2523 grams.

2523 grams. Or 89 ounces in old money. That’s how much the twins weighed when their little weights were added together when they were born.

I remember thinking that collectively, they weighed less than some of the beautiful bonny babies I’d delivered a few weeks previously to the twins turning up, far earlier than was ever in my birth plan. What a privilege it was to do that job. Admittedly long hours and huge responsibility, yet the joyful role of midwife was one which saw me see the moment new families were created in an instant. Crying dads always set me off as I daily saw the immediate love in new mummies’ exhausted but elated eyes. Nothing beats it.

Didn’t quite work out for us like that though. Tears of elation were replaced with tears of far more negative emotion.

Born at 29 weeks, our twins’ early arrival deemed they had entered a special club for premature babies. They weren’t tiny enough to be considered micro-premmies (those born before 26 weeks) but Zach did attempt to gain membership of that special order by dropping his weight to below 1lb 12 oz in the first couple of weeks.

The babies were small, frail looking and almost a little bit see through. Skin as thin as paper where I could see the network of tiny blood vessels that mapped their bodies to keep them alive. That, and a whole bunch of machinery that alarmed every few seconds to alert hard working nurses to one problem after another, which kept them very busy. Tiny bodies being kept alive by huge machines, some tubes of which hid their heads so I couldn’t see their faces. Too small for tiny nappies, toes tinier than you can imagine, little tiny frames tucked into nests made of hospital blankets. Kept warm inside their plastic boxes whilst all I could think of was how they should be tucked up inside me, not fighting for their little lives as I watched on, broken hearted.

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The time you spend in NICU (neonatal intensive care unit) is like you are living in a bubble. It’s high risk care at the extreme, but with pictures of the odd Disney character or sea creatures adorning the walls. The monitors and attaching wires are as complex as they come, yet the associated sticky pads on your baby have teddy bears on. The hat your baby wears is like any other knitted bonnet, albeit with a flap at the front for Drs to scan their brains or to allow tubing. It’s an environment hotter than the tropics, but is far from a holiday.

The experience does however let you ride the biggest rollercoaster you’ll ever get on. However, it’s more of an emotional one than one you’ll find in a theme park. Things can be stable one minute, yet critical the next. You move from elation as their oxygen requirements have decreased to the next frightened half to death as they believe he may have some life threatening infection.

Germs become your biggest fear and handwashing your biggest obsession. You become an honorary neonatal professional,  learning all the lingo and what each machine is pumping into your baby or alerting you to. You know the tests, the investigations and what they are for. You know the normal parameters of these results. You learn the art of when to be calm, when to worry and when to plain and simply freak out. Freaking out is a regular occurrence. Sleep is non existent. Crying almost constant.

The emotions you experience whilst in NICU are quite extraordinary. The plastic incubator acts as a barrier between you and the most precious thing in your whole world. Nothing seems more important at that time than what’s lying there, seemingly helpless. What I learnt over time is that it was me that felt the helpless one. The baby has proud ownership of the biggest courage and will to live in existence. All I could do was watch. Well, that and express pitiful amounts of milk every three hours that was hardly even enough to sustain a sparrow. Not that he was much bigger than a sparrow….

There is something that’s ingrained in you when you have a baby, a maternal strong force that makes you want to protect and nurture your new arrival. I couldn’t do that. I couldn’t feed him. I wasn’t allowed to touch him. I didn’t hold him for three weeks. For all I knew, he didn’t know I was there. The nurses mothered him and kept him alive. The drs made decisions for him. I just sat vigil at his incubator side, occasionally whispering through the little door that ‘mummy is here, keep fighting little fella. I need you to survive’. Only I had to do that into two cots. As two of my babies fought their biggest battle to date.

Survival was all I needed from them at that time. I remember thinking over and over in my head that if they survived, I would never shout, never be angry, never nag them to do their homework or to eat their broccoli when they grew. I just needed them to come home.

There were times when that seemed increasingly unlikely. One particular terrible week, Zach was fighting meningitis for the second time. I couldn’t see how someone that small could fight such an evil disease twice, yet survive. I walked into the unit one day at the worst possible moment, as I found a whole host of medics and nurses resuscitating him with an bag and chest compressions as the disease invaded his little body. I was ushered into the family room, and I sat there alone, waiting for a doctor to tell me whether they’d saved his life yet again.

They did. Not all the twins neonatal neighbours were as lucky.

I know how lucky we are. We brought both of our babies home. Facebook ‘on this day’ regularly and rather at times, unhelpfully, reminds me of the struggles we had this time 7 years ago. Timehop shares with me special moments of cute times with my children, but also haunts me with my memories of the anguish of that time. Painful memories are hard to erase and the time we spent in NICU was a very painful one. One where we have not escaped unscathed. Social media has a habit of throwing those memories at me when by now I should really expect it.

Prematurity has robbed us of so much. Reuben has quadriplegic Cerebral Palsy due to the brain bleed he had because he was premature. Zachary contracted meningitis because of his early vulnerable state, has CP and his brain hasn’t developed properly because he was premature. Both boys will need care for the rest of their lives. I still hear those god damn alarms in my head. I can still smell the unit’s characteristic smell.  This is the reality of premature birth. Prematurity can damage lives and rob families of a ‘normal’ way of life. Though I’m not sure what normal life is. This is now ‘our normal’.

Tomorrow is World Prematurity Day. As I write this now, only those very close to me will realise the complete irony of this day being tomorrow. I will get up though and turn the painful memories on their heads. I will embrace this day and see it as a positive my babies lived to tell the tale. They wear the war wounds of many many tiny scars from the hundreds of blood tests. They wear an invisible badge of honour that they are NICU graduates. I have many invisible scars from that time myself.

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I will forever remain thankful to the many staff that made their homecoming possible. It’s difficult to express the feeling you have for the people that saved your babies lives. If you are by chance reading this, thank you. I really hope you know how special you are to my family. You gave the twins the gift of life, and despite the challenges we cherish that each and every day.

 

 

 

 

 

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