To a mother on the neonatal unit,

 

Firstly, I want to say to you, that you are doing amazing.

I am a mother of twin girls. Charlotte is my surviving twin. Charlotte’s (Twin 1) waters went at 24 weeks pregnant and I spent the next seventeen days on the antenatal ward in Leeds General Infirmary. At 26 weeks pregnant I was rushed into theatre, when Charlotte and I caught an infection and her heart rate plummeted. She was born extremely poorly and we lived many days by the hour. Esme was born trying to breathe by herself. For many weeks, Esme was the strongest twin. However at seven weeks old and after a week of battling with meningitis and ventriculitis, she was left with no quality of life. The kindest, most hardest decision was to take her off the ventilation. She was with us for a further twelve beautiful hours and has since taught me many things I value most about life; to love, to be brave and to never give up on hope.

The words I have written in this letter are from my experience. You might be able to relate to some of this, you might share the same views, you might not. But I do hope, that what you do get from this, is knowing that you are not alone.

I spent a total of three months on the neonatal unit. Nothing could have prepared me for that time, as it is a life like no other.  No one can walk in the shoes of a mother of a premature baby unless they have been there themselves. It takes an unbelievable amount of strength to keep going, to put a smile on your face and to not crumble at every hurdle, whether that is seeing your baby in an incubator with all the wires and breathing equipment; being able to talk to your baby; listening to how they are doing on ward round; waiting out the unbearable, nerve wracking amount of time for test results or leaving your baby with a nurse you have never met before, at the end of the day. The list is full of endless fears but somehow, from goodness knows where, probably the mother in you, you are there for your baby every step of the way.

That smile

During the times I have revisited the neonatal unit, I am in awe of you mothers in there. I see you and I see myself, two years ago. You are busy doing your routine to get you through the day, sterilising feeding equipment, comfort holding, having skin to skin time, feeding, sorting and folding clothes or chatting to other mums or nurses. You are all smiling that smile.

I have found that there is this magical bond between mothers of a premature baby. At a glance, you have this understanding between you, where no words need to be spoken to one another, it is all in the eyes and smile. It is only you who thoroughly understand what life is like behind that smile.

That smile, is what I want to talk about. The smile of a mother of a premature baby is one of love and hope. That smile, the brave face, shows not only the world but is evidence, that you are hanging on in there. It shows that you are putting one foot in front of the other and doing everything you can to cling onto hope and believe that everything is ok.

That smile tells your baby that they have the bravest, strongest mother that they could ever have wished for.

Yet behind this smile is a mother who is living on breaking point and whose life has been turned upside down.

The fragility of a mother on a neonatal unit doesn’t show weakness but shows enormous strength, courage and bravery. Life has become so fragile that you daren’t do anything but to keep living in hope that one day everything will be ok and all this will be behind you. It is that mother’s love in you, that keeps you going.

From living the truth behind that smile, I want to tell you, that even on the darkest and hardest of days, whatever the future holds, you will be ok.

Even though you might not want to, for fear of never being able to smile again, it is ok not to.

If you need to have that cry; some time to hide in the toilets or escape from the room to the nearest place where no one can see you; to have a moment of letting your guard down and realising your fears, then that is ok. Whatever is behind those tears, it will be better if it comes out, whether that is just to yourself, your partner, a nurse or a pen and paper. Try not to fight with yourself; be kind and believe in yourself. Understand that you are doing a bloody amazing job, even just getting up in the morning is a great triumph. If you feel you are not coping or having a bad day or a tough moment, try and find the courage to talk to someone. From my experience, a neonatal nurse who you get on well with and trust, is a great place to start and they provide a very good shoulder to have a cry on.

And what I love and feel so unbelievably proud of you for, is that, although your smile is fragile and can wobble into a cry in a fraction of a second, it is smiled with such grit, strength, courage, determination and above all, love.  

 

Keep going ladies, whether you know it or not, you’ve totally got this!

 

All my love,

Amy xx

 

Just in case you’re in need of survival pointers, here are a few:

• No one knows your baby like you do. Trust your gut and never be afraid of asking, or telling a nurse anything, whether it’s what clothes you want your baby dressed in or what muslin cloths you want to use to make their nest, to noticing something isn’t right.
• To not put pressure on yourself about anything.
• To look at all the beautiful things about your baby; their toes, dainty fingers, button nose.
• To be kind and to love yourself – eat a million bars of chocolate if you need to, have sugar in your tea if you didn’t before. Try and do what makes you happy.
• Ask your friends and family to make meals for your freezer, better than hospital canteen food or endless microwave meals!
• To not compare yourself to others, for example, what time you arrive or leave or how long you stay for, do what feels right for you.
• If you are not sure whether to share the news of your arrival(s) on social media go with your heart. We did when Charlotte and Esme were about a week old because it was what it was. I was no longer pregnant and the girls had arrived. Yes I was extremely nervous about what others thought of them, their size, the amount of wires attached, their breathing equipment etc. but the support we received from our family and friends far outweighed any of these anxieties. We were very proud but scared parents before and after doing so.
• It’s ok to cry or not to cry, just go with the moment.
• Whatever your day, just roll with it.
• To take control of what you can and let go of what you can’t.
• To remember each day is a new day.
• Try and trust the neonatal team with your baby(ies); they are a very clever, caring bunch.
• When you escape into the big bad world, you will hear the word “tiny” used a lot. Try not to take any notice – you know how massive they are now!
• To never give up on hope.
• Once Charlotte and I escaped out of the neonatal unit and we were no longer living by the day, painful memories of the neonatal unit and the grief of losing Esme started to catch up on me. After three months of home life, I made the hardest yet best phone call I have made, and self referred myself for counselling. Remember, there is always help out there.
• To remember that premature babies are the most amazing, strongest, bravest little people to ever grace this planet!!