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Our NICU Story

Couples plan home births, water births, hypnotherapy births...but nobody plans for a premature birth.  That was the same in our case.

After 4 rounds of IVF in 13 months we were finally pregnant with twins!  A double blessing.  At our 20 week scan we were told we were having a boy and a girl and that really we had better start believing that our family was finally going to be expanding!

And so, after years of hope and fear, we started to plan for our babies arrival in July 2013.  They were due on 31 July and a C-section was booked for 18 July. 

On Sunday 12 May 2013, whilst watching TV with our eldest son Zac, 5, my waters broke.  After a hospital dash and various tests and scans, two hours later our babies came into the world at 29 weeks. 

Anya Elizabeth Rose came first and made a cute little kitten meow sound.  She weighed 2lb 7oz.  6 minutes later, Xavier Andrew arrived, silent.  He weighed 2lb 12oz.

Anya Elizabeth Rose premature baby   Baby in Neo-Natal Care      

Anya (left) and Xavi in Red Room (intensive care)

The consultants and nurses worked on both babies whilst still in theatre, intubating both before they whisked passed my head in their transport incubators on their way up to NICU.

And that was the moment our lives changed forever. 

The babies spent the first 10 weeks of their lives in Neo-Natal care.  I was poorly for 2 weeks and wasn't able to visit for the 3 days, relying on Jason my husband to bring me updates, photos and attend the daily Doctor updates on their progress.  Both babies had worrying complications and Xavi in particular bounced back from Critical Care to Intensive Care a couple of times. Yet both babies were strong, determined and progressed well eventually making it to the Special Care ward or SCBU as it was called. 

   

 

Those days were long and hard but they were also full of joy, love and laughs.  I made great friends in both other Mums and the nursing staff.  We supported each other, picked each other up when we needed it and cheered when our little ones reached new milestones. 

The nursing staff were incredible and if you are reading this having had experience of NICU you will understand the immeasurable and priceless debt we feel to them.  They are amazing.  They cared for Jason, Zac and I as much as they cared for our babies, but in short, they gave me my family.  They enabled me to bring my babies home.  Beyond words. 

Every day during that time our friends used to say how hard it must be to leave my babies and yet, apart from the last week I can honestly say it wasn't.  I knew I couldn't care for them and that they were being watched by the best qualified baby sitters around.  They were safe, monitored and loved and I needed to rest and rebuild to give them a strong Mummy when they were allowed back into my full time care.

Each day I expressed and each night, through the entire night I expressed.  My 'go go' juice as I called it was all I could do for them to give them the best chance of survival.  Eventually my body responded and I proudly produced my milk for them.  But it was hard going, I wasn't expressing as much as other Mummies on the unit who only had one baby and somehow seemed to have trays in the freezer as well as the fridge, whilst I struggled to just keep up each feed.  Each night I went to bed with two snuggies on my chest so my scent would pass onto them for the babies and to stimulate my milk. The next day I would put their snuggies in the incubator to comfort them and take theirs home with me to be able to smell them, pass on my scent and try to stimulate production once more.
    

Eventually at 7 weeks, with agonising mastitis in both breasts and thrush in one nipple, my right breast gave up and my left was so sore that the nurses advised that I stop.  I wasn't producing anywhere near enough needed for both babies and I was exhausted.  This was probably one of my darkest days.  Yet the following day, after a good night's sleep and leaving the emotion behind, I started to feel stronger and prepare myself for our new normal when our babies would come home.  

The last week, when they and I were both stronger, was the hardest to leave them at the end of each day.  I needed them with me, longed for them and I felt they were ready to come and join us in our home and meet their family and friends who loved them so much even before they knew them. 

I hired cleaners to blitz the house top to bottom.  I had all the carpets and sofa deep cleaned.  I arranged balloons and banners and started to long for the day we would walk through our front door as a family of 5.  That day was like the new beginning, the real start, the new normal.  On 17 July 2013, we finally brought our babies home. 

Yet those 10 weeks in NICU care changed my outlook on life and my appreciation for all that families go through.  In a world they never knew existed before. 

What we learnt, felt and how it has influenced us - here's a taster to help you understand. 

When the babies arrived we didn't know whether to celebrate or commiserate - what it something to celebrate?  A neighbour shouted "Congratulations!" to Jason on his way to the hospital one morning and he burst into tears as he got into the car.  His babies might die, why are they celebrating?

I couldn't change, dress, even move my babies for weeks, such was their condition and my fear, yet I still longed to feel a part of their journey and to be a mother.  Providing nice blankets, snuggies, clothes that actually fit was really important for me.  I just wanted to be a normal Mummy. 

The nurses used to give me precious keepsakes, such as tiny oxygen masks, but I didn’t have anything really special enough to keep them in.  A friend bought us some keepsake boxes, the first ones I'd had in my life, and we kept everything in them from then on.  These are two of my most treasured possessions now filled with items I cherish.  Boxes, journals, handprint kits, scrapbooks are all vital ways to remind yourself and the children of such an important experience. 

One of the first things I did when I was strong enough was to write a keepsake journal especially for preemie parents to record milestones specific to a premature baby's first few hours, days and weeks.  Their first milestones are so different to a full term baby's, there are chapters and chapters before a 'normal' journal starts that need filling!

  

Family were desperate to hear news, see photos and help where they could.  They've since told me that they felt helpless, didn't know what to give and couldn't find the right words just to say they cared, they loved us and they prayed for the best for us. 

They also struggled to find suitable card and gifts for our babies and for us, particularly me.  Whilst the thought behind every gift was hugely appreciated, we were told by many that they simply didn't know what we would need, appreciate or use. 

Caring for our family, in particular ensuring my health and strength, was our last priority but thankfully, the NICU nursing staff understood the need for breaks, time away from the unit, sleep, good wholesome food and self care.  Taking care of our mind, bodies and spirit was hugely important in the end and whilst sometimes, sitting for hours by their incubators, smuggling chocolate digestives or spooning Nutella by the hour at home seemed to be all that I wanted to do, fortunately I had people around me to remind me 'you can't pour from an empty cup' and prepared me properly for their homecoming. 

And the biggest thing we learnt was the desire to say 'Thankyou' to the nursing staff.  Sometimes a box of chocolates doesn't seem enough.  I used to sit and stare at them in the days before we left and wonder how on earth I could ever thank them?  How can I let them know how much I appreciate them, owe them and after 10 weeks, love each and every one of them?  Finding a perfect, meaningful thank you gift that says all that you want it to, is one of the hardest parts of leaving NICU.  One nurse told me that they couldn't do what they do without understanding how much it means to us and how grateful we are, and that has always been a comfort.  They know. They understand.  Often they don't need a gift to feel your gratitude as their dedication to you and your baby, knowing the enormity of their service is often sufficient satisfaction, but that doesn't stop you as a parent feeling an enormous urge to express that gratitude. 

And the last thing to remember is not all parents leave NICU with their babies in their arms.  Forever in their hearts and minds, sometimes a family's journey in NICU is immeasurably heartbreaking and their babies don't come home.  Yet that doesn't make their NICU experience any less important, memorable or indeed positive.  The love and care shown to these babies and families is phenomenal and we were surrounded by brave families who share our love for the NICU team and all that they do. 

I didn't plan for a premature birth, indeed I didn't consider it for a second, despite expecting twins!  But now, with two healthy boisterous twins, I wouldn't change my experience for a second.  It changed my life, my outlook, my career.  It opened my eyes to so much, made me appreciate more, look harder, love deeper and above all sparked a whole new direction for my life that is fulfilling beyond all. 

Where are they now? 

Well we are fortunate to have two healthy, boisterous, sporty, cheeky, hilarious and loving twin with an equally awesome big brother who thinks the world of them, and vice versa.

     Family life      

With love from our family to yours.  x