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…
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