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Our Journey Through the NICU and to A Sibling for our Premie

23 weeker premie

It was when Nicola was 23 weeks pregnant when she received the shock of her life. Her daughter, Edie, who was only the one pound and four ounces, was born. She arrived into the world bruised, ‘her heart barely beating’, and was ‘clinging onto life by a thread’, recalls Nicola.

Nicola said,  “At the hospital we were provided with miserably low survival statistics for 23 weekers and informed about the very high odds of Edie having a moderate to severe disability if she did survive.

“We were told that technically she’d be considered a late-term miscarriage if she arrived before 24 weeks’ gestation – but we were given the option of a resuscitation attempt at birth.  We were traumatised.  Deciding what to do was a difficult decision to make, when knowing that she’d most likely live a short life filled with suffering.”

Edie was resuscitated at birth by a team of neonatologists and was taken to the NICU. “At one point Edie must have been only a metre or so away from my bed, but she could barely be seen. She was that small.” Nicola said.

Edie 23 week old premature baby

Baby Edie, who was born premature at 23 weeks. Image: Nicola M

‘Though she be but little, she is fierce’

Over the next few months, Edie fought to survive. She had a bleed on the brain, an operation on her eyes for retinopathy of prematurity, battled with low platelets and haemoglobin, pneumonia, sepsis and chronic lung disease. 

Nicola said, “For almost 16 weeks, Edie required breathing support in various forms. A ventilator, bipap and high flow oxygen via nasal canula. She endured the insertion of many different lines and tubes, endless blood tests, gasses and injections and today wears the scars to show it, particularly on her small heels.

“She had frequent head, eye, heart and abdomen scans.  She’d ‘forget to breathe’ numerous times a day and received different levels of assistance to remind her to do so. She received countless medications and stimulants to help keep her with us, such as steroids, morphine, caffeine and antibiotics to name a few and she dealt with the unfortunate withdrawal symptoms.

For too long we lived on a minute to minute basis with Edie, and at the two-week point, doctors considered the discontinuation of her care.” 

Edie 23 week old baby born prematurely

’23-weeker’ baby Edie. Image: Nicola M

But, somehow, after 109 days in the NICU, Nicola and Dave got their car seat moment and took baby Edie home. 

Edie is now a thriving three-year-old who despite battling the odds in the NICU, has no lasting health effects from her early journey. 

Nicola said: “Edie is probably the most charismatic human being I’ve ever met. Everywhere she goes people are drawn to her. She’s a kind-hearted and highly spirited little girl who’s inclusive to all children that cross her path. 

“She’s just a nice person. She’s a comedian and has a mischievous sense of humour but is probably the most stubborn and headstrong person I’m ever likely to meet. 

“Once she gets something into her head, she can’t be bribed or bought or coaxed. Her determination is unshakeable and whilst that can be difficult as her mother, I’ve no doubt it’s the reason she’s here today and so, I wouldn’t have it any other way. She is the queen of sass.”

Pregnancy after a premature birth

Although there were mental scars for Nicola and Dave, they couldn’t help but think about having a sibling for Edie. “After saying ‘never again’, I found myself curious about having another baby.  I had missed out on so much during my pregnancy and my start to motherhood had been so extreme I often found myself low.” Nicola said. “I felt sad about the most peculiar of things.  I never got to pack a hospital bag; I never experienced the third trimester or even the second trimester.”

“It pained me that my newborn baby was not placed romantically in my arms after birth. That Dave looked on in horror with tears of sadness and fear in his eyes.  I couldn’t shake off the feeling that I had been robbed.”

Nicola arranged a meeting with her consultant to discuss why she may have gone into premature labour with Edie, and what could be done to stop it from happening again. 

The consultant ruled out Nicola having an incompetent cervix, but did note that while pregnant with Edie, the placenta had bleed significantly. Importantly, no-one knew why.

Although Nicola wondered whether her own medical conditions, pernicious anaemia, rheumatoid arthritis, psoriatic arthritis and hypothyroidism, contributed to her going into labour early, there were no clear answers.

“The consultant thought the most likely reason for the bleeding was because my cervix had been open for quite some time, possibly causing damage to the placenta.  She also thought the early delivery of the placenta could have caused it.

“I vividly remember her saying, ‘in obstetrics, there’s more that we don’t know than what we do know.’ I appreciated her honesty. We were prepared to take the risk.”

Edie and her brother Harris

Edie and her brother, Harris. Image: Nicola M

When Edie was nearly three, her baby brother Harris arrived in the world, safe and well. Edie and Harris are “best buds” and have an “unconditional bond”. Nicola said, “Although we were scared of what might happen, having another baby after Edie was the best thing we have ever done.”

____

Nicola is a mum of two, singer, rheumatoid arthritis warrior and blogger from Wales. You can check out her blog, 23 Weeks and Counting, here, and follow her on Instagram here. Nicola also has her own clothing line named after Edie, check it out here.

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