There was no amount
of time that would have prepared me for what was about to transpire in the next
36 hours. I did what I did every single
morning for the past 24 days. I got out
of bed, got ready, ate some breakfast, drank some coffee and then got driven to
Hospital where my son has spent his whole life thus far. But this day wasn’t just another day as I was
going to come to find out. It was the
beginning of the end.
Meaghann was his
nurse again today. Thank goodness! With Kevin not there, I needed to have
someone that I could talk to and cry in front of. I, of course, asked her how his urine output
had been and you could tell that she didn’t want to tell me. He hadn’t had any urine since the tiny tiny
drop last night around 8 pm. I knew
right then and there that this was bad.
This is what happened to Colin.
No urine. His kidneys were
failing. But as Nathan’s mom, I had to
stay optimistic. I had to believe in my
heart of hearts that they would rebound and start working again. Naïve?
Maybe. But I had to stay hopeful;
for both my sake and Nathan’s sake. I
couldn’t give up on him.
With Nathan’s skin
seeming to get worse along with his pitting edema, they decided to give him a
shot of Morphine around 10 am to help with the possible pain he was
feeling. Nathan wasn’t being his wiggly
self and he hadn’t been for quite sometime now, but the Morphine probably made
his lake of responsiveness even more so.
This was a day that I wasn’t going to leave his side. He was still spitting up blood and since I
know the nurses don’t stand over him just watching him, I knew that that would
be my job. Actually, it wasn’t a job to
me. It was an absolute must. There was no way that I would be caught
sitting in the next room doing a crossword puzzle. Nathan needed me by his side and I needed to
be by his side.
As I was sitting by
Nathan with my hand stroking his sweet head, I started to notice that his belly
was getting very purple. This definitely
didn’t look right to me so I called in Meaghann to look at it. She wasn’t sure what was happening so she
called the two fellows, Kim and Andrew, in to take a look. They both were not certain what was causing
the discoloration so they ordered a belly x-ray to make sure that it wasn’t
internal bleeding. After they looked at
him, I took a picture of him and sent it to Kevin. As a new father, I am sure these aren’t the
kind of pictures he was expecting to receive during his workday. Dads are supposed to get pictures of their
babies doing something cute like smiling or snuggling with mom. Not Kevin.
Not this time. He gets these
types of pictures to just add worry to his day.
The belly film was
done around 11:40 that morning. When the
results came back a few hours later, they saw that there were no changes with
his organs. They said it could just be
shadowing from his edema or bleeding under the skin. We were going to continue to watch the blood
that was coming out of his mouth just to make sure that it wasn’t something
other than the blood from his mouth.
I didn’t want to
leave his side but I did end up going down to the cafeteria to get some
lunch. I just sat there by myself and
ate my food. No one knew what I was
going through. It is a hospital so I am
sure I wasn’t the only one in that cafeteria going through something so
unthinkable but you just feel so helpless and alone. On my way out, I
did run into two labor and delivery nurses and they asked how Nathan was
doing. I just shook my head and formed
tears in my eyes. I couldn’t verbalize
what I thought was going to happen soon.
When I got back
from lunch, I noticed that Nathan was drooling a rusty brown color. I’ve said it many times before and I will say
it again…my poor baby. When Meaghann and
I were doing his care, she gave Nathan ‘Fake Tears’. Stevens Johnson Syndrome can dry out eyes so
she wanted to keep them moist, but she couldn’t even open his eyes because the
edema was so bad. Watching it through
the glass, I began to cry. All I could
think was that I am never going to get to see those eyes again. I hated having those thoughts. I would beat myself up inside because I had
those thoughts. How could I give up on
my son? Am I being a bad mother by
thinking that the worse is going to happen?
While being in his
room with Meaghann I asked her what she thought. Could he come out of this? Could he survive? Could he live many more weeks or does she
think it will happen sooner than we would like?
Of course she wanted to be that strength for me that Kevin was since he
wasn’t here, but she also didn’t have a crystal ball. She did do her best to stay optimistic and
told me that there is always a chance that things could change and things could
get better. She did promise me that if
she thought that things were getting bad, that she would tell me to call Kevin
to start heading this way.
A few hours went by
of me sitting next to him, staring at his swollen, blistered and discolored
body through the glass; one hand on his head and the other on his tiny hand,
wishing and hoping that he would squeeze it.
Then Dr. Valentine came in to talk to me. She had this worried/sad look on her face as
though she was about to deliver bad news.
I got out my phone to record her conversation because I knew what was
coming and I knew I wouldn’t remember all the details. Just as she began to talk about his
condition, one of the cleaning ladies decided that it was a good time to mop
and change all the trash bags in Nathan’s room.
That irritated me because I was about to get horrible news and I can
barely hear the Doctor with the rustling of the bags. I literally was about to ask her to leave and
come back.
Anyway…Dr.
Valentine basically just said that she was very worried about Nathan. He was now hour to hour. She said that things had taken a turn for the
worse, even since that morning. The
coloring of his belly was what had her worried as it did me. Something wasn’t right with that. They were going to get another x-ray later in
the evening just to make sure that his intestines hadn’t perforated. This was bad.
This was so hard to hear all by myself.
I could hear it in Dr. Valentines voice that she knew he was nearing the
end. As Dr. Valentine was almost done
talking, I looked through the rooms’ glass and Meaghann looked at me and
mouthed the words “Call Kevin”. With every other sentence out of Dr.
Valentine’s mouth being “I am very worried about him,” I knew it was only a
matter of time.
Dr. Valentine asked
if I had anyone in Cincinnati with me that I could call. I told her that my mom was in town and she
said that if I wanted to call her that she could come in the NICU. So after Dr. Valentine left, I texted Kevin
and said, “Leave Now!” I had been giving
him updates on Nathan all morning and told him I would text him if he needed to
be here. Now was the time that he needed
to be here. He was at work but had his
phone on him like he said he would. He
said he was leaving right then and there.
I am sure he had patients but he just left them with another therapist,
got in his car and drove down to Cincinnati.
Then I called my
mom. She was out with her friend Beth
for lunch. I told her that the Doctors
were letting her come in the NICU to be with Nathan and me, so she left her
friend and drove straight there. When
she arrived, she put a gown and gloves on and came into his room. She gave me a big hug and then went on the
other side of his incubator and looked at him.
I told her that she could reach in and touch him if she wanted too.
Just having my mom
there made my emotions worse. Not only
am I about to loose my 2nd child, our parents are loosing out on
getting to know their grandchildren. In
that moment, I felt like I failed…everyone.
Our brothers will never get to meet their nephews, our parents will
never get to spoil their grandchildren, Kevin will never get to play hockey or
anything with his sons, and I will never get a chance to do all the things a
mother does with her sons. But most of
all, I felt like I failed my boys. Now I
know there was nothing I could have done, but as the one that carried them in
my womb and grew them till the day they were born, you just can’t help but
think that SOMETHING you did caused this.
Was it something I ate? Should I have not had that 1 cup of coffee each
morning? Should I have exercised
more? Should I have had more protein in
my diet? What was it? What did I do or not do that caused my boys
to be subject to such a horrible short life?
My mom was in and
out of the room while I was planted right next to Nathan. How could I leave his side now? My time with him was limited and I didn’t
want to waist a minute of it. So there I
sat.
It wasn’t long
before I looked up from my baby and saw Kevin walking into the NICU. He was still in his work clothes. He came into the room and gave me a big
hug. I just started to cry. I honestly didn’t think this day would happen
when I had to call Kevin to leave work to come basically say ‘Goodbye’ to our
son. There were days that I really
thought that we were going to take him home with us someday. I couldn’t come to say the words out
loud. It was so hard to imagine life
without him.
I know I have had
these thoughts once before and I was having them yet again…what do I do about
pumping? Was it still worth it? Was it worth time away from my baby to get
milk that he may never drink? But then,
once again, I had to pull myself together.
If I said that, I felt like I was already throwing in the towel on
Nathan. Even when all the facts were
staring me right in the face, I still had to believe in a miracle that
something out of this world miraculous was going to happen and Nathan was going
to bounce back. Because of those
thoughts, I went to go pump in the room.
Luckily it was just around the corner so wasn’t going too far. I made sure that Kevin knew to come get me if
anything happened.
When I finished
pumping, I came into Nathan’s room to find a very tall man standing over
Nathan. It was Dr. VanHook. He had heard that Nathan wasn’t doing well
and came to say his goodbyes and see how we were doing. What a wonderful man he was. This is yet another example of the excellent
care that we had received while at UC.
He didn’t have to come but he did.
His heart is so big and caring that he came to see our sweet little
boy. He looked so sad standing over
Nathan. He knew just how much Nathan was
loved and he was devastated that our journey was ending up in such
tragedy. He gave us a hug and went on
his way.
I didn’t know this
until later, but my mom ended up stopping him in the hallway on his way out and
she asked, “What are the chances of something like this every happening to
Kelly and Kevin again?” He replied, “Less
than 0%. This was a very rare situation
and for her to get pregnant with identical twins with that kind of placenta is
highly unlikely.” My mom didn’t want to
ask that in front of me but I think she was happy with the answer he gave
her. Then my mom watched this 6’ 4” man
walk out of the NICU with his head down and heart heavy.
It was time for
shift change and they ended up asking me if there was a nurse that I would
prefer to look after Nathan that night.
I asked who was working and when they gave me the list, I asked for
Kim. She was the sweet girl who was
pregnant with her first child. I really
liked her and she was so kind to Nathan.
A couple minutes later as I was sitting next to Nathan, I saw Kim walk
into the hallway that divided the 4 isolation rooms and she had tears rolling
down her face. She looked at me and
waived me out. I got up and went to go
talk to her. She began to tell me that
she can’t take care of Nathan because of all the unknown going on with him, she
can’t risk harming her unborn child if Nathan were to have a staff infection or
anything else that could harm a fetus. I
of course understood and gave her a big hug.
I think she knew too that it was only a matter of time before we were
saying “Goodbye” to Nathan. I could tell
she felt very bad but I 100% understood her reasoning. I’d do anything to protect my child as well.
They ended up
putting a nurse that I had never met with Nathan but they all promised me that
she was very sweet and good at her job.
And with that nurse was that student that looked after him the night of
the Christmas party. I can’t, for the
life of me, remember either of their names.
It was fine that I had never met the nurse and hadn’t built a trust with
her yet, because I was going to be right there…all night. I was dreading going to sleep. That would be hours that I wouldn’t be right
next to my baby. In my head, there was
going to be no sleeping for me that night.
After his new
nurses and Meaghann discussed Nathan and got them up-to-date on him, we had to
now say goodbye to Meaghann. Boy I wish
she was working the next day but she wouldn’t be back for a couple days and I
was pretty sure we wouldn’t make it that long.
We each gave her a big hug and thanked her over and over again for being
so wonderful and tender hearted with our family and Nathan. It was sad to see her go and I think she knew
that when she returned to work for her next shift, that Nathan would not be
there.
It was getting to
be later in the evening and we hadn’t eaten anything. I honestly wasn’t even thinking about food
and there was absolutely no way I was going to leave the hospital to get
food. The cafeteria was already closed
so my mom offered to run to McDonalds to grab something for us. I asked them if since we were the only ones
in isolation if we could bring the food back here and eat. They thought about it and it looked like they
were going to say ‘yes’, but actually decided ‘no’ since they need to do
everything to prevent bugs. I get that
but I wasn’t looking forward to leaving the NICU for even 10 minutes to eat.
My mom returned
with the food and she was waiting for us in the family waiting room, which was
literally right outside the NICU doors.
I told Nathan’s nurses that if ANYTHING, and I mean ANYTHING, changes
drastically for them to come get us. It
was a bonus having 2 nurses so one could stay with Nathan and the other could
run and get things or what not.
We hurried into the
family room and began to eat. I was
silent. I couldn’t believe that we were
basically just waiting around for Nathan to die. As a NICU mom, especially a mom with a baby
with a case as severe as Nathan’s, you go through so many emotions every single
day. I think the will to survive and be
strong for my child was the biggest emotion of all and I tried my darndest to
feel hopeful and positive throughout my days but then the realistic part of me
would come out as well. I hated that
part. I think I wanted to live in a
dream world but I knew I had to wake up and look at what was right in front of
me. My son was going to die and we were
just waiting for it to happen.
I sat there eating
my cheeseburger and began to cry. It
wasn’t fair. Why do I have to go through
this pain, AGAIN! I already experienced
this with Colin and I really didn’t want to go through it again with
Nathan. I would have no child to make me
happy the next day. This is hard for me
to admit and some might think I am a terrible mother for thinking this, but I
really just wanted it to happen soon. I
know that is so selfish of me and a terrible, awful thing, to wish that your
child would die soon but I knew it was going to happen and I just wanted to
start the grieving process and I honestly wanted Nathan to be at peace. I was not going to leave his side until he
passed peacefully so if it was going to be days, then their would be very
little food intake for me, no showers, and a hell of a lot of crying from all
the pain I was feeling.
There is absolutely
no way to describe what I was feeling but if I had to pick a few words, I would
say I felt defeated, betrayed, pissed, and confused. All these emotions were eating me up from the
inside. I continued to ask myself,
“Why?” Why is this happening to me? To
us? Why is this happening to
Nathan? Why were we chosen to go through
this unbelievable amount of pain and suffering?
There was no answer.
These questions
couldn’t be answered and my feelings couldn’t be changed. The inevitable was going to happen and there
was nothing I could do about it. Love,
unfortunately, was not a cure. If it
were, Nathan and Colin would be completely healthy boys. In this case, love cannot conquer all; love
cannot find a way to make it better. I
guess in a way, love has made things worse.
If I did not love my children so much, this wouldn’t hurt so bad. But I do.
I always will. I can’t help
it. I can’t change the way I feel. We wanted to be parents so we COULD love our
children and give them the best life we knew how. But as much as what I am feeling in this
moment hurts beyond words, I couldn’t imagine loving my boys any less than I
do.
That ‘Lovin Feelin’
is what kept me going and got me up and back in Nathan’s room. It would be so easy to just give up right now
and fall to pieces. But Nathan was still
here and I was going to be there for him until his last breath.
I lost track of all
sense of time that night. I just stared
at Nathan the whole time. I sat right
next to him with one hand stroking his head and the other holding his
hand. To me, I felt that if I wasn’t
touching him then he didn’t feel comforted.
I needed him to know that his mommy was right there with him and he
wasn’t alone. We had opened up the glass divider between Nathan’s room and the
room next to him so we had that entire space to spread out and bring in some
comfy recliners to sit in. Kevin was
sitting in a recliner with my mom near by.
Apparently it was
pretty late and my mom was debating whether or not she should go back to the
RMH or not. They offered her that same
family room that Kevin and I slept in that one night. She took them up on their offer and ended up
going to bed in there.
Since Kevin had
been up since 6 am that morning and had worked a bit, he was very tired so he
fell asleep in the recliner as I continued to sit by Nathan and watch his tiny
innocent body, where the only movement was coming from the ventilator. There was no more squeezing of mom’s finger
any more. He just didn’t have it in
him.
I am sure it was
past midnight if not later by this time and as I was watching Nathan, his
entire body just started turning purple.
I wasn’t for sure if it was a shadow or not since we had the overhead
lights turned off, but I called for his nurses to come in quickly and check on
him. We turned the lights on and he
definitely turned a deep purple. I think
his numbers were still ok and I am sure they suctioned him just to make sure
but it really scared me. Just out of the
blue he was turning purple. We called in
the resident to double check that he was ok and for the time being and he was. It scared me so much. I thought that was going to be my last moment
with him.
I was getting extremely
tired, especially with all the crying and all the emotions that I had been
through in the past 12 hours, but I was literally scared to go to sleep. What would I do if Nathan passed while I was
sleeping? How would that make me
feel? I am sure I would never forgive
myself if I weren’t by his side in his last moments. Colin passed in my arms so I knew that he
felt his mom holding him and felt comfortable enough to leave us. I couldn’t let my other baby die alone in an
incubator. I just couldn’t imagine how
scared he must have been. I mean, take
the previous incident for instance. What
if I wasn’t watching him? Would his
nurses know he turned purple? I know he
ended up being fine but what if it was something worse next time? And he was still spitting up blood so I
needed to be there to continue to wipe his mouth and suck up the bloody
saliva.
It was probably
around 3 or 4 am when I finally decided that I needed to take a nap of some
sort. His nurses were sitting at the
computer facing Nathan so I told them that I was going to try and sleep for a
few hours. I made them promise me that
they would check on him constantly and wipe up his bloody saliva and watch that
he doesn’t turn purple again. They
promised me so I curled up on the recliner and tried to fall asleep. I positioned myself so I could just open my
eyes and I would be able to see his monitor and make sure the numbers were
ok. It took me probably 45 min to an
hour but I finally worried myself to sleep…
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