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The Importance of '533' After My Son's Premature Birth

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Every time you hit a new milestone, I think 533. The first time you gave me one of your great big smiles — you know, the ones that make your whole body move in excitement — I thought 533. The first time I came in your room to see you had rolled over in your crib, I thought 533. Every time my heart feels as if it will burst due to my love for you, I think 533.

533. It is a number always there in the back of my mind and close to my heart. No, it is not the time of your birth. It is obviously not your birthdate. It is not the time that marks when I found out my pregnancy would be cut much shorter than expected, or the time on bed rest I cried as I felt helpless, knowing the only thing I could do was lay there and hope and pray you were developing enough to have a fighting chance. It is not the time when the doctor came in to confirm you were not doing well and I would have to be admitted to the hospital where we would stay until your arrival. Nor was it the time when we knew we would have a baby and I wasn’t even 29 weeks along yet.

533. What is so special about this number, you may ask? 533 means hope. 533 means fear. 533 means frustration, grief, joy, love and just about any other emotion known to man. 533 ultimately means life.

Room 533 is a little room tucked away in the part of the hospital where most don’t venture: the NICU. Room 533 is where I first got to touch your little arm as tears filled my eyes and I was slammed by grief. It was where I received a crash course in medical terminology and learned more about medical terms, equipment and diagnoses than I ever cared to know. It was enough to make my head spin. It was where I would stare at the curtain as I sat behind it pumping. While the doctors and nurses took such great care of you, I did the one thing only I could provide for you.

Amanda with her son

533 is the room that witnessed my own transformation at watching my 2-pound, 2-ounce baby fight for his chance at life. It is where I felt like a brand new mother all over again as I finally held you five days later, or as I learned to change your tiny diapers that fit in the palm of my hand (and even those were too big on you for a while). It was where I learned the importance of a gram. As I learned the routine of weighing every diaper, I would anxiously await your nightly weight check.

533 is the number I gave to the NICU staff that answered the phone every night when I would call to get an update then jot down your weight, adding it to my daily notes of your assigned nurses, medications and any other changes for the day. 533 is where a piece of my heart stayed as you lay in that little bed, while the rest of my heart broke when I would leave you at the end of the day so I could go see your brother. My heart has never felt so torn or conflicted. Each day I sat with you, room 533 and the NICU increasingly became the norm, and I would find myself frustrated, wondering if we would ever get to take you out of that place.

wagon outside room 533

Then finally, after 99 days, we left behind room 533.

We left behind the sterile smell of the hospital, the full time nurses, hospital equipment and bed.

We hugged and said goodbye to your neonatologist and nurses. I won’t lie — tears filled my eyes as I watched your wagon travel underneath the 533 sign, leaving it for good. Along with your other nicknames, diagnoses and accomplishments, we added another one: NICU graduate. Hold your head high and carry that title with honor. I will as my heart squeezes as I recall the heel sticks, blood gas tests, weighed diapers and everything else that is life in the NICU. Even though you are no longer a resident of room 533, tucked away on the fifth floor of Children’s Hospital, 533 will always hold special meaning. Room 533 was the home that housed you and all of the overwhelming emotions those three months brought. It kept you safe until you were ready to come home to us. As I said, 533 means life. I will forever be grateful for the NICU, its nurses, doctors and others who were part of our life in the NICU, and I will forever remember 533.

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Originally published: June 24, 2016
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