Pre – mature Pre – meaning to come before or previous and mature – meaning fully developed physically, or fully grown.  So, a child born before it is fully developed right. Sounds straight forward but oh dear the reality is far from it. I remember being about half way through my pregnancy and seeing images on facebook of someone I knew who had recently given birth to a premature baby and I can quite clearly recall distancing myself from this horrific situation when I had decided that it would never happen to me.

The pregnancy went well up until I was diagnosed with Pre eclampsia on a Friday and gave birth via emergency cesarean that following Monday. No warning. Just what it was, an emergency. I was one day shy of 34 weeks.

My boy had beautiful apgars, didn’t need any more than a couple hours of CPAP for his breathing. He graduated to a cot, off a cosy therm and was tolerating NG feeds all within the first week. We were pretty confident that we would be home in a couple of weeks time. I was finally discharged from hospital after a week stay.

By Day 9 of Thomas’ life, he had been moved back into intensive care due to appearing jittery and distressed. He was not tolerating feeds. I went in to visit him that day. My boy was not himself, non responsive to my voice which normally calmed him.  His fragile little body kept stiffening and he would utter a muffled pained cry. I left hospital in shock.

I remember being in Thomas’ room at home when the neonatologist rang to say some words that have never left me. Your son has a brain bleed. We feared the worst. We were told to wait and see how things progress. We didn’t know if he’d live, and if he did, what sort of life he would lead.  No doctor could tell us what to expect and they were in just as much shock as we were. They said that it’s quite uncommon for a baby at 34 weeks to have a brain bleed. Mystified were the words they used to explain their confusion.

As a parent, I felt completely numb, confused, helpless, and everything became a great big ugly blur.  During this time, I really struggled with expressing milk. My supply dwindled to an all low of 10 mls every few hours. I kept it going but the stress had taken its toll. My cesarean wound began to bleed again. I was not doing too well either.

My husband, having returned to work, took leave immediately. It was so hard telling family the news. All we could do was wait and watch our little boy fight for his life. And fight he did. We were discharged from hospital after 7 weeks in NICU. Thomas’ seizures ceased. He needed plenty of time to re-learn to tolerate feeds from a continuous NG tube, graduating to drop NG feeds, to breast and to bottle. The doctors and lactation consultant were shocked that he could breastfeed. I’m one proud mumma.

NICU is a place that we spent much of our time in. It was not the way we had planned it but it was certainly the best place for our son. Hospital became another home. Getting to know the other parents was a comfort. The nurses who put extra TLC into caring for our son made the experience more positive. Even as simple as referring to him by his name, instead of ‘your baby’ and remembering how he liked to be held after he’d had a drop feed. Pumping every 2-3 hours was hard work. Sitting in the lounge, watching mind numbing tv while I looked at pictures of my son to boost my volume felt unnatural. I longed to have him in my arms, safe at home. 

Trying to get sleep was not easy because I would lie awake thinking, worrying about whether my son had tolerated feeds. The first thing that the nurses would say when I arrived at NICU each morning was detailing how many spills and how large they were. If they hadn’t, I would be checking the charts. Weigh ins every 2 days were a big deal. Any gain was positive but a loss of weight was a downer.  Doctors rounds became an opportunity to ask questions and discuss Thomas’ progress. I learned how important it is to ask questions. One question I never asked until the day of our discharge was, when can we go home? Thomas and I had a successful 2 day rooming in stay at the NICU and I saw no reason why we had to stay after that.  Leaving NICU was both exciting and nerve raking. I finally got to take my baby home.

From Stacey Dodd, Special Needs Blogger at Minding Thomas.

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