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| Birth Day - August 10, 2010 |
August
7, 2014:
Four years ago, on August 7, I
called my OB's office early in the AM to ask about the headache I had suffered
from for over a week. I asked to be seen and she offered me an appointment on
Monday (it was Saturday morning). Could I take more Tylenol than suggested? Read the directions on the
bottle, she said. About 8 hours later, with a headache, nausea, and chills...I
called the office again and got the doctor on call. She asked me to check my
BP, but I insisted I was coming to the hospital. My BP was 211/115 or so and I
mentioned that something was wrong with their BP machine. "No, honey,
there's something wrong with you." We immediately chose a name and I was
transferred the next day to a hospital that could care for such an early baby.
At the new hospital, they spoke of bedrest (in the hospital) until I hit 35
weeks or so. I was given "the mag" to stop seizures and possible
stroke and to protect Jack's still-developing brain. I was also given steroids
to help speed up his lung development. Then suddenly, the conversation shifted
and there was discussion about not being able to save both our lives. The drugs
to keep my BP at safe levels were not working. My life was in danger. (I'm sure
there is more to this story, but "the mag" keeps the patient pretty
"out of it" and also causes memory loss.) I knew I didn't want to
die, but I was so, so unaware of how precarious life would be for Jack on the
outside. Had I known, I'd like to think I would have fought against the
emergency c-section (probably to no avail). I was awfully calm, a nurse noted.
I didn't know any other way to be. Not long after, Jack was born (weighing 2lbs
1oz) and ready to fight for his life. The surgeons said, "Hi Jack!"
(so glad we chose a name) as he cried quietly. I didn't see him until over 24
hours later. What a journey it has been!
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| First Birthday - August 10, 2011 |
August 8, 2014
(Fine print: I
apologize for any confusion yesterday.
Jack’s birthday is on August 10th, but I feel like his birth
story starts on the day I entered the hospital and we named him). We abruptly stopped our normal lives and
entered the world of the NICU. We
discovered that Jack was very sick and smaller than a typical 28 weeker. He (and we) would spend four months in the
NICU, slowly becoming strong enough to come home, but not exactly what one
would call healthy. Once home, we would
survived from one tube feeding to the next, hoping beyond hope that someday our
boy would eat on his own and breathe without support. It was a blur of inserting NG tubes, giving
medications, preparing special formula, fighting with insurance companies,
therapy sessions, RSV injections, and specialist appointments. All with the happiest boy in the world. Despite his rough beginning, Jack’s
personality was more than smiley! Once
he was finally relieved of all his tethers, tape and tubes (at about 10
months), we started to see him hit some typical milestones…sitting up on his
own and crawling at his 12-month doctor’s appointments. As he turned one, I
slowly stopped holding my breath, realizing that he just might survive. He was growing stronger every day. At a time when I thought I would also start
feeling more like myself, I instead started to relive the NICU nightmare,
become very irritable and crying for what seemed like no reason. While he was in the NICU, I wrote almost
daily about his days. As I relived those
days a year later, I realized that what I wrote was not exactly what occurred…I
was protecting myself (and others) from the trauma of the NICU and the war that
is too often waged by 2-pound soldiers.
PTSD…it’s not just for vets. I
learned from other NICU moms that it’s only natural that surviving year one
would now allow time for processing what really happened. Both Jack and I had faced death and we
survived. That’s when I felt the need to
start blogging about what prematurity and the NICU life (and after) is really
like. So while Jack was happily on his
way to healing, my healing (both physical and mental) was just beginning.
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| Second Birthday - August 10, 2012 |
August 9, 2014:
As Jack turned one, I still bought
into the hype that preemies typically catch up at age 2. He started walking at 18
months and running shortly after. He loved to play at home with his toys and
books and watch Mickey Mouse. He was happy all
the time; except when we went to his many, many appointments. He received, for
the 2nd year, Synagis injection that helped his body create antibodies that he
didn’t have from being from early. A common cold for you (RSV), could have put
Jack back in the hospital or worse. We kept him healthy, giving his little
lungs time for growth. He might have missed some family events and trips to the
grocery store, but he didn’t know it and kept smiling! He was signing, but not
saying much. As he approached two, we realized that “catching up” was going to
be later for him and increased his therapies to three each week: Occupational
(which he was receiving since 6 months old), Physical (started at 12 months),
and Speech (at 18 months). They were fun “play” times for him, with one-on-one
attention from great therapists who became like family to us (especially during
“lockdown”). Finally, the summer before
Jack’s 2nd birthday, we gradually “let go” of the fear of RSV and other illness
and spent an awesome time doing all kinds of things together. The beach.
Restaurants. Amusement parks. Family events. Playing with cousins. Disney
World. And Jack’s first real illness (of many to come)…a cold that turned into
an ear infection and pneumonia within days. Discovered he still had atelectisis
(a complete or partial collapse of a lung or lobe of a lung) despite the two
years of growth. We also mixed in a possible seizure, a trip to the ER and an
EEG.
The years between ages 1-3 are a blur…the days were long, but the years seemed to fly by. I took another year of leave from my job and eventually resigned to become an official stay-at-home-mom (SAHM). And boy did we stay at home. Preemie parents call it “lockdown” since many of our little ones suffer from Chronic Lung Disease (CLD). We knew the first 2 years were critical for Jack’s lung health, but it wasn’t easy staying home so often or missing so much time with our family and friends. While I wasn’t the mom I thought I’d be, I’d like to think I was exactly the mom that Jack needed. I wasn’t just a SAHM…I was a therapist…I was a nurse…I was a nutritionist…Iwas an advocate for my child. I mixed playtime with therapy goals and administered meds while we watched Mickey Mouse. I added heavy cream and butter to as many meals as I could and encouraged Jack to eat his mac & cheese before his peas…hoping that just once, we would see a doctor or specialist and they’d have something positive to say about his weight. I blogged and I shared our story. I joined the Family Advisory Council to help other families at Penn State Hershey Children’s Hospital. And I so desperately wanted, no, needed everyone to understand what we had been through. I spoke with a therapist who compared my concerns about Jack’s health and delays to parents who were disappointed that their son didn’t play the piano as well as they’d like. (The opposite of understanding or “getting it.”) I moved on. I found fellow preemie moms support group and I got more “therapy” in that one meeting than I ever did with my real therapy sessions.
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| Third Birthday - August 10, 2013 |
The years between ages 1-3 are a blur…the days were long, but the years seemed to fly by. I took another year of leave from my job and eventually resigned to become an official stay-at-home-mom (SAHM). And boy did we stay at home. Preemie parents call it “lockdown” since many of our little ones suffer from Chronic Lung Disease (CLD). We knew the first 2 years were critical for Jack’s lung health, but it wasn’t easy staying home so often or missing so much time with our family and friends. While I wasn’t the mom I thought I’d be, I’d like to think I was exactly the mom that Jack needed. I wasn’t just a SAHM…I was a therapist…I was a nurse…I was a nutritionist…Iwas an advocate for my child. I mixed playtime with therapy goals and administered meds while we watched Mickey Mouse. I added heavy cream and butter to as many meals as I could and encouraged Jack to eat his mac & cheese before his peas…hoping that just once, we would see a doctor or specialist and they’d have something positive to say about his weight. I blogged and I shared our story. I joined the Family Advisory Council to help other families at Penn State Hershey Children’s Hospital. And I so desperately wanted, no, needed everyone to understand what we had been through. I spoke with a therapist who compared my concerns about Jack’s health and delays to parents who were disappointed that their son didn’t play the piano as well as they’d like. (The opposite of understanding or “getting it.”) I moved on. I found fellow preemie moms support group and I got more “therapy” in that one meeting than I ever did with my real therapy sessions.
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| Fourth Birthday - August 10, 2014 |
August 10, 2014:
Can he really be 4?
Has it really been 4 years since that traumatic day? Are we really four years into this
journey? Some preemie parents in the
NICU envision the future. I couldn’t see
past the day-to-day and still often don’t.
So Jack being 4 is such an awesome surprise to me. He’s feisty and funny, silly and sassy,
lovable and LOVED. In this fourth year,
he started preschool…loved it…and made so much progress in socialization,
speech, and in his fine-motor & gross motor skills. He became a big brother. He is STILL obsessed with all kinds of
transportation and can now identify the makes of most cars. He even knows the difference between Honda
and Hyundai. Of course, he also can
identify the alphabet and numbers and colors and shapes! The conversations we have with this kid are
amazing! And each day he comes up with
more and more to say. He has imaginary
“signs” that spell out what he wants “right now” and “every day.” He’ll say, “My sign says I can stay up all
night.” Or, “The sign says to go
outside.” He loves to be a “Yard
Crasher” with daddy and do BIG JOBS with him.
Right now he’s outside building something from Lowe’s. He’s always ready to get his tools or go on
an adventure with mom. He wakes up most
days asking, “Where are we going today?
Who is coming today?”
Basically, he’s HAPPY! And he is
Jack-HEALTHY, meaning he still has CLD, which is treated with daily inhalers
and extra meds when sick. A cold might
last a little longer than typical for others, but he handles it just fine. And he still needs some extra support for his
fine & gross-motor delays. But,
during his most recent IEP (Individualized Education Plan), he was able to be
discharged from Speech Therapy and decreased the number of Occupational Therapy
session to every other week! Physical
Therapy will still be every week and he’ll be attending pre-school 3 days/week
this year too.
As for me, there are days where I have constant
conversations in my head, about prematurity awareness and understanding and
educating, and I still desperately want to make things better for new families
affected by prematurity. So I am now
co-chair of the newly formed (Jan 2014) NICU Advisory Council at PSHCH and a
board member of The Foundation for Prematurity.
And then there are days when I want to just let it all go and pretend it
never happened and isn’t still affecting our lives (as if). For it is still affecting our lives and may
always do so, but the impact seems just a little less each year and for that I
am grateful. I’ve learned so much from
Jack and from this journey. I’ve learned
to let go of expectations. I’ve learned
to be more compassionate. I’ve become
more decisive (when it matters) and more aggressive (when it is
necessary). All because and all for Jack
and now Harper! I’ve learned that
parenting is hard, not matter how early or on-time your baby arrives. For me, parenting a preemie has been
different and more extreme than parenting a full-term (or close to it)
babe. But the love for them is the
same. And it is a big, big love. HUGE.
And I’ve learned that all I want for both of them (no matter when they
were born) and for myself is to be HAPPY and have a LIFE THAT’s GOOD!
