Easter sunday when everyone was at our house for lunch and to spend
time together seemed like any other day, I was busy getting food ready
for everyone and stopped periodically to wake Eleanor up to feed her a
few times throughout the day. My family was holding Eleanor all day and I
noticed she seemed to be making some cooing sounds periodically but
didn't think anything of it. She also had a tendency to look like she
was breathing heavily if she is in a scrunched up position like her car
seat or if she is held kind of balled up. I noticed around 4pm while my
sister was holding her that her cooing seemed more like
grunting/whimpering and was now with every exhalation. She was breathing
heavily and much more quickly and from across the room it hit me like a
ton of bricks that something was wrong. I grabbed her from my sister
and immediately stripped her easter outfit off of her and started to do a
full head to toe assessment. She was breathing really quickly and
retracting, felt a little warm (but not hot). She was mottled and pale
and lethargic, she wouldn't really wake up and her arms and legs were
pretty limp. I realized I had woken her up for every feed for the past
day or so and that she hadn't really opened her eyes much at all but I
figured she had just been snuggling with lots of people and loud noise
around and kind of "shut down" like babies do when they're
overstimulated. I immediately called the nurse practitioner's office at
work to ask one of them to listen to her grunting over the phone and
describe her symptoms. My sister went and grabbed the thermometer while
the phone was ringing and her temp was 99.4, that's not alarming unless
its a 2 week old baby with no reason to have a higher than normal
temperature matched with other symptoms of sickness. Dr. Go, our head
neonatologist just happened to answer the phone and I asked her to "talk
me off a ledge" and reassure me. She said she couldn't and based on the
symptoms I was describing told me to bring Eleanor the ER immediately.
She told me she thought she could be sick and that if it wasn't RSV or
flu that she would take Eleanor to the NICU if she had to be admitted.
We literally NEVER take a baby that wasn't just born at KU that day or
while it was still inpatient unless that baby was a NICU baby we had
that had been discharged and returned within 30 days of discharge OR if
it was a transfer baby from another hospital. All other babies no matter
how old go to the PICU or pediatric unit. I asked Dr. Go if she could
do that and she said "she's only two weeks old, she is still a neonate
by definition and I'm the medical director". Okay then. I definitely
wasn't going to argue. But at that point I really didn't think we would
be admitted, to be honest I'm not sure what I was thinking would happen,
but I was just scrambling to get things together to leave the house and
to have everyone who was still there know what to do to take care of
Henry. Taylor had been upstairs changing clothes and in the bathroom and
when he came back downstairs I said "Eleanor is sick, we are going to
the ER" and just started crying. He was so shocked that when he went
upstairs just a few minutes before, I was just checking her out and now
we were rushing to the ER. I reassured him that I just knew something
was wrong and with babies, when they get sick, they get sick FAST. I sat
in the back seat the whole time to make sure she didn't have trouble
breathing since she seemed to be in a little bit of respiratory distress
before we left the house. By the time we got to the ER her temp had
gone up to 100.7 and she looked even more pale and limp but wasn't doing
the grunting thing anymore. They got us into a room immediately and
started to do a septic workup. We were already exhausted.
That
includes getting a lot of blood work using sterile technique to get a
blood culture and check other labs, then they got chest Xray, nasal wash
for flu and RSV, urine culture via urinary catheter and then a lumbar
puncture to culture her spinal fluid to rule out meningitis. They had a
few of my NICU nurse friends come down to get her blood work since we
are used to that and the ER nurses aren't as comfortable with babies.
Her flu and RSV panel came back negative, thank god, we would hopefully
be allowed to go to the NICU since they had planned to put an IV in her
and give her fluids and antibiotics for 48 hours until the cultures came
back. Her chest Xray was negative as well but her urine in the tube
after her culture looked cloudy and that's never a good sign. They did
her lumbar puncture and that is usually incredibly painful for babies and
adults. Adults scream bloody murder during them and so do babies and I
was bawling just thinking about her having to go through that and so
scared they wouldn't get a good sample and either have to repeat it or
not be able to read it out if it got contaminated by blood. Luckily
there were three of us to hold Eleanor still and the doctors were
fantastic and got the sample quickly and clearly. Then it dawned on me
she hadn't made any noise or even opened her eyes or flinched. She
literally "slept" through the lumbar puncture. I knew then how truly
sick she was. Her temp continued to climb and was 101.8 when we finished
the testing. We knew then that she would be admitted for sure and I
started crying knowing that I would have to be away from Henry for a few
days. The day Eleanor was born the hospital went on lock down for
flu/RSV season since it hit so late this year. That means no children
are allowed to visit in the NICU to prevent the spread of illness. I
knew also that I couldn't leave Eleanor because I was breastfeeding her
round the clock and that I wouldn't leave her because she needed me
more, but it still made it so hard to be split in two.
Two of my
NICU friends Quinn and Lauren came down with the isolette to get Eleanor
and take her back to the NICU. Poor Taylor realized then how serious
this was and seeing his baby in that bed made it all so real and so much
scarier.
We
got settled upstairs and after several pokes they finally got the IV.
Turns out Eleanor has HORRIBLE veins. They got the first round of
antibiotics in her just in time because temp spiked to 104. She got a
dose of tylenol and I got to nurse her and it started to go down, thank
god. Dr. Go came in and told us her urine analysis came back showing
lots of bacteria and white blood cells indicating that even though the
culture was not back yet, the root of her sickness was probably a UTI.
If that was the case she would have to have 10-14 days minimum of IV
antibiotics in the hospital. I just broke down crying, she was going to
have to go through alot more pokes and we would both be stuck there
without Taylor and Henry for 2 weeks. I felt awful. I rushed out the
door so quickly to go to the ER that I didn't get the chance to really
even tell Henry goodbye and now he was going to have to be without me
for 2 weeks?! I felt guilty enough for leaving him for 2 days when
Eleanor was born and turning his world upside down by bringing her home
and his life changing so much and now I just vanished? Ugh, it still
makes me so sad just thinking about it.
The
next day we got the news that her blood culture had come back positive
for bacteria. Whatever was making her sick was in her whole tiny little
body at this point. They weren't sure what type of bacteria it was yet
but that she would still be staying for awhile. The whole time I was so
grateful she was in the NICU instead of on the pediatric floor because
then she at least wasn't being exposed to bigger badder bugs and flu and
RSV. Not to mention I had my friends and coworkers caring for her and I
knew she was getting the best of the best. We truly were treated like
family there and I will be forever grateful.
My poor girl in her tiny little hospital gown. She was so weak.
By
Tuesday her urine culture had officially come back positive for E. Coli
as well as her sensitivity to determine the type of bacteria in her
blood culture for the same. She was switched to different antibiotics
that specifically attack the E. Coli and thankfully the repeat blood
culture (she had to get poked nightly to recheck her blood cultures)
from monday night had come back negative already, the antibiotics were
already working really well and Dr. Go was very pleased with her turn
around. She was awake and starting to act like her old self. She was
even trying to sit up on her hands and look at me and to see her awake
with her eyes open was the best sight ever!
We
were told if she could have two negative blood cultures for 48 hours of
growth each that we could potentially switch to oral antibiotics and
finish them at home! YAY!
The
main question in all of this is how did she get so sick, so fast, so
young? Let's be serious, it's not like I don't know how to wipe a baby
girl during diaper changes and Taylor has been super super nervous about
having a girl and making sure he was doing diaper changes correctly so
we know that surely couldn't be the cause. The infectious disease team
consulted on Eleanor and came to round and speak with me each morning.
The attending told me that 7-10% of newborns get a UTI within the first
month of life. Who knew!? Not me. He explained it's more common in baby
girls and also in breastfed babies. Breastmilk stools are really runny
and mother's milk isn't plentiful in the first few weeks so there isn't a
ton of urine to flush out potential bacteria from the runny stools and
just in general from the urinary tract. I asked why we rarely see UTI's
in NICU babies if this was the case, he reminded me that most of them
are on antibiotics just in case and IV Fluids from the very start and
this takes care of both issues. Makes total sense. But the fact Eleanor
got so sick, he was a little more stumped. They started asking if we had
family history of UTI's in our family and there really isn't much. Then
they asked about kidney issues. DING DING DING!!! HENRY!
Henry
has kidney issues, he has had hydronephrosis (swollen kidneys) since I
was pregnant with him. We have been doing kidney ultrasounds and a few
bigger scans since he was 2 weeks old and been watching him like a hawk
but he has had no symptoms of trouble and no UTI's. The team decided to
check Eleanor for the same issues or other ones.
Thursday
we got her second negative blood culture back for the second day which
meant that we could go home on oral antibiotics! Hurray! This whole time
I had only seen Henry twice for about an hour. Taylor brought him up to
have lunch with me one day and to have dinner with me another. It was
so hard to be away from him and I cried and cried and cried that he was
being shuffled from place to place and person to person to watch him so
Taylor could be with me and Eleanor and sneak into work a little bit
too. We did facetime a few times every day and thank god for that.
He was always happy to see me on facetime and he seemed super happy to
see me and didn't cry when Taylor took him back home each time but I
knew he missed me. When they took me to dinner, I sat in the back seat
next to him and he grabbed my hand and held it to his face the whole way
there and back in the car. Poor baby.
That
being said he got lots of time with his grandparents and Aunt-E and he
had a blast with them which helped me feel better. He went on a few long
runs with Aunt-E and even napped through one of them.
Before
we could go home they did Eleanor's kidney ultrasound ( I slept through
it, I didn't even hear them come in the room or anything) and then she
went downstairs to radiology to have her bigger kidney scan done.
It's
called a VCUG and it stands for voiding cystourethrogram. They insert a
urinary catheter and fill her bladder with contrast and then put her
under an X-ray machine and take pictures as she pees and watch where the
contrast goes. Ideally is should all be squeezed out of her bladder and
down and out, Eleanor's bladder squeezes urine down and out but also
refluxes the urine back up into her ureters toward her Kidneys. She
luckily only has grade 1 reflux which is the least severe and hopefully
she will outgrow it. Until she does, however, she will have to be on
antibiotics daily to prevent another infection that could scar her
kidneys and urinary tract along with making her very sick again. This is
after she came back from her scan right before we got to go home!
Coming back home never felt so good!
