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World Prematurity Day 2017

 Today, the 17th of November is World Prematurity Day. Caroline and I met in a Neonatal Unit in Dubai  when both of our sets of twins were born prematurely and it is the foundation of our friendship and the reason Toy Box Tots was born.

What does prematurity mean to us? A lot of things, but most importantly for us,  #prematurityis unexpected friendship….

We, like all expectant mothers had an idea of the birth plan we would like, had bought far too many newborn babygrows and were as excited as any mother would be at the prospect of holding our own children in our arms.  However, our experiences were very different, both involving emergency C-sections with a room full of people ready to try and save our tiny, fragile babies, and the first time we held them we were negotiating wires, oxygen masks, feeding tubes, beeping machines and a fear of the unknown. It wasn’t the wonderful experience we had imagined or heard about from friends. Instead, it was brief and scary.

 

 

 

 

 

 

 

 

 

But now we are sitting here with 4 strong, independent, mostly completely crazy but utterly wonderful 2 year olds. You would think that our preemie days are well behind us, but NICU stays with you forever.  It changed us as women, shaped the way we became mothers, dictates the way we watch our children develop and connected us as friends.

The NICU journey can be a lonely one, but to all new NICU parents out there, you are never alone. We are all connected through our experiences and through the stories of our incredible warriors.

 

 

From 2 NICU parent graduates to all the NICU parents just starting out on this journey, here is what we wish we had known from day one;

  • The guilt you feel will pass. You have to leave your baby behind, but know that the care they receive whilst you get some much needed rest is exceptional.
  • Bliss is an amazing resource - get connected to the club. It will help you realise that you are not alone and that you will get through these dark days -  I spent every minute whilst tirelessly expressing milk searching for success stories on the Bliss website about babies that had been born at the same gestation as mine.
  • People won’t know what to say and will probably say the wrong thing so don’t take it to heart. So many people even now shrug off my children’s early birth because they’re twins. ‘Twins always come early don’t they?’. And just like that they’ve dismissed those terrifying early months as something I should have expected.  My other favourite was ‘At least you get to sleep’.
  • As hard as it is at the time, be patient. Your tiny baby is fighting so hard to be alive and wishing them home too early won’t help. In fact, 3 out of our 4 were readmitted to the NICU after being discharged which was horrendous and the last thing you want. Even if doctors give you a timeline, it can change in the blink of an eye and so stay patient and when your friends and family keep asking when they will be home, just say you don’t know. Your babies are in the best place and and you most definitely do not want to take them home too early.
  • NICU really is a rollercoaster. Your baby can make huge progress 1 day and take 3 steps back the next.  Celebrate the tiny improvements and don’t get too disheartened by those days when you feel you have gone backwards. Every day is a new day and one day you will walk away from there.
  • The nurses who work in the NICU really are angels. They work tirelessly to keep your children alive, all with a smile on their faces. They can teach you so much - not just about how to care for your preemie, which stops you feeling so helpless, but also a newfound respect for the type of people who take on those roles. I didn’t appreciate them enough during my time in the NICU, I wish I had said thank you more often.

  • And finally, the best advice would be to connect with  the other parents around you. Your thoughts can isolate you and put you in a very harrowing dark place, where you feel like no one understands,  but the other parents in there know what you’re going through and are the best people to lift you up and carry you out of the darkness. The hope, the hugs, the tears and the support you can give each other are the most important part of the journey and will never be forgotten!

My twins share a scar across their shoulder blades, a reminder of the operation they both needed to close a valve in their hearts, their heels and hands forever marked with small scars from blood gas heel pricks and IV lines, but they are reminders of how far they have come from their tiny beginnings.

I am still in touch with a number of our fellow NICU graduates, and play dates with those children and their mums are so special. Others would see them as a group of normal 2 year olds but we know what it took to get there. Caroline’s and my friendship grew from a fleeting conversation waiting for the lift as we both left the NICU one day, where having been in there for a month already, I wanted to be able to reach out to her and tell her that she would be ok and those tiny little girls she had just delivered would fight to live. And here we are today, running a business together, founded on that meeting and the friendship that has developed since.

So for us, #prematurityis our forever connection.

 

 


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