Jean did exactly what we asked her to do and came into the
guest room to tell us his urine output at every care. You could tell that she felt bad waking us up
but I was completely fine with it. I
needed to know for my own sanity. At his
4 am care he had a 2 ml diaper. When she
told me that, you would have thought I won the lottery. I was so happy that it was more than just a
droplet and it actually registered on the scale.
We slept just a little bit better after that news but only
for a few more hours. Around 8 am, a
cleaning lady barged in our room and she was startled by us being in there as
well as we were startled by her. She
said that we had to be out in a few minutes since another family was on their
way to stay there but no one had told us to be out at a certain time. No big deal.
Since we slept in our clothes, it was only a matter of putting our shoes
on and leaving. We wanted to go see out
little man anyway so I was glad she woke us up.
We went to go see how Nathan was doing and his 8 am care
didn’t show us much urine in that diaper.
It was visible but nothing measurable.
Disappointing but still not giving up hope. I sat with him for a little bit while Kevin
ran back to the RMH to take his contacts out.
Since we didn’t go back there the night before, his eyes were burning a
bit. I also needed to pump….BADLY! So I did that while Kevin was gone. I had a follow up appointment with the Doctor
that morning at 9:30 to check on my C-Section so the plan was to just go
straight there since we were already at the hospital and then go back to the
RMH to shower and freshen up before we headed back to spend the day with
Nathan. Not that I cared, but I have to
tell you that I looked like absolute shit that morning. Between crying the day before and sleeping
with my makeup on, I looked like hell run over but that seemed to be the look
that all the nurses and Doctors knew me to look like. Crying so much in Labor and Delivery and then
in the NICU all the time, it just became the norm. One nurse said that when I came in with
makeup on and my hair washed for the first time, she had to take
a double take because she didn’t recognize me.
Anyone who really knows me, knows that I don’t even leave the house
without make-up on. I would rather be
late to work than arrive with no make-up.
That just goes to show you how much I didn’t care about me and how much
I only cared about my own son and his health and well-being.
Anyway, after I was done pumping, I went back in with
Nathan. I spent a few moments with him
and then saw that the staff was doing their rounds. Dr. Valentine, who was the new attending
physician, saw that I was in there and said that I could listen as they talked
about Nathan. Molly was his nurse again
today so she was there too. The way they
talked about him was sad. You could tell
they all cared about him and were worried about him and his urine output. I tried to be super positive as I gave my
input on him and I can only imagine what they were thinking. No Doctor wants to
come right out and tell you that it doesn’t look promising for your kid but you
could tell they were all thinking it. I
would ask questions like “But this new medicine could help and he could start
peeing a lot again and his edema will then go down and eventually he would be a
grower and feeder….right?” They gave me
the most political answer they could.
They are Doctors, not miracle workers.
They could only do so much but it was truly up to Nathan.
One of the more resent residents, Emily, was a someone who, to be quite honest, annoyed me. Every time she would talk about Nathan, she had this face on her that basically looked like she pity'd me. I didn't need her pity. I needed her to do her job and tell me straight forward. She would just talk to me like she felt sorry for me the whole time and would almost 'baby' me. I needed the Doctors to be straight forward but optimistic at the same time. Now I know that might not be feasible to do both at once, but that is what I needed. Pitying me isn't going to help Nathan.
They came up with a plan for the day. They were going to not give him another
diuretic but they were still going to continue giving him the TPN since he
still was not getting my milk. His
potassium level this morning was 3.2.
They also decided to wean him off his EPI drip and to do another CBC at
4 pm. But the main goal for him was to
still continue to pee. In my eyes,
nothing else mattered than for him to pee.
In my eyes, more urine output would fix everything. I know that is not the only thing that he
needed to do to be a healthy baby, but I so badly wanted to see that urine soak
his tiny diaper.
Kevin returned to the NICU and then it was time to go to my
appointment. We told Nathan that we
would be back in a few hours and headed out.
The appointment was just in the next building over so we just walked. At the end of last week, the Doctors and
nurses who took care of me in L+D told me to call and make a follow up
appointment for my C-section. When I
did, they said it wouldn’t be till mid-late January. I didn’t care that it would be so far out but
I didn’t think the Doctors would like that so when I went to tell Dr. Allen
that it was so far out, she just said she would make my appointment for
me. She asked me what time of day I
would like and told me to just show up at that time. So
when I got there that morning for a 9:30 appointment, the woman checking me in
said she didn’t see me on the schedule.
I told her that Dr. Valerie Allen made the appointment for me. She kept looking and eventually just typed in
my name. They had accidently scheduled
me for an appointment on December 30th, 2014 instead of 2013. They felt bad and they said they would
squeeze me in.
After 10 minutes or so of waiting in the lobby, they took me
back, weighed me, took my blood pressure and then took us back to wait some
more in a hallway while we waited for a room to become available. While we were sitting there, we saw Dr.
Jaekel and Dr. VanHook walking back and forth so we exchanged greetings
briefly. I wasn’t sure if they were
going to see me or if someone else was.
A room was finally ready for us to go in. Another Doctor came in that I had never seen
before but she seemed very nice. She
took a look at my scar and said that I was healing beautifully. She asked how I was feeling physically and
how I was doing on the medication. I had
pretty much been off the oxycodone during the day and would maybe take some at
night if I felt like I needed it. I
hated the way that medicine made me feel.
There would be times that I would take a pill while in the NICU and then
10 min later do Nathan’s care and when I stood up I felt very dizzy. Not my best feeling, especially when handling
my child. I wasn’t sure when I could
start driving again and she said that if I am not on any medication than I can
drive. Not that I would need to since I
have Kevin and my Mom but in the off chance I needed to be here by myself, I
needed to make sure I was cleared to drive.
She then gave me a form to fill out which asked me questions
on my post partum symptoms and then she stepped out of the room. A decent amount of the questions were about
my emotions. I think my answers to some
of these questions would raise a red flag to doctors for a mom who just took a
healthy baby home and nothing was wrong.
But with me, my answers were completely justified. No, I haven’t felt like hurting my child, or
myself but I have cried a lot and have been very depressed because of the
situation I am currently in. After a few
minutes, she came back in accompanied by Dr. Jaekle, Dr. Van Hook and the
clinical nurse specialist that was there since the evaluation, Judith
Hostluck. We started talking and we told
them what had been going on with Nathan and that we needed him to urinate
more. They all said that they would Pray
for Pee! We talked more about my mental
state and physical state. Physically, I
looked great (my incision I mean). Mentally, I was right where any other mom in
my situation would have been. There is
no way that any mom in my situation would be completely happy and just go with
the flow. If there is a mom out there
like that, she shouldn’t have become a mom in the first place. I can’t remember, but I am sure I started to
cry in the room with all of them there.
I was just so worried about my little boy. They cleared me and said they would only need
to see me for my 6 week post op. Boy was
I hoping that I would still be in Cincinnati for that appointment. We said our goodbyes to the Doctors and then
headed back to the RMH. We both showered and got ready for yet
another day with the sweetest little boy in the NICU.
We returned back to Nathan just in time for his 12:00
care. To our surprise and joy, Nathan
had another 2 ml diaper! Keep it coming little buddy! You can do it! Although those little diapers had only a
little bit of urine in it, it still wasn’t enough to help him reduce his
edema. He was definitely more swollen
than the day before but we still had to pray for pee in hopes that his swelling
would go down.
Molly and Dr. Valentine asked us something that we didn’t
think we would hear in a while. She
asked us if we wanted to do skin-to-skin today since Nathan was off the
oscillator. I mean really….do you have
to ask? The answer was of course,
YES! I told Kevin that I wanted him to
do it this time. He has not had a change
to hold Nathan yet and I have had a few.
There is nothing like it and I would hate for him to have had this
opportunity to hold him and never take it.
I was so excited for him. It
would be a little bit before the respiratory therapist would make her way over
and help with the transfer. This was a much-needed
surprise for the both of us. The hope
was for Nathan to just be so relaxed in his Dad’s arms that he would just
urinate all over the place. We would
LOVE it if that would happen.
It was almost 2 pm when we started getting Kevin all set up
to hold Nathan. We brought in a recliner
for him to sit on and had the blanket that my parents got Nathan all ready to
go to keep him warm.
I loved seeing Nathan sleeping on his daddy’s chest. Kevin
always said that having his kid fall asleep on his chest was something he was
looking forward too about being a dad. I
am so glad he got this opportunity.
Nathan’s tube had an air leak in it so I took a video of it
because you can sort of hear the air coming out. This is the closest thing we had to hearing
our sons make any sort of noise. I think
the nurses said that it was the air on his vocal chords so in a way, it was
Nathan making the noise, with the help of the air leak of course.
As Kevin sat there, holding our son, I played the soft music
for Nathan like I always do and just watched the two most important boys in my
life. I watched them breathe, I watched
them sleep and I only wished that this wouldn’t be the last time I would see
this amazing moment between father and son.
Kevin was holding him close to an hour when Kevin’s back
started to hurt because of the position he was in. He had started the session sitting up more,
but when Nathan’s SATS started to go down, I told Kevin to lye back because
Nathan is used to being more horizontal and that seemed to make Nathan feel
more comfortable. I told Molly that
Kevin was ready to put him back and they came over to put him back in his
incubator.
A few more hours went by that we spent with Nathan. His 4 pm
came and went and he did have 4 ml of urine in his diaper! We were so excited! But it seemed like he was slowly starting to
pee more, but his edema was getting worse. It was so hard to watch my tiny
little baby’s body just continue to get swollen and more swollen. Did it hurt? Was it uncomfortable? And because his skin was stretching, it was
becoming very dry which you can sort of see in these pictures.
I told Nathan that I wanted him to continue to grow and get
bigger but I didn’t mean in this way. It
hurt my heart to see him like this when there was nothing that I could do. I just wanted him to be comfortable.
His was still moving his hand’s which was a good sign. He still wasn’t active during his care like
he used to be, but seeing any sort of movement from him was a positive
thing. I took him moving his little
hands as him waiving goodbye to us since we were about to head back and get
some dinner. I wish they could have had
the NICU set up with a queen size bed and a full bath right next to his
Incubator. I would have never left that
place if I didn’t have to.
We got back to the NICU after shift change just in time to
do his 8 pm care. 6 mL in his diaper
this time. The number kept going up and
the hope of his edema going away and his kidneys working like they should be
kept increasing with each mL of urine.
He, of course, weighed a lot more than usual because of his edema. Tonight he was 1165 grams. I wondered what he would be if he didn’t have
edema and he was just growing normally.
I continued with my nightly ritual of reading a Dr. Seuss
story to Nathan. Jean was his nurse
tonight again and her and Kevin sat in the next room while I read him his
bedtime story. I think he liked those
moments between him and his mom. I also
liked to think that he knew my voice and could tell the difference between me
and whichever nurse he had. A mom can
dream, can’t she?
There were lots of ups and downs the past few days. If Nathan continues down this road of
urinated bit by bit and increasing the amount that is in his diaper, than I
think we have a good chance of his edema going down. We just hope and pray to his Grandma and
brother that everything will be all right.
I was in desperate need of some good sleep since the past two days have
been very emotional so Kevin and I headed back to go to bed. Another day awaits us in the morning.
Nathan’s Nightly
Update 12/30/13
Hello Everyone!
I am sure some of you were
wondering or worried why there was no update last night. Well yesterday,
Nathan didn't have a good day and we were very scared that things would
possibly turn out bad so we slept at the NICU last night just in case.
Two nights ago about an hour
after I sent the update email, the NICU called us and told us that Nathan's
blood pressure was becoming very low and they were worried about his urine
output so they were going to give him some more blood and another lasix.
I got really scared (as I tend to do) and cried myself to sleep that
night.
The next morning when we got
there, the attending doctor pulled us into the 'family room' where they tend to
have 'important discussions'. We hate that room because no good news
comes out of that room and that is the room Colin passed in. So the
attending told us that they are switching Nathan from the oscillator back to
the ventilator. The reason being is that he is just not peeing and he
became very swollen with edema earlier that morning. The oscillator,
while easier on the lungs, does put more pressure on the heart. So by
reducing the pressure on his heart, they were hoping to get the blood flowing
more to the heart so it can get to the Kidneys and get them to start working
again. This was one of Colin's biggest problems that he didn't pee so all day
we were worried. Sunday, Nathan would have either a tiny drop of urine,
that wasn't measurable or nothing at all. So we decided to sleep there because
of the situation. At 5 am they woke us up and said he had 2ml of urine!!
We'll Take It!!!!
We woke up just in time for
his 8 am care. He didn't have anything measurable in his diaper but a
spot that is visible. As the Doctors did rounds, I sat in while the spoke about
Nathan and the new Attending Doctor said that now he is off the oscillator, we
(kevin, me and Nathan) would really benefit from SKIN TO SKIN! I love
those 3 words. I told Kevin that he could do it since he hasn't held him
yet. So he got to hold Nathan today and those are the pictures that are
attached. In Kevin's words it was "Awesome" and I would have to
agree. Maybe I will get to do it tomorrow! We were hoping that Nathan
would just get really relaxed in Dads arms and just let loose and pee all over
him. We were both OK with that if that happened.
At 4 pm he peed 4ml and at 8
he peed 6ml. He is gradually getting better and we both can sleep better
tonight knowing that his kidneys are working. He does still have a lot of
edema (Emily N - I was about to call you so you could come work on him ;-)
) A resident said that this gradual urine output is a good thing
because if he peed a lot at once they would have to follow that and make sure
his electrolytes and everything were still good. So we are happy with the
gradual as long as he keeps doing it. His edema has brought his weight up
to 1165 grams, which is over 2 lbs. We wanted him to grow but not like
this. But other than that everything else seems good with him. All
his CBC levels are good and he is getting just his TPN and Lipids and he does
have an Epi Drip but they started weaning off of that.
Like his Uncle Jeff said,
hopefully one day Nathan, his Dad, his Grandpa and his Uncle Jeff will be
sitting around drinking a Killians (or 12) remembering the times that his mom
sent out emails all about his urine output! I hope and pray for that
day!.
Love you all!
Kelly, Kevin and Nathan
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