The After Life

For some reason, when they told us we could take Madeleine home, I thought “it” was over; this whole saga of having a premature baby was over. We had got through it; we were finally going to be a ‘normal’ family, with a newborn at home.

How naïve I was …

It’s weird when I think back to this time; almost surreal if I’m honest. The intensity of saying goodbye to the Doctors and Nurses in the NICU was something I was not prepared for. These people had become our family; our support network. How were we ever going to do this on our own? I had no idea what it meant to be a Mum outside of those NICU walls. For the entire 115 days that I had been a Mum I had been in that environment.

All of a sudden it hit me, “Holy Sh*t, we have to do all this by ourselves. What if she stops breathing? What if she chokes on her medicine and needs CPR again? Will I be able to do that? How will I know she’s getting enough oxygen?” – Not the normal set of questions new parents taking their baby home for the first time are asking themselves I’m sure.

But you adapt don’t you? We attached Maddie to her portable oxygen tank and walked out of that hospital, the place that had saved her life, the place that she grew from 609g to 2.4kg and the place that my darling Charlotte, her twin sister, both lived and died in. I underestimated the toll it would take on me; I have never suffered with anxiety, panic attacks or depression but these things would soon become regular additions to my life.

Life outside the NICU, life as parents to a “newborn” was not easy. I was consumed by fear that she would suddenly die, that I would find her blue in her cot and would be unable to ‘wake’ her. I distinctly remember the first night she slept through; I was hysterical. I couldn’t even bring myself to look in her cot. I made my husband check as I was convinced she had died (even though she had a breathing monitor on her overnight).

And when I wasn’t worried about her breathing, time at home in those early months was filled with endless appointments with specialists, allied health professionals and nurses (don’t get me started on community nurses who know NOTHING about premature babies). And not to mention the at-home physio routines that seemed to dominate most of her awake time. When I look back now on those first 6 months after discharge it’s amazing to me that Madeleine and I were able to bond at all. I was like her executive assistant, every minute (almost) felt like it was scheduled.

We’ve since had a full-term baby girl and let me tell you that I have savored every superfluous and excessively long cuddle with her but it’s also made me realize just how much we missed out with Madeleine. We missed out on that first cuddle, that first kiss, that first feed in those first hours of her life and then it feels like she’s missed out on much more even when she finally got to come home.

But, it’s also not all bad – is it? How many parents can say they have seen their newborn babies make miracles happen? How many new parents are in awe of their newborn baby’s strength, courage and resilience? Think of all the stories we’ve heard (and seen) as premmie parents and we are blessed to be surrounded by examples of the most phenomenal little humans. I, for one, am so proud to be Premmie Mum. It has taught me about perspective and to appreciate the now just that little bit more. I have one baby who I love from a distance and two beautiful girls here with me. I am still consumed by fear at times and my anxiety and panic still plague me, and that’s ok I think. They are my scars, they remind me that things are different and will never be the same but they also remind me that I have very important things to be fearful for. We have all fought hard to be ‘here’ and wherever ‘here’ is for you right now, let it be full of hope, love and possibilities!

She will continue to amaze me, I know she will, as your prems will too!

With love to all our premmie families, forever changed.

Alyssa

For my darling girls, all three of you!