What I Want You to Know is a series of
reader submissions. It is an attempt to allow people to tell their
personal stories, in the hopes of bringing greater compassion to the
unique issues each of us face. If you would like to submit a story to
this series,
click here. Today’s guest posts is by Lindsay.




What I want you to know is that having a preemie is really, really
scary. When I was little, I had a Cabbage Patch Kid that was a
“preemie.” His name was Christopher and he was chubby and pink and came
free of scars. Real preemies are rarely chubby and most of them come
with lots of scars. Not that I had any reason to think about any of that
when I was eight. I didn’t even think about that twenty two years later
when we found out we were going to have our first baby. Why on earth
would I? Everything was going ducky until my appointment at 25 weeks. I
was diagnosed with severe preeclampsia and was sent straight home to bed
for the weekend. By Monday morning, I was on hospital bed rest for the
remainder of the pregnancy, which I was deluded enough to believe would
still be full term. Four days later my kidneys failed and I was given an
emergency c section. My son was born at 26 weeks weighing 1 pound, 9
ounces. The emotions that follow are gut wrenching to revisit, even
three years later. There was anger, bottomless sadness, fear for my son,
fear that my husband would blame me and insurmountable anxiety. Every
second of every day. All at once.

My son’s early days in the NICU
were like a nightmare that never ended. When he was born, he was
amazingly breathing on his own. I was told that was a good thing. But I
was so out of it, I couldn’t even bring myself to acknowledge he truly
existed outside of me, let alone that he was doing relatively ok,
considering. The thing that snapped me back into reality was when his
neonatologist came into my room and sat down to talk. He had suffered a
pulmonary hemorrhage and stopped breathing. They were able to revive him
(“like, from the dead?” I remember thinking), but he was put on a
respirator and might not make it through the night and we should be
prepared, whatever that means. I don’t remember much from that night
aside from refusing a sleep aid the nurses were forcing on me and laying
in the bed with my husband, promising to each other that no matter what
happened, we’d get through it together. Our son did indeed survive the
hemorrhage. But his outcome was still very unknown. We were warned that
babies as sick/premature as he was could have any number of life long
problems including Cerebral Palsy. This was my biggest fear.

Despite
this rocky beginning, slowly, slowly, he got stronger. But it was a
minute by minute growth. One day he’d have a great success (like taking
milk the first time intravenously or his first poop which caused a round
of applause throughout the NICU), then the next day he’d have any
number of setbacks. After a few weeks, about a dozen blood transfusions,
two different ventilators, and heart surgery, he was finally strong
enough to be held by me. It was the most amazing moment of my life.
Nothing like what I imagined the first time to be, though. He had tubes
and wires that beeped and whooshed everywhere and I couldn’t move him
much, once I had him in place. But his nurses were wonderful and helped
me to forget that his thin skin was still see-through and that he was so
sick and little, he still couldn’t breathe on his own. I even managed
to forget we were in the loud, scary NICU for a few fleeting moments. I
finally felt like a really mom and not so much a dairy cow, pumping milk
for an all but unknown recipient.

Even though he was getting
stronger and slowly gaining health, I still battled intense demons. Why
had this happened to us? We didn’t deserve it. How was I going to care
for a kid with disabilities? I never blamed myself, though. I read up
on preeclampsia and talked to my doctors and understood that it was
predetermined very early in the pregnancy. So I was saved that torture.
But my knowledge didn’t stop me from losing all sense of couth and
control when a woman I worked with told me it was my fault because I
over exerted myself while we were moving into our new house a few weeks
earlier. Let’s just say, she’s lucky her jugular is still in place. This
brings me to the next hardest part of having a preemie in the NICU.
People say really stupid things. That was the only mean spirited thing
anyone every said to me. But it wasn’t the most annoying. The thing that
bothered me (and my husband) the most was when people would say oh my
<fill in the blank distant relative, friend, hair dresser,
babysitter, co-worker> had a preemie. It would go something like
this, “Oh, my cousin had a preemie. She was born two weeks early and
spent three days in the NICU. It was soooooo scary.” I know they were
just trying to help. But walking away was all I could do to keep my
sanity. I may have looked like I was handling things very well on the
outside. But on the inside I was still a ball of raw nerves. I’m sure I
made a lot of friends during those dark days (ahem, sarcasm). In part,
it was my own fault. I opened myself up to those conversations when I
went back to work as soon as I was healed. But I needed some contact
with the outside world and I was desperate to keep my maternity leave
for when our son came home. So I went into the office for a few hours
every morning before heading to the NICU for the day to help clear my
head. But this is not recommended if you’re trying to make friends or
impress people. Because looking back, I suspect I was an incredible
bitch.

As the months rolled on, our routine became much more
bearable. Enjoyable, even. Doctors started saying things like “when he
comes home…” which doesn’t seem like much, but it was like angels
singing to me. It meant they were certain he would be coming home. Tests
revealed he didn’t suffer bad brain injuries from his hemorrhage so I
wasn’t as scared of Cerebral Palsy. He was off of the ventilator and
breathing on his own with assistance from CPAP and I could even nurse
him! Things were really looking up. Before we knew it, his doctors and
nurses were talking about his amazing health. They rarely saw someone so
sick make such an amazing recovery. These conversations healed my
aching heart more than any medicine could ever do and I reveled in them.

Then,
July 2nd, 2009, 105 days after he was born, our son Walt came home.
Poof. Just like that, he was ours. Not the doctors’ or nurses’, but
ours. The NICU had a cake and a little farewell party for us and sent us
on our way. I had little fear that he’d go and do something stupid like
stop breathing (apnea in preemies is very common). Maybe it was
foolish, but I had total faith in my son’s strength and determination.
He was home to stay. And he thrived at home. But we soon found out that
having him home was almost as hard as having him in the NICU. Because of
his time on the respirator, he had lung disease. Even a simple cold
could have landed him back in the PICU on a respirator. So we were on
lock down. We didn’t take him anywhere for months and visits from family
were few and far between. Many relatives took great offense to our
almost 9 month solitude but it was what Walt needed to thrive, so that’s
what we gave him. Then, in the spring of 2010, right around his 1st
birthday, we broke the lockdown. I could finally take my baby to family
functions and parks and the super market! Life was finally becoming what
I imagined having a family to be like.

The next year was full of
check ups and physical therapy… but nothing was stopping him now. The
kid was and still is a machine. We’re unbelievably lucky that his
outcome was so good. I know many preemies that haven’t faired as well
and I’m at a loss as to how we’re one of the lucky ones. But I’m
endlessly grateful for every break we got. Having a micro-preemie is
very difficult and full of raw emotions. Some people have much longer,
sorrowful stories than we do and my heart goes out to them. Some people
have to face losing their babies, something I can’t imagine ever
recovering from. Some people have to cope with conditions like cerebral
palsy, failure to thrive and blindness. Autism, learning disabilities
and asthma are a big risk for micro-preemies and I don’t know a single
preemie mother who isn’t secretly (or not so secretly) on constant vigil
for the first sign of a problem. Because that’s what we do. Especially
we first time moms. We’re conditioned to the worst case scenario. Maybe
I’m misspeaking on behalf of the majority of us. But judging by the
preemie mother I know, I don’t think so. Your baby coughs and you pat
him on the back. Our babies cough and we rush to the pediatrician for an
RSV test. A woman walks up to your baby in the stroller to coo and you
show him off proudly. Our baby is approached by the same woman and we
hide them and shuffle off in the other direction, in fear of germs. And
that’s just fine because that’s what we have to do to help our babies
heal. Part of me hated being on constant vigil. The other part thrived
on it. Keeping Walt safe was my reason for waking. I threw myself into
it to help mourn my lost pregnancy. That may seem like a silly thing to
mourn because here I stand with a healthy toddler, so who cares about
the rest? I do. I clamp up every time a friend or someone at the
playground tries to commiserate about birthing classes or stretch marks
or how the baby kicked their ribs for four months… I never had any of
that. So I mourned – and still do.

My son has his NICU scars
from PICC lines and heart surgery but I don’t teach him that they’re
because he was sick and weak. I teach him they’re symbols that he’s a
fighter – a strong little dude with the heart of a warrior who can
overcome any obstacle. And that makes me grateful for every second of
our journey together.