Today was the last day of what was hopefully going to be the worst year of my
life. I feel a little bit bad saying
that because I had some good things happen such as my babies were born. But on the flip side, they weren’t supposed
to be born this early. 2013 was not
supposed to be their birth year. I got
to meet my precious son Colin while he was alive and Nathan had some really
good weeks there for a while. But
between my mother-in-law passing, my first born passing away, and now his
brother fighting for his life every day, this has to go down as the worst year
of my life. I hope I never have another
year that is worse than this one. I
prayed so hard to make 2014 a much better and happier year, and that began with
Nathan. Nathan needed to get so he was
healthy enough to take home and then we could finally be a normal family that
does normal things. I was convinced that
that is what was going to happen for the upcoming year and I had to keep
telling myself that it was possible and that Nathan could miraculously come out
of this just fine.
Just
like every other day before this, we ate our breakfast and headed over to
Nathan. Meaghan was his day nurse! Once again, we loved her and I know Nathan
loved her taking care of him. A sense of
comfort comes over me when I see her in his room. Of course the first thing I ask about was his
urine output for the evening. At
midnight, he had 3 mL, at 4 am he had 11 ml!!! Can you believe that? 11!! And then at 8 am, he jumped back down to 2
mL. His noon care would come soon enough
and we would be anxiously awaiting a wet diaper. They also told us that we could do Skin-to-skin
again after that care! So many things to
look forward to.
But
in the mean time, we sat with him and just enjoyed being near him. That morning, they said that his potassium
levels were a little low. They would
like it to be between 3.5-4.5 but his was 2.
Nathan also had a little bruise on his left ear. I know how my ears started to hurt from lying
in the L+D bed for just 1 week and I was able to move my head from side to side
if I wanted too. I know the nurses
change his position at every care, but he is constantly lying down and he is
always on one of his ears. And with the
edema that he has as well as the lack of cartilage in his ears, they get
flattened and make an indent in his head.
So when we turn his head at care times, I like to give his ears a little
massage and ‘fluff’ his ear if you will.
Meaghan said they would be putting a topical cream on his ear to prevent
possible fungus. They also would give him
1 dose of fluconazole to help with possible fungus that could form on his skin
due to the pitting edema.
He is
still swollen and even more swollen then the day before. He got more platelets last night so now, our
poor little guy has an IV in his left leg, his left arm, and his PICC line is
in his right arm. He must be so
uncomfortable, but let me tell you, he was one tough kid. I admire him so much and always will. His
kidneys aren’t getting worse but they don’t seem to be getting all that much
better either. His creatinine level has
stabilized at 1.6 but they would like the number to be less than 1.0. It is still a waiting game.
 |
| Meaghan handing me Nathan |
It
was noon and time for me to hold my son but first we had to check his
diaper. We only got 1 mL this time
around. Where was that 11 that we loved
so much? Hopefully with me holding him,
it would help him be more relaxed like we were hoping for his time with his
Dad. I felt like I haven’t held him in
weeks! Meaghan and Paulette
(who was the Respiratory Therapist) moved Nathan onto me. I was
right by the window and the sun was shining in brightly that day. I asked Kevin to see if Sue, who was watching
the other babies, could lower the shades down.
My back was to his monitor so I couldn’t see what his SATS were or
anything. As they put him on me, the
monitor was beeping, but that was pretty normal when messing with him. Meaghan
silenced the alarm so I didn’t know what was happening with his SATS.
 |
| Nathan Lying on me |
I was just holding him,
loving every second, but his SATS were apparently in the 30’s and 40’s. I also
couldn’t see the fact that he was turning purple because he was right under my
chin. So after a few minutes, they made
the decision to put him back in his incubator.
No one told me that he was as low as he was, or the fact that he was
turning purple. I clearly want what is
best for him and if that means not holding him, then that is perfectly all
right by me. Nathan just wasn’t in the
mood to be held that day and that was completely fine. A part of me, obviously, wishes that anytime
I held him, he would get better. Pee
more, higher SATS, move a bit more. What
mom doesn’t want to be the comforting and healing factor in their kids
life? But Nathan was not feeling it that
day and I did not take it personally.
Once we put him back in his incubator, after a few minutes, he was happy
again. Just like a healthy baby at home,
sometimes they like to be held and sometimes they don’t. Today, Nathan did not.
His 4
pm care brought 1 mL of urine again. I
was getting a bit frustrated as well as worried. And then at 5, Meaghan tried to take some
blood samples but was unsuccessful. She
tried 3 times and they all kept clotting.
She didn’t want to keep poking him so she stopped trying. She said they would try to get it through a
vein instead of a heal stick next time but for now, he needed a break from
being pricked.
We
went back to RMH to rest up since we were going to ring in the New Year with
Nathan. At that time, I wrote his
Nightly Update. It read:
Happy New Years Eve!
So overnight, like I said, he
had an 11ml diaper. At his 8 am care he had a 2ml and then for his 12 and
4 pm care he only had a 1ml. So although he did make us all happy with
that diaper at 4 am care, he still needs to pee more. So I guess this is
what people meant when the said it is a roller coaster of emotions in the NICU.
We were so happy our boy was making progress and now back to being
worried and scared. His creatinine level is at 1.6 and it hasn't gotten
worse but they do want to see the number go down to a .XX instead of a
1.X.
Since he isn't peeing the
amount the doctors really want, they will put a catheter in at his 8 pm care to
just make sure there is nothing blocking the urine from getting out. They
don't think so but they just want to double check with all the edema he has.
So that will stay in for just a few hours to make sure it doesn't cause
infection.
Today we tried Skin to Skin
with me. Nathan did not want to do that today. He de-sated to in
the 30's so we put him back in his incubator and he felt better. I guess
we will wait till he really feels good to do so. I didn't take it
personally. I want what is best for my baby and today he just wanted to
be left alone.
So those are the big things
today. Other than that they are just tweaking his fluids a bit to keep
all the numbers stable.
I sent this early because we
are ringing in the New Year with our sweet boy. Hopefully it is a very
uneventful evening filled with wet diapers and happy babies. Keep sending
out those pee prayers! And here is to 2014 being 100 times better than
2013 has been.
Love,
Kelly, Kevin and Nathan
Once
I finished his update, we headed back to the NICU and Holly was his night
nurse. We had never had her before but
she seemed to be very sweet. She was
pregnant with her 2nd child and she only had a couple months to
go. Kim, the other pregnant nurse who
had Nathan one night, was the nurse for the 2 other babies in isolation. We began his 8 o’clock care and I told Holly
that I liked to help with his care. She
had this motherly feeling about her and I liked that a lot. She talked to Nathan as we did his care as if
he was reacting to her. I loved it when
the nurses did that.
We
ended up weighing him at this care and he was 1252 grams which is around 2 lbs
12 oz. And unfortunately, his diaper
didn’t have any urine in it. We did bump
him up to the next size diaper because his edema was getting so bad. As we were
putting the new diaper on, he did have a drop of pee that we saw come out. I guess a little bit is better than
nothing. Then Holly realized that they
wanted to catheterize him. So she went
and got the tools that she needed to do that.
Hopefully, something was just blocking his urethra and by catheterizing
him, would unblock it and the urine would just flow right out. As I watched Holly put the catheter in, I
held his hand and stroked his head. That
can’t be comfortable for him. He
de-sated a little bit but he is a strong little boy and I know he could handle
almost anything poking at him. We did
see some urine right away, which was promising, but it didn’t get very far and
it was moving very very slowly. Now I
had something else to watch for the next 4 hours or so.
Kevin
and I did sit and talk with Holly and Kim for a bit. We found out that Holly actually has a
sibling that lives in Dublin, OH, which is the town north of us. And we also talked about parents in our
situation and how she doesn’t understand how she can be pregnant with a healthy
child and my child is fighting for his life and one has already passed away. She said it’s not fair and she is right. I don’t wish her to have an unhealthy baby; I
just want to have a healthy baby. I did
everything right while pregnant and we still ended up in this situation. Then there are babies in the next POD over
who are going through withdrawal because their mom was a crack whore and
couldn’t keep her addiction under control while pregnant. That baby did nothing wrong and they are
suffering because their mother was a fucking idiot (pardon my French). Nothing about this situation is fair and
trying to understand why we got chosen to be in this situation is a dead end. No one can explain it. No one can give me an answer and I will never
get an answer. Maybe one day when I have
come and gone, either God will give me an answer, or Colin can explain it to
me. And even then, I won’t accept that
to be a good answer. All I can do is say
that it is what it is and do the best I can to get through it.
Midnight
was approaching so Kevin and I got garbed up and went into Nathan’s room. I stood on one side, and Kevin stood on the
other. We had our hands in the incubator
holding his hands and rubbing his head. I stood over his swollen body and just
started to cry. I couldn’t help
myself. This year has sucked beyond
belief and I only wanted to end 2014 like I am starting 2014; and that is with
Nathan by my side. I couldn’t loose
another child. Loosing Colin was the
hardest night I have been through in my whole existence and I can’t go through
that again with Nathan. I needed 2014 to
bring so much more happiness than what 2013 has. I needed Nathan to pull through this and make
me the luckiest mom in the world. But
only time would tell his fate.
10…9…8… Watching the clock tick away
…..7….6…5…..tears streaming down my face and landing on his
incubator…..4…3….2….1. Happy New Year I
guess. Another bittersweet moment. Happy I have him here with me tonight, sad
that I am not sure what 2014 will bring for him.
I
stood with him for a little bit longer after the clock struck midnight. I kissed my hand and touched his
forehead. He was my first kiss of 2014
and I wouldn’t want it to be with anyone else.
I told him how much I loved him and how I really want to be able to take
him home this year and to meet all his family and friends. He was my New Years Resolution. I just wanted him to be healthy. There is nothing else in the world that I
wanted in that moment than for him to be healthy and come home with us and
hopefully be there to celebrate 2015.
I
said Goodnight to him and headed out of the room. The nurses brought around sparkling grape
juice to cheers with at midnight so they gave Kevin and I a glass. We drank that real quick and told Holly
‘Thank you’ for watching over our sweet baby and we headed back to RMH.
Tomorrow
(or I guess at this point it’s today) was another day for Nathan. What would it bring? Good news?
Urine? No one knows but Nathan and I guess we will have to wait and
see. Is 2014 going to be the start of
something good? Oh boy I hope so.
No comments:
Post a Comment