tbt 8.16.13 'one year later'

I'm not quite sure how i made it this far. I truly did not think I would survive this long without Hayden- I thought for sure I would die of a broken heart, just like elderly couples who are madly in love are said to do. 

I remember the first few weeks and months just dragging on and thinking my god, make it stop. Make the pain just stop. And there are several times I still feel this way.

I remember being so torn as to where I should be- there were times I thought Rob and I should split up- one parenting Jackson here, and the other in heaven with Hayden.

I remember the day after Hayden passed away- we were out on our deck and I told Rob we needed to adopt a 5 month old baby immediately. The aches in my chest were so intense that I literally could not breathe and needed a baby lying there- since that is where Hayden spent the majority of his time when not forced to be in a hospital bed. The next day I told Rob we needed to have another baby right away. The following day I told him we could never have a child again.

The weeks after Hayden passed away, we received so many packages in the mail- it was unreal. The UPS man was at our house at least three to four times a week- sometimes twice in one day. I remember one day in particular we got three packages and after the UPS man left, I sat with Jackson on the couch and just stared at the boxes thinking wow- we are so loved and cared for-most of it by complete strangers- if only all this love could bring him back, I know everyone would do that for us if only they could. And then I looked at the packages again and one of the boxes was a rectangle, and all of a sudden it hit me- it was the perfect size for Hayden. So I ran to the kitchen and grabbed the scissors thinking maybe just maybe someone finally found a way to bring him back to me. Of course I know that can't be- but I was so incredibly desperate at the time, and the mind can do some pretty crazy things. I was embarrassed when I opened the box and of course my happy Hayden wasn't there- how could I have possibly even thought that?? But again, desperation for your child who is gone is something only another parent like me can understand.

The thought of visiting hours in heaven entered my mind for months. And the only way for me to calm down from wishing so hard that were true was to remind myself that if there were visiting hours, I would probably never come back for fear it would end- and how unfair that would be to Jackson.

I remember getting angry often and thinking- we are in the 21st century- how can we not figure out a way to bring people back from heaven?? Why has this not been worked out yet? and truly really not understanding it…

The reason I am telling you all of these random stories is because so many people have told me time will heal this pain, time will make it better. It has been a year since Hayden was literally ripped away from my family and I can tell you that time has not healed the pain- what it has done is taught me how to handle and manage the pain. The insane thoughts don’t come nearly as often- I don’t want to adopt a 5 month old, but whenever I think of Hayden, he is and always will be 5 months old. I still wish there were visiting hours in heaven, but not with the same intensity that I had before- now I just fantasize about it and what I would do with my time if allowed. I no longer think Rob and I should split up our parenting duties- although it still breaks my heart that Hayden is up there without us, he is with our grandparents and God- and I truly believe he is happy, watching over us, and waiting for us to join him when it is our time. Jackson needs us much more than Hayden ever will at this point. I no longer look at rectangle packages and run to the kitchen for scissors- I know how ridiculous that is and acknowledge that, but I am still so desperate to have my son back- and if someone thought they had a way that could possibly make it happen, I’d do it in a heartbeat- even if it was completely ridiculous.

I’ve changed more in the past year than I have in the past 30. When Hayden died, a large part of me died too. I don’t smile as often or laugh as hard, I cry every single day- sometimes just a tear, sometimes I can’t seem to pull myself together. For a long time I didn’t know who to be friends with- or if I even wanted friends at all. I couldn’t relate to anyone I knew- my best friends had no idea what I was going through, my heart friends still had their warriors and so they no longer knew what I was feeling, the only people I felt I belonged with were heart angel moms- and that’s the ultimate worst group of people to relate to- a group no one wants to join- but as we have all said, are so thankful it exists. I sometimes still feel like they are the only people I can truly relate to. I have lost friends and gained some. For the first 6 months or so there were only a handful of people I would even spend time with for more than an hour- because sometimes that’s all I could handle without completely loosing my shit- an hour. And there were only a few people I felt comfortable completely loosing it in front of. I often find I don’t know how to act in social settings in general anymore- what to say, how to engage. Sometimes I can’t focus on conversations people are having with me- because all I can do is think of Hayden and cant figure out why anyone would want to talk about anything else. Other times I cant even imagine talking in public about him because I would cry at the thought of him and wouldn’t be able to speak anyways.

People don’t know how to treat me either- should they mention Hayden? Talk about the weather? Ask about Jackson? People are afraid of me and it is often uncomfortable. I remember going out to dinner with some friends maybe 3 months after Hayden died and we sat there and chatted about anything and everything- except Hayden. It was so bizarre to me I didn’t know how to handle it. Here I was finally going out of my element to see these people and for the 2.5 hours we were together, we spoke of Hayden for 2 minutes maybe. And then there are the friends who try to make it like what happened is ok- the always positive friends who say things like ‘well thank god for Jackson’ or ‘your so strong, I could never be as strong as you if my child died’ or something else that really is as bad as talking about the weather.

All I want is for someone to ask me about Hayden- and not be afraid of what I might tell them. I want to talk about him and I want him to live on and be remembered. I agree I am not an easy person to be friends with anymore- and understand why a lot of people who in previous times of my life were considered my close friends are now people I rarely speak to, or even some I don’t at all. I understand, but it still hurts. I have honestly found out, as cliché as it sounds, who my true friends are. And feel lucky with the ones who have stuck around.  

In college, my roommate had a running tally of how many nights in a row I went out to the bars- it was our joke and thinking back on it now makes me smile. I think of how my life is and if that chalkboard were here now I would have run out of space on it months ago tallying up the amount of nights I sat in my garage or backyard with a bottle of wine and a pack of cigarettes and on my phone to my best friend(s) for three hours at a clip. I started smoking 3 days after Hayden died. I had such a craving for something and I knew it was Hayden but knew I couldn’t fulfill that craving so I started smoking- again. I had quit both times I was pregnant and started back in between Jackson and getting pregnant with Hayden. Once I had Hayden I was just so busy I guess- but I never craved another cigarette and I never had a drink (a full one anyway) as I always felt fulfilled with my life and didn’t need my usual vices anymore-until Hayden died. Then they became my therapy and most nights the only way I would fall asleep. The nights became so unbearably hard that I would find myself starting to get anxiety and fear the hours in between Jackson going to bed…and me finally falling asleep. It was as if 8pm hit, and my body had given up- used all the strength I had to just survive and function the past 12 hours and I could no longer survive the rest of the day without my vices. I would find myself excusing this behavior by allowing myself whatever I needed to get through the day…and night.  

I have changed as a parent as well. Luckily I learned from Hayden before he died to cherish every moment with your kids- housework, laundry, and every thing else can wait- spending time with them was my top priority- and still is. Yes, I clean my house, and I wash my clothes- but I don’t let it control me anymore. Life is not measured by the cleanliness of my house, but rather by the happiness of my children. And by the way, I still have two children- and when we have another child, we will have three children, and so on. My parents have 6 grand children, not 5- etc- leaving Hayden out of that equation is like removing him from our family and that is just impossible…

Since Hayden died, I am now scared. to. death. that Jackson will be taken from me too. I was always somewhat fearful of that I guess in the back of my mind- but I don’t think I ever truly believed anything this tragic could happen to me or anyone I knew. But it most certainly can and I live in fear every single day at the thought of that happening. Sometimes I think God will test me- again. I’ve caught myself saying ‘if Jackson weren’t here I don’t know what I would do’ and then I stop myself- because I fear God will test me and take him from me just to see what I really would do.

I am certain I will never be the same again- how can I be when half of me is no longer physically here. I find I no longer have patience with others useless drama and find it incredibly irritating when anyone in my life does anything that causes it- as if Hayden’s life and the fragility of it all has taught them nothing. I find the ease in which I am able to ‘write people off’ alarming and surprising, but since Hayden died, I just don’t have the time or energy for it anymore. I’m not as friendly, I’m not as kind and not as engaged in other peoples lives as I was before- I have in a way become a selfish person and often forget that other people have problems in their lives too. My empathy towards others sucks-and I truly hate that and feel guilty for it. I almost laugh at this point when in the rare times I do check the  newsfeed in facebook and see people complain about their child not sleeping through the night, or having too many sports practices to go to, or not enough time for themselves- blah blah blah. I guess its mostly jealousy that some people still live such a simple life where those are truly their biggest complaints at that moment. And they are entitled, but I struggle with it. I remember watching The Bachelorette this past season and towards the end the Bachelorette makes a comment after the guy she fell in love with ends up leaving and says something like ‘this is the worst feeling in the world’ and without hesitation I looked up at the TV and said something on the lines of ‘your child didn’t die so you have no idea what the worst feeling in the world feels like’ and then I looked at Rob and just had to laugh at myself- again, my empathy towards others just sucks. I don’t know if my life will ever feel right, or fulfilled or perfect again. I can’t imagine it ever will- but thinking that it won’t is just too painful- to know I could live for another 60 years without him is such an unbearable thought- to know it has only been a year that I have survived without him makes me often fear the many, many years to come. It’s the strangest feeling to no longer fear death but moreso life- and to actually get tears of joy in my eyes at the thought of when it is finally time to be reunited with Hayden. I look forward to that and welcome it with open arms. I’m in no way encouraging it, just that when it happens, I welcome it and picture him greeting me with his big smile and orange hair.

Jackson has changed too. He reverted back within a day after Hayden died to the mama’s boy that was unfortunately forced to grow up a bit faster than he wanted when Hayden and I spent that month in the hospital after only being home for 10 days. He’s struggled with Hayden’s death- gone through his own fazes of confusion, sadness, anger. He’s been in art therapy for over 6 months- and lately has been communicating his feelings to me much better than he had. The greatest gift Jackson can give to me in this life is to never forget Hayden and to forever honor his memory. Jackson still dreams of Hayden and prays for his heart and his head to feel better every single night- the same prayer he’s been saying for over 17 months. I don’t know how long he will dream of Hayden or how long he will pray for him- but every day it makes me smile and cry- and I hope it never ends. He has become my protector - constantly giving me kisses all day long- on my arms, my hand, my legs- any part of my body he can reach at any given moment. He makes sure I have food, that I have a pillow and blanket when I am resting on the couch, that I am taking care of myself and that I am happy- and it is because of him that I am able to be happy. This four-year-old boy has become a caretaker for his grieving mother. He is the most amazing 4 year-old I have ever known. Yes, he still gets time outs, picks his nose and wipes it on my couch, still gets toys taken away- because he is in fact a 4-year-old boy- thankfully- but he and his brother are my heroes- equally-and for very different reasons.

I can’t and won’t speak for Rob in the way it has changed his life, but I know that I can say that Hayden’s death has forever changed this family- in so many ways- but one thing has remained a constant- we are surviving it all and doing it together- picking each other up and placing one foot in front of the other. 

So, how exactly did we get through this unimaginable year- first and foremost, we have each other, and that is huge- but we also still have Hayden. That little amazing baby has sent us so many signs that he is with us. For a long time, the only signs I noticed were heart clouds- sometimes I wouldn’t see one for weeks, other times I’d see three in one day- and Hayden knew when I needed them. They make me smile and give me a sense of warmth that I cannot explain. I’ve tuned Jackson into it and he will often yell up to me in the front seat as I’m driving- ‘mommy I see a heart- Hayden’s saying hi!’ and he too gets excited at the site of them. I try to get as many as I can on camera but sometimes they are gone by the time I get it out. He’s apparently still camera shy :)

Right before Mother’s Day I went to see a medium- and she told me Hayden sends me white butterflies- me being a skeptic I argued and said ‘no he doesn’t he sends me heart clouds’- she then said, ‘well, he’s telling me to tell you to keep your eye out for them.’ I kid you not, white butterflies have popped up all over the place since then. Mostly when Jackson is frolicking in the yard or at the park or with his friends- here out of nowhere comes a small white butterfly dancing in the air with him- and to me it represents them playing together. Jackson is also hip to these signs from Hayden and gets so incredibly excited when he sees one- telling anyone around that Hayden is saying hi and that he loves us. So…maybe the medium was full of shit, but maybe she wasn’t. And I don’t care either way- the feeling I get when I see Jackson chasing around a white butterfly and playing with Hayden fills me with a happiness I rarely get these days and I know it comes from Hayden and that’s all that matters to me.

We have also been so blessed like I mentioned earlier with a great support system. We are so incredibly thankful for all the Hayden fans out there- family, friends and complete strangers- who have helped us with the only thing I know to do- and that is raise awareness for Hayden and the other children out there who are fighting CHD’s or have sadly also lost their fight. We have had a crazy successful first 10 months and are so thankful to all of you for your dedication along with us- it speaks volumes- we recognize who you are and are so grateful that you have chosen to support us in this way- it has not gone unnoticed and truly has shown us that you care.  So when you read this and think ‘I wish there was someway I could help take away their pain’- this is how- help us raise awareness with our foundation- it doesn’t take away the pain, but it lets us know that Hayden was important to your life too, and that brings us joy. 

We are thrilled to be joining forces with two other amazing heart organizations
 to host one HUGE Blood Drive!!!
Ellie's Heart 
and
Nolan Heart of Steel 

Date: Saturday October 18, 2014
Place: Genetti Hotel-
200 West Fourth Street, Williamsport PA
Time: 10am-2pm

More information on how to make an appointment will be posted soon!

Hayden's Heart Car Wash!

Hayden's Heart is honoring Bryn Hamre at our Second Annual Car Wash!

Date: Saturday September 6, 2014
Location: VFW in North Arlington
222 River Road, North Arlington NJ
Time: 9am-1pm

Bryn Hamre, 7 month old daughter to Brandon and Kellie (Richardson) Hamre and sister to Connor, was diagnosed with an Atrioventricular Canal defect, a congenital heart defect commonly associated with Trisomy 21, Down Syndrome. When Bryn was just 4 months old she underwent her first open heart surgery at the Children's Hospitals and Clinics in Minneapolis, MN in order to repair the AV Canal defeat. Due to complications, Bryn was hospitalized for over 10 weeks and underwent a secondary heart surgery at 5 months old to repair a ruptured mitral valve, with more surgery likely needed. The family has incurred many additional expenses due to Bryn's medical care, travel costs, and lost wages. This debt will continue to mount for some time to come. Bryn has overcome so much, but yet has many hurdles ahead.

We hope you can stop by on September 6th to help support Hayden's Heart so that we can help support Bryn and her family. 

tbt 1.15.13- 'final three days'

For over a year, I have made it my priority to post updates, messages, photos, progress, setbacks, etc about Hayden to his what I call 'fan club'. Through it all I have truly tried to stay positive with each one, giving the facts and asking for prayers. Since the day Hayden's life took a tragic turn, I have barely posted a thing. Very few people know what happened those last three days of Hayden's life.  Hayden has been gone for almost five months and I post pictures when I can and ask for prayers for others when I can but still have not completely broken my silence and let his fans in on his last three days of life. I started writing this a few months ago after I went to a fundraiser for Hayden hosted by friends who just wanted to help. I realized, as I was there that almost everyone there had no idea what really happened to Hayden- what really went wrong. And I then realized that the 50 people there are apart of a much larger group, over 20,000 now, who have no idea how the boy that they have followed, prayed for, supported and loved spent his last three days. Some of you have followed Hayden since the middle of November when he was just 21 weeks in utero and know so much of Hayden's journey- and it was and is through your love and support that we kept as strong as we did and are. I feel the need to let you in on his last days with us. So, because I think you all deserve to know...

 Hayden's last night at home was Sunday, August 12th. He had a very rough night sleep- awake off and on, cries here and there- all I chalked up to teething as he was starting to get his 2 bottom teeth in, like a normal 5 month old- just like his older brother Jackson. That morning I asked Rob to check Hayden's oxygen levels and weigh him- something we did daily interstage but being a post Glen baby, it wasn't supposed to be necessary- we actually weren't even supposed to technically still have our pulse-ox or scale. His oxygen was around 76%- which is acceptable for Hayden so we went on with our daily routine- Jackson watching some early morning cartoons and Hayden, after refusing the bottle, getting his feeds through his NG tube. I was sitting in front of him talking with him and he just seemed a little off- not the typical smiley guy he usually is. After a few minutes, he turned his head to the side and projectile vomited quite a large amount. I looked up at the feeding pump and it said he had been fed around 30ml- and that’s pretty much what came out of his mouth. At that point I knew something wasn't right. I got the pulse ox back out and put it around his foot. He started out at 72% and then it just started going lower and lower. 68%- what? change pulse ox to another foot- 65%- change actual pulse ox- 57%- try it on Jackson (who was standing overtop of me staring) 98%- shit- the pulse ox is working. In between all of this I am yelling to Rob 'should we go? He can't be this low, he isn't even blue!' again tried it on him- 45%- that began the mad dash out of the house- Jackson in his pj's and throwing some of Hayden's stuff in a bag. Off to Hackensack we go- in the meantime I am on the phone with CHOP telling them what is happening and that we are on our way. We arrive at Hackensack and they put him on the pulse-ox. 33%- for anyone who doesn't know what these numbers mean- a heart healthy person is usually close to 100% full oxygen.  They immediately hooked him up to some oxygen and got plans ready for our trip back to CHOP- after only 18 hours of being back home.

Hayden and I flew to CHOP a few hours later and I still have a terribly hard time looking at the pictures of us heading there in the helicopter- knowing that was a sign that we were going to the best place for him to get help, get better, and get home.

Once we got there, they further stabilized him on oxygen and began trying to figure out what was going on. He only needed a little oxygen support, so we were placed in the CCU- step down unit of the cardiac floor. After being assessed, they decided he had a little build up of fluid in his left side of his lungs- but that nothing else seemed off, so we were to stay the night at the hospital and he would go ahead with his g-tube the next day, as long as he didn't vomit anymore or have a fever. The next morning, he was still on track since he had a normal night for Hayden. He was off and on the oxygen all night and morning, but nothing too serious- the decision was made that he would go in for his gtube at 12:00 and after recovery, he would get an IV dose of lasix (medicine to help get rid of the extra fluid in his lungs). We assumed at this point, we wouldn't go home Wednesday like we had thought, but if all went well- we would be home Thursday and ready to start our new lives- NG tube free and start working our way out of our bubble!!

Hayden spent the morning with us- nothing exceptional- just hanging out snuggling, sleeping, playing. At 12:00, we took him to get ready for his procedure- it was to take about an hour, then a few hours of recovery, and then back to our room for the evening and night. Sending Hayden into any procedure is tough- so as we watched him walk away, I kept thinking- get through this one buddy- and we are golden.

The g-tube placement went as planned- he did great! We went to spend some time in recovery with him and he slept through most of it. When he woke and was recovered, I took a picture to send to my family- he wouldn't smile yet, but he was in a good place and ready to go back to his regular room! All great things...

On our stroll back to his room, the nurses and I commented on how he hadn't yet smiled, and we were all trying to get a good one out of him. Right before we made the turn into his room, he looked at me and gave me his biggest smile- we all celebrated that Hayden was back! Little did I know that would be his last smile- it is etched in my head and I will never, ever forget that moment.

Back in our room, Rob and I decided we would get a Baby Einstein’s video from Child Life to entertain him- he'd never watched one before but we thought he might enjoy the colors etc- and that way he could just relax and continue to recover. After we got him set up, I received a phone call from his cardiologist out of the New Brunswick office of CHOP. I filled her in on the days events and as I was on the phone, I noticed the nurse and Rob standing over Hayden and saw his oxygen was back in the 60%'s. I quickly got off the phone and rushed over. They tried to up his oxygen and it wasn't working. They called for the doctors and other nurses and the room filled up so fast. I was next to Hayden's head trying to calm him because at this point they were trying to hold oxygen masks on him and it wasn’t working. One of the familiar nurses said 'Let mom hold him, he always calms down when he is in her arms'. This was one of the last times I held him. I just rocked him and tried to calm him. He calmed down, but his oxygen only improved a little. They did x-rays and an echo and found that Hayden's fluid in his left side built up pretty badly and he needed to be transferred to the CICU part of the floor immediately and would need a chest tube placed to drain the fluid. I immediately started sobbing- all I kept thinking was just let this poor baby alone. He's getting his bottom teeth - can't he just get them like a normal baby without all this other stuff along with it? A chest tube is placed during surgeries to drain fluid and as its not major surgery; it certainly isn't a good thing that it needs to happen. I walked out of the room as they started to wheel Hayden to the CICU and collapsed in Rob's arms. I was hitting my limit for Hayden and just couldn't believe he had to go through any more than he already had. As I was walking fast behind the crib, his neurologist grabbed my arm and said 'just another bump in the road'...two days later that same man would be the person to tell us Hayden's ultimate fate.

Once we got into the CICU, things went fast- they again asked me to hold him to try and calm him but it was only a couple of minutes. They were trying to get an emergency IV placed and couldn't get him to calm down. Once in my arms, he did calm down a little- had I known then what was about to happen, I would have never put him down. I had no idea that would be our last true snuggle- one where he was still my Hayden. Once they were ready, we had to step out of the pod for the sterile placement of the chest tube. We stayed right outside the area and waited. I spoke with a Dr- turned friend- who said it would only take a few minutes and the fluid that acquired would most likely be drained just as quickly as it built up. I heard him making noises in there and she said that was common but I guess I looked pretty worried so she went to check on things and see how everything was going. Within 30 seconds we heard the code bell. Since the first time I heard that noise it has forever haunted me. It is a high pitch bell type noise that I cannot get out of my head. I remember being in feeding therapy with Hayden after we got home from his Glenn and some noise there sounded just like it- I immediately clammed up and anxiety set in. Whenever that bell has gone off, it has been bad news- I can't tell you how many times I have heard a mother in the hall wailing at the sound of that bell. Nothing good comes from the code.

As soon as I heard it, I looked up to see the light outside of Hayden's pod and heard the monotone woman’s voice on the speaker saying Hayden's pod and bed number. Any CHOP family can relate- the words 'attending 6 south pod 4 bed 2' repeated over and over again makes me sick. Here I am, that mother I have seen so many times before, collapsed in the hallway wailing for my baby. After a few minutes, we were approached by a nurse who told us his heart had stopped. A few minutes later, we were told that they think the DR inserting the chest tube had punctured his heart with the catheter for the tube. Soon after we were asked if we knew what ECMO was. The next thing we knew we were being told that Hayden would be going into open-heart surgery in a few minutes but meanwhile they were still performing compressions on him. They said they would allow us to come back and see him while they waited to transport him to the operating room. We walked back after about 30 minutes of the code going off and there was my baby- white as could be- with a nurse standing over him pushing on his chest. His eyes were slightly open so I began talking to him, crying next to him. I zoned in and out the entire time I was with him. One minute I would be talking to him, telling him to just get through this one more setback and I promised him I would take him home and would let him rest- let him grow up like a normal baby the best I could. The next minute I would realize where I was and just stare at the people trying to save my sons life. It was a complete out of body experience. After about 15 minutes of standing with him, touching every part of his body that I could, promising him everything would be ok and that as soon as I could, I would hold him and never let go, and I would take him far away from this hospital- back home for good, the doctors said it was time to take him, that everything was ready. The doctor performing the CPR told me I could give him a kiss on his head and she contorted her body to make sure I could do that, as she continued to press hard on his tiny chest. Rob gave him a kiss too, and we watched as they wheeled our baby down the hall- not knowing what was to happen- only praying for the best scenario possible but knowing this was bad- so very very bad.

Our nurse walked us to the waiting area and said as soon as she knew anything she would come and talk to us. I thought the waiting could take all night- with his other surgeries we knew a time frame- with this we had no idea- would we be waiting for 2-4-8-12 hours?? When we got to the room, we started figuring out how to tell everyone in our family what was happening. I remember calling my dad first and when he answered all I said was ' please be strong right now as I need to tell you something and I need you to be strong for one minute.' I proceeded to tell my father yet again horrible news about Hayden. I started to feel like almost every time I talked to him, I had bad news. It was one thing after the other for poor Hayden. I then told him what had happened the best I knew at the time, asked him to call my sister and tell her, and that I would call them as soon as I knew more. They asked if they could come down- and I said not right now. I didn't wait to see anyone but Rob and Hayden. I was in so much pain that I couldn't fathom seeing anyone else. Rob called his family and filled them in and then we sat there in silence holding hands, just waiting for what was to come.  At one point our nurse came in to give us an update that he was successfully on ECMO and the surgery had started. It wasn't more than a half hour later that one of the attending doctors came in to tell us that there was a hole in Hayden's heart and that the surgeon was able to fix it. He said the surgeon would have the answers we needed but he didn't want to leave us waiting longer than we needed to so he came to tell us that the surgery was overall a success.

Soon after, the surgeon came in. She walked in front of us and kneeled on the ground. She put her hand on top of mine and her other hand on Rob's knee. She confirmed that the Doctor who attempted to insert the chest tube had punctured his heart. There was a hole in his heart but she was able to immediately repair the heart and his heart was now beating on it's own! Now we worry about all of his other organs and wait to see how they respond to the extended CPR. She felt his kidneys were working because he had already had urine output. It was mainly his brain she was concerned about. But she felt confident that the CPR he was receiving was top notch and she felt good about what was to come. She gave us hugs and said we could go back to see him.

Walking into that same pod seeing my sweet sweet baby was like nothing I've ever prepared myself for. He had blood coming out of every opening possible- his freshly placed gtube, his chest incision, the incision on his side where the surgeon had just gone into, his nose- everywhere. It was a disaster. There were nurses working on him and beeping everywhere. More machines and medical pumps than I have ever seen next to Hayden. He no longer looked like himself with all the swelling and he was still so white. He had an EEG on his head and his one finger was black from trying to place IV's in the hand. Rob actually walked away at one point because the sight of our precious son literally made him want to throw up.

I walked up to him and spoke to him, telling him I was here and I loved him so much. Begging him to fight like the warrior we all know he is and promising him yet again to just get through this last big battle and we would go home for awhile until he was strong enough for his last surgery. It was tight in there and at one point I just felt like I was in the way of what they were trying to do for Hayden. Rob suggested we go get some sleep and come back in a few hours once they get him all settled. The nurse said now we wait and see what he does. They wanted to see if he would 'wake up' on his own and once he did, they would give him more meds to sedate him but for now they needed to see his brain activity and see if he would wake on his own. I still remember having such a hopeful feeling- like of course he will wake up- it’s just a matter of time! So, Rob and I went to the sleep room and cried ourselves to sleep. I woke a couple hours later and went back to see if there was any development. He still hadn't tried to wake but they said that was to be expected. A few hours later Hayden's neurologist came in to check his status and said his brain function was sluggish and he wasn't responding to light- but that it was all too soon to tell. Wednesday was one of the longest days of my life. Waiting for some sign of life out of Hayden- anything. We just stood there waiting. A lot happened that day that I can't completely remember- so many people came in to see me- crying with me- wondering how could this have happened? They preformed echo's and tried to wean him off ECMO. Later in the afternoon it was decided Hayden would need to go to the OR again to drain some of the fluid in his lung cavity. At that point, before they took him down again, his anesthesiologist moved mountains so that I could walk around to where his head was to hold his head in my hand and give him another kiss- just incase this was the last time.  When they took him, they then informed us that we would be transferred to a private room in the CICU- looking back, we should have known right then that Hayden probably wouldn't make it. Not always, but typically, the most critical babies stay in pods- ones that are about to die move to privates so the families can have their last moments with them alone. Rob even fought them on this- saying isn't it better to stay here and have more eyes on him? We just didn't see the signs then- but we see it loud and clear now.

The surgeon was able to relieve some fluid from his cavity but was unable to get him off of ECMO. When they brought him back in the room right after surgery, they allowed us to stay- another sign we should have seen. He still showed no signs of waking up, and was on no pain medicine at this point. His doctor came in every hour to check his eyes to see if he would respond to light. Every time she came in she would greet him- "Hayden, It's doctor... I am here to check your eyes, I am going to shine a light on your eyes. it won't hurt you at all.' looking back on that, I know she knew it was over for Hayden- that his brain was gone and he couldn't hear here. But that she still had respect for him and for us is something I will never forget.

We spent the rest of the afternoon and evening listening to Hayden's music, crying with him, talking to him, signing to him. Hayden started having seizures at some point on Wednesday. He would start twitching and this went on for a few hours until they figured out what it was and how to control it. Otherwise, Hayden made no movements all day long. Later that night, that same doctor that sat with us while the code was going off, the same doctor that was with us back in May when Hayden recovered so horribly from his cath procedure, a doctor we have grown to love and think of as a friend, came in to check on us. Rob looked at her and said 'You have always been honest with us from the first time we met you back in March and we have appreciated that and respected that more than you will ever know. We need you to be honest with us about this and tell us what you think is going to happen here.' She looked at us with tears in her eyes and sat down next to me. She said this isn't going to end well. In her experience, she has never seen a Glenn baby recover from that long of CPR. The way the body is set up now, the blood that went to his brain during CPR does not circulate well enough and she has never seen a baby come back from something like this. I lost it, and Rob asked her to be honest with us one more time, and if we get to the point where it is time to say goodbye and we are blinded by it, to please tell us. She promised, gave us hugs through her tears and walked out. I wasn't sold yet though. I walked over to Hayden and asked Rob to watch the EEG machine to see if the lines monitoring his brain activity moved if I talked to him. I did everything I could, I sang to him, talked to him, talked about his brother, kissed him, held his hand- and then I looked back at Rob, and I will never forget the look on his face and watching his head shake back and forth. I laid my head on the bed and sobbed.

The next thing I did was call my best friend and starting preparing for what I thought could happen in the next few days. We do not have family pictures and I wanted them- so I called my best friend, briefly filled her in on the days events and asked her if she could ask her sister to come take pictures of our family when the time came. Wouldn't be for a few days, but I wanted to have her ready. Then I invited her to come as well as she is also Hayden's godmother, I also told her to extend the invite to our other two best friends as well.  My mom, dad and sister had already had plans on coming the following day to see Hayden.  They had Jackson with them in Pennsylvania and they were leaving him with my brother in law. Jackson was only to come to the hospital on Hayden's last day of life.

The rest of that evening, I leaned on Hayden's bed, holding his hand, crying, talking to him, in such disbelief that this was actually happening. We had a wonderful nurse who made feet and hand imprints for us during her shift. She often had tears in her eyes and I knew she knew before her shift even started that Hayden's days were numbered. Rob and I finally went to the sleep room around 3am to try and close our eyes for a little while. I remember laying there just wailing so uncontrollably one minute, and the next minute I would sit up and just shake my head saying no, no this cannot be happening. After some time, I finally cried myself to sleep while Rob held me. I woke up around 5:30 and headed over to Hayden's room. I talked with the nurse and doctors and still no improvement. Hayden's neurologist was coming in a few hours to do a complete neuro exam and we would know the next steps needed- CAT scan? MRI? But in the meantime, we just had to wait. They gave us another top-of-the-line nurse for the next shift, one Hayden had flirted with every admission and we got to know her very well. It was almost like part of our family was helping us say goodbye to him that day. For the next couple of hours we sat with Hayden, sang, talked to him, the same thing we did the previous day. Then his neurologist and team came in to do their exam. I looked at Rob and we both thought it would be best to walk out. I guess I just didn’t want to have to hear what they were saying. We went to visit a fellow heart mom whom we have become very close to- she sent breakfast over for us that morning, knowing all too well that days like this the last thing you think of is food- but also how important it is to try to eat.  She was all caught up on what was happening and when we told her that Hayden was having his neuro exam right now she looked at me and said “Your his mother- do you think his soul is still here with us?’ When I answered her ‘no’ it was the first time I was actually admitting that this was over. A few minutes later we walked back to our area and were planning on just waiting outside the room, figuring it would be awhile but we wanted to be there as soon as it was over. We were shocked to see the neuro team walking towards us. They were already done with their exam. No CAT scan or MRI was needed. They were stopping the doctor’s patient rounds and wanted to meet in the conference room across from Hayden's room. Not good. I have to be honest, I don’t remember a lot of what happened in that room. I remember sitting next to rob, holding his hand, putting my head on his shoulder and closing my eyes. I still couldn’t bear to hear what I knew they were about to say. We were only in there for a few minutes but from what I gathered from Rob and the few things I did hear in that room was that Hayden had no brain activity left. His eyes showed no movement and his EEG also showed no change in movement since first put on his head Tuesday night. Hayden was brain dead.  He would be here as long as we chose for him to be here but basically it was our call as to when to ‘pull the plugs’.  No hope was given that there was any other option.

Rob helped me walk back into his room and I immediately got onto the bed and just laid with him. I had been so afraid of touching him and moving him, messing up the medical equipment the last 36 hours and now I just didn’t care. I was going to get as close to him as I possible could. Rob made them get the EEG off of his head immediately since obviously that was no longer needed. I held his hand, touched his head, closed my eyes and took Hayden and I far, far from that hospital bed- I thought of Hayden's smile when I woke up in the morning, his soft laugh, the way his entire body would get excited to see me or hear my voice. I reflected on his first smile that took place just two rooms down. His first two teeth that came in two days ago, when this whole nightmare began, the few times he actually breast fed- and what a miracle those few times were- and then it hit me- I need to pump- and then I realized I would be pumping for my baby who would never drink it. And that I would have to pump for a while to wean myself off- and thought what a dirty knife that is to dig into someone.

The next couple of hours are a blur- I really took myself out of that room and cant remember how long I stayed away. The next thing I remember is hearing familiar voices by Hayden’s bed. I tried to open my eyes and remember feeling so foggy. Two of my friends were standing there sobbing. Soon after our other friend came and I finally got out of bed. I had to pump and once I was done I put the girls to work. We got some supplies from child life and we started getting hand and feet prints from Hayden. They also brought in his last beads of courage and we picked them out. We spent two hours crying, smiling at different memories, and making new memories before Hayden passed away. I kept joking saying I had to pack in all the arts and crafts for his whole life in one hour- and I was glad we did. It distracted me for a bit and also gave me some irreplaceable keepsakes. And anyone who knows me, knows crafting is ‘my thing’. Soon after our family arrived and came to see Hayden. Then it all hit me again- what was happening and why. The next hour or so our family said goodbye to Hayden while my friends kept Jackson busy in the waiting area. Hayden’s anesthesiologist told me I could now hold him and sit with him until we wanted to turn the monitors off.  Holding him was an ordeal, to say the least. It took his anesthesiologist and nurse about 5 minutes to transfer Hayden to me- all the wires, ecmo, ventilator- it was unreal. It should never be that hard to hold your baby- ever. And once she placed him in my arms, I didn’t move. I think I sat like that for an hour or two- I don’t even know. The next thing that happened was the chaplain came in and surrounding Hayden, Rob, and I were our parents, siblings, and two of our friends. She gave a final blessing for Hayden, said some prayers and read some scriptures. This same woman baptized Hayden almost exactly 5 months ago to the day. After she was done, everyone gave Hayden a kiss goodbye and walked into a waiting area by his room. Rob and I sat there with him and stared at him- wondering how the hell did we get here and what are we supposed to do now? He didn’t even look like himself anymore. He was so swollen and so many things were attached to him. I just wanted everything off of him and hold him without the wires and tubes. Maybe a half hour later we looked to his nurse and told her it was time.  I remember watching his nurse walk over to his monitors just like they do on the movies and turn the volume down so we wouldn’t have to hear the last beeps signaling the end of his life. She slowly turned the ventilator off and they clipped his ecmo together. Within 30 seconds Hayden's lips started to turn blue. It was literally instantaneously. As Hayden took his last breaths, I kept my eyes on his face, watching as this precious boy who we brought into this world only 5 months and 4 days ago leave this world right before our eyes. I cried and looked at Rob after he was gone- and the look he gave me was exactly what I was feeling- broken, devastated and like a part of us just left this earth, too. His anesthesiologist asked me to look at Rob and told me not to look away from him until she said it was ok to. So while I held my lifeless baby, I stared at my husband and she extubated him right there (took out his breathing tube). It was the first time I got a clear view of his face since Tuesday and he truly no longer looked like himself. He was swollen, bruised, white, and just did not look anything like the baby boy we knew and loved.

We sat there with him crying over top of him for another 20 minutes- not long. I knew they were going to completely take the ecmo off of him and get him ‘cleaned up’ – then we could sit with him for as long as we wanted.

So we handed him over to his nurse and I walked out of that room and began trying to figure out how I was going to tell Hayden’s 3-year-old brother that although he would always be Hayden’s big brother, Hayden was no longer with us.

Jackson could sense something was wrong- everyone was sad, crying, and something was wrong. Combine that with all of his family in the same place and he was wired. He was running around, being silly and as I look back on it, I realize this was just his way of expressing himself at the time. I tried to talk to him a few times- and I don’t know what I expected out of him- certainly not for him to understand or comprehend anything- but I kept telling him that Hayden got sick and the doctors couldn’t fix him this time so we believe when someone dies they go to heaven to be with God and that’s where Hayden is now. This was the first time Jackson ever heard of heaven- he knew who God and Jesus were but not heaven. So of course he just looked at me and said ‘ok mommy’. About 45 minutes later, I prepared him to go in to see Hayden. I told him again that Hayden went to heaven but that we were going to go say goodbye to him one more time and tell him we love him and hold him. When we walked into the room, the nurses handed him to me in his blue elephant swaddle only and Jackson kissed his head but was still a little off in his behavior. We sat with Hayden on the couch in the room and I just remember Jackson kept looking at me and saying ‘he’s sick mommy’- in this almost disgusted tone. My friend was there capturing these last moments with Hayden and our family- I was desperate to get a picture with my entire family together. Other family members and friends came in and out of the room- the entire time I sat holding Hayden. Nurses, doctors and other hospital friends came to say their goodbyes- all with tears in their eyes and kind words to part with. I remember saying goodbye to one of the nurses and commenting on how awkward this parting was. Any other discharge I would say ‘ok, see you in a few months’ or ‘hope we don’t see you for awhile!’ now I would do anything to be able to say to them ‘see you in a few months’. I wasn’t sure how to say goodbye to these people- knowing chances of me ever seeing any of them again would be so rare. Most of these people had become like family to us- when someone cares for your child in such a way that they did, they become family.

Slowly the room started to empty. Hayden’s nurse kept reassuring us we could stay there as long as we wanted- if that meant all week, then that’s how long we stayed. This was our room until we were ready to leave. And every time she said those words to me I would say ‘what does that mean? How will I ever be able to leave this place without him? How and when will I ever be ‘ready’??

As our family and friends said their final goodbye, Rob and I continued to sit in Hayden's room. The odd thing was, we were sitting there, I was holding him after he passed away for over four hours, and after some time I started feeling like it was just another day in the hospital. I was sitting on the couch, holding a sleeping Hayden. I think that’s what got me through the afternoon and evening visitors. So many of Hayden's caretakers in one form or another came to say goodbye and holding him in my arms while they came gave me strength.

And then it was just the three of us. We cried together, just sat there in silence. After awhile, Rob looked at me and said ‘you think I could hold him one more time?

I’ll never forget when he asked me that. Rob had been so selfless when it came to my needs with Hayden. When Hayden was born, he was only able to be held for 60-90 seconds before he was taken away, and I gobbled up each and every second. When we were able to go to his pod for the first time in the CICU and were given the green light to hold him, I spent hours with him in my arms before rob even got a second with him. The night before Hayden's first surgery we both pulled an all-nighter to be with him, and I again spent almost all of it holding him. After Hayden's caths, and his second surgery- it was always me who held him. And the moment Hayden took his final breath, it was again in my arms. I will be forever grateful to Rob for giving me that gift.  But Rob of course needed his time too and when he asked if he could hold him one last time, I felt selfish and immediately said of course. I went to stand up to give him to Rob and as I did that I realized how heavy, stiff and cold Hayden had become. It had become morbid to me and was no longer beautiful. As soon as Rob was ready to hand him back over to me I looked at him and said it’s time. He went to get our nurse and I said my final goodbyes to my baby boy. Our nurse came in and changed Hayden's swaddle out so I could have the last one that he wore to sleep with, and I still do every night. I held him again for a few minutes and then asked her if she would hold him while we left. I passed him over, walked towards the door, and looked back. His nurse was holding him and trying to smile at me. I walked out and Rob closed the door behind us. So I had made it out of the room- now what? I just stood there and couldn’t move- I felt paralyzed and didn’t know what to do. I couldn’t stop crying. At one point I started wailing and fell to the floor. Three of our friendly nurses surrounded me and helped pick me up. The next thing I knew they were walking us out the back way. Rob had asked them to let us go a different way- otherwise I would have had to walk all through the entire CICU- passed all the private rooms, pods, nurses station- everything. So we snuck out the back basically and Rob held me up the entire way. I continued to sob down the elevator into the car and out of Philly. At one point I stopped wailing and just sat there. Unsure of what just happened and did I really just leave that place without him? The drive home was torture- pure torture. And I guess its fair to say that the following days, weeks and months have remained torturous as well, some more than others.

Coming back to this house without him and with everything still in its place for him, ready for him to come home again, was as you can imagine horrible. His medicine box still full of the meds he needed that last day we were at home. His dirty clothes still in the hamper, smelling of throw up that of course I have yet to wash simply because it was the last things he wore here, at home. His feeding pump pole still in the living room and his pulse ox strewn on the floor just as it was when we had walked out.

I could continue this blog and write about every single detail that happened over the past 5 months- the phone call I had with our favorite nurse just 30 minutes after we got home from Philadelphia- she had been on vacation and her plane just landed- the text came through ‘how’s my little buddy doing?’ I could go on and on about the services and the week leading up to it. The weeks following when everyone else’s life went back to ‘normal’ and mine was and still is shattered. The days Jackson just wont stop asking why Hayden can’t come back from heaven? The middle of the month pain of not having him here to celebrate his monthly birthday but instead another month we are without him. The holiday depression that almost swallowed me whole. I could go on and on…how this Thursday will be longer that we have been without him than what time we had with him. This 15-page blog has taken me months to write- so I will end it here and hope to pick it back up with intentions of sharing those moments with you as well.

In closing, I still have not found a reason for Hayden’s passing- I still find nothing positive in it and have not found peace with it. He is not in a better place, and he wasn’t in any pain here before that horrific error to begin with.

So there you have it…the beginning of the end. Some say ‘life goes on’…but for Rob, Jackson and I, the life we knew and loved will never be the same again. We are forever changed for having Hayden bless our lives but we are forever broken that he will never be here with us again…