I can’t begin to tell you how much I missed Kevin when he
was gone. Although I was extremely happy
to have my mom there in his place when he was away, it was just a lot more
pressure on me to grasp everything that happened with Nathan. I was just better when he was there. But I only had one more day this time around
without him by my side in the NICU. I
could do it and I know Nathan would help me.
That day, Nathan’s nurse was named Gale. She was a woman I had seen in the NICU but
she had never had Nathan before. She was
a little bit of a stickler for the rules.
Kevin and I had been sitting on high chairs right next to Nathan’s
incubator so we could watch him and be there for anything he might do. Now we were wearing a gown, gloves and masks
while we were in there since he was in isolation but the NICU was really
cracking down on wearing masks. Since I
am there all day long, I bring things to do; such as a kindle or magazines or
puzzles of some sort. Gale wasn’t too
thrilled with that idea so she asked me to hang my bag up in the lockers when
you walk into the NICU. I asked her if I
could just sit in a chair in the empty room next to Nathan. There was no baby in there and there was a
clear glass sliding door in between the two so it was still easy for me to see
Nathan and watch his monitor. She was OK
with that idea at least. I realize they don’t get a lot of parents that spend
5-7 hours at a time with their kid, but that’s what I want to do and I would
like to keep my self occupied while I can still sit next to my baby. It all worked out in the end but you could
tell she was definitely a rule follower.
Nothing had really changed that much with Nathan. They same problems that he had yesterday, he
had the same ones today. When they did
the repeat x-ray at 4 am, the spot in his bowels moved. If it truly were NEC, then it would have
stayed in the same spot so the doctors are still unsure of what kind of
infection he has now. Nathan was still
not getting any milk and he still wasn’t getting Bactrim. They were going to test Nathan’s blood to see
if the Bactrim had killed the blood infection in just the 7 days that he was on
it. They were thinking that it was the
Bactrim that he wasn’t tolerating very well so they chose another type of
antibiotic called Timectin, which had a broader spectrum of coverage.
In the past day or so, Nathan’s urine output has been slowly
decreasing. This was not good. We needed him to pee out all the extra
potassium that he had and without urinating a decent amount, his potassium
wouldn’t change much. There are so many factors
in why his potassium could be higher than normal. It could be because of the Bactrim or it
could also be when they take his blood and use a turnakit. Today, they changed the settings on his
oscillator and the change in the high CO2 could also cause high potassium. It is so hard to tell if it is just one thing
that is causing it or if it is all the factors combined. But the goal is for him to urinate more and
get his potassium down. To try and get
him to pee more, they started giving him Lasix to hopefully help with the
urination. I can only hope that it
works.
I didn’t take a lot of pictures in the morning of Nathan
because I was a little scared that Gale would yell at me for taking my phone in
his room if I am being completely honest.
But around his 4 pm care, I decided to risk Gales wrath and take my
phone in there. Here are some cute
photos I got of sweet little Nathan. He
got a brand new hat to wear and he looks so stinken cute in it.
His eyes were so wide open in these pictures and I loved
when he would look right at me. But I
wouldn’t realize this till later, but this was the last time I would get to see
his eyes that wide open. If I knew in
that moment that I would never get to stare into those beautiful eyes ever
again, I really would have stayed there all night and just soaked it all in.
Around 5 o’clock, we were finishing up his care and Nathan
was on his back. He started to desat into the 80’s. There was no rhyme or reason why he was doing
this so Gale turned him back onto his stomach and he jumped right back up to
the 90’s. He is just like any other baby
and is more comfortable on one side than the other and you just have to figure
out what he wants to make him happy.
Once again, I left for shift change and got some dinner with
my mom, and then I headed back around 7:30.
Kim was Nathan’s night nurse. I
had never met her before but she was very sweet. I noticed that she was very pregnant and that
was the first pregnant NICU nurse that I had met. I know that a lot of the nurses are mothers
but to be pregnant with your first child and taking care of all these sick
babies, it would obviously have to put things in perspective. It takes a strong person in general to take
care of these precious, innocent babies, especially when there are extremely
hard and sad times that can be had.
Nathan’s oxygen levels were down to the high 20’s/low
30’s. That was so awesome. The lower the numbers got, the closer we got
to being off of a ventilator all together.
But knowing what I know, I know things can change drastically in an
instant. His potassium levels throughout
the day have gone down slowly. Earlier
this morning, it was around 8, and now it was around 7. Going down gradually but it was going down so
I will take any victory I can get. He
also did have a very wet diaper, which made me so ecstatic. Previous diapers weight 1-2 mL and this one
weighed 13 mL. I guess the Lasix was
doing its job.
 |
| Reading my baby a bedtime story |
After his 8 pm care that I helped Kim with, I sat by Nathan
and read him a story from a Dr. Seuss book that my work family got me and the
boys. I wanted to treat him like I would treat a full term baby and I thought
reading to him was perfect. He got to
hear his mothers voice and it, in a way, gave him and I, a sense of
normalcy. Why shouldn’t I read to my
baby? Just because he is in and
incubator doesn’t mean he should be denied anything a normal full term baby at
home would get to do. There are so many
things he can’t do as a newborn and so many things Kevin and I can’t do as
first time parents, so to do something so normal as reading a story to my son,
gave me joy and I felt like I properly tucked him in.
Nathan was all tucked in for the night so I snapped a photo
and sent it to dad. Kevin would be back
here tomorrow and I couldn’t wait to see him and to have his support and love
near me. Things from here on out were not ever going to be the same with Nathan
and once again, if I knew what I know now, I would have sat there all night and
starred at his tiny sweet little baby body with the cute hat on his head. There was no way of knowing what was too
come. Once again, we can’t see the
future so it really keeps things in perspective in the fact that I need to
relish in every tiny little moment I have with him. Nothing is a guarantee. That is true in everyday life but when you
have a tiny soul in the NICU, its even more evident. Take nothing for granted. And let me tell you….I never took anything
for granted with Nathan.
 |
| Sleep tight little one |
Nathan’s Nightly Update 12.27.14
Hello!
Today, Nathan was doing a little better. They repeated his
belly x-ray and the spot that they were worried was NEC moved. If it was
NEC than it wouldn't have moved so they are still a bit uncertain of what kind
of infection he has now. Again, Nathan is not acting like a sick little
boy. Heart rate, oxygen levels, the way he looks, the way he acts, are
all good and not signs that he feels sick.
They gave him Lasix again to help with his urine output. His
output was still ok but it wasn't great so that's why they put him on lasix
which hopefully would get rid of some potassium. His last potassium level
taken at 4 pm was 7 and hopefully when they take it again at 6 am tomorrow, it
will be lower than that (less than 7 is good). The antibiotic that he was
on (Bactrim) for his blood infection could be causing the high potassium so
they stopped it. They switched him to an antibiotic that has a broader
spectrum and can cover more ground. They are doing a blood culture on
this new infection to see if the new antibiotic given to him will do its job.
This new bug that he has developed has the doctors and the fellows
scratching their heads so we will just have to wait and see. But in the
mean time, he seems to be acting fine and as long has his potassium levels go
down, I will be a happy mom. They are still holding his feeds.
The blood culture will also see if the blood infection is still
there or if the bactrim did its job in the 7 days he had it (even though it
brought up his potassium level). For all you medical people out there,
his inflammatory markers went up as well as his CRP (C? Reactive Protein) went
up and was around 1.6. Not sure what that all means.
Kevin comes back tomorrow and if Nathan is messing with his mom,
then his infections will be all gone and we will have another boring and
uneventful day. In which case when he is 10, I will tack on an extra week
of being grounded just for messing with his mom when Dad is away but being an
angel when he is here.
Other than that, nothing new! We just need to get rid of
this unknown infection/bug and get his potassium level. Do you like his
Red Hat? I told the nurse that since he is blonde I will let him wear
that but if he had red hair we would have to find a different color hat.
Red heads do not look good in red. :-)
We love you all!
Kelly, Kevin and Nathan
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