Tag Archives: Neonatal Intensive Care

No one told me, no one asked me, no one to support me

In hindsight, I should have known, but nothing prepared me for how my world would be tipped upside down after giving birth to my twins at 28 weeks in 2007 – still nothing has!

days before the unexpected premature birth

I wasn’t prepared for the abrupt end to my pregnancy and the finality of the birth. The following days were not how I had imagined they would be when I was a naïve, unsuspecting first-time mum, blissfully preparing the nursery. I remember reading a pregnancy book and how I skipped the pages on Special Care because things like that don’t happen to young, healthy mums like me. How wrong could I have been!

No one spoke to me about the possibility of special care, even though I was carrying twins. No one spoke to me about being a high-risk pregnancy, even though I had swollen up just a week before and had a scan that showed I was carrying twin two very low.  No one mentioned to me that I should start antenatal classes earlier as I was carrying twins and may have a shorter pregnancy. No one told me an awful lot.

As a result, when I did go into labour in the middle of a Monday night at 28 weeks, I was mentally unprepared. After a long labour, twin one arrived by natural delivery and was whisked away by a team of medics, leaving me with a consultant talking to his team about how twin two was in distress – no one spoke to me. 

Isabelle

Next thing, I was whisked into theatre for an emergency C -section and woke to a photo at my bed side of a tiny doll that turned out to be my Isobel; and to a partner who was as shell-shocked as me but with no babies to hold in my arms.  

Of course, I would go on to develop severe post-natal PTSD, anxiety and depression as we battled with our daughters, Imogen and Isobel, through ICU, CPAPs, brain bleeds, oxygen deprivation and so much more that I can’t even remember as my brain has blocked it out.  No one asked me if I needed help, as I sat with my head in my arms sobbing at the side of their incubators. The consultant didn’t know how tiny he made me feel when he turned to me and said ‘ I think you realise what you’ve done now and how serious this is’; still to this day I don’t know what that meant, but it cut through me. Still no one mentioned emotional support for me.

Imogen

10 weeks later, my girls came home, I was overjoyed! However, I had no support group, no Facebook group, no accommodation to live in with my daughters during their 10 week stay in SCBU, all that had made me desperately unhappy, isolated, depressed and extremely confused by how I felt.

9 months later, after home oxygen, nurse visits, physio appointments and feeling trapped in a world that I hadn’t planned, I finally spoke up. I went to see my GP to tell them that I was struggling and was referred for talking therapy. 3 months later, I was still waiting.  So, I contacted PALS to express my thanks for the care that my daughters had received, but to condemn their lack of support for me. That got the ball rolling and 10 months after the trauma or premature birth, finally, my long journey on the road to managing my mental health demons got underway.

Now, 11 years later, my twins are well. They are healthy, they are happy, active, smart and wonderful. But as I write this today, I still cry. I still struggle to be happy for my friends as they have normal births and normal maternity leave. I still struggle with anxiety, to the point where it has affected my social life and career. I still mourn for the loss of the ‘normal’ experience and have never had any more children out of fear that it will happen all over again. I still can’t forget, and I still feel angry about how little emotional support there was for me. However, I am also strong, and my experience has also helped to make sure that families of premature babies now get timely help when their children are born too early or very ill. I tell my story, not to make you feel down or for sympathy; I tell it because I am proud that I used my experience to fight for change.  Now, I know that support is getting better. I know that there are support groups, fast-track counselling, charities that are offering counselling sessions and I also know that my experience will now become a rarity. I can never change what happened and the impact that it all had upon my mental health, but I can change the future and I can use my voice to encourage others who are struggling with mental health problems following premature birth to demand the help that they deserve.

Isobel and Imogen are now 11 years old

With thanks to Louisa Owen for sharing her story and highlighting the mental health needs and emotional impact of premature birth.

To find out more about the mental health needs of parents following neonatal intensive care and how to support families, please see our ‘After Neonatal Intensive Care’ Report.

 

You’re not being silly, if you’re worried get checked out – Guest Blog

One thing I never knew when I was pregnant was that I could have a premature baby.

It just wasn’t something that I knew about and it wasn’t something that I knew happened to people…. until now.

I was 30 weeks pregnant and I had been experiencing a pain under my rib cage on the right side of my body. It was about 1:30am and I got up, took some painkillers and tried to go back to sleep. I was still experiencing some pain, but it wasn’t excruciatingly sore, more like a dull pain, so I just got on with it. I thought it was maybe just the baby kicking me in the ribs.

Throughout the morning it was much the same, just a dull pain, nothing more. By lunch time it was still there and got a little more intense, but nothing that I was crippling over in pain. I decided to call the midwives at my local hospital for some advise. Due to my gestation they asked if I could come in just to get checked over.

When we arrived I was hooked up to a machine to measure my contractions. Whenever I was experiencing the pain it wasn’t showing as a contraction and I felt a bit silly being there at that point. As they didn’t really know the cause of the problem the midwife called for a doctor. He examined me and told me that I was 3cm dilated!

Time was a blur from then on.

No one can ever prepare you for the mix of emotions that you experience at that point. Sadness, worry, fear, confusion.

The doctor was trying to arrange transport, either an ambulance or a helicopter to transfer me to a hospital with better facilities for a premature baby.

My waters decided to break though and we no longer had the option of being transferred. I was to deliver where I was.

A doctor came and explained that there could be a chance the baby might not survive, particularly as they didn’t know the reason to why I was delivering early, and we would be best to prepare ourselves for that.

A few hours later, my baby was born weighing 3lbs 9oz.

I got to look at him for about 10 seconds before he was put in an incubator and taken away. He was perfect, just tiny.

He was born at 7:30pm, but we weren’t allowed to go and see him until 11:00pm.

It was the longest wait of our lives. We were just in a room not knowing what was going on. Was he okay? Was he going to survive?

When we got to go and see him it was very difficult to watch. A doctor was stood over his incubator manually pumping air into his mouth to help him regulate his breathing.

Our son got transferred to another hospital at 1am and we were discharged the following morning and headed up to be with him.

He progressed every single day, and amazed us all. He moved onto a C-PAP within a couple of days and started off by taking 1ml of milk per hour! He had episodes of jaundice, but they didn’t last very long before he was back to normal.

It was hard to look at your baby lying in an incubator with the tiniest nappy I’d ever seen, with all sorts of wires going into him.

I’ll also never forget the beeping from the machines around him, I can sometimes still hear them.

The nurses were amazing, and really are a credit to the hospitals. I actually don’t think they get as much credit as they should. And I will never forget when our son stopped breathing for around 20 seconds…. (but it felt like a lifetime for us.) My partner and I were panicking and not knowing what to do, the nurse on the other hand was so calm and just held him, talked to him and tickled his feet and he started breathing again! I couldn’t believe it, I was so amazed. I think this was the moment when we knew he was going to be cheeky!

One thing that I never got to experience was the moment you get to hold your baby straight after giving birth. It was so difficult, you kind of feel disconnected to your newborn in a way. We had to wait 6 days before we could actually hold our son.

The moment was amazing, and I will remember it forever, but I just wish it could have been different. We had to be so careful with him and could only hold him sitting right next to the incubator as he was attached to so many different machines.

I would say that one of the hardest parts of having a premature baby is when you had to leave them in the hospital and drive home without them. I would look over my shoulder into the back seats and just wish he was there. It just felt unreal, or that your baby didn’t exist, because he should be with you wherever you were.

It annoys me when someone says “you’re lucky, at least your birth was easy and that you didn’t have to push out a 10lb baby!”

Trust me, I was not lucky. I would much rather of pushed out a 10lb healthy baby than have a traumatic birth and an ill baby.

So, I just want to raise awareness that if you’re in doubt about anything, go and get you and your baby checked over to prevent delivering early. I think back to that day all the time… what if I just got through the pain and stayed at home, what if I gave birth in the car on the way to the hospital… the list is endless.

I actually experienced the same pain under my rib cage about a week after giving birth. This time it was a very excruciating pain that wouldn’t go away. I went to A&E and I had pancreatitis, brought on by gallstones so I had to have my gallbladder removed. We think this was the reason why our son was born early as the doctors couldn’t find any other reason.

Our son spent a total of 6 weeks in hospital and is now a healthy 20 month old who is meeting all his milestones, apart from he has a delay with his speech. He is an amazing little boy and we are so thankful to have him in our lives.

Guest post by Robyn McIntyre

Please help raise awareness by sharing on Facebook and Twitter just click on the buttons now!

From The Bottom of our Hearts – Thank You

Olli has come home!

Mum to premature baby, born at just 28 weeks, has written a letter to the neonatal nurses and doctors who cared for her premature baby at Burnley General Hospital. Lynsey, who spent every day of their 82 day journey through neonatal care visiting her tiny son, has shared with The Smallest Things her moving letter to the professionals involved in their special care.

Dear NICU Nurses and Doctors,

You have no idea how much you mean to us, or how you will always hold a very special place in our hearts. The love, respect, and admiration that we have for you can compete with no one.
You took care of our baby, when we, his parents didn’t know how. We didn’t know how to change his nappy without moving his lines. We didn’t know how to pick him up to change his bedding. We didn’t know what medication went where, or how to run the machines that were keeping him alive.

We tried our best, we really did. But he was so sick, and we were so scared. We were thrust into the NICU hours after his surprise early delivery. The first time we saw our baby he was in an incubator, and hooked up to more machines than we could count. You told us how we could touch him without stimulating him too much. You had tissues ready because you knew that we would cry. You encouraged us to interact with him even though you knew we were frightened too, you let us bath him, you let us change his nappy and didn’t get mad when we fumbled through three nappies and bed sheets because our little boy kept peeing before we could get the new nappy on. You let us change his nose cannula stickers, even though we both knew you could do it 10 times faster. We never felt more like his parents than at those times. You let us take home NICU souvenirs like his heart monitor leads and his first tiny dummy. When he opened his eyes you helped us get a picture of them. You answered every single phone call we made. You listened to us asking the same questions over and over and made us feel welcome being by his bedside day after day. You comforted us while we cried and encouraged us to believe he would come home.


You gave him, and us, every piece of your strength, day in and day out, for weeks. You did everything in your power and more to keep him alive. We feel like ‘Thank You’ isn’t enough, but it’s all we have to give you. You’re amazing, and you do things no one else can. So from the bottom of our hearts, thank you.

Lots of Love
Lynsey and Daniel & his big brother Eli xxx

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.

3344700a

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 very different Mother’s Day

On Mother’s Day last year Susannah Tucker should have been 23 weeks’ pregnant. Instead, she was watching her son fight for his life in NICU, wondering if this would be the only Mother’s Day they spent together

Mother’s Day 2012: painful, following an early miscarriage the previous December.
Mother’s Day 2013: cautiously excited, as we made our way through the first trimester of our boy.

Mother’s Day 2014: a day with my husband and son, blue painted foot and hand prints, photo memories.
Mother’s Day 2015: starting to hope for a brother or sister for our eldest.
Mother’s Day 2016: our life turned upside down the day before.

On 5 March 2016 our little boy Alec was born at 23+5 weeks’ gestation, weighing 1lb 9oz (709g). Whisked away from us following his lengthy resuscitation, we had followed on after the ambulance who had transferred him to Addenbrooke’s.

And now he was there, fighting for his life.

Love and care 
During the early hours of March 6, Mother’s Day, I was wheeled around from the ward to see my tiny, tiny boy. I chatted with the nurse Felicity (who became a very favourite and special nurse) and she brought out a little bag and handed it to me. Inside were a few items selected especially for Mother’s Day – a notebook, hand cream, pen etc, and, most special of all, a small ceramic heart with some tiny footprints on it.

Susannah with her gift from Alec, aged one day, on Mother’s Day in NICU

‘Are these Alec’s footprints?’ I asked hesitantly, barely able to believe that they could be. Felicity replied that they were. Overwhelmed by the love and care of the NICU staff, to produce this special keepsake for all the mums that day, all I could think was how amazing it was that I’d had the opportunity to have the footprints at only a day old, not something I’d done with my older boy Evan. I was also acutely aware that this ceramic heart was going to be something I’d treasure forever, but potentially in a box of painful memories.

Alec’s footprints – a special Mother’s Day keepsake from the amazing nurses

Family time
Our older boy Evan (who was two and a half at the time) came to visit Alec for the first time that day and I had both my little boys together. Again, I couldn’t shake from my mind that this was likely to be my only Mother’s Day with both of them. It was a special special time and Evan was so interested in his little brother. Fast forward a year and they adore each other.

Some other special mothers came to see us and meet Alec that day too – both our mums (who didn’t get cards from us, sorry!) were seeing their new grandson, yet feeling overwhelmed with how to support us – it was happening to their children. My sister came to meet Alec, pregnant at roughly the same gestation (her son eventually born on Alec’s due date) – every time she visited I could see in her eyes the awareness that the baby growing inside her was a similar size and shape, and the overwhelming feeling of needing to keep him tucked up safely inside.

First feed
I couldn’t hold Alec. I couldn’t touch him or kiss him. I couldn’t look into his little eyes (they were still fused shut). I was too nervous to change his nappy. However, on that first Mother’s Day, I was able to feed him my milk through a tube for the first time. I was fulfilling something in my role as his mummy. A different Mother’s Day, but one I’ll remember forever.

Returning to ‘normal’
We recently celebrated Alec’s first birthday on the beach and it was a very special day. This year we’ll also be celebrating my mother-in-law’s 60th birthday on Mother’s Day and I’m looking forward to a relaxing, low-key day. After all the drama and fear of NICU, we’re craving some ‘normal’ family time, enjoying the simple pleasure of being together.

 

Susannah and Alec on the beach celebrating his first birthday earlier this month

With special thanks to Susannah for sharing her story for Mothers Day. 

You can read more about Susannah’s journey with Alec on her blog here

Would like to help The Smallest Things raise awareness of neonatal care? Like what you’ve read? The please use the Facebook and Twitter buttons to SHARE this post!

 

 

 

 

My first Mothers’ Day: in NICU

Second in our special series of Mothers’ Day blogs, Becca Hilton tells The Smallest Things why her first Mothers’ Day as a mum will stay with her forever

I was expecting my first Mothers’ Day as a mum to be full of love, comfort and joy. Yet the harsh reality was very different. Yes, I did feel the love but I was somewhat lacking in the comfort and joy as my darling little boy Max was in NICU [Neonatal Intensive Care Unit].

The day was not only emotional because it was Mothers’ Day, but it was also my birthday!

2016 was the first year my birthday had fallen on Mothers’ Day and that did make me wonder… Maybe Max had come early for that very reason, so that I could spend those two very special occasions with him?

Not how it was meant to be

Waking up on that morning I felt excited but also disappointed. I couldn’t wait to go and see my little soldier but I couldn’t hold back the sorrow knowing that it wasn’t how it was meant to be. My husband had organised dinner for us that evening but it didn’t feel right. I didn’t feel like celebrating either occasion.

When I arrived at the hospital that morning it felt like just another day but when I saw Max he was in an open incubator for the first time! Previously he had been in a closed incubator with two portholes I had to open to touch him or change his nappy. It was the best Mothers’ Day/birthday gift I could have asked for. Taped to his incubator was a lovely poster one of the nurses had made. It had Max’s face inside a flower wishing me a ‘Happy Mothers’ Day’. My heart melted.

A day of mixed emotions

All I wanted to do was give Max a big squeeze but of course I couldn’t – he was too delicate. Experiencing Mothers’ Day while your child is in NICU is a strange feeling. It’s hard to describe as I had so many mixed emotions.

On this day I spent my usual seven hours or so with Max; soaking up every minute with him. Every smile, every cuddle and even all the windy pops (he’s always been rather gassy!). I didn’t want to go home, I didn’t want to leave him.. on that day more so than ever.

Overall I was just so glad and felt blessed that Max was here at all and my first Mothers’ Day/birthday with him was the most special time and will stay with me forever.

So as I approach my second Mothers’ Day I reflect back on and remember my first… and look forward to many, many more! I hope that yours is filled with everything that you expect and more.

Top 5 Preemie Blogs 2016!

This year we’ve published blogs on just about all aspects of having a premature baby in neonatal intensive care – take a look at our most read blogs this year!

5. TOP TEN! | What not to say to a preemie mum 

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. [Read full post here]

4. Why Don’t We Speak About Premature Birth?

How do you share these experiences with other new mums? There really is no comparrion in our journeys. When you do describe some of your time in neonatal care that invariably leads to questions; sometimes well-meaning, but often insensitive questions – “Is your baby normal now?” is a question that has stayed with me as well as the assistant in a well know department store who shouted across the shop, beckoning her colleague to “come and have a look at this preemie baby!”… [Read full post here]

3. Look but Don’t Touch – Life After Neonatal Care

From the day I felt more confident to take Luca out (around his due date), I’ve faced a constant stream of people trying to touch my baby or asking personal questions. For some reason, a teeny baby seems to be public property. [Read full post here]

2. 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.

1. Lost – No time to decorate the nursery

2. I hadn’t even thought about packing a hospital bag…. [Read full post here]


And the most read post in 2016…
1. PTSD: The Hidden Cost of NICU 

NICU remains a mysterious and unknown place to those who have not lived it and for that reason perhaps it isn’t immediately obvious to see a link between time in NICU and PTSD. Raising awareness and speaking honestly about our experience and the true realities of neonatal care is therefore crucial:

Of the uncertainly and unknown. The panic that sets in when your baby is not in their incubator space when you arrive, have they been moved – is the news good of bad?

Of the physical pain at having to leave your new born everyday. The feelings of emptiness and loss.

Of the ups and downs; the lines, wires, monitors and alarms.

Of the hot, close, claustrophobic environment.

The security buzzers at the entrance and of the constant rigorous hand washing.

Feeling watched as you attend to the simplest of cares such as changing a nappy – of struggling with the simplest of cares such as changing a nappy!

And the feelings of guilt, jealousy, grief and loss that go hand-in-hand and in stark contrast to the feelings of joy, anticipation and hope.

I will always be a NICU mum; and PTSD will always be lurking around the corner.

PTSD: The Hidden Cost of NICU [Read the full post here]

Like the posts you’ve read? Would like to help us raise awareness of premature birth and beyond? Then use the Facebook and Twitter buttons to SHARE! 

Born Premature: A Families Momentous Christmas 

Christmas Day 2013 was pretty momentous for us. Our son Samuel was born at 2pm, 12 weeks early, weighing 2lbs 3oz.

I was not expecting to be on an operating table delivering our son at the time most people are tucking into their Christmas dinner!
The week before Christmas, at 27 weeks pregnant, I ended up in hospital after feeling unwell in the night with a sharp pain in my ribs. I had a general feeling of something being wrong. The doctors conducted tests and concluded it was preeclampsia. They told me it was a serious condition elevating blood pressure, requiring bed rest, restricting the babys growth, and that the only way to cure it was to deliver our baby.


To cut a long story short, I was admitted to hospital indefinitely.

On Christmas Eve I was transferred to another hospital where they had more specialist care and more beds available in the neonatal intensive care unit.

And then on Christmas morning I was told that I was too sick to keep going. They had to perform an emergency c-section to save me and my baby.

The most unforgettable moment for me was when they sent a pediatrician to tell us all about the risks the baby would face being born so prematurely. It felt as though he stood there for an age, listing condition after condition that we had never heard of, that could potentially kill our child.

The operation went well and our Christmas miracle arrived. It was fitting that he was born to the Bon Jovi song ‘Livin’ on a Prayer!’

We had asked friends and family for prayers and believed that is what pulled us through! We briefly saw him being held up and making a little cry before he was rushed off to NNU. I didn’t even get to hold my baby.

Later on I was able to go and see my son. I feel sad to say I barely remember it. I was on a lot of medication and still recovering. I remember having to scrub my hands with hospital soap and lots of scary looking machines everywhere. It was overwhelming, and honestly, frightening. I looked at this tiny little thing in the incubator and thought ‘that’s my baby.’

We were congratulated by everyone on our arrival, but I felt that this was inappropriate when we didn’t even know if our son would survive.


Boxing day was the worst for me. The medication was wearing off and the reality was sinking in. A doctor came to take some bloods from him. It was the first time I heard my son cry properly. I couldn’t hold him and comfort him. I felt useless. I had a mental break that night after my family left. I was on the observation unit still, surrounded by new mums with their babies. There was one mother who refused to pick up and hold her crying baby. That broke me. I would have given anything to hold my baby, but he was fighting for his life, in another ward.

Samuel had a few more scares over the next few days. At one point they thought he had NEC because he didn’t produce a poo for a few days. I can honestly say I’ve never been more overjoyed to hear news of someone doing a poo! There was also talk of a blood transfusion, luckily he didn’t need that, and he was actually off his ventilator within 2 days, which was miraculous.

I got to hold Samuel on New Years Eve. It was the most magical thing I have ever experienced. There aren’t words that can accurately describe the range of emotions I felt at that moment.


Eventually Samuel stabilised enough so that on the 6th January he was able to be transferred by ambulance to our local hospital. He had a few more scares with infections and breathing issues, but eventually he was able to come home a week before his due date on March 10th.

Looking at my happy healthy (almost!) 3 year old now, I can hardly believe he came through all that. I am so proud of him and this experience has changed my life in many ways. I appreciate life so much more, I don’t take things for granted as much!


We celebrate every milestone, and achievement no matter how small. I don’t know if we will have any more children in future because of the risks, but for now, I can say I am blessed and happy with my Christmas miracle.


Christmas will never be the same for us again that’s for sure! For anyone going through Christmas in NNU, I just want to say celebrate the tiniest of achievements and never doubt how strong you and your baby are. Having a premamture baby has been the most miraculous experience of my life.

The Twelve Days of NICU

The Twelve Days of NICU

🎶 On the 1st Day of NICU, the hospital gave to me…. 🎶

A Tiny, Little, Early baby!

On the 2nd Day of NICU, the hospital gave to me…. 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 3rd Day of NICU, the hospital gave to me…. 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 4th Day of NICU, the hospital gave to me…. 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 5th Day of NICU, the hospital gave to me…. 5 FIRST HOLDS!!!! 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 6th Day of NICU, the hospital gave to me…. 6 Jaundice Lights, 5 FIRST HOLDS!!!! 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 7th Day of NICU, the hospital gave to me…. 7 Kangaroo Cuddles,6 Jaundice Lights, 5 FIRST HOLDS!!!! 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 8th Day of NICU, the hospital gave to me…. 8 Mums Expressing, 7 Kangaroo Cuddles, 6 Jaundice Lights, 5 FIRST HOLDS!!!! 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 9th Day of NICU, the hospital gave to me…. 9 Monitors Beeping, 8 Mums Expressing, 7 Kangaroo Cuddles, 6 Jaundice Lights, 5 FIRST HOLDS!!!! 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 10th Day of NICU, the hospital gave to me…. 10 weeks early, 9 Monitors Beeping, 8 Mums Expressing, 7 Kangaroo Cuddles, 6 Jaundice Lights, 5 FIRST HOLDS!!!! 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

On the 11th Day of NICUthe hospital gave to me…. 11 NICU Nurses, 10 weeks early, 9 Monitors Beeping, 8 Mums Expressing, 7 Kangaroo Cuddles, 6 Jaundice Lights, 5 FIRST HOLDS!!!! 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!
On the 12th Day of NICU, the hospital gave to me…. 12 Micro Nappies, 11 NICU Nurses, 10 weeks early, 9 Monitors Beeping, 8 Mums Expressing, 7 Kangaroo Cuddles, 6 Jaundice Lights, 5 FIRST HOLDS!!! 4 Breathing Tubes, 3 Incubators, 2 Tiny Feet and a Tiny, Little, Early Baby!

🎶🎶🎶🎶🎶🎶🎶🎶

Like our 12 Days of NICU? – Why not use the Facebook and and Twitter buttons to share! 

Christmas in NICU: An Interview with Preemie Parents Louise & Ginette

Can you tell us a little bit about you and your family?

Ginette and I both work for the Emergency Service and we would see each other out in the local area whilst at work. I always thought she was a fantastic Police Officer and had the most wonderful smile, but with me working on an Ambulance and both of us working shift patterns it was difficult to ask her out. So four years ago we got together on a works night out and have never been apart since. 

I fell pregnant with a sperm donation on the second attempt. We had just bought our first home together and were planning on completing a total renovation before our baby was due in March 2016. The house had no gas or electric and the kitchen and bathroom were not in a fit state, but of course we were anticipating plenty of time to get it ready for our family…

Sophie was born very premature, can you tell us a bit about her early arrival?

I went for my 28 week midwife appointment but felt poorly and thought I had a chest infection at the time. I almost didn’t go to the appointment due to feeling so ill and lethargic. My blood pressure was taken as well as a urine sample; both registered as concerning. The midwife immediately booked us into the maternity day unit for a review. Within an hour we were whisked upstairs to theatre as I had been diagnosed with pre-eclampsia and told that our baby was coming now.

Sophie was born at 16:06 by emergency caesarian section and there wasn’t enough time for steroids due to the severity of my pre-eclampsia and the struggles to manage my blood pressure.

Sophie weighed just 957g at birth, however she cried immediately which was the most reassuring thing in the circumstances. We were able to see her for a few seconds but then she was taken straight to Neonatal Intensive Care where she was extubated 2 hours later. I unfortunately was unable to see her again for the next 36 hours as I was taken to the High Dependency Unit to recover.


Ginette was amazing and a rock as she managed to stay strong enough to look after us both. She even waited to allow me to be the first to hold Sophie; staying by our sides until I was well enough to visit her. My parents flew down from Scotland on the 18th December to be with us due to the severity of my illness, how early Sophie had been born and to give Ginette some support.


How did seeing Sophie in neonatal care make you feel?

Seeing Sophie in Neonatal Care was terrifying even though with my medical training and background I knew she was lucky to be alive. This same training and knowledge meant I had an increased awareness of everything that could still go wrong. 

She looked like a tiny baby bird; tubes, wires, alarms beeping, encased in a glass bubble that seemed impenetrable. Every time I saw Sophie, I felt a massive surge of love but it was tinged with a desire to defend and protect her. At times I felt as if the medical treatment was a mechanical process and I wanted to be able to cuddle and hold her instead of sitting by the side of her incubator whilst the nurses and doctors had to complete the necessary tests and procedures. 


After being discharged from the High Dependency Unit I was placed on the post-natal ward which was isolating and frustrating as all the other mothers had their babies with them. Overhearing babies crying as well as conversations between mothers comparing how small their babies were, when they were 5 or 6lbs. Listening to parents moaning about how little sleep they were getting when I was so desperate to be with my baby, to be able to hear her cry only because she was hungry rather than being in pain. One mother asked about the photo and hand and feet prints that had been taken as she wanted one and I had to explain that she wouldn’t get one as she had her baby with her. She didn’t realize that this was the only connection I had to Sophie at my bedside and I found it terribly difficult to remain calm as this could potentially be one of the only connections if things went wrong.


Sophie spent her first Christmas in hospital, what was Christmas Day like on the unit?

On Christmas Eve, whilst still on the post-natal unit, carol singers came round to sing for the patients however I found this upsetting and I locked myself in my room so as not to be disturbed. I understood that Christmas was happening for everyone else and I was aware that I had not sent any Christmas cards or bought presents for Ginette or my family due to Sophie’s early arrival however those momentary feelings of guilt were overwhelmed by my concerns and worries and my mind was solely focused on my baby, 3 floors below.


Christmas Day on the unit was an interesting event. The atmosphere was surreal; there were only 3 babies in the unit one of which was Sophie and when we arrived in the morning, the nurses had decorated the incubators and the rooms with Christmas decorations as well as provided stockings with beautiful clothes and toys for the babies. Their kindness and generosity was wonderful and we were very emotional and grateful. There was Christmas music playing and one of the nurses was wearing a Christmas tree dress. Ginette and I had worn our Christmas jumpers with flashing lights although having our Christmas lunch in the hospital canteen did dampen the spirit. We tried to make the best of it as my parents had left their other grandchildren in Scotland to be with us but the lunch wasn’t very good and being confined to a hospital was depressing.

At shift changeover, the atmosphere completely changed. The Christmas music stopped and the atmosphere went back to being more of a medical focus which we found difficult. They did move the baby from the Special Care Unit into our room so it meant that all of the parents were together however it didn’t make it any easier. We were extremely lucky though and received messages of support and love from across the world, wishing us a Merry Christmas from all faiths.

A year later, how is Sophie doing and what are your memories of your time in hospital?

Nearly a year on and Sophie is amazing, so healthy and determined. She is trying to crawl, knows what she wants to do and is so clever by clapping and waving at friends. She spends a lot of time with friends that we made on the unit as there are 3 families who were in hospital with us whom we formed close bonds with. 


Looking at these children, it is sometimes hard to remember they were all born so early however the memories of being in hospital never leave you and every now and again something will jog a specific memory that can leave you almost paralyzed.The memory of leaving Sophie in hospital when Ginette took me home will never leave me nor will the feeling of walking down the corridor from the unit in the evening – it got longer every day. Being woken in the night by an alarm clock to express milk instead of by a crying baby and knowing that you can’t give that milk straight to your baby is indescribable. Leaving our friends behind when Sophie was discharged was really hard; the conflicting feelings of being relieved we were taking her home as well as the fear of finally being solely responsible for her care and the guilt in saying goodbye to the other parents and babies who had to stay behind.


I do remember the good times as well; making some of the best friends I’ve had in life, laughing with friends as I pretended to drink breast milk, crying over spilt breast milk after knocking over the bottle that I had spent what seemed like forever expressing, cuddling and singing to Sophie, giving her first bath. Every time we arrived on the unit we would count the babies, making sure our friends were still there although there were plenty of times that the babies had all been moved around.

What does your first Christmas at home together mean to you and how will you be spending it?

Christmas at home with Sophie and Ginette is a dream come true. I am so excited that our little family will be together and my family from Scotland are all coming down to join us to make a large gathering to celebrate. 

Thousands of families will be visiting tiny babies in hospital this Christmas – what advice would you give to them?

The advice I would give to families is to remember that Christmas is more than a day and to remind extended families to not put additional pressure on parents who need to visit their babies in hospital. Your baby won’t remain tiny for long so treasure every moment as much as you can.


And lastly, is there anything else you’d like to add?

Our little Sophie Snowflake who is becoming more like a Sophie Snowstorm is more loved each and every day.


With special thanks to Louise for sharing their NICU Christmas story. 
If you have a story you’d like to share please email Catriona at smallestthings@yahoo.com 

Premature Babies in the News! 

This week marked the end of World Prematurity Month 2016. 

A month where charities, organisations and parents come together to raise awareness of premature birth and it was a bumper month for The Smallest Things!


In fact, over the last 8 weeks The Smallest Things and our supporters have rarely been out of the news!

You may have seen Karen Stirrat and her triplets on BBC Breakfast or STV discussing maternity leave.  

Or Michelle Caton-Richards featured in the Sun speaking bravely about her experiences of PTSD following premature birth. 

The media interest around the #NotMatLeave campaign has been strong and we were delighted to see the Prematurity Bill receiving cross-party support from MPs when it was introduced to The House of Commons. 

Ahead of the debate Smallest Things founder Catriona Ogilvy was interviewed by BBC Breakfast, BBC London, Sky News, ITV News and Channel 5 News, coverage which was well received. 

Catriona also spent time on Radio BBC 4’s Womens Hour alongside Bliss CEO Caroline Davey to debate the issue of maternity leave and later discussed premature birth with Vanessa Feltz on BBC Radio London. 


The #NotMatLeave petition, which now has over 125,000 signatures, has also featured in the Evening Standard, The Sun, The MirrorThe Times and The Huffiongton Post – not bad for a campaign entirely run by volunteers! 

World Prematurity Month may be over for another year, but The Smallest Things are committed to raising awareness 365 days a year – watch this space for more media interest soon! 

From a Dad’s Perspective 

This beautiful poem was written and shared with us by NICU dad Paul Lindsey. 

From A Dads Perspective 

It’s easy to forget how many times you’ve done this walk.
Down this long white sterile corridor

Sometimes too tired to talk.

The gentle hum of machinery recycling the air.

Past doors and rooms, this one’s not yours,

Don’t look, it’s private stuff in there.

Still walking, walking to the room feels like you’ve walked a mile. 

A tired nurse with a trolley walks past but still she gives a smile.

Not far to go, pick up the pace, it’s now two rooms away.

The corridor refuses to acknowledge night or day.

Now here’s your room, you stop to look, face up against the glass.

You always fear the worst right here, heart is beating fast.

Open the door, come on, go in, what is it that you fear?

You know damn well replies your mind, let’s make that very clear.

Breathing deep you steel yourself and walk into the room.

The bright monitor displays glow softly in the gloom.

You walk up to the plastic case, smile, and softly say ‘its daddy’

And right on cue, I swear they know, the monitor bongs a Brady.

The nurse comes over, has a look and says, ‘dont worry he’s ok’

Then pulls out all the charts and says how he’s been today.

You understand the language, the medical terminology.

Of intubation, ventilation of PAPS both B and C.

Hi-Flo, Lo-Flo, Blood gases, and all the rest, you even understand aspirates and the endercolitis test.

You watch the gently sleeping shape of the miracle that is yours.

The tiny fingers grip the wires that are threaded through the doors.

The monitor it bongs again, you no longer jump as much.

It won’t do it for ever, he’s getting better you tell your mind as such.

Transfusions, blood tests, checks and scans.

The list goes on and on.

You await the day, to steal away your miracle and be gone.

Now anyone who’s reading this will understand my every word.

Of this journey we’ve all had to take and how it must be heard.

How the strength of all our miracles is something to behold.

The fortitude, the fighting spirit of a premmie three days old.

The stress, the worry, in the end turns everyones hearts glad.

It’s worth it just to hear one whispered word… ‘Dad’

Paul Lindsay

The Uncertainly of NICU – Joshua’s Story

My son Joshua was born at 28 weeks, on Mother’s Day this year. 

It was a complete surprise! I had been suffering with pains a few days before but was assured that this was just Braxton Hicks. Then in the early hours of the morning of 6th March I woke up bleeding heavily. We raced to the hospital with just my maternity notes and were told I was already 3cm dilated and that the baby would be born very soon. I had suffered a placental abruption.

My husband and I could not believe it and I was in complete denial, truly believing I would surely be sent home soon and told to rest. But sure enough, 5 hours later he came. He weight 3 pounds. I had been given steroids to help his lungs develop but given the speed of delivery there was not much time for them to take effect. Joshua had to be resuscitated at birth as his lungs were so under developed. The transport team arrived very quickly to take him to a higher tier hospital and there begun a 7 week stay in hospital for us. 


The first 24 hours were probably the hardest. No one was willing or able to give us any assurance that Joshua would be ok. I felt incredibly guilty and stupid that I had not realised anything was wrong sooner. I tortured myself by going over every detail of the week before, trying to pin point a cause. I couldn’t accept that it was not my fault in some way. We also just didn’t know what to expect. Thankfully his first brain scan was clear and when they took him off the ventilator he was able to breath by himself with some high flow. He had a heart murmur but we were assured this would most likely close by itself. Finally we felt able to hope for a good outcome. We started to feel very lucky.
After 4 days we could finally hold him, it was magical. 

Joshua did very well during his time in NICU. He was even breathing in air by the time he got moved to SCBU. However, it was in SCBU that the usual bradicardia episodes and Apnea really begun. Some days his alarm would go off every 20 minutes. It really felt like he was going backwards. He was put back into oxygen and for a while it felt like every day it was turned up another notch and I couldn’t see an end to it. His weight was increasing and he had reached the hospital discharge guidelines of 35 weeks but he was still oxygen dependant. We were told he may go home on oxygen. 

I had been expressing milk for him and I wanted to breastfeed him when I got home. This was a challenge! Trying to convince a tiny baby who had been tube fed for 7 weeks to work for their food felt like an impossible task and it nearly broke me emotionally. However, with determination, perseverance and the help of an excellent SCBU nurse, who dedicated most of her entire shift to helping me, he finally started feeding. I was able to feed him for 7 months when I got home, until he decided food was far more exciting!

Thankfully, during the last week of our stay, Joshua decided he was not going to go home on oxygen and just stopped having Apnea’s one day. We were told this could happen, I just never imagined it actually would. Again, we felt so lucky and relieved. 


We had a great outcome with Joshua. Much better than we ever imagined at the start. He is a happy little 8 month old baby now, enjoying baby sensory, baby yoga and play groups. 

The first winter is hitting us hard. He is in about his 11th virus already. However, he never lets this get him down and always has a cheeky smile on his face. 

All of the staff in the 3 hospitals were exceptional. We had stays in st Peter’s Chertsy, William Harvey Ashford and QEQM Margate. They encouraged us to get involved with Joshua’s care as much as possible and this is what got us through the experience. In the first 24 hours I felt like a spare part – I didn’t think there was anything I could do for him and I was scared to get too attached. When I did start expressing milk, changing nappies, top and tailing and kangaroo care, I really felt like a mum to Joshua and that I was helping him in some way. 


A nurse told me during one of my most down days that I know my baby better than any doctor or nurse and that I can help by being his advocate and his voice. This was one of the best pieces of advice I have ever been given.


With thanks to Louise for sharing her story of premature birth – a true NICU ride of ups and downs!

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

Like what you’ve read? Would like to help us raise awareness of neonatal care and beyond? Then Please Share via the Facebook and Twitter links! 

My NICU Warrior

Guest post, by Tania, sharing her story to raise awareness through World Prematurity Month.

Our beautiful boy was born 11 weeks early on the 7th August 2016 weighing  a tiny  2lb 2. A week earlier I was abroad myself and my husband was out working in the middle east. Thank goodness I listened to my gut instinct and went to get checked at the hospital. I’d had reduced movements over a few days to none at all, so when I called the hospital they told me to come in straight away. I just knew something wasn’t right, little did I know what was to come. Within 20 minutes of me going in my little boy was delivered via emergency c section. Hearing those words “we have to deliver your baby now” at 29 weeks just didn’t sink in. I saw the colour drain from my husbands face as he said I’ll make phone calls to the family. Surprisingly I was very calm as I knew me being stressed wouldn’t help my baby but inside I was terrified, frightened and unaware of what was going to happen to my baby.

nicu-baby-vent-blog

The hardest part for me wasn’t all the doctors or nurses using me like a pin cushion, but the fact of not being able to hold my baby. After delivery he was whisked away. My husband was able to cut the cord and briefly saw him before he was taken to NICU.  I wasn’t able to see him for at least 12hrs after I delivered him as I had an epidural and I had to wait for that to subside.

Having a baby is suppose to be a joyous occasion and of course we we’re over the moon that we had created this little life…but it wasn’t a joyous occasion, we were supposed to be holding our baby and cooing over him, but instead I was placed on a post natal  ward listening to and seeing mothers with their new-borns whilst my baby was in intensive care fighting for his life in an incubator. The first time I saw him I couldn’t help but blame myself – was it something I did wrong? The one thing I’m suppose to do is to care and protect and to a mother, but that was taken away from me. It felt so unfair our baby wasn’t in our hands but instead being cared for by those in the neonatal unit. The only thing in my control and that was helping him to grow was expressing breast milk. I would be in the feeding room constantly expressing milk to be put away in a freezer to give at a later date.

nicu-baby-blog

Each day we would go and see him. We would sit and watch him and over time we started hitting milestones – our first cuddle with all the wires constant beeping and noise of the high flow and everything else. It was a whirlwind of emotions, gradually our little warrior slowly came off each medical device and we moved in to high dependency. He was so strong and so determined which spurred us on to remain strong; if he could do it then so could we. After weeks of being in intensive care and high dependency we were able to move to the SCBU. I was so excited there I could actually feel like his mum and do the things that a mum is suppose to do for him.

nicu-pic-blog

On Oct 3rd 2016 we were able to take our little warrior home and we we’re so excited. He is still having constant check ups with the neonatal team but he has done incredibly well. No-one truly understands how you feel or what has happened unless you’ve been through it. If anything has taught us how to remain strong in the most difficult of times and to never plan anything – he really is our special little boy.

Tarnia Lewis

nicu-mum-blog

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

Like Tarnia’s Story? Would like to help us raise awareness? Then please share on Facebook, Twitter – far and wide!

My Superhero Preemie Powers

Tomorrow my eldest son will turn five.

He has been busy planning his Superhero themed party with great excitement!

And this year’s theme seems pretty apt for my Samuel Superstar.

 

I was 29 weeks pregnant this time exactly five years ago.

I was just starting to think about cots and buggies, cribs and baby grows.

I’d booked onto my antenatal classes, still weeks away, and was yet to confirm my last day at work.

 

This time exactly 5 years ago I felt a sudden panic – I wasn’t ready!

‘You’ve still got 10 weeks to go’ my colleagues told me as I began to fret about baby grows and nappies.

Yet I still felt a sense of urgency – perhaps my nesting instincts kicked in.

Despite this, I could have no idea what was to happen the very next day.

 

Having a premature baby sends you into a wild journey of uncertainty, shock and disbelief.

My son was born just hours after my waters had broken at home.

It didn’t seem real.

 

The room was filled with doctors, nurses and midwives as they attempted to resuscitate our tiny baby for six long minutes.

An alien looking capsule was bought into the room and our son was whisked away.

I was numb.

Just as quickly as the room had filled with people, quite suddenly we were alone.

I’d become a mum for the very first time,

but there were no cries of joy, no words of congratulations and I had no baby to hold.

 

This is how I became a mother, 5 years ago.

 

Becoming a parent to a baby born too soon;

having your baby taken away to neonatal intensive care, is one the hardest things a parent will ever have to do.

Saying goodbye to your tiny baby, leaving them alone in their incubator as you head home empty is perhaps even harder.

 

The NICU journey is tough, the effects of which cannot be underestimated and stay with you long after bringing your baby home.

But the NICU journey can also be special….

beautiful

I witnessed my superstar as he took his first breaths without the support of a ventilator, and I was overcome with pride.

I watched in wonder as he learned how to co-ordinate the feeding reflex, (usually learnt within the womb) and saw as his micro nappies began to fit his tiny body.

We spent hours and hours together in kangaroo cuddles as I tried to block out the sounds around me,

And his strength for someone so tiny amazed me every day.

 

Now, five years on, I remember just how far we have come.

He is desperate to be a real superhero, asking me every day how he can get special powers like Superman or Spider-man.

Ideally he would like to be able to swing on webs or fly through the sky,

But to me he is Samuel Superstar, and I think he’s pretty amazing already!

smallest things

download

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

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

download

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!

GPs & Health Visitors; please recognise the mental health needs of NICU parents!

Every year 80,000 babies are born in the UK requiring specialist neonatal intensive care.

Few parents anticipate this traumatic start to parenthood and the journey through neonatal care is often one of uncertainly, pain and loss. Thrown into a world where incubators house the most fragile of babies, where rows of medical devises beep and alarm and where life support machines offer hope, it is no wonder that parents describe this journey as an emotional roller-coaster ride.

“You must have been so strong” I was told after bringing my premature baby home after 2 months in neonatal care. The truth is I wasn’t strong, I did what I had to do;  and now that I was finally home with my baby I was emotionally shattered.

Studies suggest that 40% of mothers experience post-natal depression (PND) following NICU (compared to 5-10% of mothers delivering healthy babies at full term) and that more than half experience symptoms of anxiety and post-traumatic stress disorder (PSTD). Any yet, each year, thousands of women are let down by the primary health care provision they receive.

General Practitioners and Health Visitors, those who meet mothers in the first few weeks after baby comes home, are in a unique position to make a difference. They must have the skills, knowledge and understanding however, to identify parents in need following neonatal care.

The Smallest Things, campaigning for premature babies and beyond, therefore calls upon The Nursing and Midwifery Council, The Institute of Health Visiting, and the Royal College of General Practitioners to ensure that their members are fully trained to recognise and act upon the specific mental health needs of parents following NICU.

With 4 out of 10 mothers experiencing PND after NICU it is vital that maternal mental health is taken seriously and that appropriate support and timely onward referrals to community mental health teams where needed are made without delay.

download GPs and Health Visitors, please recognise the mental health needs of NICU parents!

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.


download

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!

The agony of NICU: A fathers journey

At our baby boys 20 week scan we got the shattering news that our unborn baby had a Congenital Diaphramic hernia (CDH) which came with a devastating 50/50 chance of survival. I remember just seeing my wife Joni’s face; absolutely heartbroken and gutted. We have another son, Lucas, who was 4 at the time with which Joni had a fantastic pregnancy. I managed to convince Joni enjoy the rest of her pregnancy the way she did with our first born, and she did. I honestly believe if she wasn’t as strong as she had been then Davis wouldn’t be here today. 
The day Davis was born should have been one of the happiest days of our lives, but instead we had to watch our baby boy be whisked away to the side whilst he was intubated and paralysed. After nearly 45 minutes of tears and agonising uncertainty, the 15 strong team of doctors, nurses and surgeons finally stabilised him enough to move him to the neonatal intensive care unit (NICU). 
Once on NICU Davis’ battle had only just begun. He had survived birth, but his condition was critical and he was being assessed minute to minute. I can’t recall how many times we had to watch helplessly as our baby boy nearly died time and time again.

ecmo

He had only been in our lives for 12 hours when we got the dreaded news he wasn’t going to make it, not unless he went onto a machine called an ECMO – a heart and lung bypass machine – which required surgery to install into his main artery and vein. Whilst on ECMO though the problems kept coming and we watched as he overcame internal bleeding and fluid in his body resulting in chest drains and 2 ECMO circuit changes (more agonising surgery).

The longest you can stay on ECMO is 3 weeks, so after 2 weeks they decided to trial Davis off it. To our anguish he didn’t cope. We were gutted. 

I always asked the doctors and nurses about a million questions a day and knew exactly what all the screens, monitors and numbers meant and where he should have been. That was my way of dealing with it. The nurses and doctors were second to none, but their faces that day said a thousand words when Davis trial off ECMO failed. They didn’t think he would make it as his odds of survival had now been slashed considerably.

Davis wasn’t finished though and he started to turn a corner. His stats looked slightly better, not great but maybe enough to have the strength to come off ECMO successfully, and perhaps strong enough to have the lifesaving surgery needed to repair his diaphragm and to move his organs out his chest cavity where they had grown in the womb, and in doing so had pushed his heart to the side and had stopped one of his lungs from growing.

WIRES

Davis came off ECMO and received his surgery, with which came more fatality risks. It took surgeons 3 attempts to repair his diaphragm and by now 4 weeks had passed and Davis was still in his induced coma. At this point in our journey Davis should have started to recover, but instead of hope and repair he had punctured his good lung. I thought he was a goner this time. I thought how can he possibly take any more? But he did, recovering from his punctured lung he was then wiped out by an infection that would have floored a grown man. Our baby boy was strong.

After everything that has been thrown at him he started to go from strength to strength and after 8 weeks we finally got to hold our boy. I can’t begin to say how we felt. It was so emotional.

After that the medical team began to reduce his meds to bring him out his induced coma. It was a nervous wait as he had never opened his eyes before and the sense of sight may cause stress resulting in another punctured lung. For once he reacted well and we saw our baby boys eyes for the first time in nearly 3 months!

DAVIS

Five and a half long months in the NICU saw us stuck in a bubble where you forget that there is an outside world. We were very fortunate to have had and have met so many wonderful and strong people and babies. The nurses and doctors don’t get enough credit for what they do in there. They make you feel welcome, safe and treat you like a human being. Mel, Martin, Mark, Lisa, Laura, Jason, Paige, Ross, Jacqueline and John are just some of the now close friends that we had the honour of sharing the NICU bubble with. I am so thankful to Billie and Fran (Joni’s parents) who stood by us every single day and gave us so much help and support.

FAMILY

But I would never have got through this horrible time without my 2 rocks my wife Joni Kerr and my superstar son Lucas Kerr.

Thank you all for all your support.

You are my world now.

BOYS

With thanks to Alex Kerr for sharing his story through neonatal intensive care.

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

A POEM – To all Those NICU First Time Dads

A POEM – To all those NICU first time dads

By Samuel Wilson

 

To all those NICU first time dads,

Your journey will be tough

You’ll cry and laugh and probably yell

‘why can’t I wake up from this hell?’

This nightmare I feel trapped inside…

This fear filled incubated ride.

 

Where life and death lock horns each day

Where you dread the words consultants say

Yet yearn to hear, you need to try

To understand, to reconcile.

‘Why her? Why him? Why us…WHY ME?

Why can’t this nightmare cease to be?’

Yet…

 

Despite the bleeping sounds and lights

Where fluorescent bulbs merge days and nights

In spite of vital readings dropping

And pale blue lips and small hearts stopping.

 

Even with the daily resuscitations

And crash teams sprinting from nurses stations

 

Even with the phototherapy and scans

And long lines, CPAP, feeding plans Through NG, NJ tubes so frail,

 

This tiny girl, her skin so pale

 

And hydrocephalus and drains

From in her spine to ease her pains

Of swelling brains, please stop…no more.

Those words: IVH Grade 4

 

To all those NICU first time dads:

 

Despite this, all of this you’ll smile

And find the strength to reconcile

Those darkest times with future hopes

Of climbing frames and skipping ropes

And realise that markers change

And joyous moments mean so much more,

Where cooing smiles and kicking limbs

Mean more than they ever would before.

 

She fought so hard

To be with you:

Shouldn’t you show the same fight too?

 

Dig deep and go the extra length

And find the will and find the strength

To show the care and love they crave

They’ve already shown how to be brave

 

Consider how your wife has been,

And how she’s fed and nursed and cleaned

Your little child through day and night

And pushed through fear and hurt and fright

 

Take courage from each other here

And share a laugh and share a tear

And soon perhaps just share a beer

And take a trip out to Ikea

And do those normal things each year

That new dads do without the fear

As the pain will pass, it fades away,

With every hour, with every day

Just the wonder of your child will stay.

 

Be strong, for both your child & wife

Enjoy your special, wondrous life.

 

Copyright 2016

Samuel Wilson

 

dads