Category Archives: World Prematurity Day

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.

image

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.

image

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

How NICU Mums Are Chosen

NICU mums are tough: We may not feel like we are tough, indeed we often feel like we’re only just holding on, as if we could slip at any moment. As preemie parents we all need support, of that I am certain, but within us there is a strength, perhaps found in the love and courage of our little ones.

Even years later, I find myself digging deep to find that strength. When I comfort my youngest as he coughs a cough I’ve heard too many time before. A sound that fills me with dread and sets my heart racing – will we be going to hospital tonight?

I don’t believe I was ‘chosen’ to be a preemie mum, it’s just one of those things. But when times get tough and I struggle to find the strength I remember the poem by Erma Bombeck….

How Preemie Moms Are Chosen
by Erma Bombeck

Did you ever wonder how the mothers of premature babies are chosen?

Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.

”Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint…give her Gerard. He’s used to profanity.”

Finally, he passes a name to an angel and smiles. “Give her a preemie.”

The angel is curious. “Why this one, God? She’s so happy.”

“Exactly,” smiles God. “Could I give a premature baby a mother who knows no laughter? That would be cruel.”

“But does she have the patience?” asks the angel.

“I don’t want her to have too much patience, or she’ll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I’m going to give her has a world of its own. She has to make it live in her world, and that’s not going to be easy.”

“But Lord, I don’t think she even believes in you.”

God smiles. “No matter, I can fix that. This one is perfect She has just the right amount of selfishness.”

The angel gasps, “Selfishness?! Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see— ignorance, cruelty, prejudice— and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her Patron Saint?” asks the angel, his pen poised in the air.

God smiles. “A mirror will suffice.”

November is World Prematurity Month. Please share to raise awareness. A journey through neonatal care lasts long after bringing your baby home 💜

photo (3)

 

 

World Prematurity Month – November 2016

World Prematurity Month, a time for charities, health professionals, families and organisations around the world to come together to raise awareness of the 15 million babies born premature each year.

For me, a mother of two small boys born too soon, World Prematurity Month is an opportunity to reflect upon and highlight the realities of neonatal intensive care; a chance to shine a light on a hidden world and a journey that lasts long after bringing your baby home from hospital.

As expectant parents you make plans, you allow yourself to dream and imagine.. the first hold, the first baby grown, the first feed…. but for parents of premature babies all plans and dreams are shattered as the trauma of neonatal intensive care kicks in. You don’t recognise the world around you find yourself grieving for a baby take from you too soon and placed within the protective walls of an incubator – “A womb with a view” as a friend once said.

Smallest Things

On leaving neonatal care, full of conflicting emotions, you think that your NICU time is done… only there are new challenges to face.

Incubators, life support machines and monitors are behind you, but the memories and worries last. One day you feel brave enough to leave the house. You might visit a mum and baby group – and that’s when then it comes, the dreaded question…

“How old is your baby”?

I know I’m not alone in rounding down my baby’s age and even then I would see the quizzical. I would tell them that my baby was 6 months old, although developing according to his corrected age he looked and acted like a 3 month old.  Next comes the dilemma; either explain that he was born premature and risk being asked often insensitive and upsetting questions or endure the inevitable developmental comparisons. I didn’t like the feeling I was making excuses for my baby – ‘he’s six months old, but really he’s only three months’ I would hear myself saying.

With the benefit of hindsight (and a bit of preemie mum strength), I might now tell those mums that my baby hadn’t quite mastered sitting independently yet, but what he had mastered in those six months was to teach himself to breath, to learn to co-ordinate sucking and swallowing, to regulate his own heartrate and that he trebled his birth weight – pretty impressive milestones I would say!

image

Unless you’ve had a baby in neonatal care, or a close relative in that position, you have no reason to know about life in NICU, so I tried to brushed remarks like ‘I could never have left my baby alone in hospital’ or ‘is he normal now?’ aside, but they hurt and I felt alone.

Not only was it the mum and baby groups I began to avoid though, community health professionals, who I thought would be there to support me, also seemed to lack awareness. I lost count of the number of times I was asked if he was smiling yet. Each time I gave the same response – ‘he hasn’t reached his due date yet’! I was forever asking that his weight be plotted according to his corrected age and the six week check was laughable. I felt like putting a big sticker on the front of his read book saying “remember I’m a premature baby!” (Which is why, years later I developed the “Preemie Proud” Red Book stickers!)

I launched The Smallest Things blog two years ago, writing about my own experiences to raise awareness of premature birth and the challenges faced by families following neonatal care. This World Prematurity Month I will continue to write, as well as sharing guest blogs, about a journey that does not end at the hospital doors.

Raising Awareness really does help to make the Smallest Things matter – even if only to help with the dreaded “how old is your baby?” question!

image

Don’t forget to follow The Smallest Things on our Facebook Page for all the latest stories and news for World Prematurity Month!

 

Top 10 of 2015!

top tenA huge thank you to everyone who has written, contributed, shared and read; each and everyone helping us to raise awareness in 2015!

So, here goes…. Our Top Ten most read posts of the last 12 months!

At 10. Our Story “In those first few days I was lost and empty; the emotional impact of leaving hospital without a baby in your arms is hard to describe…..” 

9. Starting School a year too soon “He continues to meet all his milestones, keeps up with his peers and fills me with pride – yet he will still start school a whole academic year too soon. He’s ready and he’s not ready.”

8. 30ml Mum  “Everything revolved around expressing. Was I doing something wrong? Why couldn’t I produce more? Other mums would enter the expressing room and fill bottle after bottle – I couldn’t even get half way.”

7. Too soon, Too early: This Family needs more time  “I felt conflicted and confused. I was grateful that she was well enough to come home, but I couldn’t help feeling cheated out of time and then felt guilty for feeling that way.”

6. Extend Maternity Leave for mothers of premature babies “…more than a quarter of my maternity leave was spent visiting my baby in hospital and according to Bliss, like me, 60 per cent of mothers felt their maternity leave was too short.”

5. Eva & Charlotte’s Story “While NCT groups up and down the country are meeting for coffee and talking about pooing and breastfeeding, NICU mums gather in expressing rooms to discuss breathing support, surgery and methods of tube-feeding. It’s like an alternative reality where life-or-death moments are discussed in the same way as nap routines.”

4. Shock, Trauma & Hope: A life changing journey through neonatal care “…This is the mark of a premmie mum. From nowhere, I was signed up and given lifelong membership to a club I never wanted to join, nor even imagined existed.”

3. Top Ten! | What not to say “At least you got to miss that really big stage”.

2. Longer mat leave for preemie mums: 5 Reasons Why “Mothers of babies born too soon face the agonising journey of leaving hospital without their baby day after day. Any NICU mum will tell you, there is a lot of watching and waiting in neonatal care – waiting for that first precious hold, usually days, sometimes weeks after their baby is born.”

smallest things

and finally, our most read post of 2015….

  1. Time to Talk: PTSD the hidden cost of NICU “Nothing can prepare you for parenthood, but you allow yourself to imagine the arrival of your baby; those first precious holds, taking them home to meet loved ones, the time together to grow and bond – and then suddenly everything you imagined is dramatically replaced with the alien and uncertain world of neonatal intensive care.”

.

guest blogIf you’d like to write for The Smallest Things or share your story in 2016, then get in touch! Just email Catriona or send in your story (approx. 650 words) to smallestthings@yahoo.com

 

Notice! It’s not quite the end of 2015, and our Top Ten is subject to change as we near the New Year…Check back on midday 31st December 2015 for our final count down!

Prematurity Awareness Month – 12 Months a Year!

WPD2014Today marks the end of World Prematurity Month; but for parents of babies born too soon the journey continues.

I have written about World Prematurity Day and what it meant to me this year; an opportunity to raise awareness and increase the understanding of a journey that does not end at the NICU door.

November was a busy month for us and if raising awareness is our aim then our cause has certainly been helped by programmes such as Miracle Babies. The channel 5 series filmed at Liverpool Women’s Hospital invited viewers into the little known world of neonatal intensive care. It provided a unique glimpse into the lives of tiny babies and their families, as well at the staff who care for them. I wasn’t quite brave enough to watch and know that other parents who like us have spent time in NICU also took the conscious decision not to watch as well. Feelings can still be raw even years later and emotions can come flooding back with just the beep of a monitor. What I did watch however was the reaction to the series on social media as well as reaction from the Gogglebox crew. 

Amazing | brave | emotional | I’m already in tears | I don’t know how they do it | I couldn’t cope if that was my baby | so sad | they’re little fighters | and so much praise for the staff and the wonderful work of our National Health Service.

The truth is when you are thrown into the world of neonatal intensive care you have to be strong and you have to be brave – you have to do it and you have to cope. And for those days when you’re not feeling so brave and on the days you don’t feel strong enough to carry on the neonatal community picks you up, lets you know you are not alone and helps you through the most difficult of times.

This support can disappear though when you leave NICU – “Even our friends don’t know what we’ve been through” commented a mum recently. This is true for many people, particularly once you are safely home. Friends and family will often think that everything is okay now, that all the emotions and difficulties of NICU are behind you. “Thank goodness that is all over” was a comment I struggled with. The find that unit congratulate you on you baby gaining weight and say ‘aren’t you happy you’re home’. When you meet your health visitor they don’t seem interested that your baby was born early and your GP is asking if they are smiling when they haven’t reached their due date yet! This is when I turned to Bliss and to their network of volunteers. I needed to find other mothers who understood what we had been through and what we were was still going through; and even now it is those mothers and those in the ‘virtual’ world who I take support from and hope I give support back too.

smallest thingsJust as the journey does not end at the NICU door, the importance of raising awareness does not end at the end of World Prematurity Month. Organisations, charities, staff and volunteers all play their part and this work must continue all year round in order to raise awareness so that parents are supported during their NICU journey and beyond.

NICU Journey Cloud – WPD 2014

This World Prematurity Day you have helped The Smallest Things to raise awareness of the difficulties and emotions faced by parents of babies born too soon.  So many of you shared with us the three words that best describe your journey through neonatal care. Here they are as part of our NICU journey cloud.WPD2014

Please do share the picture that you helped to create as an example of just how conflicting emotions can be for parents of premature babies.

 

5 Steps – Support The Smallest Things on World Prematurity Day

Raise Awareness!world prematurity day

SMTTurn twitter and Facebook PURPLE! – change your profile pictures for just one day and share our photo

SMTUpdate your Facebook Status – I’m supporting the Smallest Things campaign on World Prematurity Day. You can raise awareness too by ‘liking’ and sharing their page http://goo.gl/TJEn56

SMTTweet – I’m supporting @_SmallestThings on #WorldPrematurityDay – raising awareness & understanding of premature birth http://goo.gl/TJEn56

SMTShare our story

Campaign for Change! 

SMTWrite to your MP  ask them to support the Bliss it’s Not a Game Campaign to extend statutory maternity leave and pay for mothers of babies born too soon.

photo

Little Lights: A time to remember

Yesterday we took our two boys, born 3image0 weeks and 34 weeks to fundraise on the Bliss Little Lights Walk. It was beautiful and moving – you can’t really beat a candle lit walk around Tower Bridge for a location!

imageSigning up for the walk our plan was to raise money for a fantastic charity whose volunteers had supported me after we came home from hospital, and to remember our own journey and just how special our two boys are.

Rather than reflecting on our own journey though, I found that my thoughts were instead with the families who’s babies our no longer with us… and then watching our own boys that old familiar feeling of guilt kicks in; the guilt you felt in NICU when you thought you were at your lowest, only to speak with another mother whose baby was facing a much tougher time than yours. The guilt you had when you felt empty and as if you’d lost your baby, when you know that other mothers have lost theirs. And the guilt you felt when grieving for the lost time with your baby, that lost final trimester and the lost time to hold your new born, when you know that unlike some families you will eventually bring your baby home.

A journey through neonatal care is often fraught with conflicting emotions and it seems these emotions aren’t left behind when you leave the unit. Parents of babies born too soon have been sharing with us the three words which best describe their journey through NICU; loss, guilt and lucky are words that come up time and time again and are perhaps three words that best sum up the emotions of Little Lights Walk for me.

Brushing aside the guilt and embracing the emotions, you learn to live with them as an ex-prem mum, I enjoyed watching our two boys both still too young to understand what it is all about and felt so proud of all they have achieved; but as I watched the light reflect on the river I took some quiet time for my thoughts to be with the families whose babies did not come home from hospital and who remain loved in our hearts. We had a candle burning brightly just for them and they will all be remembered on World Prematurity Day.

How old is your baby? – What World Prematurity Day means to me

imageThis year for me World Prematurity Day is all about raising awareness of the difficulties and realities faced by parents of premature babies. You don’t really know what to expect when you plan a family and begin the journey of bringing a new life into the world. But for parents of premature babies the reality of life on a neonatal intensive care unit is so far removed from what you could ever imagine.

The journey doesn’t stop though when you leave neonatal care, at home there are new challenges to face. You finally brave it out of the house and visit baby groups – and then it comes, the dreaded question, how old is your baby? I know I’m not alone in rounding down my baby’s age and even then seeing the quizzical looks when I would reply that he was 6 months old even though he looked and acted more like a 3 month old (his corrected age). Next comes the dilemma; either explain that he was born prematurely and risk being asked often insensitive and upsetting questions or endure the inevitable developmental comparisons. I didn’t like the feeling I was making excuses for my baby – ‘he’s six months old, but really he’s only three months’ I would hear myself saying. Now, with the benefit of hindsight, I might say that he hasn’t quite mastered sitting independently, but what he has mastered in his six months is to teach himself to breath, to learn the suck reflex and to treble his birth weight – pretty impressive milestones I would say!

Unless you’ve had a baby in neonatal care or a close relative in that position you have no reason to know about life in NICU, so I tried to brushed remarks like ‘I could never have left my baby alone in hospital’ or ‘is he normal now?’ aside. What did get to me though was the response from health professionals in the community, those who I thought would support me but seemingly also had a lack of awareness. I lost count of the number of times I was asked if he was smiling yet – each time I gave the same response, which was – he hasn’t reached his due date yet! I was forever asking that his weight be plotted according to his corrected age and the six week check was almost laughable. I felt like putting a big sticker on the front of his read book saying “remember I’m a premature baby!” Most concerning for me though was the emotional support. It’s well know that mothers of premature babies are at an increased risk of depression and anxiety, yet if I became teary with the GP or health visitors they would quickly change the subject rather than explore my feelings. It was only when I became upset over something trivial and totally unrelated did the doctor ask me how I was really managing.

smallest thingsThe Smallest Things campaign was launched two months ago to raise awareness of premature birth and the challenges, both emotional and financial their parents face. Through sharing stories like ours, by speaking with local health visiting teams and GPs and through fantastic programmes such as Miracle Babies currently on television we can slowly lift the vail on the often secret world of neonatal care. Only by speaking truthfully and honestly about our experiences can we raise awareness one step at a time.