Unit) of CHOP!  We moved here last Tuesday and he has remained stable- working on increasing the amount of feeding through mouth, the rest through a tube. Rob and I had a class on how to insert the feeding tube and how to feed and administer medicine through the tube. As of now, we are basically waiting to make sure his belly is comfortable with the amount of milk he is receiving each feed and as it stands, if everything continues to go well and run smoothly, we are looking to be discharged the beginning of the week! We are equally excited as we are scared but with all the information and hands-on help CHOP is providing in terms of how to care for him, we know we will do just fine. Hayden's care will be a full time job for me from now at least until his second surgery. The months in between are the most critical. Typically HLHS babies have their second surgery around 4 months of age but they tell us we will see signs from him when his heart is in need of the second stage and further reconstruction. 

We are excited to introduce Hayden to our friends and family and will post some visitor guidelines the hospital has given us when we are finally home!!  As always, thank you for continuing to support us in this journey! 

the story behind the footprints

I think everyone knows that our logo is Hayden's footprints- but I'm not sure many know the story behind them. I believe I mentioned it in my 15-page blog I wrote about Hayden's last few days with us but if you missed it, you may not know the story behind the footprints...

It was around 10am on August 16, 2012 and I was laying in bed with a dying Hayden. Just an hour prior to that we sat in the conference room across the hall and heard the most devastating words we would ever hear. Dr Licht- Hayden's neurologist- told us that Hayden would not recover brain function and that he was brain dead. He would be with us as long as we wanted the machines to keep him here, but essentially, he was gone. To type this even makes me ill. Bringing myself back to that moment is terrifying and devastating. It was the most tragic and horrific moment of my life- one that practically put me into a coma state. When we got back into Hayden's room, I layed down next to him and literally went into what felt like a coma. I heard the music I was playing for him but nothing else around me. The beeps of all the medical equipment, the voices of his doctors, nurses, ECMO nurses- all went away. The only things left were Hayden and I. We were in a different place together- far away from the  reality that was surrounding us. In my mind, I was holding Hayden, we were smiling at each other- we were happy together. The entire time I was laying next to him I was holding his fingers and hand which at this point were so swollen I barely recognized them. In my mind, and for I don't know how long, I was lost in thoughts of happiness with Hayden and I- trying to engrave him into my brain as deeply as possible as I knew that sometime today I would have to say goodbye to the physical being that is my baby boy.

At one point I started to come out of my haze and before I even opened my eyes I could hear familiar voices around me. I could hear my best friends Sarah and Lauren quietly talking. Then I tried to open my eyes and I somehow found the strength to get up and face my friends, the doctors, nurses, and again face a dying Hayden. I can't remember what was said, but I know it wasn't too long until Kati joined us- the fourth pillar in our unit- making what felt like stable ground for me and allowed me to get up out of bed.  Having the three of them there gave me strength and together we started doing something with Hayden that at the time probably looked and seemed silly to all of the doctors and nurses that surrounded us- but to my friends they knew for me it was survival mode- and they never skipped a beat. For over an hour the four of us along with our Childlife friend used Hayden's hands and feet and plastered them with ink and paint- getting as many prints on things as humanly possible. All the while talking and singing to Hayden- laughing at the ridiculousness of what we were doing. At one point I told Hayden that I was sorry for all of the last minute crafting but its kinda my thing- and so I have to throw a lifetime of crafting into one hour. I think the memory that sticks out most to the four of us from that hour together with Hayden was his one little toe- the second toe on his right foot just would not stay down- so every single time we tried to get his footprints, one of us would have to manually push that toe down for him- it lightened the mood and when I think of that hour, I smile remembering how silly that little toe seemed to us at the time.

But all too soon the paint was drying up, the paper was gone- and Hayden's room was filled with little footprints and hands. And all too soon reality smacked me in the face again. Our families had arrived and prepared to say their goodbyes to Hayden and it wouldn't be long until I would say my own goodbyes. To this day when I think of those last days with Hayden, that is the only hour that I can think of without wanting to throw up and without being flooded with tears and pain. I am grateful for that hour for so many reasons...

Moving forward to the week after Hayden died and we are planning his funeral. I wanted to give something to everyone that was special- a piece of Hayden. And then I saw them- the footprints were sitting in a pile on our kitchen table and while on the phone with Sarah we came up with it. (actually I think she came up with it- details from that week are a little fuzzy) We would cut out the feet to make them in the shape of a heart. So thats what we did- then we made them into magnets for the service and everyone who came took Hayden's footprints home with them to remember him.

Fast forward two months and we have the foundation started in the early stages. We didn't really have a logo for awhile and then somehow it all just came together. The aden and anais swaddles were also in the beginning stages and the footprints were being used on those- and so from there they became the official logo for Hayden's Heart INC. So those footprints you see on swaddles, sweatshirts, tee shirts, car decals- they aren't just Hayden's feet. There's a story behind those prints- one that I know the four of us girls will never forget. It goes without saying that the love I have for them goes deep into my core-I couldn't be more thankful and feel more blessed to have spent that hour with them and with Hayden. In literally my darkest moments the four of us created something so beautiful together that is now the symbol of Hayden and the foundation Rob and I have established in his memory and honor.

tbt- 3.30.12- 'another battle to fight'

This is a tough throw back for me- I remember very clearly the night we got the news on Hayden's brain function back in March 2012 and I remember thinking wow- this must be the worst kind of news he (Dr. Licht) has to deliver to parents. Unfortunately it does get worse- and just a few months later we heard exactly just how bad the news he has to deliver to parents really can be...

3.30.12

Just over two weeks ago, we found out Hayden would undergo his first surgery the next morning at 6am. Immediately afterwards we were approached by a few people about participating in some research studies. My mind was already swarming with thoughts so I tried to act interested but was really just wanting to get back to Hayden and spend every minute with him. Lucky for me, Rob had his head on a little straighter than mine and was somewhat processing what they were saying to us. We were asked to participate in three studies related to his condition and operation. We said no to two of them, and one we were considering. The one we were thinking of participating in involved Hayden having an MRI before surgery and then a follow up a few days later to see if the surgery, being on bypass mostly, causes any change in brain function that may relate to learning disabilities that are so common in HLHS babies/kids. 
Rob and I both felt it was important to participate in something that may benefit other HLHS babies down the road since so many before us had helped get the process to where it is today. I hesitated simply because this was my baby and he was already going to go through so much. In the end, we agreed to Dr. Licht's study on brain function. 

Hayden had his first MRI right before going into surgery. The results came back clear, Hayden's brain looked great! One week after surgery they performed a second MRI. The results we received that night from Dr. Licht were and still are devastating. In just one week, Hayden's brain function went from great- to significantly damaged. 
The neurologists are perplexed by these findings simply because the part of his brain that is damaged (PVL) typically occurs in premature babies, coding, or other things that cause extreme lack of oxygen to the brain. It seems there are two thoughts on the cause- his seizures, or being on bypass. I don't know that it even matters what caused it, really. But I can't help wanting someone or something to blame. When we first found out about Hayden's heart condition, I found myself questioning my previous actions and wondering if it was something I did that caused it. I find myself doing the same thing with his brain damage- had I chosen a different hospital, a different surgeon- would the outcome still be the same? In my head I know that nothing would have prevented this from happening but in my heart and as a mother I can't help but want something or someone to blame. 


This news was and is harder for Rob and I to handle than his heart issue-simply because there is no definite fix for his brain like the heart surgery. And the 4 months of unknown that we experienced before he was born was torture enough- the unknown with his brain damage is indefinite. I fear with every milestone we miss I will mourn for my son and be in constant fear of his ultimate outcome. 
It has been one week since we were given the news on Hayden's brain damage and we've already come a long way in the healing. For days I couldn't speak to anyone, not even my family or best friends simply because I had nothing to say- nothing positive anyways, we had lost all hope and faith in everything. Today we are hopeful and full of faith that Hayden will be given every opportunity under the sun, moon and stars to overcome this life sentence. Rob and I again thank God that we were given the gift of knowledge. Had we not agreed to Dr. Licht's study, there is a great chance we would have never had an MRI for Hayden and by the time we figured out that his delays were not associated with his heart recovery, we would already be so behind in the healing process for his brain. 
Hayden is a heart warrior so we know he has a lot of fight in him. We have all the faith and hope in the world that he will fight like a warrior through this too. Thank you for fighting for him right along with us.