Tag Archives: Neonatal Intensive Care

Neonatal Intensive Care: A Fathers Journey

My little boy Cameron had to be delivered nearly 2 months early; he had fluid around his lungs and his movements had reduced. We would later come to know he had hydrops fetalis, a life threatening condition.
I wasn’t sure what to expect when I walked into the obstetric theatre, our daughter Beth had been born naturally and was full term and healthy. As well as the usual theatre staff there was a team of 7 from neonatal waiting to look after our boy. The theatre staff were great at keeping us calm and talking us through everything, but I will never forget the deafening silence when Cameron was born. There was no first cry, no tears of joy, no hugs or pictures, just a busy team working to save our son.

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I remember my wife Laura asking me if I could see him, but all I could see through a sea of scrubs was a cracking set of black sideburns – just like his dad!
Cameron couldn’t inflate his lungs so it took them a long time to stabilise him. He was intubated and had chest drains inserted, Laura was ready to go to recovery before Cameron was stable enough to move to NICU.

Walking into NICU that evening was terrifying. Cameron had tubes and wires covering every part of his tiny little body and his alarms were going off continually. The doctors were blunt in that many babies like Cameron don’t make it; he had no figures on survival rates, only that the coming days and weeks would be critical in seeing Cameron respond to treatment and see if the fluid reduced.

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The next day we introduced him to his big sister, it was a hard decision to make, he was so very ill but Beth had been so excited throughout the pregnancy, she needed to meet her brother. I underestimated how difficult it would be, it hit home how sick he was when I took her in. She gave him a little cuddly hedgehog and asked some questions, she took it all in but I struggled to hold it together. She would however become a regular visitor, reading her brother stories, singing him songs and using up all the hand gel! She was a complete ray of sunshine, she said it like it was and easily saw past all the medical equipment.

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I googled hydrops one day for more information, it was very grim reading and I was too scared to google it again so I started googling medical equipment and downloading the manuals, I needed to get a grasp of how they worked. I would take pictures of his ventilator setting every day and became obsessed with his fluid balance and chest drains!

Cameron had so many doctors looking after him, I was desperate for him to get the best care that I took to google again, this time googling his doctors to find out their specialities and expertise! Something that sticks in my mind is one particular doctor who we respected very much, (she saved his life one week!) telling us that Cameron had a fighting spirit in him, that he was most definitely here because he wanted to be. She was so right, Cameron went on to prove this in subsequent admissions to hospital.

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I can honestly say that I learned the true meaning of heartache in NICU. It is a pressure cooker of emotions, complete exhaustion and a constant battle to hold it together when you’re on the verge of completely losing it. But it’s not just about your own baby; you feel the pain of the other parents too. There was a baby next to Cameron that had become really unwell. I didn’t know his parents well but we had shared some chats while sitting by the incubators together. I gave his dad a hug that night and he told me that all they could do now was pray. I’m not religious but I told him that I’d say a prayer for him too. My heart sank the next morning when we saw an empty space where his incubator had been. I think I cried that whole day and night; it brought it home how fragile life is. I still think about that little boy and his family frequently.
I am thankful however for the other parents in the family room, they became such a support, family and friends struggled to understand what we were going through, these people got it without words even being spoken, they were on the rollercoaster too. There was always a chat and a laugh to be had no matter how rough a day you were having, it cheered my days up no end. We still keep in touch with many of the other parents and it’s great to see how our babies are getting on, especially as they all approach their first birthdays.

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I can’t describe the feeling of finally moving upstairs to SCBU. We knew that the next step would be home and we finally felt like parents to Cameron, able to hold him without having to ask, change him and dress him whenever we wanted to and most importantly just able to enjoy him. He was going to be okay, we were soon going to be able to take our boy home!!
Cameron has various health problems and requires future surgeries but he is the happiest wee guy around. He has taught us what life is all about and our family is definitely a much happier, kinder and thankful one for having Cameron in our world.

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With special thanks to NICU dad – Jason Smith, for sharing his journey through neonatal intensive care with The Smallest Things.

If you have a story to share, please contact Catriona at e. smallestthings@yahoo.com

A Dad in NICU: An Anchor for my Wife

I was already a dad to 3 and a 4-time grandfather, but none of that prepared me for what was about to come: I had spent the pregnancy trying to be the calming influence to my wife of 5 years as this was her first time. All had gone pretty well and the pregnancy had been fairly textbook until events took some twists and turns. I won’t expand on that, as that’s another story in itself, but on one Friday night in June 2015 everything went very pear-shaped.

Mel, my wife, had been admitted to hospital in Dumfries. I had been with her all week but needed to go to our old house to finish some work before we put it up for sale. I had spoken to Mel a little earlier in the evening, everything was fine with her and baby, but then at about 11pm that night my phone rang.

I drove the 80 miles from the house to hospital to be at my wife’s side. They were prepping her for an emergency C section when I arrived and the next thing I knew I was wearing scrubs in the operating theatre, together with a load of other similarly dressed people and my wife lying on the table looking really worried.

Orla was delivered a little later and was immediately whisked away not breathing following the trauma of birth. I concentrated on doing what I could to console Mel and keep her as calm as possible. Luckily the drugs they gave her were working with me and a few white lies kept her as calm as could be expected.

What seemed like a lifetime passed as we waited anxiously for news. Various people came in to see Mel, but nobody seemed to have any information on the one thing we needed to know about. There were lots of promises to find out what was happening but very little information materialised. I knew that I had to stay strong and calm for Mel, but inside I was shaking (I deserved an Oscar for my acting masterclass!). I knew that she needed to rest and recover.

Sunrise had come and it was going to be a lovely summer day before we got the knock at the door and a senior looking doctor came looking rather serious. Everything for the next couple of hours became a huge confusing blur as we hugged each other and prayed quietly for our wee baby girl.

Orla was to be transferred to the neonatal intensive care unit (NICU) at the new Southern General hospital in Glasgow as soon as possible; the ambulance was on its way. All we could do was sit around and wait. I had to keep up my charade for Mel’s sake, but couldn’t help but crumble on a few occasions as things got the better of me. We got a brief chance to see Orla before they took her away in the ambulance and it was heaven to be with her and to actually touch her for the very first time.

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I was riding an out of control emotional roller-coaster as I spiraled from fear to anger, to uselessness to hope, and then back to anger again – all the time trying to keep it hidden. Mel, understandably, was a bit of a wreck and needed some sort of anchor to hang onto. I tried to be that anchor.

I arrived in Glasgow on Saturday evening, Mel had followed Orla in an ambulance a couple of hours after her and I had driven home to get stuff for my two precious charges before heading up to Glasgow too. I found Mel on the maternity ward, but not before being told to come back in the morning as visiting times were over! I easily won that confrontation and when I saw Mel I got her into a wheelchair and we went in search of our daughter once again.

We eventually found Orla and it was like the sun had just come out! She looked a good bit better than when we had last seen her and the nurses and doctors were brilliant. The feeling they gave us was one of hope. They showed us so much care and interest and gave us straight-taking, honest answers to our millions of questions. They demonstrated so much professionalism, dedication and empathy over the coming 3 months. Nothing was ever too much trouble and all the staff made me feel so involved in everything to do with Orla and her care.

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It was not all rosy during our time there though. We had some really tough times ahead of us and hard decisions that needed to be made; but together with my fabulous wife we muddled our way through, always guided and supported by the staff, support workers and the Reverend Jim! To quote, they were the best of times, they were the worst of times…and like all families we didn’t always get on or agree, but we did stick together and found a way to move forward and to progress. We felt like we were part of a big, ever-changing family at times, one that had a common goal in getting Orla better.

Daddy loves you

The roller-coaster ride carried on for the next 3 months, but we could see a faint glimmer of light at the end of the tunnel and as each day that passed and every hurdle we overcame the light got a little brighter. Three months and a few days later we left NICU to take our Orla home. I have never been as happy nor have felt as proud as I did carrying her in her baby car seat out through those doors.

Bonding

We have been back to visit NICU on a couple of occasions with Orla for her check-ups at the hospital and I am still amazed by the welcome we get. They all must have amazing memories and genuinely are interested to see one of their many “success stories”.

The whole episode and the time since, now being a stay at home dad has changed me more than expected. Orla continues to flourish and even though she isn’t completely out of the woods so to speak, I feel far better equipped to deal with whatever the future brings.

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It has took me some time to write this story and at first I didn’t feel I even wanted to but it may just spark something in others who find themselves in these shoes so felt it was worthwhile. My biggest issue was letting all the memories come back to me and finding it impossible to keep on typing as the keyboard was in danger of blowing up with the tears I dripped onto it as it still makes me very emotional.

Luckily those tears are as much about joy as sadness.

There are too many people to mention them all individually, they know who they are, but our heartfelt thanks go out to them for making this particular dream come true. We feel blessed to have had them as part of our story.

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Guest blog – with thanks to Martin Butler for sharing his journey through neonatal intensive care with us.

If you have a story you’d like to share please email Catriona at smallestthings@yahoo.com

 

15,000 people have signed!!!

15,000 people have signed because;

✒️… sitting beside an incubator is not be maternity leave
✒️…hooked up to a hospital grade breast pump is not maternity leave
✒️… waiting days, sometimes weeks to hold your baby is not maternity leave
✒️… 40% of NICU mums (compared to 5-10% full-term healthy delivery mums) experience post natal depression
✒️… more than 50% of NICU mums experience symptoms of anxiety and post traumatic stress disorder
✒️… NICU mums need support and time to recover
✒️… the average NICU stay costs families in excess of £2,500
✒️… premature babies develop according to their corrected age, based upon due not birth date
✒️… mothers and babies simply need time to bond together at home
✒️… premature babies are at increased risk of subsequent hospital admissions from otherwise harmless coughs and colds
✒️… mothers often have little choice but to leave the workplace due to premature birth
✒️… visiting your tiny baby everyday in hospital is not maternity leave
✒️… wires, monitors, breathing machines and intensive care is not maternity leave

Smallest Things

…have you signed??

Extending maternity leave for mothers of premature babies will make a difference to the lives of thousands of families and babies born too soon – SIGN NOW!!!  https://t.co/OQWaWZW4g3

A journey through neonatal care

Alexa was born at 25 + 2, weighing 588g on February 19th 2014 delivered by emergency C-section due to severe early onset preeclampsia.

I read those phrases so many times; in Alexa’s notes and on whiteboards and I repeated it so often when we were in hospital. It was what defined her and defined me. In writing it now I realise that it no longer matters. No-one asks me that anymore and I rarely think about it. And what a relief that is.

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Before she was born

I was diagnosed with early onset preeclampsia when I was almost 24 weeks pregnant. Like many other premature baby stories, it was a routine GP appointment that ended at hospital.  My normally unflappable GP looked concerned when she took a urine sample and my blood pressure. Then she called the hospital to say I was on my way and told me to go home and pack my bag. She told me to hurry because I was at risk of a stroke. The next morning the consultants were saying I wouldn’t leave the hospital before the baby was born. I remember thinking ‘but it is February what am I going to do in this bed until June?’  What they meant was that the baby was going to be delivered early.

Eight days later I started violently vomiting every 15 minutes, I had heartburn and I kept going to the loo. My blood pressure soared to 220/I can’t remember the bottom number when someone declared an emergency C-section. Nurses were panicking about cannulas and not being able to find veins. Someone waved a consent form urgently for me to sign. I remember my husband’s gorgeous and somehow calm face in a set of scrubs. I was surprised to hear a radio in the operating room. I fell in love with Amy the anesthetist. And then it was over. My husband saw our daughter. I was wheeled away. I was at risk of a fit and because of this I had to stay in hospital for ten days post-delivery.

A labour ward is hellish when your baby isn’t by your bed. There are happy joyous parents everywhere with healthy full term babies. I was terrified, disorientated and really upset.  I remember a kind of solidarity with the other neonatal unit mums, we would acknowledge each other shuffling baby-less from the labour ward to the neonatal unit and back and someone even managed to joke that the bouncing full term babies on the labour ward looked like seven year olds to us.

Being discharged

I wanted to leave the torture of the labour ward. I just wanted to go home. And once I got the all clear I rushed to pack up my room and got ready to go. But we left the maternity ward without a baby in a car seat. Just me, my husband and my suitcase. And it was too sad. I came home not pregnant anymore but there was no baby. We came home dropped my bags and went straight back to the hospital.

The early days

Alexa was tiny and skinny with dark brown skin. She didn’t look like the cuddly chubby babies we are programmed to expect. She looked weak and frail and was surrounded by a lot of unfamiliar equipment. I was shocked and frightened when I first saw her. At the start I was really confused and didn’t recognise her as my baby, I was afraid to touch her and I even panicked when some weeks later it was suggested I hold her. And I felt such a heavy burden of guilt that I had done this to her; my body had failed her. I had let her down already, before we had even started.

The (incredible) neonatal team at UCLH helped me move passed this and many other crazy and difficult thoughts and helped me find a routine. I would spend my intensive care days by her incubator, watching her, talking to her, singing to her, holding the tiny syringes of milk (she had 1 ml every hour), changing her miniature nappies and loving every tiny inch of her.

Medically

Alexa’s lungs were not good. We were in intensive care for 10 weeks not including a bounce back from a high dependency ward. She was on every breathing machine on the unit. The team tried to take her off the ventilator five times. With the help of steroids she went from the ventilator to lo-flow and then when the steroids finished she went right back to ventilator.

And in March 2014 she got really sick twice. Both times she was paralysed and sedated on an oscillator.  I will never forget how calmly and diligently the consultant led the team on both days, how steadily and respectfully everyone worked to understand what was happening. No-one one raised their voice or lost their temper or apportioned blame. People fetched us stools so we could sit and told us when to eat. I think of both of these days quite often. Primarily with relief, love, joy and gratitude to the team who saved our daughter but I also am still taken aback by how gracefully they managed such impossible pressure, stress and responsibility.

Alexa had Retinopathy of Prematurity and needed laser surgery at Great Ormond Street to prevent blindness.

She got stuck on continuous CPAP for months. There was talk of a tracheostomy. CPAP is really noisy and it blocked her vision, I thought how on earth is she going to develop with this on her face and I was convinced it was going to damage her nose.  It didn’t impact her, her development sessions are always a joy and her nose is perfect.

Alexa June

Emotionally

I would love to say that we handled it gracefully, that we were so strong and composed. But my husband and I were both a mess. I cried and cried and cried. It’s a strange twilight/ no-mans land when you have a premature baby: a) you’re supposed to be pregnant but then b) you are on maternity leave but then c) your baby doesn’t live with you. You wait and wait and wait for life to begin. I think I was jealous of women everywhere; pregnant women, women pushing prams, women with children, women going to work.. I went from being a confident and friendly person to a jittery and scared one who second guessed herself and constantly washed her hands.

People in the hospital used to say that mothers of premature babies go through a grieving process. I dismissed this at the time because Alexa was alive I told myself. And then I read Joan Didion’s ‘The Year of Magical Thinking’ about the death of her husband. She quoted Gerard Manly Hopkins:

‘I wake and feel the fell of dark not day’.

That was exactly how I woke up in those early days. It is a type of grief.

We were in hospital for seven and a half months and over this long course of time the shock, disorientation (and grief) of having a premature baby was replaced by the worry and sadness of being the mum of a sick baby. As she got bigger leaving her every evening got harder and harder. Maternal instinct is visceral and separation from your child is intense. Every night I woke up several times panicked soaked in sweat asking my husband where the baby was. Every night he would calmly say the same thing ‘It’s ok love she’s in Nursery 4, ‘XX’ is the nurse we called before bed and she’s fine’. This night-time ritual made me feel crazy.

And it didn’t stop until about a month after she came home.

The Expressing Room

The ‘expressing room’ was three plain blue chairs lined up in front of three blue expressing machines. It had bright florescent lights, no TV or radio and no privacy. And it saved my sanity. I poured my heart out to women in there and they to me. It was a counselling and therapy room where we willed each other on and told each other we could manage it.

The expressing itself was awful and amazing. A whole world of strangers talk about your ‘milk production’; nurses, consultants, feeding experts, they all talk about it to you, to your husband and to each other. You get over the embarrassment of it pretty quickly. There is not enough milk. Can you make more milk? She has no milk. She has so much milk. And if the milk is pouring out of you it’s a lovely way to focus and feel useful. But if it’s not then the whole thing becomes a very unique type of torture. Every 2-3 hours you hunch over the hideous expressing machine with an empty bottle not filling up. And the babies so desperately need mum’s milk to survive and fight on. There were a lot of tears. I ate everything anyone mentioned might help. I think I drank over 4 litres of water one day (this hurts your bladder A LOT). One Caribbean mum gave me a potion made in homes in Ghana that she got in Brixton and we cooked it up in our Hampstead kitchen. Eventually after 6 weeks of this, I got a prescription – and low and behold ‘mum’s milk’ came pouring out. We filled up our freezer for her.

Through it all the solidarity and strength of the mums in the expressing room kept me going. The support and the laughs. If I listed the jokes they wouldn’t be funny but there were tears of laughter on some days. And other days there were big wet tears of sadness and fear and frustration.

Family life on a neonatal unit

We were in hospital so long we had a lot of the usual baby ‘firsts’ with the neonatal team; a bath, sitting in a bouncer, tummy time,  tasting puree, a walk with Alexa in a pram.  It could have been awkward or strange but the Neonatal team made these moments fun and full of hope that we were able to do them.

Alexa July

I would spend hours with her sleeping on my chest. We read ‘The Wind in the Willows’ and ‘The Velveteen Rabbit’. We sang country songs (the poor nurses..). The hospital play specialist would come and see Alexa and me on Friday afternoons. To quote her, she would help me ‘bring the world to Alexa’. I loved our chats. Amidst the worry and heaviness of having a child in a high dependency unit, she reminded me of the joy of being a parent whose job it is to explain and explore the world with my daughter.

Nurses, consultants and registrars all became an extension of our little family of three. There was so much love in that ward, my heart still stops a bit when I think of it.

Leaving the Neonatal unit

While we were in hospital I developed an unhinged relationship with a pamphlet called ‘the pathway to home’. We never seemed to have it nor were people even mentioning it and the hallways of the hospital seemed lined with smiling parents reading it.  We had been in hospital for six months when it arrived at Alexa’s cot. And then suddenly we were planning for home, what we needed to do, what the hospital needed to do, who was involved, how to get ready. We had a discharge planning meeting with about 14 people giving input. Oxygen was installed in our flat (what?!) and friends sent me baby lists.

We finally left UCLH on a Friday night with our baby (and her oxygen tank) in a car seat. We had made the same journey twice a day for seven and half months to visit her and now she was making the journey with us. The cab driver went via Camden. I remember looking from gorgeous little Alexa and her oxygen tank to the Camden Friday night partyers and being jolted by the juxtaposition of it. I wanted to stick my head out of the cab and shout ‘Have Champagne!!! We’ve been in hospital for SEVEN AND A HALF MONTHS AND WE ARE FINALLY GOING HOME!!!

Early days at home

Champagne on the streets of Camden or no, we were not prepared for what it was like to bring Alexa home. We had become completely institutionalised and used to having a team of nurses and consultants around to help us and answer our questions and concerns. Alexa came home on a feeding tube, on oxygen, and I don’t know how many permutations of her medicine schedule we tried in order to line everything up correctly so that we gave the right gaps for the right medication and had some time for both of us to lie down. The seriousness and responsibility of it was terrifying. Her reflux meant that within 20 minutes of being home she vomited all over our cream carpet in the lounge. (I still smile fondly at that stain).

The winter was hard. We had to be really careful to avoid coughs and colds. And you can’t go to ‘Mini Mozart’ with an oxygen tank. It was lonely. And like any other working woman who has a baby I found it strange being at home a lot. But she was IN OUR FLAT! The joy of having her cot at the bottom of our bed and waking up with her in our room never got tired. And life got easier. The feeding tube came out quite quickly. The medicine reduced and then stopped. Home oxygen can be annoying and things take longer but it is manageable and before I knew it I was slipping the O2 tank onto my back and off to the park answering (with a pained smile..) for the millionth time the nosiness of a stranger who wants to know what happened to the baby.

And then they weaned the oxygen. The first time we took her off for 30 minutes; my husband starting skipping round the flat from room to room with her laughing and shouting ‘look at this, look at this’. It was so easy to move her without the wires and the portable tanks. And we saw those gorgeous little cheeks and face tube free! It was a slow slow wean and when she caught an inevitable bad cold (twice) we went to A&E and back to full time oxygen. But in May 2015 after a sleep study, she came off oxygen completely.

Now

Alexa is now a happy, chubby, curious, joyous toddler. And so we are a happy joyous family of three. Our life is happy and it is healthy.  We do normal things. We go to the playground, she plays with her friends and she sings and dances at bilingual beats on Wednesday afternoons. I have even returned to work.

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And every now and then when I see Alexa doing something ordinary and every day my heart bursts with relief and happiness at the normalness of it and the recognition that the pain and worry of our start is behind us. I look at her and I realise that we made it, the three of us, we have everything and we are happier than I ever thought we could be.

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With the support of her local MP Tulip Siddiq, Lauren is working to change the current UK legislation to make maternity leave longer for mothers of premature babies. 

SIGN NOW!  If you would like to support the campaign to give mothers more time with their premature babies, please SIGN the Smallest Things petition calling upon the Government to  “Extend Maternity Leave for Mothers of Premature Babies”

My missing trimester

People often speak about the things they miss through premature birth and describe a sense of loss. I grieved for my final trimester for a long time after birth and for all that entailed.

What did you miss? What would you add to our list?

  1. Lost – No time to decorate the nursery
  2. I hadn’t even thought about packing a hospital bag
  3. I didn’t get to finish at work, say goodbye to colleagues or begin my maternity leave properly
  4. Nursery furniture, moses baskets and bedding were all bought online; no time to plan, shop or ‘nest’.
  5. No antenatal classes, no NCT, no mummy friends or support.
  6. I missed getting big
  7. Stretch marks that are missing in places where they should have been
  8. Lost – weeks and months of watching my belly grow, feeling my baby move inside
  9. Maternity clothes, bought but never worn
  10. Preparing for the new arrival, no shopping or meals in the freezer
  11. Lost – my final trimester
  12. No chance to make a birthing plan
  13. Lost – my baby whisked away after birth
  14. Missed – a chance to hold him close
  15. I went home empty armed
  16. I was lost and empty
  17. I grieved for the baby that was no longer with me
  18. No congratulations on your new arrival cards
  19. No new born, first cuddles photos to share
  20. Lost – a chance to be a mummy from day one

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NICU and my PTSD

Nothing can really prepare you for parenthood; but for parents of premature babies the time to plan and the anticipation of a new arrival is dramatically interrupted. Plans to decorate the nursery and dreams of holding your baby close for the first time are shattered as shocked and numb you find yourself in the neonatal intensive care unit (NICU).

Neonatal intensive care – a scary sounding place and one you are unlikely to chance upon. As it happened I had worked in neonatal care as a children’s occupational therapist and yet when my own son was born at 30 weeks I found myself lost in a medical world I did not recognise. For eight weeks I visited my baby every day, trying to become a mother in a unit where rows of incubators housed babies at the very edge of life. All around me monitors beeped and alarmed as they seamlessly chimed with the uncertainty of our journey.

Given the nature of NICU – the pain of leaving your fragile baby each day, the feelings of emptiness and grief, the uncertainty and ups and downs, the lines, wires, monitors and alarms, not to mention the security buzzers at the entrance of the unit or the constant rigorous hand washing – it came as no surprise to me that parents who have experienced premature birth are at greater risk of post natal depression, anxiety and post-traumatic stress disorder (PTSD). In fact, it is thought that more than half of mothers are affected by anxiety and PTSD following NICU and approximately 40% (compared to5%-10% of mothers who give birth at full term) develop post natal depression. And yet, despite these statistics, there is little talk of the mental health needs of parents following NICU and the 2015 Baby Report by neonatal charity Bliss highlights the lack of psychological support for parents in hospital.

I can still recall the moment I first felt panicked and sick with PTSD; I was returning to the neonatal unit for a routine 4 week follow up. Walking out of the car park and into the hospital I could hear and feel the sound of my heart pounding in my head. I could hear the beep, beep, beep of monitors and the motion of the ventilator as air filled my son’s lungs. If I closed my eyes all I could see were wires and the mechanical rise and fall of his tiny chest. I felt sick to the bottom of my stomach and although I felt as if my body would completely shut down there was nothing I could do to stop it.

No one warns you about the flash backs and PTSD often presents itself after the acute phase of neonatal care when you are alone. The support network of the hospital can disappear overnight and you are left to wonder how on earth you made it through. Family and friends with good intention assume that the difficult times are behind you and the idea that discharge would be the end of your neonatal journey suddenly seems farcical.

The usual routes where a mother may seek support are often closed to mothers with premature babies. Clinics or parents groups can be out of bounds due to the infection risk to premature lungs and mum and baby groups can lead to a host of well-meaning questions that instead exacerbate negative feelings or bring back painful memories. “The longest hour of my life” is how one mother recently described an NCT group, “I wanted to run and hide” said another. The reality of becoming a mother in NICU is so far removed from the ‘norm’ that mothers become isolated and simply cannot connect with the experiences of other families. Many believe they are alone in their thoughts of loss or anger and remain quiet about the flashbacks or anxiety they experience. On the contrary though, we know that a significant proportion of parents feel this way and I write about my experiences as a NICU mum to raise awareness and to let others know they not alone.

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I hope to see more parents speaking and writing about their experience of life after neonatal care. As a NICU mum PTSD will always be lurking around the corner and it is only by speaking openly and honestly about our journeys that we can raise awareness, educate and call for greater support.

 

 

The Phantom Kick

The phantom kick. Just when you start to have a good few days, days without flashbacks, days without tears, days believing you are a ‘normal’ family, and then it happens again. The phantom kick. People keep telling me it is wind. It’s not. I know what it is and it kills me every time.

I miss the movements so much because it was something I was never meant to experience – they are also the reason my little girl is alive today.

In November 2014, after 3 painful operations to remove severe endometriosis and a total of 25 sub mucosal fibroids we were told that due to the extreme scarring in my womb lining, along with the rapid regrowth of my fibroids the chances of a fertilised egg implanting were around 0.1% We hadn’t really considered or decided if we even wanted a baby until that point, and here we were being told that a surrogate would probably be the sensible choice. We were sent to an adhesion specialist to see what advice he could offer and whether IVF would be worth a shot. In January 2015 I was waiting for day 1 of my cycle so we could begin IVF investigations………day 1 never came! A determined little bunch of cells had made itself comfortable in my scarred lining! Although we were permanently on edge during most of the pregnancy, as well as on an abundance of drugs, as soon as those first movements started it was all so worth it. I could not wait to get snuggled on the sofa each evening, with my hands on my bump feeling and cherishing every head butt, kick and punch.

And so it seemed incredibly cruel that the universe was to bring my cherished pregnancy to an abrupt end. On the 28th July 2015 my baby was quiet. Breakfast, a coffee, lunch, cold water, fizzy drink and laying on my side did not wake her up. 40 minutes after walking through the doors of the hospital I was in theatre, and half an hour later my baby girl was born via crash section at 29+4weeks gestation. Luckily the skilled anaesthetist had managed an incredibly swift epidural while the theatre staff scrubbed in, so I stayed awake. We did not know at the time, but Emma did not breathe for 8 minutes and her pulse was incredibly low. Once she was stable we heard a small whimper, before she was whisked away to the NICU. It sounds crazy to me now, but once we knew she was alive, and once the atmosphere in the theatre changed to that of relief (the radio went on!), I really thought I’d be taking my baby home in the next few days! I had no idea the journey we were about to embark on, and this is coming from a nurse of 15 years!

Emma NICU

Nobody warns you about having a premature baby. As the last in my group of friends to have a baby (and having been a birth partner twice!) I knew all about nightmare births, forceps, meconium, stitches, c-section recovery, breast feeding troubles, yet I knew nothing about premature babies. Surprising really, given that two of my friends had walked their own NICU journey. One of the NICU nurses came in to ask if I had planned to breastfeed while I was still open with my insides showing on the theatre table! We didn’t know! We hadn’t even been to NCT class yet! And that was the beginning of the surreal NICU journey we had suddenly found ourselves on.

I can’t really remember the first time I saw my baby in the NICU, no matter how hard I try. I vaguely remember being told that all her initial scans were normal, and that she had 6 toes! She also had an incredibly swollen leg where they had struggled so much to get her out. It was thought for a small amount of time that she may lose the leg, we didn’t care, we just wanted her to survive. The strongest feeling I remember is that I just didn’t know her. I didn’t know who this tiny foetal like baby was. They kept telling me she was mine, but how could she be? My baby was still inside me. All of my expectations of that ‘huge rush of love’ were among many of my expectations which were now crushed. I felt nothing but shock, fear, guilt and that I had been robbed of my pregnancy. I could not understand why nobody seemed to understand me and how I felt. I kept getting told ‘yes but she’s here and she’s safe.’ I could also not understand why I kept getting cards through the door with ‘congratulations’ adorning the front, when in my head there was nothing to be rejoicing about

Emma with mum and dad

Once out of ITU and in to HDU, and having battled RDS, sepsis, reflux, apneas and bradycardias, we soon fell in to NICU life. Twelve hour NICU days soon became the daily routine of express, feed, cares, consultant round, feed, express, coffee break, feed, express, lunch break, afternoon visiting, express, and then try to go home without my baby yet again. This is perhaps one of the hardest things, to leave your baby in the hospital. It never got easier, not once in 46 days.

Bizarrely on the day we were due to take our baby home, the day we’d spent 7 weeks dreaming of, I was so upset! We had become institutionalised, and this NICU life was our new ‘norm’. The thought of going it alone at home was terrifying! Luckily Emma has made it incredibly easy for us. She is an amazing baby, and each day I am totally in awe of her, and everything she has battled through. I can’t bear it when people say in jest ‘it’s a hard life!’, when they see her sleeping peacefully with a tummy full of milk. Yes it was a hard life for her, and look how amazing she is!

Emma

I don’t think our NICU memory will fade just yet, we are currently battling through our first winter, terrified that she will get a cold bad enough that will hospitalise her, and every milestone reached sees us breathe a huge sigh of relief. I still have my own internal battles to fight too. The flashbacks and negative feelings have reduced slightly, but we still have a way to go. The hospital have been great, and have provided counselling for us so we can work through our feelings. And I hope that sometime soon those phantom kicks will disappear.

Since discovering ‘The Smallest Things’ things are a little easier. Reading the blogs has helped no end, and I love to see the great work that is being done. It makes me quite passionate about prematurity awareness and supporting other NICU mums as best as I can. A colleague of mine has recently had her baby at 23 weeks, and suddenly I knew I could turn my experience in to something positive, by supporting her as much as I can.

NICU makes you a different parent I think, all the small things are indeed small things, not worth getting stressed about. The fact that she breathes, eats, smiles and moves is good enough for us! If she cries through the night, so what?! We are incredibly lucky that she can. If she clings to me all day and won’t be put down, so what?! I have a lot of cuddles to make up for. We continue our life like we did in the NICU, one day at a time, each day is a new blessing and our house is full of love, kisses and incredible gratitude.

Michelle

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If you like to help raise awareness and support other families through neonatal care please do share Michelle’s story – Facebook, Twitter……

If you have your own story to share, contact Catriona at e. smallestthings@yahoo.com

Winnie the Pooh – the day I became a mother

 

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The first time you leave your baby can be a big moment for new mothers; this little person, a new life you have carried, part of you in someone else’s care.

I remember leaving my baby for the first time.

The memories, although hazy through shock and disbelief, are still ever present.

He was only a few hours old and I did not leave him with a trusted family member of friend.

I did not cuddle or kiss him goodbye, knowing that I’d only be gone a short while.

Instead I would be gone until morning time.

 

I held his tiny fingers through the incubator portholes and whispered ‘see you soon’.

I had not held him in my arms and my body ached from labour.

I would leave my tiny baby, born too soon, in the care of strangers, not knowing what the morning would bring.

NICU day 3 | Lines & Wires

I was empty and without my baby to hold.

I was numb and grieving for the baby I had left behind.

 

Neonatal intensive care, a world of medical devises and babies housed in boxes. A place of uncertainty and of up and downs. An environment where you are tested to the limit as you watch your baby fight and grow.

In neonatal intensive care I cared and tried to provide for my baby. Expressing became ingrained as part of my new life and pumped breast milk became like liquid gold.

When the time came I was able to hold him in my arms, but tubes and wires obscured his face and prevented me from holding him close.

I longed to kiss him, to whisper ‘I love you’. My heart ached for the baby I so desperately wanted to hold tight to my chest.

He was in the care of an exceptional medical team and wonderful nurses cared for him 24 hours a day as if he were their own. Their kindness made leaving him a little more bearable each day, but behind the safety and warmth of his incubator I was a mother, but he was not really mine.

For weeks I would ask permission to hold my own baby; on occasions I would be told I was holding him too much.

Nappy changes were done on a strict timetable and feeding was scheduled around charts and numbers.

The unit where my baby slept was behind security doors and rigorous hand washing became the norm.

I cared for my baby in hospital, but he did not feel like mine and I did not feel like a mother.

 

We were unsure of how to celebrate his fragile birth. Cards of congratulations trickled in slowly as we tentatively announced his early arrival.

Finally, we were at home, that first magical night together. I’d been a mother for months, yet now I was on my own!

We held a naming ceremony some weeks later, a way to celebrate a new life, to introduce him to the family and to say ‘He’s here!’

I searched high and low for a quote that would sum up our journey and the way we felt about early starter. I eventually found it –

“Sometimes” said Pooh, “the smallest things take up the most room in our hearts”….

I had become a mother.

smallest things 

 

From one NICU mum to another…

Hello, I’m Francesca, and my little boy is Harry-this is our NICU feeding story:

Harry was born at 28w4d whilst I was on holiday in France, weighing in at 2lb13oz. He had no sucking reflex due to his prematurity, so was enteral tube fed via his mouth on a continuous pump (standard for prems in France) for the first few weeks of his life. When we were transferred to a UK hospital, when he was transferred to a NG tube and was syringe fed every few hours.

harry NICU

During the tube feeding, I expressed using the hospital pumps. This was something I hadn’t really thought about, and something I had to “learn on the job” thanks to language barriers, and a slightly different approach than nurses here would have! In addition to my milk, during our time in France he was also fed on donated breastmilk. This was because the hospital would not accept milk I’d expressed outside of the hospital. Unfortunately due to Harry’s prematurity, he was in a high-dependency hospital over an hour from where I was staying, so there were points I was expressing at night whilst away from Harry, and sadly had to dispose of the milk- very demoralising!

Harry was NG fed until he was ready to be fully established on breastfeeding, which was around five weeks before his due date. We had three full days of breastfeeding at the neonatal unit, to ensure he had completely got the hang of feeding – only then was his NG tube removed. Although I was exclusively breastfeeding, our neonatal department wanted to ensure he could also take a bottle, to ensure we could administer medications that were mixed into expressed milk – we found this less stressful for Harry, rather than syringe administration of medication.

Francesca and Harry

Unfortunately, due to further medical complications, Harry needed to be transferred solely onto a premature baby formula about 6 weeks after leaving neonatal, so our breastfeeding finished rather abruptly. I was quite upset by this and did worry about our bonding, but thanks to all the skin-to-skin care we’d had during our neonatal journey, this was not a problem.

Due to the traumatic birth we had, I suffered PTSD (Post Traumatic Stress Disorder), and have since undergone CBT (Cognitive Behavioural Therapy) and surgery, but thankfully Harry will have no recollection of his interesting start to life. But we will explain his incredible journey to him when he’s older, as we are so proud of our little fighter that we nearly lost. Harry is now a happy, healthy 18 month baby, who loves his food and is completely “normal” in his feeding.

Harry - Feeding

NICU and the neonatal journey is a tough one, and phrases as “you’re lucky you got to meet your baby early” do not help! But from one Mum who has come out of the other side, please hang in there. Be kind to yourself, and make time to recharge wherever you can. You are doing a fantastic job, and you’ve got a strength that keeps you going, that you didn’t even know you possess!

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If you’d like to share your NICU story with The Smallest Things, just drop us a line! Contact Catriona at e. smallestthings@yahoo.com

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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