Tag Archives: Prematurity

Neonatal Care: Shattered Dreams and Precious Moments

Our journey started last April when our son Jake was born suddenly 10 weeks early. Nothing can prepare you for the journey that was about to start and we were lucky that he was a healthy 1.53kg – a good weight for a 30 week premie!

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The dreams you have of holding your baby when they are first born, the pictures capturing those first precious moments, are shattered. And instead you are filled with loss, longing to hold a fragile baby. With the tubes and wires, it’s not what you imagined, but the nurses help and support you with your first kangaroo care cuddle – and it’s worth the wait!

These small steps that most parents take for granted are celebrated along the rollercoster ride of neonatal care. There are bad days, when all you do is hope and pray that they pull through, the days without cuddles when all you can do is sit and wait, knowing you would give anything to swap places with your baby.

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What you can do is express your milk, but this was hard work and mother nature didn’t make the job any easier. While some mums filled bottle after bottle, I bearly made enough, expressing throughout the day and twice during the night, just to keep up. This will always be the bit I feel guilty about, Jake didn’t take to breastfeeding no matter how hard we tried. The nurses were amazing in supporting us, (I’d never had so many people see my boobs!), but no matter what it just wasn’t working and after a few days and 12h with no wet nappies we tried a bottle. He gulped it down! It’s not what we had planned, but none of this was. I cried loads and will always feel guilty that I didn’t breatfeed – but he is healthy and that’s the main thing .

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We were extreamly lucky and made a special bond with two other wordering familes. Going through something like this can bring people together and sometimes you have to take the positives of what life throws at you. The amazing team that works in SCBU are all angels and I could never repay the times they saved Jake’s life. The times they supported us – the hugs, the chats and the occasional light moment of laughter – we missed them hugely the firate few weeks we were at home.

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The journey doesn’t stop when you go home though and for us it seemed like the begining of weeks of obsessing about infections. Hand gel became my best friendnand no one was allowed in the house with the slightest sniffle. The first cold at home was hard and I spent the whole day scared he would end up back on a ventilator. It’s hard to admit, but it was terrifying bringing him home. At least when he was in hosital the staff could keep him safe and knew what to do if he had an infection. But with time this got easier.

By the time we were ready to go and meet ‘normal’ mums and babies I was half way through my mat leave.  This was my next challenge, of always feeling like I had to justify why Jake was slightly behind and in knowing how to explain his early start and corrected age. I’m so proud of my reslient, funny and sociable son and wouldn’t change a thing, but it was sometimes hard to hear other mums stories.

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It does get easier and I remind myself that I am one of the lucky ones. I am currently due to go back to work on friday to a job I love and Jake has settled into an amazing setting which he loves…

…..but I still feel cheated from my full maternity leave. Seven weeks in hospital and then by the time I was finally ready to fully embrace mummy life if feels as if half of it was gone already. It’s been a long, and at times uncertain, journey – and now together we’re about to embark on the next chapter!

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With special thanks to Claire Mountain for sharing her story with The Smallest Things.

If you’d like to help us raise awareness of life through neonatal care then please use the Twitter and Facebook buttons to SHARE Claire’s story. 

Mason & Teegan-Mae: Our NICU Journey

Guest blog post by mum of two, Sophie Willis, raising awareness as part of World Prematurity Month

I always dreamed of having a perfect pregnancy with a complication free birth and having immediate skin to skin with my new born.

At 35 weeks in July 2013 I was admitted to hospital with irregular contractions. I still had hope that I would make it to term – or as close to term as possible.
After a few days my waters broke and I went in to spontaneous labour. 2 hours and 51 minutes later I delivered a perfect little girl called Teegan-Mae. She weighed 1.990kg and was beautiful.

She was took to SCBU and stayed for 10 days with feeding difficulties, temperature control and jaundice.

Immediately after Teegan’s birth, I still longed for the perfect pregnancy and delivery. My partner and I always wanted more than one child so we decided to start trying right away.

Eventually with the help of fertility drugs due to secondary infertility, we found out I was pregnant in April 2015. My partner and I were over the moon, and was so excited for Teegan to become a big sister.

Despite having awful morning sickness, my pregnancy was perfect.

At 24 weeks I started to have contractions and went to my local hospital. I was examined immediately and given steroids – Ouch! I was transferred from Swindon to Oxford to be in a hospital with a better equipped NICU. Fortunately, the contractions had stopped and I returned home.

“I was worried sick, I felt like I was suffering a loss, I knew my pregnancy was going to end very soon. My partner, daughter and little bump was the only things keeping me going.”

At 28 weeks, I was admitted to hospital with contractions again. This time I was 2cm dilated and I knew this was it.
A few days passed, contractions still present and I had an awful feeling in my gut…
My waters broke and baby was in distress. I was prepped for a cesarian section where my gorgeous little boy Mason-George was born. He weighed 1.348kg and was born crying! Mason was transferred to NICU, where he was put on CPAP.

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The first week after Mason was born was my worst nightmare. He was very distressed and needed to be ventilated. He also had a blood transfusion, returned to CPAP and then went on high flow. We also learned Mason had a PDA and a hole on his heart. He also had an inguinal hernia.

“I felt awful leaving Mason every night, and also felt just as bad leaving Teegan during the day.”

The unit became our second home. I always thought my body failed him, so I wasn’t going to fail him now. I provided all his cares, belongings and spent hours at his cot side expressing for him.

I learnt so much about my little boy, he had many apnoeas, desaturations and bradycardias. He had multiple blood gasses, blood tests, transfusions and cannulas for antibiotics or IV fluids. He had medication daily, and I was able to feed him breastmilk via NG tube and attempt breastfeeding when he was big enough – although he took a long time to coordinate himself!

 

Mason required an operation for his hernia and his immunisations which we’re little set backs for him. His PDA shut without intervention which was a huge positive!

After 88 days in NICU, Halloween, bonfire night, Christmas, Daddy’s birthday and New Year – Mason came home 9 days after his due date.

The transition home was hard, no monitors, temperature checks, charting feeds or nurses for additional support. But we quickly adapted and found a routine which worked for us all.

During our stay in the NICU, I learned to take each day at a time. Each small set back made room for a leap in the right direction. As little as these premature babies are, they have courage, fight and strength like no other.

The nurses who looked after Mason while I could not be there hold a special place in my heart. Keeping my baby comforted, fed and warm when he should be tucked up in my stomach. They are present during the darkest time of many families life’s, but also the greatest times too. Such amazing people.

We have made life long friends while in the NICU, we could support and advise each other as we have that one thing in common!

I now have 2 happy and healthy NICU graduates. My little miracles.

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Raising awareness for prematurity holds a massive place in my heart. I knew nothing about prematurity until it happened to us.

Will you share Sophie’s story to raise awareness?

Have you got a story to share? Email Catriona at smallestthings@yahoo.com

PM pledges extra support – will it reach prem parents?

The Prime Minister is pledging extra support and will call for a ‘more mature’ conversation about mental health. Specific measures expected in England include – “£290m up to 2020 to give 30,000 more women each year access to specialist mental health care before and after giving birth, including through classes”

This is welcome news for parents of babies born prematurely and families who have spent time in neonatal intensive care. Specialist care is vital for these families with the incidence of post natal depression known to be higher following premature birth and with over 50% of mothers reporting anxiety and displaying signs of post traumatic stress disorder following their NICU stay.

Each year however 80,000 babies are born prematurely and much more needs to be done to support the mental health needs of both mothers and fathers following neonatal care.

Access to specialist mental health care and understanding by primary health care workers will be key to ensure that appropriate and tailored support is given and that timely referrals are made. It is not yet clear however whether the extra funding and support pledged will reach families affected by prematurity and offer the support they need.

For more information on mental health following premature birth please read – PTSD: The hidden cost of NICU

The hidden cost of NICU | Write to your MP today!

On Wednesday 9th December MPs will take part in an opposition day debate in the House of Commons to discuss Mental Health.

The Smallest Things campaigns regularly for more awareness and better access to psychological support following the premature birth of a baby and we know how important this issue is to our supporters.

I have written to my local MP, asking them to attend to take part in the debate and hope you will do the same.

Please feel free to use any part of the letter below.

You can find how to contact your local MP by clicking and entering your Postcode here.

 Dear Mr Reed MP,

I am writing to ask you to attend the forthcoming opposition day debate on mental health with regards to PTSD, the hidden cost of NICU.

When my son was born we weren’t ready. He wasn’t ready.

Born 10 weeks early, he spent an anxious 8 weeks in neonatal intensive care; a stressful environment where parents following the traumatic birth of their babies watch over incubators day-by-day. It is an uncertain and alien world full of breathing machines and beeping monitors. It is a medical and clinical world where you find life at its most fragile.

Not surprisingly mothers of babies born too soon there is a greater risk of post natal depression, with as many as 70% report symptoms of post traumatic stress and anxiety in the aftermath of a premature birth.

Yet in their 2015 baby report, Bliss reveal that 41% of neonatal units have no access to a trained mental health worker and that nearly a third of units offer no psychological support at all.

Parents of some of the smallest and fragile babies need more support, not only during their hospital stay, but also in the months and years that follow.

I, and parents like me, would be grateful if you could highlight the very specific, but often unmet needs of families of premature babies in the forthcoming opposition day debate on Mental Health – Wednesday 9th December.

For more information, please see PTSD: The Hidden Cost of NICU

With best wishes,

Catriona

ST reception