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Lauren and Alexa's story

30 December 2016

Alexa was born at 25 + 2 weeks, weighing 588g, on 19 February 2014, and delivered by emergency c-section due to severe early onset pre-eclampsia. I read those phrases so many times, in Alexa’s notes and on whiteboards, and I repeated them so often when we were in hospital. It was what defined her and defined me. In writing it now I realise that it no longer matters. No one asks me that any more and I rarely think about it. And what a relief that is.

Alexa was really tiny, she was sick and she struggled for a long time. We were in the neonatal intensive care unit for seven and a half months, ten weeks of which were in intensive care. Her lungs were not good. She had five failed extubations. She was on every breathing machine on the unit; she was on the oscillator, the ventilator, BiPAP, CPAP, Vapotherm, Optiflow and Lo-Flow. With the help of steroids she went from the ventilator to Optiflow, and then when the steroids finished she went right back to the ventilator.

I would love to say that we handled it really well, that we were strong and brave and composed. But my husband and I were both a mess. I cried and cried and cried. It’s a strange twilight, no-man’s land when you have a premature baby: a) you’re supposed to be pregnant but b) you are on maternity leave and then c) your baby doesn’t live with you. You wait and wait and wait for life to begin. I think I was jealous of women everywhere; pregnant women, women pushing prams, women with children, women going to work. I went from being a confident and friendly person to a jittery and scared one who second guessed herself and constantly washed her hands.

In March 2014 Alexa got really sick twice. I will never forget how calmly and diligently the consultant led the team on both days; how steadily and respectfully everyone worked to understand what was happening. I think of both of these days quite often. Primarily with relief, love, joy and gratitude to the team who saved our daughter, but I also am still taken aback by how gracefully they managed such impossible pressure, stress and responsibility.

In April, Alexa developed retinopathy of prematurity (ROP) and so she had laser surgery at Great Ormond Street Hospital.

To check that the laser surgery had worked we had another ambulance transfer, to go to the Homerton Hospital four weeks later.

In July, she had to go to the Brompton Hospital for investigations into why she was stuck on continuous CPAP. She was stuck on CPAP for months. There was talk of a tracheostomy. CPAP is really noisy and it blocked her vision -- I thought “how on earth is she going to develop with this on her face?” and I was convinced it was going to damage her nose. But it didn’t impact her; her development sessions were always a joy and her nose is perfect.

We finally left hospital with our baby (and her oxygen tank) in a car seat on a Friday night in October 2014. I was terrified when the neonatal team first mentioned home oxygen, but it was fine and before I knew it I was slipping the tank onto my back and off for a stroll answering (with a pained smile) for the millionth time the nosiness of strangers who wanted to know what had happened to my baby. And slowly, slowly we weaned the oxygen and in May 2015, after a sleep study, Alexa came off oxygen completely.

Today Alexa is a happy, chubby, curious, joyous toddler. Our life is happy and it is healthy. We do normal things. We go to the playground, she plays with her friends and she sings and dances at ‘Bilingual Beats’ on Wednesday afternoons. I have even returned to work.

And every now and again when I see Alexa doing something ordinary, my heart bursts with relief and happiness at the normalness of it, and the realization that the pain and worry of our start is behind us. We have made it, the three of us, and we are happier than I ever thought we would be.

Supported by her MP Tulip Siddiq, Lauren is working to change current UK legislation, to make maternity leave longer for mothers of premature babies.

If you have been affected by any of the issues mentioned in this post and would like support, you can call our helpline on 0808 801 0322 or view our online support pages. If you would like to share your story with Bliss, please email media@bliss.org.uk

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