Category Archives: Friends & Family

My Top 5 Pieces of Advice for Other NICU Dads

“As a father of a baby born prematurely at only 25 weeks, my partner and I had a big challenge during the 95 days our daughter was in NICU. Read on for my top 5 pieces of advice for other NICU dads on making it the least stressful it can be.”

TIP 1:
The doctors and nurses are there to help so ask questions and try to be as helpful as possible. If there’s red lights flashing and they’re busy then don’t get in the way, but when it’s quiet ask as many questions as possible. Find out what all of the equipment does, what the readings mean on the monitor and what you can do to help. They’ll be happy to teach you.

TIP 2:
Be there for your baby as much as you can. You may not at the time feel that you are doing much good, especially during early days, but just being there and talking to your baby can have incredible benefits. You’ll learn all about your little one and eventually you’ll be able do a lot more like hold him/her, change and feed them and most importantly, bond.

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TIP 3:
Look after each other. We found there were often hugely stressful times and this made it very easy to get frustrated with your other half. Just remember, you’re both going through similar feelings and being there for each other and trying to keep a sense of humour is so important. My partner and I are now stronger than ever and this positivity can be passed onto our baby.

TIP 4:
Rely on friends and family, even if it’s just asking them to cook a meal or give you a lift. Finding time to cook when you’re at the hospital all day is very draining and you need to keep your strength up for your baby. Fortunately ours were there for us a lot. Our family members visited often which was lovely and they were all so supportive with us which is essential during tough times!

TIP 5:
Lastly but no means least; take tonnes of photos and videos! You’ll be able to look back on them every few days and see the differences. Having a baby in NICU is a challenge but look on the bright side; you’ll be able to see your baby evolve from a tiny human being into an amazing baby. Take photos every day, back them up on a hard drive and hopefully in a few years time you’ll be able to show your grown up son or daughter how they started their life on this planet.

Written by James Farina

You can read more about James’ journey through neonatal intensive care at his own website – A Dads NICU Journey 

Will you help raise awareness and share these great tips for other NICU dads? It’s easy, just hit the Twitter & Facebook buttons to SHARE now! 

A – Z of NICU!

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A – Amazing: All premature babies are quite amazing, as are their parents and the staff who care for them 24/7.b

B – Breast Feeding: Establishing breast feeding in the neonatal environment can be tough; but putting a baby born too soon to the breast is also a big moment for many NICU mums who wait days or weeks for the opportunity.

C – Corrected Age: A baby’s age calculated according to their due date rather than their birth date, the date at which milestones and weight should be measured against.d

D – Dates: Birth date, due date, leaving hospital date – dates can be significant for parents of children born prematurely. A birthday will always signify the day your baby arrived early and the lead up to celebrations can be a reflective time for parents.

E – Expressing:  The three hourly cycle of pumping to produce breast milk for your baby in neonatal care.f

F – Family & Friends: There to help and support you, but friends and family may feel helpless or left out. Ask them to help with practical things, such as buying micro-nappies, cooking a meal or helping with childcare. Take advantage of offers of help, but allow time for yourself.

G – Going Home: Sadly not all babies leave hospital, with some born too small or poorly to survive. They are always remembered.  For parents who do bring their babies home from NICU we know they face a host of mixed and often conflicting emotions…. relief, joy, anxious, scared.h The journey rarely ever ends at dischage.

H – How old is your Baby?  The question every parent of a baby born too soon dreads. “They’re six months… but they were born early…so really they are only 3 months”, you hurriedly explain.

I – Incubator: Your baby’s home, keeping them warm and safe from the outside world. A place where you will find a parent sitting, watching and waiting.

jJ – Jealousy: Suddenly there are heavily pregnant women everywhere you look. Proud fathers carefully carrying car seats are around every corner and your Facebook timeline is seemingly full of mums cuddling their newborns whilst you wait anxiously for your first hold.

K – Kangaroo Care:  The act of skin-to-skin care beneficial for both baby and mother.

l'L – Loss: Loss of pregnancy; that final trimester, the lost time to prepare. Loss of that first hold or touch as your baby is taken away to NICU. Loss of a baby to take home, the emptiness that fills you as you leave hospital without them. Lost maternity leave as the weeks are spent beside an incubator. And the loss of a child, for the babies born too soon or too small, who do not come home from NICU.

M – Milk: Those first ‘golden drops’ proudly presented to the NICU nurse in a syringe. Followed by an obsession with numbers – how many mls, how many minutes, how many hours between feeds and expresses.

nN – NICU: An acronym you probably hadn’t heard of before, but now you know every aspect of what the Neonatal Intensive Care Unit means.

O – Overwhelming: Nothing can quite prepare you for parenthood, but for parents of premature babies the planning and expectation of a new arrival is dramatically interrupted. You are thrown into a world of micro-nappies, beeping machines, breathing tubes, feeding tubes, expressing pumps, portholes, picc lines and rigorous hand washing. It is quite simply – overwhelming.

P – Preemie Club: A lifelong membership to a club you would never have wanted to join. Once a preemie parent, always a preemie parent, sharing experiences and feelings only other preemie parents will know.

qQ – Quiet: The neonatal unit is one long continuous wave of sound; bells and buzzers, alarms and machines. Take time outside the unit and outside the hospital to find a quiet space each day.

R – Reason: In 40% of cases there is no known reason for premature labour.

S – SCBU:  Another acronym and a step closer to home. The Special Care Baby Unitt

T – Trauma: The trauma associated with an abrupt end to pregnancy and admission to neonatal intensive care can not be underestimated. Thrown into a medical world of uncertainty and all that it entails has a lasting affect, with many parents desribing symptoms of post traumatic stress disorder after the event.

U – Universal Care: 15 million babies worldwide are born prematurely.

V – Ventilation: To give oxygen to your babies lungs, helping them to breath or taking over their breathing completely.w

W – Wires and Lines: The tangle of wires and lines that cover your tiny baby – cardiac monitors, respiratory monitors, breathing tubes, feeding tubes, peripheral, central and umbilical intravenous lines…

X – Xtra Special – Whatever your child goes onto do, it will always be that little bity more special.

Y – You – Look after yourself.

Z – Z zzzzz: “At least you can go home and get a good nights sleep”… one of the worst things to say to a preemie mum!

z

Love & hope at Christmas time

10882257_1525508937705599_5809473278853052459_nThank you to everyone who shared pictures of their Christmas NICU over the weekend. Your pictures have been shared far and wide helping to raise awareness reaching a larger audience. Do join us on our Facebook page for all the latest news and converstation if you haven’t already done so.

7,000 babies will spend the festive season in neonatal care this year, and we thank the fabulous NHS staff who will take time away from their own families to look after babies born too soon and their parents. Whilst giving thanks we also remember the families who have lost babies born too soon and for whom Christmas may bring added anguish.

We have written before about how to support parents of prem babies in hospital, and our Top Ten list is as important as ever this holiday season. Premmie Babies 101 also have a great article on Including a Sibling in a NICU stay as parents find themselves torn between caring for a child in hospital and a child at home.

Whether you are spending the time in NICU, remembering a loved one or celebrating your Christmas miracle, The Smallest Things wishes you love and hope at Christmas time.

____________12 days of NICU

 

 

 

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.

To share or not to share

congratsI take a quick look at Facebook and I see a timeline that includes pictures of proud parents presenting their newest arrivals. We ‘like’ photos of cute little bundles, post congratulatory messages and send cards as we share in the joy of new mums and dads. And that is how it should be; a joyous occasion, the arrival of a new precious life, one to be treasured and celebrated. Parents of premature babies are just as proud, but for them the reality is very different.

There is no etiquette, no right or wrong way to celebrate the birth of a baby born small and fragile, but sharing the news of a premature birth is often done with caution. When our son was born with little warning at 30 weeks we told just family and close friends. We found it a difficult to convey that our baby was on a ventilator, that he needed a lot of medical support and would be in hospital for weeks or months, when at the same time not wanting to overly worry people. We sent out a message that our little baby needed help with his breathing, that over time he should grow stronger and would eventually come home near his due date – which to us seemed like a life time away.

My husband telephoned my work to let them know I wouldn’t be in the following week (having a very premature baby means you are still often weeks away from going off on maternity leave). My colleagues were excited – ‘wonderful news’ ‘so pleased for you’ ‘can’t wait to meet the baby’ – until he explained the reality of birth at 30 weeks. We found it strange to hear people describing the sudden birth as wonderful news, yet at the same time felt a loss at not being able to celebrate or have others celebrate our new arrival.

facebookOur first post on social media (facebook) was when Sam was five days old, he’d come off the ventilator that afternoon and was now on CPAP (Continuous Positive Airway Pressure). It was a simple message updating our wider circle of friends who had begun to hear the news. We didn’t post any pictures, with photos reserved only for our closest family. I remember a friend gasping when I showed them a picture of Sam aged 6 weeks; he still had his nasogastric tube in. I decided not to show them any earlier photos!

My husband and I spoke at length about sharing photos, particularly when we had a request to include a picture of our new baby in a work newsletter. We talked about waiting until all the breathing tubes had gone, but we were so proud of our little boy taking each day in his stride that we decided to do what other proud parents do and sent in our photo. We don’t know why our picture wasn’t included in the newsletter, but for us it felt like another reminder that having a premature baby In hospital is so very different from what anyone expects.

1st picThree years on we have shared our pictures through the Smallest Things to help raise awareness. Yet three years on the nagging feelings of hurt, loss and jelousy still creep in when I see photos announcing the arrival of new bundles of joy – pictures that spring out at me of babies with chubby rosey cheeks, cradled in their mothers arms. These feelings I know are shared by other parents of babies born too soon and in that and the work we are doing to raise awareness I take comfort.

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.

top ten

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