Tag Archives: premmie

More time for mums and their premature babies

It’s quite simple really, when your baby is born prematurely you miss out on weeks, often months of maternity leave.

Thousands of people have now signed to extend maternity leave for mothers of babies born too soon and this is what we are asking the government to do….

When my first son was born ten weeks early, I had no idea that maternity leave would begin the very next day, months before we would bring him home. Born too soon, the reality of life in neonatal care is very different from what a mother would usually expect from the early days of maternity leave. Lines, monitors, life support machines and recovery from what is often a traumatic birth. Mothers wait days, if not weeks to hold their babies for the first time and face the agonising journey home without their baby each day. The very real cost of premature birth is not only measured in terms of financial pressures placed on families, most recent studies suggest in excess of £2,000 for an average NICU stay, but also upon the long term health implications for the mother, her ability to return to work and her babies development. Extending statutory maternity leave and pay would give mothers the emotional and financial support needed at a time of great stress and trauma – in turn leading to better postnatal health, a more positive return to work and better outcomes for babies development. We call on the Rt Hon Savijd Javid MP and colleagues at the department for Business, Innovation and Skills to recognise the significant and unique needs of families with children born prematurely and to extend statutory leave accordingly.

Not yet signed the petition to give mums more time with their premature babies – SIGN NOW! 

Too soon, too early – this family needs more time

Zara family

My husband always said I planned my pregnancy like a military operation. We got married in May 2014, got pregnant a couple of months later and our baby was due in April.

We knew what were going to call our baby from before I even fell pregnant. I did everything right, watched my diet, got my husband to give up smoking, took his and hers vitamins and joined the gym.  When I got pregnant I convinced my husband and we moved from our flat into a house. I have 14 baby apps on my phone and joined numerous baby and pregnancy groups on Facebook!

I draw up a timeline and planned what to buy and when. My husband and mother were going to be my birthing partners and we were going to attend parent craft classes. I was proactive in planning my maternity leave. I’d set deadlines to wrap up projects and had the date set for my mother to arrive from Nigeria to help.

I’d planned my maternity leave based on what we could manage financially. I was the main earner and luckily through my work would receive 6 months full pay as statutory maternity pay alone wouldn’t cover the bills. The plan was to go back once my 6 months full pay was exhausted and my husband, who was on a zero hour contract, would have more flexibility to work part time to look after the baby and save on childcare costs.

My pregnancy was not stress free. I had nausea throughout and felt very tired; but despite that I revelled in the fact I was going to be a mother, loved the cravings and enjoyed the weird and wonderful things that came with being pregnant. It was tough, but I wanted to feel pregnant.

I was 24 weeks and everything was going well, I just felt tired. I saw my GP who signed me off work to “catch my breath”. Apparently the stress of moving house and the Christmas hype had got to me.

On the Thursday and Friday night (1st and 2nd of January), I’d woken up feeling more nauseous than usual and with a bad headache. My husband insisted I saw my nurse. I dismissed it, but he’d been reading his “Pregnancy for Dummies” book and this is the post I put up in one of my pregnancy Facebook groups:

“My husband, who is definitely not a doctor has diagnosed me with pre eclampsia. I’m literally being dragged to the walk-in centre now. I’ve had a bit of a fever and sickness and diarrhoea for a couple of days. I’ve told him it could be something I’ve eaten and not baby related. But noooo! ! He is checking that we have enough stuff in the delivery bag, pads, comfy clothes etc. If I wasn’t so cold and felt so ill I’d be laughing – 27 weeks pregnant. Talk about over reacting!”

Two hours later, this was my post to the same group:

“Hubby was right. Baby will be here early apparently. They say I have pre eclampsia. I’m in shock obviously, done all the crying. The only way to cure pre eclampsia is to deliver the baby. Please pray for me.”

zara iiSo that was it, my baby was born at 27 weeks gestation.

That was not in my plan.

It was not on my spreadsheet.

Chizara Maya was born on the 5th of January weighing just 1lb 13oz.

A lot of what happened after that is still a blur. I went into auto-pilot and I’m not sure I have come to terms with it yet. I still cannot believe what happened. We spent 9 weeks in hospital and before I knew it my mother had abandoned her job and arrived in the UK, but my husband had no choice, he had to keep working because of his zero-hour contract.

We finally bought our daughter home after 9 weeks in hospital. I’d barely lived in this house and now I had a baby at home with me. We weren’t prepared. I wasn’t ready. We somehow managed to sort out a cot, the pram, the car seat, and all the other baby things you need before coming home. It was not how I’d planned.

zara and mumZara came home on oxygen. We had nurses coming to the house twice a week at first, as well as the health visitor and Physiotherapist. I made sure she was fully breastfed by the time we came home, but there was a lot to grapple with. I was suddenly very anxious. Zara was now home and not in hospital where she was solely in their care. I couldn’t sleep. What if she stopped breathing? What if something went wrong? The fear was palpable. I had no idea what I was doing. We didn’t get a chance to go to parent craft classes. I had no idea what to expect. I didn’t even know how old to tell people she was. Surely by 10 weeks of age she should be able to hold her head without support, she should be able to roll over by 12 weeks of age… but at this time, my child was not even meant to be born. 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.

I finally learned to relate to my daughter based on her corrected age. I had to recondition my mind entirely. Only then did I begin to relax and allow myself to watch her grow and almost enjoy the stage we were at. She had smiled at us, she was holding her head up and things were getting better in my head. I could actually see that my child was thriving.

Zara

Imagine my shock then when she was about 11 – 12 weeks and I started to hear from work about returning! I had made my original plans thinking my baby would 6 months old, not a tiny 12 week old. It dawned on me that even though my child was medically and developmentally 12 weeks old, she was born 6 months ago. I was torn. How could I leave my 12 week old baby? I was in no state mentally to go back to work. But we have bills to pay. I wasn’t sure what to do. I didn’t want to miss those small but mighty milestones in my baby’s life and I was only just beginning to sleep again. She is a breastfed baby and if I go back to work now would I have to start weaning her off breast milk? Would she take a bottle? She is still on oxygen at home…she still needs me.

Here come all the feelings of being cheated again and that old friend anxiety. What do I do?

I have decided to stay off work until Zara and I are ready.

How will we pay the bills? I don’t know.

My husband has been working non-stop since Zara was born, but I was the main earner and we need my income.

We will have to come up with something. I’m not ready, Zara’s not ready. It’s too soon.

With thanks to Ije McDougall for sharing her story

If you think that statutory parental leave should be extended for mothers of babies born too soon, please sign our petition – SIGN NOW!

Zara and dad Zara iiii Zara iii Zara i

All planned out – why NICU mums need more time

I had it all planned out; I would wind down work slowly, finishing Christmas Eve.

I was beginning to feel relaxed and confident in my pregnancy, daring to think about what life would be like once the baby was here. I had finally agreed a date with my friends for a baby shower, totally unaware that a week later I would go into labour.

One morning I decided to go to hospital after experiencing a few pains through the night, with a show of blood. Shortly after arriving I was told that my placenta was hanging on by a thread and I was 6cm dilated. My husband and I were told that we would be delivering the baby that day, 14 weeks early.

My son Lewis was born that evening, the 2nd October 9.32pm at exactly 26 weeks; weighing 1lb 12.

The survival rate for the first 72 hours was 50:50.

My maternity leave kicked in the very next day and for the next 93 days my husband and I lived and breathed the Neonatal Intensive Care Unit (NICU). We were in limbo; we were parents, but we could not take our baby home.

Lewis - day one

Lewis – day one

My last trimester of pregnancy was spent watching our little boy grow inside an incubator. I had never experienced anything like it, emotions ranging from sheer grief and helplessness to absolute admiration for this little boy fighting every step of the way. It was an extremely traumatic and stressful time for us all.

With hindsight I can look back on Lewis’ time in the hospital with a fondness. Knowing that I experienced something very special, seeing him achieve milestones that full term parents would never see. I always saw myself as being tough, someone who rolls with the punches, but seeing your baby battle to stay alive with the constant set backs, takes its toll. One step forward, two steps back was considered the norm.

Lewis finally came home 31st December 2014 and the reality began to set in that we had our baby boy home. To begin with, it took us a long time to feel confident in our parenting abilities. We had been ‘institutionalised’ – a direct consequence of being in hospital for 93 days. Knowing that we had the support of doctors and nurses if anything were to happen. Suddenly that support was gone and we were on our own, responsible. Our first night home was absolutely terrifying.

Lewis aged  9.5 months - 7.5 months old corrected

Lewis aged 9.5 months – 7.5 months old corrected

Initially I didn’t think of the impact that Lewis prematurity would have upon my maternity leave. The plan was to return to work in a years time. As time went on, I started to think of the implications of returning work in October 2015 and I began to fret at the thought of having to leave Lewis – I didn’t feel ready at all. All I kept thinking was, what about Lewis, he’s not ready and what about me, I’m definitely not ready.

So what if the maternity leave was extended to allow for the time lost in hospital?

It would have given me time to process the trauma of Lewis being born so early. As that time spent in the hospital unearthed some extremely raw emotions and 10 months on I continue to have reoccurring nightmares. This is my brain coming to terms and processing what has happened.

Time for Lewis. It would allow me to continue to support my son’s 3.5 month delayed development, which should eventually subside by 2 years old. It would allow for extra time that we lost together in hospital, time to reflect and time to embrace what we have.

Extended financial support through the extension of Statutory Maternity pay. Giving mothers of premature babies a choice, not feeling pressurised to return to work, or indeed having to give up work because of the financial implications.

Fortunately my company has allowed me to take a 4 month unpaid career break, giving me this extra time, however financially we will be worse off. This additional time is important to me and important for my son, but this option is not widely available and may not be possible financially for many families. This is why I believe in the extension of maternity leave for families in neonatal intensive care, taking into account individual circumstances and giving time and the financial support to take that extra time if needed.

Guest Blog by – Jessica Hayler

If you agree, please sign our petition to extend parental leave for families in neonatal intensive care – SIGN NOW!

Premature Baby: One Size Doesn’t Fit All

Guest Blog by Tracy Burkinshaw, who describes her journey with baby Lincoln – one size doesn’t fit all.

Whenever I tell people that my son was premature, the first thing they want to know is how much he weighed. They never expect the answer to be “7lbs 8oz” and usually they respond to this revelation with “oh, you must have gotten your dates wrong!” or “he must have been ready to come!” or, my personal favourite ” you’re lucky that you didn’t go full term!”. The truth is, he may have been a gigantic preemie, but he was still premature and he still suffered for it.

Lincoln was born at exactly 34 weeks gestation. We’d known for a while that things weren’t exactly going to plan; my diabetes wasn’t behaving which meant that he was growing bigger and bigger by the day, he also stopped moving towards the end. I was admitted to hospital at 33 weeks when my consultant uttered the words that no parent wants to hear “we may not have a live birth if we wait much longer”.

My son was delivered via caesarean section two days later. He came out crying which was a truly wonderful sound, but things started going downhill very quickly. Within minutes he was gasping and he was unable to breathe for himself. I briefly caught a glimpse of him and then they whisked him away to the NICU, leaving me on the operating table. While I was being stitched up a nurse told me that he was the biggest 34 weeker that they’d seen, weighing a huge 7lbs 8oz.

The sad fact in many hospitals is that they don’t have a separate ward for mothers of babies in the NICU, so I was put onto a ward full of happy mothers with their healthy babies, it was soul destroying to be surrounded by constant reminders that my son wasn’t with me but was desperately ill on another ward.

Lincoln was around 6 hours old when I got to see him again, he was covered from head to toe in tubes and wires. He was on a ventilator and had lines going into his umbilical cord and into his hands and feet. It was at this point that reality hit me; his large size meant nothing, he was premature and was struggling because of it.

Lincoln

I’d been naive in thinking that his size would mean that he’d be ok. The grief hit me like a wave later that night on the postnatal ward. Listening to the cries of healthy babies around me I started to sob, grieving for the lost couple of months of my pregnancy, grieving that I couldn’t experience the joys of getting to do the first feed and the first nappy change with my newborn son, and grief that my body had failed to do what it was supposed to do. I also worried that I had let down my husband and my three year old daughter.

After a few days Lincoln no longer needed any help with his breathing and I was finally able to start getting more involved in his care. I finally got to change a nappy, and I was ecstatic to be able to try breastfeeding him. I expected him to latch on straight away, however, I didn’t realise that babies often don’t develop the sucking reflex until around 36 weeks gestation, and at this point Lincoln hadn’t yet developed it and so couldn’t feed by himself. Again, I’d assumed that because of his size that he’d be developmentally advanced too, but that wasn’t the case; he was behaving exactly like a 34 weeker should. I was persistent in trying to get him to breastfeed and after a few days he finally started to feed in tiny amounts. It was a slow and frustrating journey as he was too young and too sleepy (due to jaundice) to feed effectively, eventually though, he got it, just as the nurses had promised he would.

Now, five months later, I look at my happy, smiling little boy and can’t believe the journey that he went through. His first few weeks were incredibly rough, even once home we had constant hospital visits – prolonged jaundice, enlarged liver, hearing tests, hip scans, chest x rays, liver scans, blood tests – it felt never ending, but we’ve come out the other side. He’s still under consultant care but our not so little superhero will continue to fight through it.

Lincoln I

People are always surprised at the size of Lincoln. He’s on the 98th percentile for his gestation so it’s difficult for some people to understand that he was premature. People expect preemies to the tiny, but that’s not always the case. Some of the comments that we get can be really upsetting, I know that they mean well, but asking if my dates were wrong, or telling me that I’m lucky that I didn’t have to experience the uncomfortable last stage of pregnancy isn’t helpful, it just makes me sad that I didn’t get the ‘normal’ pregnancy experience and it makes me feel like I’ve failed. I find myself telling strangers that he was premature, like somehow, me telling them will validate his experience. I want people to know that despite his size, he was poorly and that my son has gone through more medical procedures and tests than most people will have in their entire lives, but he got through it because of his fighting spirit and the love of his family.

With thanks to Tracy for sharing her story. 

Like what you’ve read? Would like to help us raise awareness? Then please use the Facebook and Twitter buttons to Share Now! 

The thing I remember about NICU is…. #DadsDoNICU

11351121_1605702686352890_8034685534623854660_n (2)As part of our “Dads Do NICU” series, we asked fathers to describe their memories of neonatal care…  Thank you to Trevor Greenway-Clissold who shares his memories of his journey through neonatal care with daughter Ophelia.

When I found out our baby would be born early I felt…  helpless. There were suddenly doctors and nurses in the room all doing dozens of tasks, I wanted to be able to do something to help my wife and our daughter too.

The thing I remember about NICU is… the sounds. I can still hear all the beeps and tones of countless machines and monitors, the sound of the lift and doors, all those little triggers.

I felt like a dad when… they told me we had a daughter and we gave her a name.

Who were you with when you first saw your baby in NICU? – I was on my own. My wife couldn’t be transferred after an emergency casaerean and was kept at our local hospital. She told me to go with our daughter so she wasn’t alone.

first hold, day 5

first hold, day 5

How long was it before you first held your baby? – Five days

What advice would you give to other NICU dads? – Everyone deals with things in different ways, and partners will as well. Just be present in every moment with your baby, write things down, take photos, anything to help you remember things because they change so quickly. Find little things you can do that can make you feel a part of everything that’s going on. Accept help, family will feel helpless as well, especially with very limited visiting, just doing some washing or cooking a meal, little things that give you more time to focus on the important things.

Vote Now! – Should maternity leave be extended….

smallest thingsMaternity leave for mothers of premature babies begins weeks, sometimes months before they can bring their baby home. The Smallest Things has written before on why we think maternity leave should be extended for mothers of babies born too soon, but we’d love to know what you think?

Should maternity leave be extended for mothers of very premature babies?

Twelve days of NICU!

12 days of NICUA little something for the festive season!

On the first day of Christmas NICU gave to me, a tiny, little,early baby!

On the second day of Christmas NICU gave to me; two tiny feet and a tiny, little early baby!

On the third day of Christmas NICU gave to me; three incubators, two tiny feet and a tiny, little early baby!

On the fourth day of Christmas NICU gave to me; four breathing tubes, three incubators, two tiny feet and a tiny, little early baby!

On the fith day of Christmas NICU gave to me; FIVE FIRST HOLDS!…four breathing tubes, three incubators, two tiny feet and a tiny, little early!

On the sixth day of Christmas NICU gave to me; six jaundice lights, FIVE FIRST HOLDS!…four breathing tubes, three incubators, two tiny feet and a tiny, little early baby!

On the seventh day of Christmas NICU gave to me; seven kangaroo cuddles, six jaundice lights, FIVE FIRST HOLDS!…four breathing tubes, three incubators, two tiny feet and a tiny, little early baby!

On the eighth day of Christmas NICU gave to me; eight mums expressing, seven kangaroo cuddles, six jaundice lights, FIVE FIRST HOLDS!…four breathing tubes, three incubators, two tiny feet and a tiny, little early baby!

On the ninth day of Christmas NICU gave to me; nine monitors beeping, eight mums expressing, seven kangaroo cuddles, six jaundice lights, FIVE FIRST HOLDS!…four breathing tubes, three incubators, two tiny feet and a tiny, little early baby!

On the tenth day of Christmas NICU gave to me; ten weeks early, nine monitors beeping, eight mums expressing, seven kangaroo cuddles, six jaundice lights, FIVE FIRST HOLDS!…four breathing tubes, three incubators, two tiny feet and a tiny, little early baby!

On the eleventh day of Christmas NICU gave to me; eleven NICU nurses, ten weeks early, nine monitors beeping, eight mums expressing, seven kangaroo cuddles, six jaundice lights, FIVE FIRST HOLDS!…four breathing tubes, three incubators, two tiny feet and a tiny, little early baby!

On the twelfth day of Christmas NICU gave to me; twelve micro-nappies, eleven NICU nurses, ten weeks early, nine monitors beeping, eight mums expressing, seven kangaroo cuddles, six jaundice lights, FIVE FIRST HOLDS!…four breathing tubes, three incubators, two tiny feet and a tiny, little early baby!#smallestthings

 

TOP TEN! – What not to say

Thank you to all the mums on our Smallest Things Facebook Page who helped compile this top ten list of what not to say to the parent of a premature baby….

untitled (4)“At least you can go home and get a good night sleep” – firstly, you don’t want to go home; going home means you have to leave your baby. Secondly – a good night sleep! Mothers of premature babies express milk every three hours to enable their babies to have breast milk via a naso-gastric feeding tube. The expressing routine is akin to the routine of feeding a new born baby, only you don’t have your baby with you, no babies cry at night to wake you to feed, just your alarm telling you its time to get up and express again. No, there are no good night sleeps.

images9J46MDT1“At least you got to miss that really big stage”. If health allowed it I would take the ‘really big stage’ (or final trimester!) any day over a premature birth that resulted in weeks of hospitalisation, separation and risked the unthinkable.

imagesDIPRKXTBBeing asked about your birth plan – premature birth is often sudden with little warning. Sometimes it happens so early that you haven’t even thought about names or decorating the nursery, let alone a birthing plan!

imagesTB6KW868“When I told another mum my baby was 2lb 10oz and she laughed and said “you must have just sneezed and he popped out” Utter disbelief that people can be so insensitive..”

imagesJV8WBVK2“I couldn’t have left my baby in hospital” or as one group of mothers told me – they couldn’t have left their babies in the first few months as they were attached to them feeding all the time. This is not what you want to hear when your experience of your new born is watching and waiting for the precious moment when you can hold them. And your experience of feeding is being attached to an expressing machine.    –   I found it most traumatic if people asked if I was breastfeeding. The sense of failure on that part every time someone asked and I had to explain about the suck reflex and tubes and expressing was immense”

imagesLewd comments about women with their tops off in the expressing room are NEVER ok!

images0VLZGFX3Don’t worry everything will be ok… Being told not to worry or given statistics on the good chance of survival – comments like these are rightly made to give hope and offer reassurance, but they can also brush aside the natural and very real fears that parents face. As one mother described, statistics and success stories can not alleviate the “overwhelming feelings that you are faced with when you first see your baby in a box with all the tubes coming out of their little bodies”.

untitled (4) “You can’t wrap them up in cotton wool” or “It’s only a cold.” ‘Only a cold’ can have serious breathing and feeding consequences for babies born too soon.

images31X5N2ZQGenerally any comment that mentions size or ‘catching up’ – by the time premature babies leave hospital they have usually doubled if not nearly trebled their weight. ‘Catching up’? They will have had the biggest growth spurt of any baby you’ll ever likely to meet! And size; parents of premature babies are usually aware that their babies are smaller than others, we don’t need reminding! I was often stopped in the street and would be asked all sorts of question by complete strangers about my ‘tiny’ baby. I found myself explaining and sharing details I would never normally have shared with passersby. An abiding memory though was a shop assistant who called out across the shop floor to her colleague “come over here and have a look at this premmie baby”.

untitled (5) “Thank goodness all that is over”. For those who thankfully bring their premature baby home, leaving hospital is rarely the end of the journey. Children born early may have ongoing health needs; if they don’t you may worry they will, and the experience of neonatal intensive care will always stay with you.