The fear that lingers long after NICU

I have been debating whether to write this post for a long time because in the scheme of prematurity battles we have, to date, been extremely lucky. Yes, our boys were born early at 31+2 but they had a relatively smooth 30 day stay in NICU and as of yet have shown no signs of serious health issues. I have always therefore felt that for me to write about the fear that lingers on long after the NG tubes have been removed and the stick thin legs have become covered in beautiful fat rolls wouldn’t be appropriate.

Month’s ago when I voiced this to a friend whose daughter was a micro preemie she looked me straight in the eye and said the most comforting and true thing any preemie parent ever has. She said “there is no competition in prematurity. My daughter may have been smaller, she may have been in hospital longer but we both had to leave our children, we both suffered and we are both preemie parents.”

I will never forget her words or the passion with which she said them to me, they have stopped me feeling like I somehow ‘qualify’ less as a preemie mum or I have less right to voice my emotions simply because my boys were born at a relatively weighty 3lbs 11ozs. Other’s have endured more than me and they continue to do so but although our paths are different the pain we have experienced units us as preemie mummies.

With this in mind I finally decided to give a voice to the lingering fear that my husband and I still live with today and probably always will.

A few days ago my husband called me to say twin one had a temperature, that was all a simple temperature but for us it was all it took to throw us into panic mode. “Has he had Calpol? Is he breathing OK? Does have recession? Is he shaking? Is he mottled? Is he eating?” All the memories of our stays in PICU, diagnosis of Bronchiolitis, Asthma, febrile seizures, meningitis scares, countless cannulas, blood tests, two lumber punctures, IV lines and conversations about abnormal white blood cell counts came flooding back. Neither of us had to say it, the frantic conversation and multiple phone calls discussing how the temperature was behaving were enough for me to know both of us were terrified this was the start of another hospital stay.

This is how it plays out everytime one of the twins gets a temperature over 38C, everytime they get a chesty cough or they start wheezing and everytime they go off their food or seem out of sorts. The things that with a term baby you would monitor for a few days are all things that as a preemie parent or the parent of a child who has been seriously ill awaken a raw and painful fear in you.

When everyone is well we push the worry and fear to one side and bury the memories of urgent dashes to A&E, intubation, comas and tear filled phone calls to family and friends. We start to think it couldn’t possibly happen to us again, that our stays in hospital and our nights spent crying over hospital cots have come to an end but without fail the first cough and the first spike in temperature bring it all flooding back.

Although our boys have, to date, not been diagnosed with any chronic conditions as a result of their early birth they have been blighted by RSV, asthma and phneumonia, all of which are all to common among preemie babies. I say ‘to date’ because when your child has missed out on weeks of development inside the womb you never really know what medical surprises may pop up or how their preterm birth may shape their lives. This long term uncertainty goes hand in hand with the immediate uncertainty that surrounds every snuffle and sneeze. With my eldest son I would never have thought a simple cold could result in him being in hospital on a ventilator but with the twins it’s the first thing that crosses my mind.

This time we escaped with an ear infection but I know deep down beneath the hope and positivity that I try to let rule my mind, that it’s only a matter of time before another chest infection knocks one of my boys for six. It’s only a matter of time before we have to face our fear and walk back into the hospital where we have spent some of our darkest and sadest  moments and only a matter of time before I am setting up a temporary home in a hospital side room separated from my other sons and husbanb.

As a preemie parent or the parent of a sick child this is the fear you live with on a daily basis, you push it away but it is always there waiting to paralyse you with every temperature spike. As a mother only eighteen months into our journey of prematurity I wonder if this fear will linger forever, I hope it won’t but just like my feeling another hospital stay is inevitable my gut tells me this is something I will carry with me forever.

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4 thoughts on “The fear that lingers long after NICU

  1. I completly understand where you are coming from. For me it will be two years now and I can feel the fear creeping up sometimes, wether it is a fever or it could even be when doing something new (like now she is going to day care for the first time and I am dealing with very bad anxiety). I do believe we have moved on from our NICU stay and my daughter is perfectly healthy and happy but the fear never goes away completly, sometimes you can feel it intensly and sometimes you know it’s there lingering in the back. She was born at 35 weeks 3lbs 11onz. And our NICU stay was only 25 weeks, but she almost died (I’ll never forget that day) and only two weeks after we were realesed from NICU she had another life threatening event that took us back to PICU. Having had those moments of almost loosing her have marked me and changed me for ever.

    1. I fully understand the fear ye ladies are describing. Our daughter is now 15 years old but was an extremely ill 30 weeker whose life was on the balance for a very long time in Nicu. The anxiety and fear we experienced after that time took its toll on us both. I dreaded every winter and was hyper vigilant. Honestly the first 6-7years were very tough with her being sick lots and us trying to balance her health needs with a normal life. She is incredible and has a determination that I can only admire. She is a happy well rounded normal teenager who plays football competitively and sings classically-not bad for a girl who was ventilated for 3 weeks and on daily nebuliser for 7 years. All I can say to ye is believe in yer little ones- they never cease to amaze us and they have no fear which is fabulous. Take whatever breaks ye can-we didn’t. Luckily we have a happy normal family life now and we’re also blessed with a son-full term and each experience though different made us what we are today😘

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