meet kellen

On March 8th, we are hosting our second annual 'Hayden's Heart 5K run/walk' and 2nd birthday party for Hayden. This was our biggest event last year and we anticipate it being even more successful this year! When choosing a family to honor for this event, it is important to me that we choose a family who has personally impacted our lives and our journey. This year we have chosen the Jackley family and their son, Kellen.
Hayden and I met mom Stacie at CHOP during one of our trips inpatient. We were introduced by a mutual heart mommy friend and our boys, although not the same age, had a lot in common. Both HLHS, both major feeding and reflux issues. We connected immediately and I leaned on Stacie a lot during Hayden's life even up until a couple days before he died. She was a huge support to our family and we will always be grateful.
Fast forward to now- when we get to pay it forward. We are so happy to honor Kellen, Stacie, dad Tommy and big sister Kaylin at our 5K this year! Stacie has given us a short version of Kellen's journey so you all can fall in love with him just like we did- although I'm sure the picture above alone is enough to reel you in!

"32 weeks into our second pregnancy, we were told there was a very serious problem with our baby boy’s heart. He would be born with a rare, congenital heart defect, Hypoplastic Left Heart Syndrome (HLHS), in which the left ventricle is severely underdeveloped and unable to function outside of the womb.  Essentially, this meant he would be born with half a heart.

He would require a series of three open-heart surgeries in order to survive, the first of which would be performed immediately after birth. It was a major shock to us because up until that point, we were told he was developing perfectly, including his tiny little heart. We were absolutely devastated and terrified of what was to come. From that moment, our lives changed and we knew we could never go back to what things were before that day. We could only move forward and hope for the best for our son.

Kellen Mason Jackley was born on December 21, 2010 at The Children’s Hospital of Philadelphia. Two days later, he underwent the Stage 1 surgery, the Norwood, in order to save his life. Overall, it went very well and he recovered with only a few complications. The most critical being a blood clot in his right atrium and a paralyzed vocal cord. Due to the paralysis, he was no longer able to eat by mouth and a gastronomy feeding tube (g-tube) had to be surgically implanted.  After spending 6 weeks in the Cardiac Unit at CHOP, he was discharged to come home on January 31, 2011. 

Facing the interstage in the winter months was very challenging.  We desperately tried to keep the germs away from him but he ended up being admitted 5 times for various illnesses. Two days before his scheduled Glenn surgery, the second stage, he woke up very sick and he quickly deteriorated over the hours following. That afternoon he was admitted and preliminary tests showed positive results for RSV…life threatening to a cardiac infant, especially during the critical interstage period. I was terrified we were going to lose him because it’s the worst thing he could have at such a fragile state. Miraculously, he fought through the RSV and was able to have his Glenn surgery 5 weeks later, on June 9, 2011.

The Glenn surgery could not have gone any better and he was discharged just 4 days post-op! A few weeks later, he was cleared to resume feeding by mouth.  It was an extremely slow process getting him to adapt but within a year, he was eating like a champ and we were able to have the g-tube removed on May 25, 2012, which was a huge milestone! Fortunately, he’s only been hospitalized a few times since then, for a minor illnesses, otherwise he’s remained fairly healthy.

Kellen just turned 3 in December and to look at him and watch him play, you would never know this sweet, silly, very active boy is living with only half a functioning heart.  We are currently awaiting the Fontan, the third and hopefully final surgery, which will be in April of this year. Until then, we are just trying to keep him healthy and enjoy “normal” family life.  Though his heart can never be “fixed” we aren’t going to let that stop us from letting him live like a “normal” kid and give him the life he deserves…and then some :)"

'tbt'- 2.26.12- We're here!!

Blog entry from February 26, 2012-

WE’RE HERE!

Yesterday afternoon Jackson, Rob and I made our way to Collingswood NJ (just outside of Philadelphia) to await Hayden's arrival! On our drive I did a lot of reflecting and was reminded of how blessed, loved and lucky we really are. Since learning about Hayden's condition, I have found several families who have gone through, or currently are going through the same things we are. I'm following more blogs than I can keep track of and learning something different from each one. An important lesson for me has been how different everyone's journey is. There are families who have to travel by plane for hours to get the care we are able to receive in just a two-hour drive. On our drive I became saddened at the thought of not being with Rob through the week, only on weekends, and then reminded myself that I am lucky to have that- some mothers travel extreme miles from their home and will be alone until their baby comes. I am fortunate to not only have Rob come back to us on weekends so we can be together, but also have the privilege of 'living' with a friend. I mentioned to Rob how much easier this transition is than being moved into the Ronald McDonald House where I would feel so alone. 

I am so relieved and feel a weight has been lifted off of me now that we are here. My biggest fear was that I would go into labor and not be able to get to CHOP in time for Hayden's arrival. Now I have many more fears to focus on, but as each fear is conquered, it brings us closer to our goal of being home as a family of four. As far as Jackson knows, we are on vacation! We are again very lucky to have such incredible friends who are willing to travel to spend their days with us- keeping us busy and sharing more of our journey. This week, we have several adventures planned and are looking forward to spending a lot of quality time together with some dear friends! 

'tbt'- blog from 2.23.12 ~ reflection

another 'tbt' entry- this one is from February 23, 2012- a look back at our journey so far: 

15 weeks ago, a doctors' 30-second diagnosis completely changed our lives. There are monumental moments in everyones lives where you just won't ever forget how you felt, or where you were the moment something life changing happens. For me, that day is November 10, 2011. I was going in for a few more measurements of the baby's spine- he wasn't in a good position the day before for his 20-week measurements so it was necessary for me to come back the following day. I went alone, not wanting to keep Jackson at his daycare longer than necessary, and not wanting to inconvenience Rob for a simple measurement that would only take a few minutes. After a long wait, I was followed in the room by a man who introduced himself as Dr. Principe. I immediately knew that leaving Rob at home was a terrible mistake and knew that measurements of my baby's spine was not why I was called back. I immediately questioned him about his presence in the room and he replied with the generic 'doctors always come in for check-ups' to which I challenged and said that I have never had a doctor in the room with me through all my ultrasounds- this baby, or my first. He didn't respond to that- they just asked me to lie down and they started looking at the picture on the screen of our baby boy. The terms and facial expressions they were using were nowhere near comforting and even though I knew something was wrong- I was scared to death to ask. After what felt like forever and with tears now streaming down my face, I finally asked what was wrong with my baby. The doctor told me my baby's left heart was too small. He helped me sit up so I could process what he said. I was obviously upset, but my initial thought was that there was definitely more than enough time left in utero for it to still grow. And then my thoughts went the complete opposite direction and I asked him if my baby would live. He said that was unknown, but what he did know was that our baby would undergo open heart surgery within days after being born in attempts to save his life. This news made me nearly pass out. I remember grabbing the arm of this man I had just met less than 5 minutes ago and not caring that I didn't know him- I just needed someone to balance me, and he was the only one there. In hysterics, I tried to make sense of it- tried to compose myself and be strong. I tried to ask all the questions I could think of and tried to figure out what was happening to us. But nothing I asked and nothing they said could have prepared me for what the next few months would have in store for us.

With Hayden joining this world in less than 4 weeks, I find myself reflecting daily on the last 3+ months. Parts of this have already gotten easier. Most of the shock has worn off and reality is quickly setting in. In a few days, Jackson and I make our move towards Philadelphia to await Hayden's much anticipated arrival. Please continue to pray for Hayden and for us as we begin this next step in our journey...

'tbt' blog from 2.14.12- CHOP update

TBT blog from February 14, 2012- CHOP update:

"Today was our 4th appointment at CHOP since hearing about Hayden's heart defect. It has become somewhat of routine for us now...the nerves used to be overwhelming the days and week leading up to the appointment and we often felt literally sick before going, not knowing what to expect or what they would tell us. Now when we go, we see familiar smiling faces and the entire ordeal is a bit less scary. Today was probably the easiest and shortest trip yet. I first had an ultrasound to check all the usual measurements and his position- he is head and face down- perfect position for birth! We also learned that his head is huge- just like his big brother! He is currently weighing 6lbs and has some hair coming in too! He is measuring, other than his head and weight, right on schedule at 34 weeks 5 days. This is actually great news since most heart babies tend to be born smaller than normal- so in this case, the bigger, the better, the stronger! We couldn't get any good shots of him this time since he is all ready in position for birthing but it was great to see what we did! 

Next I had a regular prenatal visit where we discussed the usual things pregnant women discuss with their doctors and also firmed up that Jackson and I are scheduled to relocate to the Philadelphia area the weekend of February 25th- which is already only 11 days away. This transition brings a plethora of emotions- I am anxious to get there so that I no longer have the worry of going into labor and not being able to deliver at CHOP, and of course I can't wait to meet this incredible little boy that has already taught me more than I could have ever imagined possible. But part of me is scared and afraid to be away from Rob during the most difficult time of a normal pregnancy, let alone one that comes with such emotional strain. I also never imagined I'd want this pregnancy to continue forever- but knowing Hayden is safest in me, I can't help but want him to stay right where he is. So, I guess it’s a good thing I have absolutely no control over this since I wouldn't even know what to wish for anyways...

Our last appointment today was the echocardiogram and hearing the results. We were told exactly what we expected- Hayden's heart remains the same- not smaller, or larger. So we stand still in the world of the unknown and are still praying for some miracle that his heart will grow to the size needed to function as a two ventricle muscular organ. The constant remains that he will be given an IV immediately following birth through his umbilical cord to keep him alive until the team of doctors and surgeons decides what surgical process they will need to take. He will undergo open heart surgery within the first week of life- and this will be to fix his aortic arch, which is severely narrow, and possibly start the reconstruction on his heart with the Norwood procedure. 

Thank you for following Hayden's journey with us- for your support, love, prayers, good vibes, hearts for the banner, cards, phone calls, monetary donations, emails, the list goes on and on and we are so incredibly grateful and blessed...thank you!!"

tbt- 'chop update January 18, 2012'

This is the third 'throw back thursday' blog entry- another update from an appointment at CHOP- the photo above is from some of the hearts that were made by people all over the country praying for our family. It was so incredibly uplifting to come home to a mailbox with hearts each day- at one point, every room on our first floor had hearts, all the way up our stairs and to the second floor! It was breathtaking!! 

"Sorry for the delay with our CHOP update...the last 24 hours have been exhausting and I was definitely fighting a battle with 'Debbie Downer'...I kept attempting to post an update but found myself being less hopeful and knew I wanted to be in a different state when sharing more of our story! Anyways, I apologize for not updating sooner...yesterday was basically more of the same. Hayden's heart is still not growing but they are still not completely ruling out that it can grow. It sounds more likely that we will not know until he is born and his surgery will most likely happen later than we were originally expecting. From what we have read from other families, it seemed typical to have the first open heart at day 1-2 of life, or as soon as the baby is stable. With Hayden, they will most likely need to observe him for a few days to see what his heart does outside of the womb. Even though this obviously delays things a bit, I was happy to know this so that when the time comes, we can prepare to be pushed back a few days. So, please keep praying for Hayden in hopes that our next appointment on February 14th (ironic??) his heart shows some positive changes!! THANK YOU!!"

2014- we've been waiting for you...

                                

Last New Years was incredibly tough for me- I was so scared to say goodbye to 2012- the only year that Hayden was physically here for-  it is still my most favorite year- and also the worst year of my life.  I started off 2013 very depressed because I had to start a new year without him- and that just seemed too painful to even think about- let alone actually do. 2013 continued to be incredibly painful- every day was hard- some harder than others- but nonetheless, difficult. It was our year of 'firsts' without Hayden- his first birthday, our first easter without him, all the way to reliving his death one year later- and that was tougher than I could have ever prepared myself for. Everyday I still feared waking up to a nightmare that was my reality- I painted on a face of strength, because thats what I was supposed to do- be strong like everyone thought I was. I buried myself in Hayden's foundation, Jackson's activities and started back into my photography business. People's lives went on and for most of the world,  the new year represented a fresh start, a new year. For me, I was stuck- I couldn't start over, I couldn't move forward. I felt isolated, alone- like an alien on this earth. I didn't belong here. 

But time is an amazing thing- I wouldn't say it heals necessarily, just that it allows for a period of adaption. I have recently been adapting to my new life- the new me- the person I became and am becoming since loosing Hayden. I know my limits and am learning how to handle my bad and sad days much better than a year ago. I am more than happy to say goodbye to 2013-a year that for me, was filled with so much pain-  and thoroughly welcome 2014- another year of adapting to who I am now since loosing Hayden, and the year of our highly anticipated rainbow baby- whom we affectionately call 'Astro'. 

I feel Hayden's presence more in my life the last few weeks than I have since he died. It's hard to explain- but I truly feel he is literally a part of me- and his old soul speaks to me and comforts me when I need him. I no longer feel totally alone and isolated- I know he will always be with me- and when no one else understands, he does. I feel so honored to know that this little baby boy who touched the world in just five months was given to our family- and is now and always will be a part of me. Of course I would still give anything to have him physically here- but since thats impossible, this is definitely the next best thing. 

(the photo at the top is from our NYE party last night- Rob, Jackson and I just started our first game and started eating our appetizers and this sauce dripped off of my shrimp onto the plate in a perfect heart shape- he is truly ALWAYS with us....)