This week I am so honored to be sharing my sister-in-law's story of being in the NICU with our sweet nephew. EJ was born 10 weeks early! I remember the day we found out Shannon had needed an emergency c-section and that she was still waiting to see her baby for the first time. The memory of our NICU stay was so fresh in my mind that I couldn't help crying throughout that entire day. We had a hard enough time being in the NICU for 9 days with Johnny. I am truly inspired by Shannon and Peter and how well they handled being in the NICU for 39 days!
One of the many reasons my husband and I chose the hospital we did for our baby’s birth was because it has a Level III NICU that is considered one of the best in the country, but we certainly never expected to need it. When our son EJ was born at 30 weeks gestation weighing 2 pounds and 7 ounces, we could not have been more grateful for it.
EJ’s premature birth came as a
complete shock. My pregnancy had been
going very smoothly, and my doctor described it as ideal as recently as one
week before EJ’s birth. We had no reason
to think anything would go wrong. When I
thought I was experiencing heartburn and went to the hospital just to be safe, never
in a million years would I have guessed that I would be rushed into an emergency
c-section and be meeting my baby in just a few hours. I developed HELLP Syndrome almost overnight,
and it was so severe that my baby needed to be delivered immediately for my
safety.
The many, many times I pictured meeting our
baby for the first time, it was always a moment of overwhelming happiness and
joy. It would be the happiest day of our
lives! In reality, the day we met our
baby was terrifying. The first time I
saw EJ, which was about five hours after he was born, I felt scared, helpless,
and heartbroken. I felt like I had failed
him. I couldn’t keep my little boy safe,
and he had to come out before his tiny body was ready. I was devastated.
EJ’s first photo! My husband got a quick glimpse of flailing
arms and legs as EJ was rushed to a team of waiting doctors and followed EJ to
the NICU, but it was about five hours before I got to see EJ for the first
time.
My
sweet baby looked so small and fragile.
He was covered in tubes and wires and surrounded by machines, and I
didn’t know what any of them did. I
didn’t know what, if anything, was wrong with him. I didn’t know when I could hold him. I didn’t know how long he would be in the
hospital. I didn’t know if he would
live. It was completely overwhelming,
and all I could do was cry.
EJ was 14.5 inches long and not much bigger than Sophie the Giraffe.
EJ
ended up being one of the lucky ones.
After a very scary first week during which he showed signs of a life threatening
condition, he pulled through and never looked back. From week two on, he was considered a feeder
and grower, which meant he just needed to grow and mature (be able to drink
from a bottle, maintain his body temperature, breathe on his own) so he could
go home. Even so, NICU life means constantly having to
brace yourself for something to go wrong, and it is incredibly stressful. I cried every day until EJ came home, which
he did after just 5 and a half weeks (at 35 and a half weeks gestational age)
and weighing exactly 4 pounds. Now THAT
was the happiest day of our lives!
EJ wasn’t very impressed
by his first experience with a car seat.
He weighed 4 pounds- the weight minimum for his seat. My husband was excited to get to watch a
Chargers game at home with EJ!
Fortunately, we were at a very
supportive hospital. We could visit EJ
in the NICU 22 hours a day, a lactation specialist had me pumping within hours
of EJ’s birth, and the nurses encouraged us to take as active a role in EJ’s
care as possible. We were changing his
diapers, taking his temperature, giving him baths, feeding him, and doing
anything else they would let us. I would
strongly encourage all NICU parents to be as involved as possible. Insist if you must! There are many things that we can’t do for
our babies while they’re in the hospital, but there are also a lot of little
things that we can do that can give us a tiny sense of control in a totally
unpredictable situation. It also helped
me feel more like a real mom, which is hard when you’re not your child’s
primary caregiver. One day, I overheard
our nurse briefing her replacement, and she said that the new nurse didn’t have
to worry about checking on EJ because his parents were here and they were very
independent and capable. I beamed.
We were wondering if EJ
would arrive in time for Christmas or not.
We never expected to have him here for Halloween! My mom made his cape, but we learned that
lots of preemie parents go to Build-A-Bear Workshop for costumes.
While the NICU was EJ’s home, we made it our
home, too. We hung up a banner and
pictures EJ’s cousins drew for him. We brought
as many of EJ’s own items (blankets, clothes, hats, toys, boppy) as possible
for him to use. We asked question after
question--how they did things, why they did things, did they expect that
process to change? I pumped there, we
took naps there, we brought a laptop, and we set up camp. We celebrated every tiny accomplishment, like
when EJ went from 1 ml per feeding to 2 ml.
Do you know how tiny a ml is?
It’s nothing! But it was everything.
Making ourselves at home made it easier to spend as much time with
EJ as we could and helped us feel like a family.
This picture is from our
Tiny Footprints Project shoot and was taken three days before EJ came
home. We didn’t know it at the time, but
our NICU stay was almost over!
EJ’s 39 days in the NICU were the
hardest of our lives, but like all memories, the bad is fading and we’re
focusing on the good. EJ is alive,
healthy, and thriving. He shows no ill
effects from his premature birth and will be five months old (11 weeks 3 days
adjusted age) tomorrow. He’s such a
smiley, happy little guy and by far the best thing that’s ever happened to
us. I have a sense of love and gratitude
the likes of which I previously never knew.
We were lucky, and that’s not lost on us. People who don’t even know us were praying
for EJ, and the deacon who came to the hospital to baptize EJ had our entire
congregation praying for him at every Sunday Mass until he came home. Every day my husband or I still mention how
fortunate we were or how grateful we are to have our baby boy. We take cookies and cupcakes to the nurses,
but it never feels like enough. How do
you say thank you to the people who saved your baby’s life and cared for him
when you couldn’t? One nurse told me the
best way I could thank her was to take good care of EJ, and that’s exactly what
I’m trying to do.
I have come to think of being a
NICU parent as the best club that you never want to join. There is a great sense of community among
NICU parents, and in our case in particular, a kinship among preemie
parents. You had a preemie? I may not know anything else about you, but I
will do whatever I can to help you, like other preemie parents did for us. I know the agony that you’re in, NICU parents. I know the worry and the tears. I know how
hard you fight to breastfeed, and I know how heartbreaking it is if it doesn’t
work out. I know how hard you are on
yourselves when you’re not with your baby.
I know the guilt you feel. I know
you can’t eat and you can’t sleep, but try.
I want to tell you that everything will be okay, but I know that may not
be true. I sincerely wish every NICU
story went the way EJ’s did, and I hope your sweet NICU babies will be all right.
*****
I can’t
write about our NICU experience without plugging the Tiny Footprints Project! The Tiny Footprints Project is a group of professional photographers who donate
their services to NICU families free of charge.
They arranged for a photographer to come to the hospital to take
pictures of EJ, and a friend of mine recently used them, too. Getting professional pictures of EJ taken
gave me something fun and exciting to look forward to in the midst of such a horrible
experience, and I’m so grateful! You can
see some of our TFP photos here.