Nathan
is 3 weeks old today! Although the past
3 weeks have been full of many different emotions ranging from the happiest
times with Nathan to the worst of times with him and of course the passing of
Colin, I wouldn’t want to be anywhere else other than with my children. Colin is still with me every single day,
sitting on my shoulder and watching over his younger brother. And then Nathan is the strongest little boy I
have ever met in my entire life. He has
been through so many trials and at this point, he does his best to overcome
them. Yes, I of course wish I was still
happily pregnant with them as they continued to grow big and strong inside my
belly, but I need to be thankful for what I have in this exact moment, and I am
truly thankful for Nathan’s beautiful spirit, strong will to survive, and
loving heart.
Kevin
and I arrived only to hear some good news, which happened overnight. Nathan’s urine output seemed to be doing very
well. At midnight, he had 4 mL, 4 am he
had 3 mL, and 8 am he had 6 mL. Throughout
the day, he continued to have wet diapers, which made me feel like it was my
birthday and not his. At noon and at 4
pm, he had 4 mL and then at 8 pm he had 2 mL.
The Doctors are very pleased by the amount he is producing today. And to top of this birthday with plenty of
urine, Meaghan is his nurse again today.
I think this roller coaster is starting to go back up.
Even
though the rollercoaster that is the NICU, felt like it was heading upwards,
Nathan’s edema seemed to be getting worse.
He was getting so puffy that his eyes weren’t even visible any more and
he couldn’t even put his arms down by his sides. They wanted him to urinate more so he would
eventually get rid of the edema. That
part I understood. But it was hard to
grasp how that could happen since they were putting so many other components
into his body. His platelets were low so
at 10 am, they gave him platelets and then more red blood cells after
that. I know they wouldn’t give him these things if they weren’t necessary, but the none medical side of me couldn’t see
how even if he was urinating a good amount, how the edema would just
disappear. But once again, I put my
trust and my faith in the Doctors that they knew what was best for Nathan and
that they would do right by him.
They
also took another CBC from him today.
They got the blood from his head.
I actually watched Meaghan do it as she put the tourniquet (she used a
rubber band) and stuck his head with a needle.
As she took the tourniquet off, Nathan had this big indent around his
head because of his pitting edema. My
poor baby. He gets put through the
ringer every single day and I only wish I could be as strong as him or in his place. The blood culture was to check for fungal and
bacterial infections. Along with the
CBC, they got an ultra sound of his Belly so the surgeons at Children’s could
look at it. Although the surgeons saw
the x-ray of his Belly from this morning, they wanted an Ultra sound to see
other details.
We
waited to hear what they had to say.
Kevin and I were fine with whatever needed to be done to take this edema
down and relive all the pressure that was on his organs. Apparently, the Doctors reviewed it and
didn’t think there was enough fluid for a drain to be necessary and since it
wasn’t infectious, they just decided to continue with the Sephtazadine. So Nathan was going to stay at this NICU for
now.
In
other good news, his blood pressure was good and they weaned him off of his
EPI. So his main issues are still his
edema and having his kidneys continue to work and urinating at a consistent
pace. With his edema came some skin
issues. You can tell in his pictures
that his skin is being stretched, which in turn, makes it very dry and is
starting to create blisters. Today, we saw two blisters on his back and
then one on his lower right abdomen. I
can only imagine what he was feeling.
Here is a little boy who is lying on 2 blisters and he doesn’t have the
capability to move if it is uncomfortable for him. But what can you do as a mom? You just hope that his numbers on the screen
are reflecting how he really is feeling and that the nurses are paying
attention to it and doing all that they can to make him as comfortable as
possible.
After
shift change, we came back and Jean was his nurse again. We did his care at 8 and Nathan weighed 1406
grams. He had almost doubled his weight
since last Thursday. Despite his busy
day with all the tests, the pokes and the fiddling with, Nathan seemed to be
having a good night. After his care, I
sat and read him his nightly story and he was moving around more than he had
been. That was such a good sign in my
eyes. I remember the first time he
didn’t move when we did his care. It
scared me because that wasn’t like Nathan not even to waive his arms around or
flinch or anything for that matter. But
tonight, he was telling his parents that he was feeling all right. Who knew that the movement of a child’s arms
could say so much to a parent?
Since
his skin was so dry, he would form eye crusties in the corner of his eyes and I
would like to get them out for him. I wanted to do all I
could to make him comfortable and if that meant wiping the crusties out of his
eyes, then by golly that is what I was going to do.
Another
day had come and since Dr. Valentine said Nathan was now DayS by DayS, then I
didn’t feel like we needed to sleep in the NICU again. He had more good things happen today than bad
and was showing us signs that he was starting to feel better. I will consider this day a victory. We surely have a LONG way to go still, but
Kevin and I were going to be right by his side for this entire journey. I wouldn’t dream of being anywhere else.
 |
| Still so beautiful to me. |
Nathan’s Nightly Update
(January 2, 2014)
Hello!
I would like to start off this
email by wishing Nathan a Happy 3 Week Birthday Today!!
Kevin and I were in much
better spirits today than we have been for the past 4 days. It seems for right
now, Nathan's kidney's are working at a pretty stable rate. His urine
output have been anywhere between 2-6ml with the majority of them being at 4
which is the perfect amount. That is about 1 ml per hour and that is what
they want by going off his weight. They are going off his weight before
he got swollen. So that would be 800 grams. Tonight he weighed 1406
grams. Obviously that is mainly due to the swelling and edema he has.
They also give him more fluids today which add to his weight. He
got platelets today at 10 am and red blood cells after that. Although all
his CBC's kept clotting (which means the platelets are working) they finally
got a good one through a vein in his scalp and the platelet numbers were a bit
low so they gave him more. So they got that CBC at 6 am this morning along
with another belly x-ray which they sent over to the Pediatric Surgeons at
Children's.
The surgeons reviewed his
X-ray and wanted an ultra sound of his abdomen. So at 2:45 pm, he got an
ultra sound. He got to feel what I felt like getting ultra sounds all the
time as they searched for their little heartbeats while I was in labor and
delivery. He tolerated the US very well. So Kevin and I waited
around to see whether or not he would need the drain put in or not. So
around 6:45 pm, the Attending came to talk with us. She explained that
her and the surgeons agreed that the fluid in his abdomen did not look
infectious and there was not enough fluid that they would need to put in a
drain. So they are just going to continue with the antibiotic cephtazadine
for another 7 days. She is still wondering where this came from. It
was kind of a "which came first? the Chicken or the egg?" He
did have that rare blood infection (which they believe is gone) and he had a GI
problem when his belly started looking distended. So they THINK that the
bacteria from the blood infection effected the receptors in the GI and
prevented it from functioning properly. I think we understood that right.
So no drain, and he is making steps in the right direction.
His potassium finally was
actually LOW so they added some in his TPN. I guess now that he is peeing
consistently he is getting rid of potassium. They also weaned him off his
EPI completely and his blood pressures are pretty good.
Because he has so much edema,
his skin is very sensitive and flakey. Normally, my urge to peel ( I love
peeling sunburn….weird fetish, I know) would take over but he is so fragile
right now it hurts to look at him. He does have a few blisters starting
to form so they are monitoring that. So the pictures attached are me
wiping his eyes of sleep crusties and the other is Nathan tonight. He was
vey active when we came in to say goodnight and read him a story. He was
moving all limbs around and playing with his tongue. Clearly he is feeling
better because babies who feel sick don't do that (or so we've been told).
Last night when I was wiping his eyes he did manage to open them and and
he was high sat-ing so he must have liked it. His eyes are so swollen
they aren't easy to open so we haven't seen them in a few days other than last
night. Obviously this isn't how he SHOULD look. He has almost
doubled his weight since last Thursday. But no matter how he looks, he is
still our sweet sweet boy and we love him more than anything!
Love you all!
Kelly, Kevin and Nathan
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