Category Archives: Top Ten

Premmie Mum: Things I Want you to Know

Preemie mum, there’s a lot I could tell you; so much I’d like you to know.

I’ve been there, a NICU mum; sat in a state of shock beside the incubator. So I know that the last thing you need is more information or ‘helpful’ advice when all you really want is answers…

Why did this happen? What could I have done? When will I hold my baby? Will my milk come in? Am in pumping enough? Will I bring my baby home? When will my baby leave hospital? Will they be okay?

Smallest Things

These  are the questions that fill your mind as you get to grips with the world of neonatal care, and as much as I’d like to, I simply cannot answer the most important ones and sadly the answers to some of those questions are never known.

What I can tell you though (and believe me when I say it’s just as important) is this –

  1. Take time to notice the little things; with emotions running high you can miss precious moments. Remember the feel of your babies hand as they grip your finger tightly or the shape of their tiny features.
  2. You are not alone. There is a community of parents who have been before you and will be ready to support and advise. Wonderful staff will help you through the most difficult days and your baby will become your strength.
  3. We are ALL mothers. To those who have lost babies we will always remember them and say their name.
  4. Please let others know how you’re feeling. It can be scary to share your emotions, but by letting friends and family know your thoughts they can empathise and better support you.
  5. Ask for practical help. People may ask ‘what can I do to help’ and you may like to share our top ten list of ways to help prem parents in hospital.
  6. Mum knows best. Yes, it’s true! You know your baby better than anyone. Never forget that or be afraid to speak up.
  7. Take time to rest. Yes, I know! It’s easier said than done, but really it is so important for both you and baby.
  8. Be preemie proud! Oh so proud! You will see your baby accomplish things that most parents will never experience. Your baby is learning to breath, learning to co-ordinate their suck reflex and is developing right in front of your eyes. How amazing is that?!beautiful
  9. Preemie mum, know this – you are amazing!
  10. Preemie mum, remember this – you are doing great x

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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

Like what you’ve read? Then click the symbols to share on Twitter and Facebook!

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.

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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

Like what you’ve read? Then click the symbols to share on Twitter and Facebook!

Our Top Ten New Year Resolutions!

  1. smallest thingsMore guest blogs! We love hearing your stories and sharing experiences is a great way to
    raise awareness and support other NICU parents. If you’d like to share any part of your story please do get in touch with Catriona at smallestthing@yahoo.com
  2. In 2016 we’ll be focusing on support for parents following neonatal care.
  3. 15,000! Before we hand in our petition in the spring we’re aiming to reach an amazing 15,000 signatures – with your help we can do it! If you haven’t already signed our petition to extend parental leave for families affected by premature birth please do and don’t forget to encourage friends and family to sign too!
  4. To shout about the Smallest Things, raising awareness of a journey that does not end at the NICU door, speaking to hundreds and thousands of people.
  5. Dads Do NICU too! In 2016 we’ll be including 11351121_1605702686352890_8034685534623854660_n (2)more stories about fathers of premature babies and their journeys through neonatal care.
  6. To provide a community space for Smallest Things supporters, professionals and parents on our Facebook page. Our Facebook profile is growing everyday and we hope to continue posting news, stories and information all with the aim of raising awareness.
  7. To take our petition to Parliament!
  8. To speak with health visiting teams, discussing corrected age and the psychological needs of families post NICU.
  9. More MPs! We’ll be speaking to many more MPs this year, asking them to champion the Smallest Things and needs of NICU parents in Parliament.
  10. To set up a national network of volunteers! 2015 was a great year for the Smallest Things, but to make 2016 even bigger we need your help! We will be launching our volunteer’s network in February… watch this space.

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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.

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

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.

TOP TEN! – Supporting Preemie Parents in Hospital

It’s not easy to know how to support a loved one when their baby has been born prematurely. This Top Ten list has been compiled with the help of parents who have all spent time in hospital with babies born too soon.

untitled (4)Meals – hospital food can be expensive and repetitive. You get little time to shop and the last thing you want to do when you get home is cook a meal. Instead of baby grows (which baby won’t be needing for a while), why not give vouchers for food outlets, get some shopping in, or perhaps prepare a meal. Buying healthy snacks which can be taken up to the hospital can help any parent through a long day. Or the idea I liked best – a gift of an envelope with £20 and takeaway menus in it!

images9J46MDT1Childcare – Premature babies often come with little warning. An offer to help out with the school run, to take a siblings out for a day or to babysit in the evening would always be a welcome offer.

imagesDIPRKXTBCompany – Spending time in neonatal intensive care or in special care can be an extraordinarily lonely place. You can become incredibly claustrophobic and you miss the outside world. The routine of having a premature baby makes it difficult to meet friends, so why not offer to meet and go for a coffee at the hospital.

imagesTB6KW868Household chores – I hadn’t even noticed the laundry piling up, not until my mum came and took a load away. As everyday chores pass prem parents by, picking up prescriptions, cutting the grass or taking a load of laundry/ironing home can be an enormous help.

imagesJV8WBVK2Nappies – Premature babies wear ‘micro-nappies’ and despite their micro name they still look huge on small babies! These can only be bought at certain stores and parents can themselves spending precious time going out of their way to buy them. Buying a pack of micro-nappies would be a welcome gift for any prem  parent!

imagesTravel – parking at hospital can add up to become a vast expense to parents of premature babies. Why not offer to drive a friend or relative to/from the hospital one day.

images0VLZGFX3Information giving – Keeping everyone up-to-date of how things are going can be difficult and tiring, particularly when things can change day-to-day, if not hour-by-hour. Offering to be a contact person who will let friends and family know how you are doing, or understanding that your phone calls or messages can not always be answered is important to prem parents.

untitled (4)Premature baby clothes – I had bought just one baby grow before Sam was born and it was for a baby weighing three times his birth weight. Tiny clothes for tiny babies make lovely gifts.

images31X5N2ZQVisiting times – During the first days or weeks parents may be still be in shock and coming to terms with the dramatic arrival of their new baby and may wish to wait until they are more stable before inviting visitors. Being sensitive to this; meeting parents to support them at the hospital whilst not going into the unit can be a good alternative in the first few days. Each special care and neonatal intensive care unit will have their own visiting policy. This may be restricted to relatives only, visiting hours at certain times or who may hold the baby.

untitled (5)Preparing for baby to come home – ‘But I don’t have anything for him’ was my response to the midwife who told me my baby would be here very soon. Parents of premature babies, particularly if the baby is their first, may not have bought the things they need – car seats, buggies, cribs, bottles, clothes, monitors, changing mats, baby baths, mobiles etc – in readiness to come home. Help with getting the bigger items or the little things can make a big difference.

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