Another day. A day
without Kevin by my side and a day that Nathan didn’t have his dad. I hoped so badly that everything would
continue to get better and there would be no issues. But who am I kidding? A 24 weeker without any problems, small or
large is highly unlikely. Otherwise he
would be home with us. So as long as
there weren’t going to be any major issues, I was prepared to take on the next
couple days by myself.
Kevin had gotten up very early so he could be back in
Columbus to see his first patient. My
mom, dad, brother and I, got all packed up and were ready to check out of the
hotel. My brother and my dad had their
own cars and then I was going with my mom since she was staying in town until
Kevin returned. We said our goodbyes and
I thanked them again for their kind and generous gifts, and my mom and I headed
to the hospital.
She dropped me off and I was very excited to see how his
first Christmas night went. When I got
there, Nathan looked all snuggled up and seemed to look really good.
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| Good Morning Dad! |
After a few minutes of sitting by him and saying my ‘Good
Mornings’, he started to wake up and open his eyes. I loved those eyes. I loved every little part of that boy. I loved looking at him and knowing that he
knew that his mommy was right there beside him.
For the most part, the day was uneventful. He weighed 752 grams the night before, which
was 2 grams more than the previous night.
When I got there around 10:30 that morning, he was at 38% oxygen! That news was great but then they told me
that they did a renal panel on him and his Potassium is higher than they would
like it to be. They would like it to be
less than 7 and it was 8.4 when they took the test again at noon. Ruth Ann was his nurse today and she was very
good at explaining things to me. If they
use a turnakit to draw blood for the renal panel or if they squeeze his foot if
they are doing a heel stick, the pressure from that can cause the potassium to
be higher than it really is. But when
they got the 8.4 reading, it was from a heel stick and she said it was pretty
free flowing blood. She didn’t have to
squeeze his foot too much or at all to get the blood.
I asked Ruth Ann to tell me the risks of having high
potassium. She told me that high
Potassium was what Colin’s problem was. His Potassium was greater than 9 but
that is all she can remember. When she
said that, I immediately thought we only had a few days left with Nathan. Ruth Ann reeled me back in and told me that
Colin was not producing any urine so he couldn’t get that potassium out of his
system. Nathan is urinating so that was
a plus and his kidneys looked fine. I
breathed a little easier after that.
She also told me that high potassium could cause an irregular heart rate
but Nathan’s heart rate was very good and steady whereas Colin’s heart rate was
not and was having problems.
Apparently, the antibiotic that Nathan was on, Bactrim, can
also cause high potassium levels so they decided to hold those doses of
antibiotic until they learned more.
Holding those doses were fine since Bactrim is a long lasting antibiotic
and would still be in his system and work towards his infection. They were still keeping him on the
Sephtazadine antibiotic for right now.
Ruth Ann was wonderful.
I really respect her as a nurse and I feel very comfortable when Nathan
is in her hands. And the fact that she
knew Colin and new what happened to him and was there for that horrific night,
made it better. Colin and Nathan are
identical twins and for someone to know both of them and can potentially see
similarities in their health, even though that might have nothing to do with
them being identical, for some reason made me more at ease. That day, we also got a new Resident, Dr.
Blackwell. She was super cute. She was very short and pretty and seemed to
have a lot of compassion and knowledge.
The day went on and Nathan was doing well on the
outside. He was still pretty active when
we would do his care, although he wasn’t producing as much stool as we would
like. After his 3 pm care, we gave
him another pacifier and he took to it all by himself. The first attempt was a little spotty but the
2nd attempt he seemed to be going to town on that pacifier.
While he was sucking on the pacifier, we were feeding
him. This way he will start to associate
the full stomach with the sucking and swallowing reflex. I just loved seeing that. He really is just a normal baby, just 6
pounds lighter. He had been spitting up
a bit lately so I was worried that with the pacifier in the way, he might choke
on his spit up. I didn’t even know if he
could choke or not, being intubated and all but I just wanted to make sure.
Doing his care with Ruth Ann, her and I would start talking
about things. She was telling me that
Kevin and I are in the minority when it comes to parents that visit their child
in the NICU. I am not surprised since I
never saw many parents, but it is still mind blowing that parents wouldn’t want
to come see their child and spend time with them. I just couldn’t fathom not being there for
them. It would literally break my heart
if I knew my kid was suffering in the NICU and I was home just moving on with
my life.
I was also telling her about the Ronald McDonald house and
how one of their rules is that you HAVE to go visit your child at least once a
day. I couldn’t believe that was a rule,
because once again, who wouldn’t want to go see their sick child? She said that she is glad they have that
rule. Sometimes the Ronald McDonald
house will call the NICU looking for parents and they will tell them they
haven’t been here in days. People are
abusing the services the RMH provides.
Now I know why they have those rules and I am more than happy to follow
that rule.
Ruth Ann let me know in our conversation, that Kevin and I
can request certain nurses. I was
telling her that I would feel more comfortable if we had consistent nurses who
would get to know Nathan and his mannerisms.
I know what he is like since I spend all day with him. But if a nurse only sees him for a 7 hour
shift and then not again for another week or so, she wouldn’t be able to tell
if something wasn’t normal routine with him.
I was really glad she told me that and I would from then on, request
certain nurses.
After spending an hour or 2 more with my baby, I had my mom
come pick me up and we went back to the RMH house to get some dinner. I was planning on going back to the NICU
around 7:30 anyway, but at 7:00, Ruth Ann called my cell phone. I hate when they do that. They never call for good news. So I put it on speaker so I could have my mom
listen in. I had pointed out to Ruth Ann
that day that I thought Nathan’s belly looked a little more bloated than
usual. She felt it and wasn’t too
concerned about it, but apparently after I left, she did order a belly film to
just double check that things were O.K.
She began to explain that they found some air on the lining of the bowl
wall in the Right Lower Quadrant. She
said it could potentially be NEC (necrotizing enterocolitis), which is a
disease that can be found in pre-mature babies. The intestines can develop a
perforation in them. If that were the
case and a hole did develop in the intestines, bacteria can get into the babies
bloodstream and cause an infection.
Ruth Ann didn’t really explain all that on the phone, but
she said that it was nothing that I need to rush over for. Nathan was fine and stable. I had been telling her that day that it was
hard for me when Kevin was away to retain all the medical jargon that is thrown
my way. I do the best I can but it can
become very overwhelming…even when I write things down. So Ruth Ann said that I could bring my mom
into the NICU if I wanted. We could go
into the family room (where we all were when Colin passed) and the Doctor could
sit down with us and tell us their findings.
That way, my mom could me my second pair of ears. I absolutely jumped on that opportunity.
As I was on the phone with Ruth Ann, my mom got out her iPad
and I could tell she was looking up NEC.
She was pretty sure she knew what it was but she just wanted to make
sure. After I hung up with Ruth Ann, my
mom told me what she thinks it is. She
didn’t want to frighten me so we took what information we knew and we would
just wait to hear what the Doctor had to say.
I automatically called Kevin and told him what Ruth Ann had
just told me. I told him that I would
keep him posted and would probably be calling him after I spoke with the
Doctor. So we hurried up and got ready
to go over and we headed back to the NICU.
We went into the family room with the Resident and he told
us what they found and what the potential dangers/treatments are for this. He said that they would stop Nathan’s feeds
for now and actually put a tube in that was sucking stuff OUT of stomach and
hopefully giving his gut a rest. They
would still give him the TPN so he would continue to get nutrition through
that, but that ended up being the last day that Nathan got his moms milk.
They would do a repeat x-ray at 4 am to see if it has gotten
worse, better or stayed the same.
Another waiting game to be played.
I didn’t like these games. I just
wanted things to be boring with Nathan. He
needed to stop with the new bad findings while dad was away.
After discussing things with the Doctor, I still wanted to
spend the next hour or so with Nathan.
So after calling Kevin and letting him know what the Doctor said, my mom
decided to wait in the waiting room until I was done. It sucked that she was only 75 feet away from
her grandson and was not able to spend time with him. I bet that was very hard for her. I couldn’t see why she wasn’t allowed back
since he was in isolation and not around any other babies. But rules are rules I guess.
It was hard for me to imagine things were wrong with Nathan
on the inside because on the outside, he was simply perfect. He was alert and moved his limbs when he was
on his back and doing his care. It was
hard to even think that he might be uncomfortable inside. But I will love that boy forever and hope for
his recovery from this NEC.
In his Goodnight picture to his dad, you can see the blue
tube coming out of his nose now instead of the orange one. Lets hope that blue tube gets a lot of gunk
out and Nathan can start feeling better.
We got through another day, Nathan and his mom. We make a good team and although there was a
bump…Nathan is still here with me, and that is all I could ever ask for at this
moment. I needed to hang on to the
little victories to get myself through all this and Nathan was such a sweet boy
that he was my motivation to get up and moving each and every day.
Nathan’s Nightly Update 12/26/13
Hello!
I hope you all enjoyed
a wonderful Christmas with your loved ones! Nathan let us enjoy our
Christmas without any major worries, which was such a gift! And then today, of
course, he has to give his Mom and Dad something to worry about now that
Christmas is over.
I came in this morning
to the NICU and they mentioned that his Potassium levels have gone up.
They like it to be less than 7. To test the potassium can be tricky
because they want to get blood but sometimes using a tourniquet to draw blood
can give a false reading so they need a good free flowing vein. They
tried doing a second test at 12 noon from a vein in the scalp and it didn't get
a read so they tried with a heel stick. That number came back 8.4.
Some of the Doctors still didn't like the way the blood was taken (heel
stick) cause that can give false readings as well so they will repeat the blood
test in the morning; probably through his arm.
I asked what the major
problems of high potassium are and they said that it can effect the arrhythmia
of his heart but right now his heart rate looks real good and normal so they
were going to just watch closely at that. The nurse Nathan had today was
the same nurse that Colin had the night he passed. She said that Colin
had high potassium the day he died. My eyes got REAL BIG! Then she said
that Colin was also not producing any urine output so it was all just staying
in his body. Nathan is still continuing to produce a good amount of urine
so they will just watch that and make sure that number is good as well.
His Kidneys look great and everything. He just has high potassium.
They thought at first that it could be from the antibiotic Bactrim that
they are giving him for his blood infection but they weren't sure since it
isn't a drug they use that often. So they held his bactrim dose at noon
to see if that would make a difference.
So I left around 5 to
go eat dinner and then at 7 the NICU called me. They never call you
unless something is wrong. I had been noticing that his belly had been a little
distended and bloated lately and he hadn't been pooping as much as normal.
I said that to a couple of nurses but if they thought it was abnormal I
figured they would do something about it. His nurse tonight did do
something. She got a belly x-ray and it came back inconclusive.
There is a small potential that it could be something they call NEC.
It was in his right lower abdomen and it was a little air on the lining of
his bowl wall. So the treatment for that right now is to hold his
feedings and go back on his TPN (Nutrients through and IV). They also
have a tube that is now sucking out stuff instead of his feeding tube. So
hopefully with this 'rest' for his gut he will start feeling better. This
could also be why his potassium level went up. Again, they are not for
sure and they caught it really early if it is NEC. This is something that is
commonly found in pre-mature babies. They will do a repeat x-ray at 4 am and
hopefully NOT call me after the results because that means they are either the
same or better.
But once again, Nathan
is a champ and I know he can beat this. His oxygen level requirements did
go down to 32%! His nurse said that with all the extra gas in is abdomen
that it was pushing his diaphragm up and pressing on his lungs so once that
starts being relieved, he won't need as much oxygen. Everything is
related to another.
I really think Nathan
is testing my strength. While Dad is here, Nathan has uneventful days and
does just fine and no news is good news. Then when Dad leaves to go to
Columbus, Nathan figures he will test me to see how much I can handle on my
own. He is already playing games with us. And then I am sure on
Saturday when Dad comes back, everything will be just fine with Nathan. I
think we still might ground him when he is 10 for a week for putting us through
all of this.
So now we just hope
and pray that it resolves itself on its own and Nathan goes back to having a
good potassium level and not such a big belly. But again, other than
that, everything with him is going fine. He is such a sweet boy and we
love his so very much. I sent another video of him using a pacifier.
I just can't get enough of that. he was sucking while he was
getting fed through his NG tube so he can associate a full belly with sucking
and swallowing. Such a good boy.
With Love,
Kelly,
Kevin and Nathan
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