When we arrived at the NICU in the morning, we didn’t even get
past the front desk before the Attending physician, Dr. Narandran pulled us
into the family room to discuss a few things with us. Being pulled into that room before we got to
even see our son that day could not mean anything good. That room is there for big, serious
discussions and I was worried what I was about to hear. Thank goodness Kevin was there with me and I
wasn’t going in there by myself.
The Doctor told us that they had switched Nathan from the
Oscillator back to the ventilator. The reason
for this was because the ventilator was easier on the heart. The Oscillator was easier on his lungs but
put more pressure on his heart, so by easing the pressure on the heart, they
were hoping to get the blood pumping more to go to his kidneys and getting
those to work a little better. He
basically said that Nathan just needs to pee more right now otherwise things
could get very bad very quickly. He also
warned us that Nathan had become very swollen overnight and we would see a big
difference in his size since yesterday. They
were going to give him more Lasix and hopefully he would pee by 6 that
night. Oh boy, I never thought I would
want urine so much in my life.
After the Doctor told us all he wanted us to know, we headed
over to our baby. We definitely could tell that he was swollen. That was so hard to see as a mom. Was he uncomfortable? Did it hurt? I knew he didn’t feel well just from the day
before and his lack of activity, but now this?
I just stood over him and cried.
I just wanted to make him feel better but I couldn’t. Nothing I could do could take his edema away. He was a helpless little baby who was relying
on all the doctors and nurses to nurse him back to health.
They were going to give him more blood tonight at 8 pm. They said that it was like liquid blood
pressure so hopefully it would get the blood pumping more and get his kidneys
working again as they are supposed to.
There were a few good things for Nathan today. All of his numbers; CO2, Potassium and all
the other blood/gas levels were fairly decent.
His PH level was off a bit but the Urine output was everyone’s main
concern.
Today was the first day that I actually thought that Nathan
wasn’t going to make it and we only had a few days left with him. Yes, it has always been in the back of my
mind that it was a possibility, but I had all the faith in the world that he
was going to come home with us. I would
think of what it would be like when he gets moved into a crib and is out of the
incubator. I thought of the day when we
could just go in and pick him up and actually give him a bottle instead of
doing it through an NG tube. I thought
of the day that we would get to finally take him home and he would feel what
fresh air feels like on his sweet face.
I could have cared less that we didn’t have anything ready at our house
in Columbus. All we would need is some
diapers and a car seat and something for him to sleep in when we got home. I thought of those moments. I would tell my friends that I couldn’t wait
for them to meet him. I told the
Columbus Mothers of Twins Club that I would love to bring Nathan to a meeting
next fall so they all could meet this special little boy. I had faith.
Now today, I was doubting that faith and hope that I had.
That is the worst feeling in the world to think that your
child only is going to live a little bit longer. I had that feeling with Colin and I did not
want dig back into those emotions. I remember
just sitting in the chairs in isolation and just crying. I was scared.
I was worried. I needed Nathan to
PEE! Meaghan was his nurse again
today. She was compassionate yet
straight forward. She would give us
information in a sympathetic way without beating around the bush. Since this was the worst day that Nathan has
had yet, I was glad that she was there.
She knew Nathan, she knew us, and I knew she would do everything to take
care of him.
Nathan hadn’t been taking my milk for a few days now. So, with this news that if he doesn’t pee
things could go south, I even questioned whether or not I should keep
pumping. It was time away from my baby
and if he wasn’t going to ever have it again, what was the point. But then I snapped out of it and told myself
that until Nathan gives me a reason to stop pumping, I would continue to do
it. I felt like such a bad mom thinking
those thoughts, but I was scared. I
wanted to be 100% optimistic, but at the same time, I had to be realistic and I
didn’t want to think of the worst that could happen.
He wasn’t active again today. The day basically consisted of us waiting around
until his care times and crossing our fingers for when we changed his diaper,
that it would be soaked. That evening at
his 8 pm care, there was a drop in his diaper but nothing else. Jean was his night nurse again and it was
time to take his weekly length and growth information. He was 32 cm long. They would normally take his head
circumference, but since he had edema, it wouldn’t be very accurate, so they
opted not to take it.
I couldn’t help but feel like our time with Nathan was short
so I told Kevin that I wanted to sleep in the NICU. I was perfectly fine with sleeping in a chair
just so I could be right there for when Jean did his care at night and we could
keep an eye out on his diaper. Jean
mentioned that there was a guest room that had a couch and a cot. She went to go check to see if it was
available and it was. We hung out with
Nathan for a long time before we ended up going into the room to try and get
some sleep. I told Jean to come wake us
up after every care to tell us how much urine was in his diaper.
Needless to say I did not write a Nathan’s Nightly Update
that night. I also didn’t take any
pictures that day. I don’t know how to
explain it but I didn’t want to take pictures of him with his edema. For some reason, it didn’t seem right. Especially to take pictures and share with
people seemed very odd to me. I guess I
didn’t want to remember him that way or I don’t know. It was a very stressful day for Kevin and
I. We went to bed in our clothes and
dreamt of rivers of urine for Nathan. We
still had our baby with us so we were still very thankful but we knew this
would be an obstacle to overcome.
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