Supporting Bliss & Their Mothers Day Appeal

Mother’s Day. For me it is a day of mixed emotions. On one hand im still mourning the loss of my own Mum three years ago. Whilst on the other hand, I’m remembering how lucky I am to have brought two amazing little boys into the world who I love beyond all words. On Mother’s day I want nothing more than to kick back and enjoy my day with them.

For some Mummy’s out there, they won’t be so lucky this year. For them, Mother’s Day won’t be what they ever thought it would be. Some are sat by an incubator looking through it, looking at their baby, their world and wishing, hoping that they could touch them, hold them, be a Mummy to them. Its even more heart breaking to know that there are some mourning the loss of their baby. For these Mummy’s this must be one of the hardest days of all.

My youngest little boy Bruiser was born 10-weeks premature and spent 28 days on the NNU, the first two weeks of his life, he spent fighting for his life. He was so poorly, nobody thought he would make it. Those days were the most frightening days of our lives and that pain and heart ache will never leave me.

bliss mothers day appeal

Bruiser did get better though and it was the life saving care of the doctors and nurses on the NNU that helped him through it. It was the care and support we received from the staff on the NNU that helped us through the most traumatic experience of our lives.

Bliss for over 35 years have been giving this life saving care and support to both the babies and their families. Without the generous support of donations a lot of what they do would not be possible and so many of those babies would not be here today, Bruiser included.

It pains me to think back to Bruisers birth and those first few weeks of life. It pains me to think that there are Mummy’s going through that on Mother’s Day. A day when they should be able to celebrate.

This year I have decided that I am going to donate what would ordinarily be spent on cards, flowers, wine, chocolates for me, to Bliss to help them continue doing what they do best. I am supporting Bliss’ Mother’s Day Appeal. On Mother’s Day I will get to hold my babies, cuddle them, kiss them, tickle them and laugh and giggle with them. Isn’t that the most precious gift of all?

Please help make this Mother’s Day amazing – and make your donation to Bliss today.

Mothercare has kindly agreed to match gifts made to the Mother’s Day appeal up to a limit of £10,000. So, for example, a £20 donation from you would be turned into £40 – this could provide more parents with the information to help them understand what is happening to their baby at a critical time. A £40 donation from you would be turned into £80 – this could support more Bliss Nurses, who can help anxious parents struggling to cope as their precious baby fights for survival. A £75 donation from you would be turned into £150 – this could support vital research that could transform the future for premature and sick babies everywhere.

bliss mothers day appeal

Every penny WILL make a difference.

Click here to make your donation to Bliss’ Mother’s Day appeal now. I have…

bliss mothers day appeal

P.s. Make your donation for even further… don’t forget gift aid! 

 

The Impossible Hug

Have you seen the wonderful video Bliss have produced to mark World Prematurity Day? 

It’s such a simple video but yet it speaks a thousand words, stirs up a million emotions and pulls on every heart string. You see, for the 15 million babies born prematurely across the whole world each year, this is the heart ache experienced by those parents. They cant hug their babies for days, weeks, some even months! Can you even begin to imagine how that feels?

Hugs are something that we all take for granted, especially those first hugs with our new-born babies.

I remember when Wriggler was born, he was placed onto me straight away, I got immediate skin to skin contact, he was cleaned and swaddled and given straight back to me to hold and cuddle. I didn’t want to let him go for even a second.

When Bruiser was born however, it couldn’t have been anymore different. He was delivered very early at 31 weeks and it was an emergency c-section. I didn’t even get to see him, never mind hug him. He was so poorly that he was whisked away to the NICU where the doctors spent the next 48 hours trying to stabilise him. When I did eventually get to see him something like half a day later, I wasnt even allowed to touch him. All I could do was sit next to his incubator and talk to him and look at him… that first hug felt like it was a life time away.

During the days that followed his birth, I got some contact. I got to hold his tiny fingers and tiny toes. I got to put my hand on his head. But because he was ventilated, I wasn’t able to do much more than that. I couldn’t even do his cares because his skin was so very fragile and sensitive. The nurses were great though and they showed me how to touch him and how to comfort him without causing him any pain through two hand-sized holes of the incubator that surrounded him.

(facebook status 29.Jan.2010 3.am)

“I’ve just shared a magical moment with Bruiser. I can’t cuddle you or hold you close to me, but I can scoop you up in both hands while the nurse changes your cot sheet cos you wee’d on it while mummy changed your 2nd poopy nappy of the night!”

I‘ll never forget the day I got my hug though. Bruiser was 5 days old. The day preceding it he had been taken off the ventilator and was now breathing on cpap. He had also done his first wee (this was HUGE, it meant his internal organs which were in failure were now showing signs of functioning) and he had his first taste of my liquid gold through a tube into his tummy (which made him do his first poopy nappy that night). I went into the NICU that day to do Bruisers morning cares (clean his face, eyes and mouth, change his nappy). His nurse that day had a little more in store for me…

1st mummy cuddles

My 1st Hug

In that moment my life was perfect. The previous 5 days seemed but a blur. Bruiser still had a long way to go but, it made me realise that the impossible is possible, you just have to believe!

You can get involved in Bliss’s Impossible Hug campaign for World Prematurity Day by sharing a photo of you, your friends and family and little ones giving a hug on their Facebook, twitter and Pinterest, or email your photos to mediateam@bliss.org.uk and they’ll share them on their special World Prematurity Day Flickr page.

Do it for all the families across the whole world that can’t share a hug with their babies.

and… Breathe

Wednesday 27th January 2010

My 4 day old baby was on the NICU having been removed at 31wks into my pregnancy due to suffering a massive fetomaternal haemorrhage. For 3 days we had watched and waited and prayed for him to make it through each precious minute, each hour, each day. He was heavily sedated and on a ventilator.

and breathe

We hadn’t cuddled him yet. We weren’t even allowed to touch him as we were advised it was causing him pain. Although he was over the worst, we knew he wasnt out of the woods yet. Every day was a milestone.

and breathe

I was still recovering from the c-section. Because I was so determined to spend as much of my time on the NICU with my little Bruiser, I was refraining from taking a lot of my pain relief as it was knocking me out. Every step hurt to take. But, it didn’t matter. Every 3 hours day and night I expressed my liquid gold in the hope that Bruiser would eventually get the benefit of it. Every 4 hours day and night I made sure I was there for his ‘cares’ to be done. The rest of the time I just sat with him looking at him, watching him, talking to him.

Just like the previous two mornings, I had woke up from a very restless, painful nights sleep and I needed to attach the breast pump for my 3-hourly express. This particular morning was different though… only I didn’t know it yet!

I made myself a cuppa before sitting down to express while I watched GMTV and caught up on texts, emails and facebook messages from family and friends offering their love and support. I called it my social media morning hug.

When id finished expressing, I got cleaned up and had some breakfast. I then made my way onto the NICU to store my milk in the freezer. I then went to go into the ICU as I always did every time id expressed, even in the middle of the night. Unfortunately I couldn’t go into the room as the Doctors were doing their rounds. One of the nurses told me to give it an hour and I should be able to see Bruiser then.

While I waited in my room, Hubby arrived for the day. Eventually a nurse came through and told we could go through to see Bruiser.

We cleaned our hands, then walked into the NICU and went straight up to Bruiser’s incubator and said ‘good morning sweetheart’.

He looked different this morning and it took a moment for us both to register what it was… Our brave little soldier had been taken of his ventilator during the night. He was now breathing on CPAP.

and breathe

This day turned into a Triple Whammy of Milestones for Bruiser… He came off the Ventilator. He did his first wee. He had some of my liquid gold!

#magicmoments

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World Prematurity Day ~ Our Story and What It Means To Us – Part One

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Saturday 23rd January 2010. A normal day. I was 31+1 into my pregnancy with our second little boy. Everything was going brilliantly. We were about to spend the day with Wriggler our 3yr old son and his friends and their mummy’s for a play-date. Little did we know that it was going to turn out being the worst weekend of our entire lives.

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It was 6pm in the evening and I was starting to become very worried about my baby not moving. We had spent all afternoon out and I hadn’t felt him move even once. I knew his movement pattern to heart and I just knew something wasn’t right. I called the maternity unit at our hospital and they told me to come in. Hubby stayed home with Wriggler as it was getting towards his bedtime. I shakily drove to the hospital in tears hoping and praying everything would be okay but, deep down something was telling me it was really serious.

When I arrived, a midwife took all the details, checked my notes and got me hooked up to the monitors and left me for ten minutes. She came back to check on me and I immediately saw the concern etched across her face when she looked at my baby’s heart monitor trace.  She double checked the monitors were positioned correctly on my bump and pressed the buzzer for assistance. Another midwife arrived and again the concern was immediately apparent in her face when she saw the monitor trace. One of them then explained that my baby’s heart beat trace wasn’t normal and showed signs of being in great distress. She showed me what she would expect to see in a normal heart beat trace against what she was seeing from my baby’s trace.  She said that she was going to call for the consultant to come and check me and my baby out and advised that she would be admitting me from this moment on. Hubby was then called and I was given a steroid injection which the midwife explained was to mature my baby’s lungs should they need to deliver him. When the consultant arrived she immediately agreed that my baby needed delivering as soon as possible.

My world was now beginning to fall apart and there was nothing I could do.

In the next few hours, it quickly became apparent that our hospital and all the maternity units in our local area did not have a Neonatal Intensive Care bed for my baby when he was born. Eventually though an ambulance arrived and I was very, very quickly taken to the Calderdale Royal Hospital in Halifax, an hours drive away.

On arrival I was again hooked up to monitors to check my baby and admitted. Within 30 minutes the room was filled with consultants, midwives and a neonatal paediatrician who advised that the monitors were picking up a very weak distressed heart beat from our baby which suggested to them that he was very very poorly. They further explained that it was also showing (although I couldn’t feel them) contractions from me which said that my body was preparing for a miscarriage. They said a normal delivery wasn’t an option as our baby’s heat beat was dropping to below 50 beats whenever a contraction was happening and as such, he wouldn’t survive a normal delivery. They were going to deliver our baby by emergency c-section immediately.  Ten minutes later, we were both dressed in scrubs and i was being given a spinal block.

At 03.59 on Sunday 24th January, 9weeks early, Bruiser was born weighing 4lb 3oz.

He was immediately taken away to the other side of the room where the neonatal team took over. They didn’t show him to us, not a glimpse. All we could do was watch from afar as they all got to work on him. He didn’t cry, moan or whimper. There was no movement from him, he did nothing. The midwife assigned to me kept reassuring us that everything was normal and that they would try to stabilise him and get him breathing. Eventually after what seemed like forever, above all the talking and commotion I heard the smallest faintest whimper when they got him breathing but that was it, he was immediately ventilated. The midwife attempted to take Hubby over to see him but they refused to let him. Hubby saw though that he looked very poorly, ‘he looked dead’ were his words. He was the purest white transparent colour, something that Hubby wishes he hadn’t seen and an imagine that still haunts him today. Bruiser was very quickly taken away to the Neonatal Intensive Care Unit. I got a very very brief glimpse through my tear filled eyes as they rushed him past me and out of the theatre.

The next 5 hours went by in a blur. They did loads of tests on me to help them establish what had happened. We didn’t know what was happening. We couldn’t go and see him. We just waited and waited for news. I was absolutely devastated but I couldn’t even cry, I just felt numb. It was a nightmare that I just couldn’t wake up from.

Eventually we got a message that we could go to see him. I was only just regaining feeling back in my lower body, and so Hubby went alone. It was a very brief visit as he came back with the news that Bruiser’s Doctor wanted to speak with us both and was coming to see us. He told us that Bruiser was fighting for his life. They were struggling to stabilise him. He told us that Bruiser had suffered a massive feto-maternal haemorrhage. He was born with a blood count of 2.2 (the lowest on record we later found out). They had given him several blood transfusions. He was ventilated and sedated. He said that ‘IF’ he survived (which he put at less than 10%) there was every possibility that he would; worst case scenario; be mentally retarded and best case; have cerebral palsy. He had already suffered a significant brain injury due to lack of oxygen while he was still my womb and a bleed on the brain after birth. Acidity was building up in his blood stream (acidemia), as his internal organs primarily his liver and Kidneys were in failure. They had done everything that could possibly be done.  It was put to us that we should seriously consider withdrawing his life support and prepare for the worst.

In that moment my world stopped. I hadn’t even seen my baby boy and they wanted me, us, to decide if we wanted to keep him alive.

But of course we did. We couldn’t give up on him so soon. He hadn’t been in the world more than 6 hours. It was a decision that we didn’t even need to discuss. We both knew in that instant what the other wanted to do. We chose to keep Bruiser alive.

I demanded to see Bruiser at this point and my wish was immediately granted. I was still laid flat in bed, but we were taken through to the NICU.

I’ll never forget the moment I laid eyes on him. He was so very very small. But, he had 10 fingers 10 toes, 2 eyes and a nose. I didn’t see all the machines and wires and tubes keeping him alive. I didn’t hear all the different beeps they were making, I didn’t even see the incubator. I just saw Bruiser, our baby, our little boy… and he was Perfect.

We barely had a moment with him before reality hit us like a ton of bricks… loud beeping kicked in, nurses and Dr’s came running in, someone began to take me and Hubby away from his bedside and that was when I noticed that they were pressing on his little chest again and again, attempting to bring him back to life… again.

Back in our room, we prayed. Never in our lives had we prayed but we prayed, we hoped and we cried like our lives depended on it. Good news eventually came that their attempts to restart his heart had been successful. It was at this moment I said that I would like Bruiser to be Christened.

Born Fighting

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The rest of that day went by so very slowly. Bruiser was alive and taking it one minute at a time. On a visit to see Bruiser later on that day, we received the great news that he had a last stabilised for now, although he remained very very poorly. We were advised not to get our hopes up as despite his progress so far, he could so quickly deteriorate and if he did, they wouldn’t be able to bring him back again, they had done everything they could do for him now. The fight was all his.

Stable at last

For the next few days we lived on tenter-hooks waiting and hoping that his internal organs would ‘come to life’ or show us signs that they were working. Bruiser spent the best part of two days having phototherapy too and the wait was also on for his 1st wee.

On our first visit onto the NICU on the morning of the 27th, we were absolutely overjoyed to see Bruiser off the ventilator. Over night not only had Bruiser been taken off the ventilator in the early hours of that morning and was now breathing with cpap, he had also done his first wee 🙂 This was monumental. He was three and a half days old.

1st pic off the ventilator

From this moment on Bruiser continued to grow stronger and stronger.  He opened his eyes and looked at us when we talked to him for the first time. We heard him properly cry for the first time.

and the best bit…. at 5 days old, we got our first cuddle, the impossible hug.

My first cuddle

Daddy’s first cuddle

First picture with Mummy and Daddy

It was on this day that Bruiser was given his first milk from me through a tube into his tummy. It obviously agreed with him because this prompted his first poo and subsequently an opportunity to change his nappy for the first time 🙂

Mummy’s Liquid Gold

Daddy’s first dirty nappy

All these things might seem so insignificant to any parent of a normal full term baby but for any parent with a baby in the NICU or SCBU, these are pinnacle moments in their recovery and also a chance for some precious bonding time with our baby. These were the moments I would set my alarm for and get up in the middle of the night to do (the 3-hourly breast pumping aside).

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Contentment

A rare moment off the cpap while he was cleaned and cuddled.

Cuddling Daddy’s finger

A smile if ever I saw one

On the morning of the 4th February, Bruiser was 12 days old, he had gone his first 24hrs off the cpap. This meant he was now able to be transferred closer to our home town to continue the rest of his recovery.

All set for the journey home

In the Ambulance

Part 2 ~ Almost Home – Our story continues when we arrive at our local NICU.

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Thank you to everyone involved in Bruiser’s care.

The Neonatal team at the Calderdale Royal Hospital in Halifax, you saved his life. We are forever in your debt.

The Neonatal team at Barnsley Hospital who provided Bruiser’s continued care after he was transferred.

Thank you also to…

Our families for all your love and support through what was the worst time of our lives.

My Mum and Dad for coming to us on the day Bruiser was born and being our pillars of support.

Hubby’s Brother and Sister-in-law, for looking after Wriggler in the very early days when we both needed to be at the hospital. It meant to world to us knowing that he was safe and happy, while we concentrated our efforts with Bruiser.

My Brother and sister-in-law for looking after Wriggler and helping him maintain his normal nursery routine before Me and Bruiser came back to Barnsley.

To all our friends for your messages of love and support.

Everyone that contacted me via social networking and texts to talk to me. This kept me sane during the those first 12 days when I was with Bruiser in Halifax and Hubby had gone back home for the night.

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Thank you also to Bliss for all that you do to support the families and the babies in the NICU and SCBU. Without everything that you do, so many babies wouldn’t survive and I certainly wouldn’t be writing this post today

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nil by mouth

31st January 2011.. my facebook status read, ” today will be remembered as the day I became mam mam 😀 (Bruiser’s first word) ” 

Talking is something that comes very easy to us all and something that we all take for granted. But, for Bruiser my youngest son, this is proving to be something of a challenge.  He can’t even communicate to us his basic needs, and then there is his lack of social skills that again come very natural to most children of his age and indeed any age.

For Bruiser, these are developmental delays that haven’t taken us by surprise given his very difficult start in life.

Bruiser was born by emergency section at 31weeks having suffered a massive feto-maternal haemorrhage, the biggest on record we were later told. He suffered with varying complications (bleeds on the brain, internal organ failure, heart stopping, to name a few) as a result of this he needed several life saving blood transfusions and then he had to fight for his life. Because of what happened to him he was starved of oxygen for going on 12 hours and possibly more while still in my womb. I only knew something was wrong and went to hospital when I hadn’t felt him move for about 6 hours.

In his very early hours when the doctors were asking us to seriously consider withdrawing his life support and prepare for the worst saying that they had done all that they could do for him, we were told that ‘IF’ he survived (which they put at less than 10%) there was every possibility that he would; worst case scenario; be mentally retarded and best case; have cerebral palsy. We were told that he would never walk or talk, he wouldn’t go to school, lead a normal life or anything that you naturally assume when you bring a child into the world.

Born Fighting… taking it one minute at a time

We CHOSE to keep him alive regardless of what ever his long-term prognosis would be and in the end Bruiser chose Life!  

As he survived, got stronger, came of his ventilator and his internal organs began to slowly come to life over the course of the next 7 days, we started to prepare ourselves mentally for the unknown future that was to come.

After 14 days in the NICU, Bruiser was moved to the SCBU.  At an astonishing 28 days old our little Bruiser left the SCBU and came home.

(i wonder if I’ll ever tell this story without crying)

Fast forward 2 years!!

Bruiser is now a very energetic life loving 2yr old,  he isn’t mentally retarded and he doesn’t have cerebral palsy. As he got older and stronger, he hit all his physical milestones showing no evidence of delayed development.

However, Bruiser never babbled as a baby, it was just before his first Christmas at 11mths old that he started babbling and just after his 1st birthday, he said his first word ‘Mam mam’ to me no less!! 🙂  But then words and sounds came think and fast and by the time he was 15mths he was saying ‘t-sir’ for t-shirt, ‘air’ for hair ‘bable’ for table ‘ibib ible’ for iggle piggle. Life was great for him and it seemed that he had overcome every obstacle in his way and was going to lead a normal life after all.

Then one day it all stopped… no words, no babbling, no sounds, (it was like he suddenly didn’t know how) just crying lots of crying and extreme frustration!

After numerous consultations with his pediatrician and health visitor, he was referred to speech therapist and also to the community pediatricians as together with other behavioural problems that were starting to become evident, he was suspected of having Autism.

Any sort of diagnosis in respect of Autism is a long way down the road for us if in fact we get one at all so in the meantime we are doing whatever we can for him to help him along.

Bruiser LOVES and I mean LOVES Mr Tumble and is so interactive with the Something Special programme that his speech therapist has introduced us to Makaton as a way of communicating with him… and its working 🙂 !!

Bruiser, Mr Tumble and that Spotty Bag

A whole new world has suddenly opened up for us all. On a very basic level, Bruiser can now tell us he wants a drink or something to eat, he can ask for a toy ie car, bus, rocket, he knows what he wants on tv and can tell us. When we are out and about, he points to things and tells us what they are, what colour they are, if its big or small.

It isn’t just Bruiser that is learning Makaton. Me, his Daddy and big brother Wriggler can all now do the basic signs to communicate meaningfully and effectively with Bruiser.

Life is suddenly no longer as frustrating, his ‘meltdowns’ are still there but have gone from hourly meltdowns whenever and where ever to occasional and they usually center around him trying to tell us something or he wants something and he just doesn’t know how.

Bruiser’s verbal communication is gradually getting better because of the Makaton! I think this comes down to him now associating sounds with the signs that he knows that get him what he needs. Unfortunately though, those initial words he could say at 15mths… mam mam, tsir, babble etc have never returned 😦 he now looks at you gone out when you ask him to say them verbally, almost like you are speaking a foreign language. He can sign them though!! But I do wonder if he will ever say them again.

I myself am about to embark on a course of Makaton to take our communication with Bruiser to another level. Who knows where this will then take us.

But i still long for the day that i will hear him say ‘Mam mam’ again!

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