Tag Archives: kangaroo care

25 Weeks Gestation – Our Beautiful Little Lady

Two years ago I woke early with period type pains.

I was 25+5 weeks pregnant.

I knew something was wrong, but wanted to dismiss it.

The thought of labour at this early stage was very, very scary.

For some reason, I thought the age of viability was 28 weeks. After realising the pains were more significant, more like contractions, I spoke to the maternity assessment unit. They told me to come straight in.

It was a Saturday, so I thought I’d leave dad at home with our 3.5 year old, and drive myself in. I was fully expecting to come home again later the same day. Sadly that wasn’t to be and our daughter was born by emergency section a few hours later.

Having been through an emergency section before with my son, though he wasn’t premature, I knew the drill. I tried to not think about whether or not our baby would survive. I did asked though, and was told she had a good chance. The operating theatre seemed to be jammed packed and noisy. But once it all began things became focused and hushed. The consultant told me my baby was a girl. I asked to see her so they lowered the screen; she looked at me through one opened eye and she looked so beautiful. I didn’t realise how small she was until later.

A tiny baby, far away from home

We were at a level 1 unit, but my new daughter needed to be in a level 3 unit. She was transferred as soon as a space was found, thankfully not too far, but still a two hour drive away. I was transferred the next day and got to saw her later that afternoon.

She was so tiny and hard to make out with all the wires and tubes. The next day I asked on the ward round what I could do to help and they said express milk. I didn’t think I’d have any yet, but after hard work, tears, determination and good support, I was lucky to get a good supply going. It really was the best thing for her and felt so good to be able to DO something. I was expressing far more milk than she was taking, so was able to donate to the milk bank. She luckily had very few problems on her journey through NICU, apart from giving us a big scare on April fool’s day. She was suspected of having Necrotising Enceterocolitis (NEC), but thankfully it didn’t develop. She was on and off antibiotics a lot and up and down with the amount of expressed milk she was taking – it was difficult, but we got there!

Our other difficulty was that I was discharged three days later; we were two hours from home, I didn’t know the area and could barely walk, never mind drive! There was little coordination between the maternity and the neonatal units. I was told there was an on-call room, but that it probably wouldn’t be available for more than two or three nights. Luckily, as it turned out, I managed to have it for the full six weeks of Isla’s stay, and the neonatal unit were brilliant at ensuring this. They also provided me with a daily meal ticket and ward breakfasts and lunches. It wasn’t possible for my son and partner to stay, but we were loaned a flat one weekend and they did day trips once or twice a week. It was very hard being separated, especially for my young son, but it was the only way to manage it. I felt I needed to be there 100% for my baby, so I knew I’d given her everything I could. I generally used the weekends to go home and have a much needed break, but it really is an area of neonatal care that needs improvement, as it’s not uncommon, especially in rural areas for mum and baby to be separated more than they should.

Kangaroo Cuddles and our Extended Family

I soon filled my week days with expressing, sitting by the incubator, and occasionally getting cuddles. The second most important thing, that I would advocate, is Kangaroo care. It has proven benefits for both and mum and baby, once baby is medically stable enough, and it was the best thing for me and Isla. It enabled us to regain some of the pregnancy closeness we’d been robbed of. Most days we would have one or two skin-to-skin cuddles. I have a vivid memory of a very alert tiny baby lying on my chest and looking up at me with the biggest eyes. It was so amazing, at only 30 weeks, and all the other neonatal midwives came to have a look. All the neonatal staff were great and I soon got to know the group of midwives who looked after her, and she was popular with them. Together with the other mums in the expressing room, they became our extended family.

After 6 weeks the day came when Isla was well enough to return to the local unit. From there she continued to make a steady recovery and I was able to have a much better home/hospital balance. I became more involved in her daily cares and once she was out of the incubator, gave her her first bath. The last thing to come was establishing breastfeeding, but that suck, swallow and maintaining breathing action is tricky for little ones!

Isla spent 8 weeks at our local hospital and came home two days before her due date. She was sort of breastfeeding and topped up with bottles and came home off oxygen. She weighed 5lbs and was still tiny, but at least she fitted in the tiny baby clothes range now.

The worry of being at home

Being at home was nerve wracking to start with, and seemed such a huge responsibility. I think you never stop worrying, and we had good aftercare. You somehow need to reclaim your baby and trust your maternal instincts – that comes with time. The thing I was least prepared for was the innocent question of ‘how old is your baby?’ Even now I find myself explaining our story and her two ages. She hasn’t caught up with her corrected age, never mind her actual, and as she reaches the age of two they will stop correcting her age.

She is our beautiful little lady, as she was nicknamed by the neonatal staff, and does amazingly well. She’s crawling and pulling up to standing but not yet walking. It’s a lesson in not comparing to friends babies and measuring her progress from where she started – a 2lb scrap of a thing that fitted into my cupped hands.

Isla Rose

She is a delight and such a happy thing. We held a fundraiser for the neonatal units to coincide with the first world prematurity day of her life, and have taken her back to both neonatal units. We are eternally grateful and can never thank them enough for their kind and compassionate care, who together with friends and family, made such a difficult journey bearable.

With special thanks to Beth Nightingale for sharing her story with The Smallest Things.

If you’d like to help The Smallest Things continue raising awareness of premature birth and the journey through and beyond NICU, then please press the Facebook and Twitter buttons to SHARE Isla Rose’ story.

Just a Little Longer Please: Time After NICU

10 weeks early, my little baby, is with us far too soon.

I’d like to keep you safe inside,

Just a little longer please.

 

The nurse showed me your tiny face, wrapped in a blanket tight.

I reached out to touch your cheek, a mothers instinct strong.

I couldn’t touch you as you couldn’t stay, intensive care was needed.

I longed to shout as I watched the team whisked you away,

“just a little longer, please!”

Your little eyes were open, when we met in neonatal care.

Terrified I reached inside the incubator walls;

a tangled mess of tubes and wires, stick thin limbs so small.

Your tiny hand gripped my finger tight.

I prayed – fight my baby, fight.

 

How could I leave my baby?

I am empty now inside.

Emotion overwhelmed me, consumed with grief and loss.

How can I leave my baby – just a little longer please.

 

6 long days I waited, to hold you in my arms.

Lines and tubes obscured your face, the monitor alarmed.

Ding, ding, ding the ringing went, our time together up.

I whispered to my baby – “just a little longer please.”

3 hours became a golden rule, expressing on the clock.

Now we’re allowed kangaroo cuddles, time just for you and me.

But once again, three hours are up, is it really pumping time?!

I’d hold you close and feel your warmth, sometimes our only cuddle of the day.

I look to the nurse, she looks to the clock – “just a little longer please”.

 

Weeks and months in neonatal care, our journey has been immense.

You’ve grown and you are stronger, but my baby you’re still so small.

Home we go at eight weeks old, your due date still not reached.

 

At home we can be together, no monitors or alarms.

For the first time in forever I begin to be your mum.

I feel the pain we’ve been through, I stop to take a breath.

I realise now, what other NICU mums will know, my journey has just begun.

smallest things

More hospital trips and appointments,

Corrected age explained.

Coughs and colds take their toll on little preemie lungs.

 

My boss has started calling, return to work is near.

My maternity leave is over, but please it’s just too soon.

We’re only now just bonding and my nerves are much too frail.

It can’t be time to say goodbye, please just a little longer.

Just a little longer please.


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If you believe that mothers & premature babies need more time together after neonatal intensive care please take a look at our PETITION to extend maternity leave for mothers of babies born too soon  – https://goo.gl/KeLrVv

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Kangaroo Care: Dads Do NICU

Yesterday was Fathers Day.

In neonatal intensive care units across the country fathers spent the day sat beside incubators – sat waiting, watching and hoping for a precious hold with their tiny baby.

The Smallest Things dedicated the week to sharing stories and raising awareness of the journeys that dads take through neonatal care. Dads do NICU too, and often tread the first steps of the journey by themselves; visiting their fragile babies alone whilst mothers recover from traumatic births and surgery.

Jonathan writes movingly about the first time he visited his son…

“My wife came back to recovery but was too ill to make the journey to the other side of the building where Ethan was being cared for, so I made the trip alone. I couldn’t make my mind up whether to walk quickly or slowly as the excitement of having a son was tainted by my worries over what I was going to see. What I found was a strange, almost alien like red/purple 800g dot in a white eye mask and a pink wool hat, no bigger than my hand with a myriad of wires and tubes as attachments. But he was also the most amazing thing I’d ever seen.” …….   From A NICU Dads Experience

Dads do Kangaroo Care

Fathers shared beautiful pictures of Kangaroo Care and we decided that there are simply not enough pictures of dads in neonatal care, let alone pictures demonstrating and encouraging skin-to-skin time for NICU dads. Darren wrote honestly about how sacred he was of holding his twin daughters, how initially he avoided skin-to-skin care. That changed though when he held them for the first time….

“By then I was a little more open to the idea of holding them and my heart completely melted. Any apprehensions I felt when being handed my two miracles was gone the minute I held them. I spoke to them and as I did each one looked up at me. My heart melted every time I saw that and still does when I look over the pictures of the occasion. I also believe that my bond with my daughters was established at that very moment”. …. From Daddy’s NICU Twins

Our #DadsDoNICU week may have come to an end, but we will continue to write about fathers in NICU and will continue to share photos encouraging skin-to-skin care with dads… here are a few to keep us going x

FB_IMG_1434871129975FB_IMG_1434871058501  FB_IMG_1434871035864 FB_IMG_1434871003714 FB_IMG_1434870998064 FB_IMG_1434870971012 FB_IMG_1434870937018 FB_IMG_1434870869446 FB_IMG_1434870857352 Kangaroo Care

 

 

 

 

Daddy’s NICU Twins

11351121_1605702686352890_8034685534623854660_n (2)Guest post written as part of our “Dads Do NICU” week, with thanks to Darren for sharing his story….

On September 23rd 2014, my partner and I went to the hospital for what should have been a routine pre-natal appointment. Every appointment was a terrifying experience for me, in part due to the loss of a child 2 years earlier, but also because we’d encounterd difficulties with cord flow and Inter Uterine Growth Restriction (IUGR). Sarah had already been in hospital due to the  IUGR and had been given steroids to help with the babies lung development should they come early.

We were both sitting in the waiting room becoming increasingly anxious.

Suddenly, out of the corner of my eye, I spotted our consultant. She was running around in that headless chicken way we’d come to know and love from those who are important to us. I don’t think she spotted us initially and it was on her return trip that she made her way through the waiting room to tell us that she was trying to arrange our c-section for that coming friday. After dropping that little bombshell she dashed off leaving both Sarah and I with our jaws on the floor.

This was really happening, and sooner than we’d expected!

It’s not that we weren’t prepared – we were.

Everything we needed was set up, ready and waiting at home; but at that moment we realised WE weren’t setup. The nerves kicked in and I remember the feelings of terror. I was shaking. When we went in for the appointment I don’t think either of us could take anything in… and judging by the amount the consultant wrote down for us and the bundle of literature handed to us, I think they knew we weren’t taking anything in!

Friday the 26th of September – we sat waiting to go up to theatre. We knew it wouldn’t be long now before we were parents again, but we also know that this time was very different, unrecognisably so.

At 11:07am, baby Marnie was born at 33 weeks & 5 days, weighing a very reasonable 3lb 10oz. Fifteen seconds later Faye came into the world weighing 3lb 9oz. Faye needed a little help breathing but once she got going, she did just fine. The girls were brought over for us to see before being whisked away to neonatal care.

Now the hard work really began.

Neither of us had ANY experience of premature babies; we were both equally terrified. I went to see the girls that day – Sarah wanted me to check on them and I needed to know they were ok.

prem twinsI walked through the hospital, taking the trip to special care to visit my daughters for the first time. They were both in incubators with lots of wires and tubes, or so it seemed. Looking back at the video it’s not nearly so daunting, but in that moment it was terrifying. We’d thankfully had a tour of the unit beforehand so we had an idea of what to expect and I’d highly recommend a tour if you know you’re likely to have a NICU stay.

Faye was sleeping on her back in a “daddy” position. She didn’t stir when I spoke to her through the plastic of the incubator. Marnie was 2 incubators down sleeping on her front in a “mummy” position. I took pictures and videos and went back to show Sarah. They helped to put her mind at ease.

Later that evening, with the feeling returning to her legs, Sarah was ready to meet our daughters properly too. Having seen the video and pictures she had a idea of what to expect, but I think it was still a shock when she saw the girls for the first time in NICU.

The next day Sarah was able to have some Kangaroo care (skin-to-skin) time, which is both extremely important and good for mother and baby. That’s not to discount the importance to daddy, but to be frank and honest, I was utterly terrified. Here were these little fragile human beings with no body fat and lanugo (hair on the babies skin that would normally be gone by term) and I was simply scared.

By day 3 we were becoming a little more at ease and we both changed a nappy – I had my mind blown! The girls had no body fat and because they had no body fat, they had no bum cheeks!

Dads do NICUAlso by day 3, I was a little more open to the idea of holding them and my heart completely melted. Any apprehensions I felt when being handed my two miracles was gone the minute I held them. I spoke to them and as I did each one looked up at me. My heart melted every time I saw that and still does when I look over the pictures of the occasion. I also believe that my bond with my daughters was established at that very moment.

We were a lot more at ease by day 4. Partially because the girls were out of high dependency, but also because we’d begun to take a more active role in their cares.  We went in for 5 hours a day, which in the grand scheme of things isn’t a long time, but you have to consider that all the time the babies are out of their inubator and awake, their bodies are burning critical calories that they need. Outside this time Sarah and I made time for each other, making sure that despite the stress and trauma our relationship stayed strong.

NICU dadOur girls spent a total of 16 days in special care and by the time we left we were offering guidance and support to other new parents -We’d gone from terrified parents to NICU experts and I’d like to think that those we advised passed that support on to others, just as it was passed on to us.

 

 

 

A NICU Dad’s experience

11351121_1605702686352890_8034685534623854660_n (2)Guest Blog – written by Jonathon Burke, Ethan’s dad,  as part of our Dads do NICU week 15th – 21at June 2015…

Having your first baby is scary, and that’s when you think everything will go to plan.

To say I was a nervous expectant parent would be an understatement. I’d never held a new-born (without it being placed in my lap), never mind changed a nappy or give a bottle. Special precautions were taken like the purchase of a snuggle bundle so I could be confident picking up my baby whilst providing the right head support… all this when I thought I’d be getting a regular sized baby (in fact, we thought they’d be larger than average on account of my height).

Reality came close to 27 weeks when my wife, Tara, fell ill – blood pressure was a little high – “come back tomorrow sometime and we’ll check it again” they said.

Rather than endure the queue in the maternity outpatients, we headed over early on the Saturday morning… “Shall I take an overnight bag?” Tara asked but I dismissed the idea – we’d be home in time for lunch.

We weren’t.

Tara was kept in and steriods administered to help with the babies lung development. I said all the right things (I think) but inside I was convinced it was all a false alarm, things would settle down and I wouldn’t get to see my first born for another 3 months. Over the weekend Tara ’s health deteriorated further and I finally understood on Sunday evening that I’d be meeting my baby on Monday 17th November (as it happened – World Prematurity Day).

Ethan arrived by ‘C’ section at 14:21 on the Monday in a very congested operating theatre. I’d been there by Tara ’s side until things went awry and I was ushered out of the room – in the dark about the health of my wife and unsure if I’d seen a baby amongst all the hospital staff. I didn’t have to wait too long for news – “It’s a boy – He’s been taken to NICU.”

My wife came back to recovery but was too ill to make the journey to the other side of the building where Ethan was being cared for, so I made the trip alone. I couldn’t make my mind up whether to walk quickly or slowly as the excitement of having a son was tainted by my worries over what I was going to see. What I found was a strange, almost alien like red/purple 800g dot in a white eye mask and a pink wool hat, no bigger than my hand with a myriad of wires and tubes as attachments. But he was also the most amazing thing I’d ever seen.

Ethan

The changes in Ethan over the first few days were remarkable. His colour changed, he gained weight and moved off full ventilation and onto CPAP (continuous positive airway pressure).  Tara’s recovery was slow and it would be a couple of days before she was able to make the trip to see Ethan herself. Then further illness kept her away for another week so it was tough being the conduit for information.

Those early days went by in a blur… I was conscious of the fact so I started to make notes so I could keep Tara and the family informed… the demand for information got greater as more and more friends and relatives heard of the early arrival so we decided a daily e-mail “blog” wold be the best solution and I took up the mantle.

Written from Ethan’s perspective, it gave me something to concentrate on and helped while away the lonely hours sitting by his incubator. It also gave us the opportunity to put a positive spin on how Ethan was doing and, how we were all coping.

Looking back, I think I did ok; the nappy changing fear disappears quickly when you are having to do it through a porthole with a nurse or two watching on. Similarly, the emotion of his first trip out of the incubator and onto my bare chest is something that I’ll never be able to think about without being brought to the brink of tears.

Kangaroo Care

Kangaroo Care

You find yourself easily falling into a new routine – making your way in to the hospital in time for rounds (remembering always to bring drinks and food to sustain you through the day), cares, kangaroo time, more cares, visiting time, cares again before heading home for a late dinner and bed. Days of the week don’t matter anymore – the only clue that it’s a weekend is the change in traffic getting to and from the hospital.

 There are good days… the excitement of his first poo, the day he had a bottle for the first time or makes that momentous move from the incubator to a cot.

Inevitably, there are also the not so good – the call in the night “advising” we come in followed later by chasing an ambulance to a new hospital… strange new environments, new doctors and nurses and new procedures.

I don’t know the stats but I’m sure in most cases the good outweighs the bad. In our case, after 88 days, Ethan got his first ride in his car seat out of the hospital and home.

Feeding HimselfNow 7 months old, he seems to change on a daily basis – something new everyday like rolling over, giggling when tickled, waking up with a smile on his face. He is desperate for more independence with his latest trick being that he wants to hold the bottle or spoon.

In summary, a new dad’s NICU experience is full of fear. It is emotionally hard and physically tiring. For me thought, it also created a close bond with my son and brought my wife and I even closer together (which I didn’t think was possible).

Advice? Stick in there. Be your babies advocate – putting their needs first above all other considerations. Learn all you can from the excellent staff and take over the cares as soon as you are confident to do so. Support your partner – they are probably questioning what they did wrong or could have done differently (the answer to both of these is, of course,  nothing). Most important of all, keep believing that you’ll all be home together soon.

One last thing – I couldn’t write the above withoutEthan & his dad mentioning that Ethan had the very best of care in the Watford General hospital NICU – too many amazing professionals to name and unfair to single out any for individual praise. Ethan, Tara and I will be eternally grateful.

 

 

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Kangaroo Care – Close to my Heart

The first time I held my baby I longed to kiss him; longed to be able to bend my head, to be close to him, to tell him that I was there.

I waited six long day to be able to hold my baby; but placed in my arms he still felt so far way. Looking down I saw lines and wires tangled around his limbs, a breathing tube obscuring his face and buzzers alarmed with each move as he acclimatised to the outside world.  It would be a few more days before I could hold him close to my chest, before I could kiss his tiny head and whisper I love you.

From then on, like other mums and dads in the neonatal intensive care unit, I would sit patiently beside his incubator waiting for a chance each day to hold him against my skin.  Some days he was just too poorly – I missed him dreadfully on those days, heading home in the evening empty and heavy hearted.

imageKangaroo care or skin-to-skin helped me to feel like a mum, his mum. It gave me comfort knowing that this act would help him to regulate his own breathing and heart rate, it would help us find our way out of NICU more quickly. More importantly I saw how deeply he slept on my chest, how quickly he would settle when listening to my heart beat and I knew that sleeping equated to growing time.

The move to special care gave more opportunity for kangaroo cuddles. “Don’t hold them for too long” one nurse used to say, “they’ll get used to being held and it’ll mean more work for you when you get them home”.

I watched as mothers listened when they were told to put their babies back after feeding, “they sleep better and grow more when there in their cots” I heard another nurse say. I didn’t put my baby back, I kept him close.

In NICU and SCBU he would have been alone in his cot for most of the day; alone for much longer than a new born baby born at term and certainly held a lot less. I didn’t agree with the theory that by too many kangaroo cuddles I risked bringing home a clingy baby from hospital. Besides, I knew that the best place for my baby to sleep and grow was close to my heart and that is where he stayed.

Kangaroo care, skin-to-skin, is not only beneficial to mum and baby, it is precious, powerful and vital. When being mum is difficult, when you find yourself lost in a place you hardly know, kangaroo cuddles can silence even the loudest monitor and quieten your darkest fears. Precious moments snatched in an uncertain world – rare private moments to whisper “I love you”.

 

 

TOP TEN! | Did you know….

untitled (4)That 1 in 9 babies require special neonatal care after birth?

images9J46MDT1Holding a premature baby close to your chest, skin-to-skin, can help them to regulate their breathing, temperature and heartbeat. This is referred to as Kangaroo Care and can also help with a mother’s milk production, facilitate breastfeeding, promote bonding and reduce stress.

imagesDIPRKXTBBabies born too soon are babies for longer, developing according to their corrected age (according to their due date) rather than their birth date.

imagesTB6KW868The suck reflex of a baby develops at approximately 34 weeks gestation, meaning that babies born too soon are tube fed until they are strong enough to develop and co-ordinate their suck, breath and swallow reflex. Sometimes premature babies will ‘practice’ and develop their suck with the aid of a micro, tiny dummy in their incubators!

imagesJV8WBVK2A mothers immunity is passed to her baby in the final months of pregnancy. Born too soon, a premature baby’s immune system will not be as strong as a full term baby’s as fewer antibodies will have passed between them.

imagesThe cause of premature birth is unknown in 40% of cases.

Premature baby listTo produce breast milk, mothers of babies born too soon will express on a 3-4 hourly cycle. This routine continues while baby is in hospital, including overnight, as mothers bring their expressed breast milk in from home.

untitled (4)Mothers who have spent time in neonatal intensive care are at increased risk of post natal depression, with a high number reporting symptoms of post traumatic stress disorder once they are at home.

images31X5N2ZQBabies born too soon may have lanugo, a soft, fine, downy hair, covering much of their body. This is usually shed between 33 to 36 weeks gestation.

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There is a financial cost to having a premature baby, with parents spending on average an extra £2,256 over the course of their hospital stay. These costs can continue with subsequent re-admissions and numerous follow-up appointments.

cuddles

……..

 
And one more – did you know, all premature babies and their parents are amazing!