Hand to Hold's Official Blog: Written by Parents for Parents

When Your Former Preemie Needs Major Surgery

Recovering from kidney transplant

Recovering from kidney transplant

Like most micro-preemies, my Daphne, faced many challenges in the NICU:  2 months on the respirator, BPD, infection scares, digestive issues, kidney failure… With all that, one thing we did not encounter was surgery. Yet, we knew from the very first days that she would need major surgery, eventually. She was born with two congenital heart defects, an ASD (small) and a VSD (very large) that would need to be repaired through open-heart surgery.

She was discharged at five months with a surgery date on the calendar. We were, needless to say, terrified, but excited that with her heart fixed, she would be able to kick her oxygen habit. Heart surgery was, dare I say, easy. The procedure was successful and totally uneventful, and four days later, she came home again. Daphne still sees the cardiologist once a year, but there are no concerns. She has a healthy heart.

Her kidneys, on the other hand, did not recover from the injury they suffered at birth, when her identical twin passed away. A little over a month ago, she had a kidney transplant. Much like the heart surgery, we had plenty of notice that this was coming. This time, Daphne and her Daddy would head to tandem ORs: he was her kidney donor.  Sitting through your child’s surgery is hard enough – when it is your child and spouse, at the same time, it is a special kind of stress that I don’t recommend.

The surgeries were successful and Daphne headed to the PICU to recover. I breathed a huge sigh of relief, and looked forward to getting her home in a few days.  I was not worried about recovery. I am a veteran hospital mom, after all. I know the PICU routine, and I expected an easy ride. I was wrong.

Recovery from transplant was infinitely harder than heart surgery. A four-year-old is much more aware – and capable of resisting and protesting – than an infant. Daphne was scared and unhappy, clearly in pain. If you have ever been a patient in a teaching hospital, you know that there is a steady stream of people entering the room, at all times. Daphne whimpered every time a nurse or doctor entered her room, and screamed loudly if they tried to touch her.

Something happened to me during that week:  Daphne’s pain and vulnerability snapped me back into the fearful NICU mom, four years later. Although doctors kept repeating that everything was going absolutely according to plan (beautiful labs, great numbers), Daphne was not behaving like herself. I watched her monitor suspiciously, expecting desaturations and apneas. I stayed up at night and kept track of her heart rate, respiratory rate, urine output, even though the PICU nurses were more than qualified for that job. I begged my stubborn child to sit up so her lungs could fill all the way. If I had been hooked up to a monitor, my vitals would probably had been less stable than Daphne’s.

My reaction took me by surprise, but it shouldn’t have. Old NICU habits, such as monitor watching, die hard. The whole sensory package of being in the hospital – the smells, the sounds, the sleep deprivation – reawakened an old anxiety that had been buried, but clearly not gone.  The NICU experience, even when it is years in the past, sometimes rears its ugly head. It’s unpleasant, but it is helpful to stop, take a deep breath and remind yourself that “that was then, now is different.”

Melissa Haber About Melissa Haber

Melissa Haber (NY) is mother to Daphne, a surviving identical twin who was born at 27 weeks 4 days, moments after sister Leah passed away. Daphne was in the NICU for five long months, and had open-heart surgery to repair a congenital heart defect when she was six months old. At three years old, she continues to battle kidney disease and other delays related to her prematurity. Daphne is proud to have the greatest big sister in the world, six-year-old Lucy. The family lives outside of New York City. Melissa blogs regularly about life with a former micropreemie, parenting challenges, and loss and grieving. You can also follow her on Twitter.

Comments

  1. Old habits do die hard. With Caleb’s surgeries and major visits (we travel out of state for medical care) the “notebook” comes back out where I log everything, track everything, trend everything. Doesn’t help that I am a nurse, so it is second nature- but the trigger is seeing your child in a vulnerable position and mama bear trying to control/protect her baby. We can only hope hope that as they grow, we will have developed better coping skills though I can see us in the future still eyeing the monitors.

    • I hope… I am trying to work on my coping skills while she is well. I know that when she is sick, it all goes out the window 🙂

  2. Crazy enough – my old NICU habits came back when my older, full-term daughter had a routine surgery that several kids have – a tonsillectomy. No big deal, so I thought. I had been through much worse with 24 wk twins in the NICU for 4 1/2 months. But, those memories, come back whenever they want. The sights, smells, sounds of the hospital all triggered those old NICU habits, even when it was a simple surgery. I can only imagine the fear you had with your daughter and husband undergoing major surgery.

    • I can totally see how that can happen. I had a minor procedure last year and I caught myself watching my own monitor. Crazy!

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