It feels like years ago. That other side of baby’s VSD repair.
It feels like years ago. Receiving a heart defect diagnosis on my two-day-old baby.
It feels like years ago. Watching our newborn for the signs of heart failure we were assured would eventually appear.
It feels like years ago. Trying to introduce formula through a syringe when she stopped gaining weight at 1 1/2 months old
It feels like years ago. When her cardiologist said it was time to admit her to the hospital for weight loss.
It feels like years ago. Sitting in that hospital room, holding my sleeping, underweight baby.
It feels like years ago. Learning from the nurse how to insert an NG (naso-gastric) tube through my baby’s nose and into her stomach.
It feels like years ago. Returning to the hospital after being home for only one day.
It feels like years ago. Being up all night in the hospital caring for my baby, night after night.
It feels like years ago. Anxiously watching her fast breathing, counting her respirations over and over.
It feels like years ago. Micro-examining how tight her skin pulled against her ribs with each inhale.
It feels like years ago. Recording the grunting sound she was making during exhales to show to the doctor.
It feels like years ago. Worrying and wondering about how much weight she had lost each week, each day.
It feels like years ago. Holding her close the day before her first surgery to put a pulmonary artery (PA) band on, wondering if God wanted to take another baby from me.
Read my most recent miscarriage stories here.
It feels like years ago. Seeing her swollen and intubated after surgery.
It feels like years ago. Living on almost no sleep the first two days in the CICU while my baby’s condition fluctuated as she struggled to recover from both a virus and surgery.
It feels like years ago. Being told cheerfully by doctors that my baby was no longer in heart failure following placement of the PA band as I watched all of her heart failure symptoms continue.
It feels like years ago. Sending video messages to my 5-year-old to let her know how much I loved and missed her from the hospital.
It feels like years ago. Coming home from the hospital – on several occasions – wondering how long until we would be going back.
It feels like years ago. Setting a million alarms on my phone to administer medications and start tube feeds, all day and all night.
It feels like years ago. Cleaning up baby vomit every morning, multiple times.
It feels like years ago. Narrowly escaping another hospitalization for dehydration due to vomiting.
It feels like years ago. The realization – finally – by doctors that the PA band was not helping her heart failure.
It feels like years ago. Seeing her weight go down again.
It feels like years ago. Holding her all night to watch her labored breathing until we could drive to the hospital in the morning.
It feels like years ago. Walking the halls of the cardiac units, a member of the club of moms who live at the hospital with their medical needs babies.
It feels like years ago. Fighting medical staff to bring in the coveted and elusive ultrasound machine to draw blood from my “hard stick” baby to save her from multiple failed attempts.
Read my post about why my baby has holes in her heart here.
It feels like years ago. Waiting, hoping, praying during this fourth admission to the hospital that they would finally go ahead with her VSD repair.
It feels like years ago. Getting those update calls throughout her open heart surgery, scaring me to death when they called sooner than I expected, fearing it was bad news.
It feels like years ago. The heartbreaking scene of my pacifier-averse baby sucking furiously on a pacifier in her post-op starvation.
It feels like years ago. That heart dropping moment a day after surgery when the surgeon said her remaining VSDs were too big – she might still be in heart failure.
It feels like years ago. Watching her weight for several weeks and wondering whether having her largest VSD repaired would be enough.
It feels like years ago. Coming home, hoping we wouldn’t be going back.
It all feels like years ago.
But it was only 4 months ago that she had her second surgery, closing her largest VSD. It was only 3 1/2 months ago that we came home from the hospital, unsure of whether she would need to go back for a pulmonary artery band again until her smaller VSDs close.
It was such a short time ago. But it feels like a lifetime ago. Because life is so different now. Even with some holes remaining, my daughter has been thriving, healthy and strong since her repair.
It feels like years ago. Because life on the other side of baby’s VSD repair is a whole new kind of life. The normal kind of life. The kind of life she was meant to live.
Mama, before your baby’s repair, it can feel like health and normalcy are years away even when it’s actually only months. But it’s true what they say: Life on the other side of baby’s VSD repair is so much better. Soon, you will feel like this difficult moment you are in right now … was years ago.
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