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Speech and Language

This blog has taken over a week of research to do and I must admit a lot of procrastinating. I think mainly because this area of the boys development scares me. They will be 3 next month and don’t speak. Logan is classed as non-verbal and Lewis has always been making noises and sounds after the SALT (speech and language team) got involved but yesterday he said mummy clear as day whilst looking at me for the very first time. Over the festive break he started saying bye-bye whilst waving. The boys did babble when they were around 9 months then after Both were very unwell with bronchiolitis they just stopped making sounds all together. No babble. Just silence. They spent a year in silence until Kirsty our therapist started coming out to the house every 2 weeks. We had Kirsty for 1 year and I can tell you she made a massive difference in our lives. She taught me that early communication skills do not include speech. There are steps to reach before then.

Most kids start to babble then make sounds then begin to say words. Not needing to give extra thought into the processes that begin to work before actual speech occurs. As you may have guessed it my boys like to be different and we had to start from the complete beginning. From birth to 5 is a critical period for detecting communication difficulties & providing intervention, but studies show as many as 64% of parents are unaware of the early warning signs of speech & language disorders.  Unfortunately, parents are not alone.  Studies show that despite being one of the most common disorders of early childhood, communication disorders are also the least well detected among pediatricians.  More often than not, valuable time is lost between the time a weakness is suspected and a child receives the assessment and intervention services he or she needs.  In this respect though we have been very lucky. By the simple fact that the boys were born so prematurely all eyes have been on them since the moment they were born. They were the neonatal consultants, neurodevelopment consultants as well as physiotherapists and occupational therapists until they reached the age of 2. They were then transferred over to the community paediatric team who have seen them twice since June 2017. As well as the before mentioned SALT intervention due to difficulties with weaning and eating solid foods. All those experts collectively have kept a very close eye on my boys to watch for and treat any delays that occurred. Both boys suffered from brain bleeds when they were born and as much as we know they are delayed due to Prematurity we don’t know how much of this delay is due to the brain bleeds.

So what can parents do to help their children whom they suspect has a speech delay? They should do some research and educate themselves on the signs of common speech and language disorders in children between birth to 4 years of age, an important stage in early detection of communication disorders. No one professional will serve as a better advocate for your child than you, the parent. You know your child better than anyone else in the world. If your gut tells you that something just isn’t right trust your instinct. There is a reason a mothers intuition is so important.

Signs of a Language Disorder:

• Does not smile or interact with others (birth and older)

• Does not babble (4-7 months)

• Makes only a few sounds or gestures, like pointing (7-12 months)

• Does not understand what others say (7 months-2 years)

• Says only a few words (12-18 months)

• Words are not easily understood (18 months-2 years)

• Does not put words together to make sentences (1.5-3 years)

• Has trouble playing and talking with other children (2-3 years)

• Has trouble with early reading and writing skills (2.5-3 years)

If a communication delay is suspected as it was with my boys early intervention is key. Seek advice from your health visitor and/or nursery key worker ASAP. If no one listens to your concerns and continually fobs you off by saying your are too young to be assessed etc just keep raising your concerns. Don’t stop until someone listens. You are not alone.

If you have any helpful hints or tips on how to help your child with early communication difficulties please feel free to comment. Let me know your personal experiences and how you managed to secure the help your child needs and deserves. Please feel free to ask any questions you may have.

As always. Stay cool.

Scottish Twin Mamma

Extreme Prematurity and risk of Autism Spectrum Disorder (ASD)

Every parent worries about the risks of ill health to their unborn or newly born child. In fact, at 35 years old I’m pretty convinced that my parents still worry about my health and now of the health of their grandchildren. My GP informs me new mothers make up the bulk of their emergency appointments due to their child just not being quite right or being off some how. Rightly so, the new mothers seek medical advice to put their worried minds at ease.

Since the boys were born at 25 weeks gestation I have had my own and very personal set of worries on my mind. It started with the immediate health worries. First and foremost with Lewis and/or Logan survive the next hour,day or night. This happened on so many different occasions whilst in the NICU it almost seemed to become the norm. When we got home from the NICU the boys were still oxygen dependant and remained that way through out the winter months fighting off the usual winter bugs such as chest infections and the Noro virus, however, with possible deadly consequences for my boys.

As the boys have went from physical strength to strength there has always been this niggling worry that their neurodevelopment May be delayed or indeed impaired. As science has progressed, the survival rates for premature babies has dramatically increased especially among the smallest and sickest babies. Studies show that when survivors of Prematurity reach school age they are 50% more likely to exhibit signs of significant higher order neurodevelopmental impairment. This includes difficulties in learning, behaviour and executive functioning often requiring additional needs and special education support. Recent reports go on to suggest that this increase in atypical socio-behavioural functioning in the premature survivors population is strongly suggestive of Autism Spectrum Disorders (ASD).

According to the NHS website Autism spectrum disorder (ASD) is the name for a range of similar conditions, including Asperger syndrome, that affect a person’s social interaction, communication, interests and behaviour. In children with ASD, the symptoms are present before three years of age, although a diagnosis can sometimes be made after the age of three. It’s estimated that about 1 in every 100 people in the UK has ASD. More boys are diagnosed with the condition than girls.

There’s no “cure” for ASD, but speech and language therapy, occupational therapy, educational support, plus a number of other interventions are available to help children and parents.

Some children with ASD need to stick with routine as even the tiniest of changes can trigger tantrums, some children may engage in repetitive activity such as turning light switches on and off or neatly lining up their toys. A massive worry I have personally is even though the professionals are concentrating on Logan as they believe he has ASD Lewis also exhibits these symptoms as well. Many children with ASD also can go on to be diagnosed with ADHD or Sensory Perception Disorders.

The reason, I have found in articles that links ASD and Prematurity so strongly is that the brain develops best in the womb. When the child is born extremely early such as before 28 weeks the brain development is altered and almost wired differently to that of a full term child. This is due to the child being exposed to so many stressors during a critical stage of development. Researchers go on to explain that although ASD is not a curable condition early intervention with speech therapy, OT and behavioural/education support we can help our children move more into the mainstream of society.

Early signs of autism to look out for in babies and toddlers are:

If your baby or toddler doesn’t:

• Make eye contact, such as looking at you when being fed or smiling when being smiled at

• Respond to his or her name, or to the sound of a familiar voice

• Follow objects visually or follow your gesture when you point things out

• Point or wave goodbye, or use other gestures to communicate

• Make noises to get your attention

• Initiate or respond to cuddling or reach out to be picked up

• Imitate your movements and facial expressions

• Play with other people or share interest and enjoyment

• Notice or care if you hurt yourself or experience discomfort

I’m sure this is a topic I will go to familiarise myself with and write more about. However, if anything I have written has struck a chord with you in regards to your own child then I would advise contacting your GP or health visitor. Whilst it is important to remember all of our children develop at different rates so some children may take longer to sit up unaided walk, talk or meet their developmental milestones I have found parental instinct can also be key. You know your own child and if you feel that there is a possibility that the delays your child are experiencing aren’t normal then it is best to seek medical help and take it from there.

I hope and pray that my children grow up to be healthy and happy individuals. We will deal with whatever the universe throws at us. The only one thing I know for sure is that I love my children more than anything in the world and no diagnoses of ASD or similar conditions will ever change that. The research does show that there is a massively increased risk of ASD among pre-term children. But that is all it is. It is not a definite diagnosis, it is a risk. At the end of the day our preemies are warriors and they will continue to beat all odds and surprise us at every step of the way. Nothing will change that. Just as nothing will stop us as parents fighting for our children and loving them unconditionally.

Stay cool.

Scottish Twin Mamma

Xx

What not to say to a parent whilst their baby is in the NICU

I am by nature a very romantic person. I always dreamed of my big white wedding and having 3 kids. 2 girls 1 boy. I dreamed of everything just short of a white picket fence. Now being a grown up I knew that life isn’t like a romantic movie and we don’t always get everything that we dreamed of, somehow though I always thought that certain aspects of each dream would come true.

I always wanted to spend time getting the nursery ready for my child and having all of my family together for my baby shower. I had visions of leaving the hospital loaded with my gorgeous wee baby, multiple balloons and gift bags that eager and generous family and family had brought with them to visit my cherub. Coming home to a full house decorated with balloons and bunting to celebrate this new tiny life we had brought into the world. As with any mother to be, I also had my birth plan already in my head waiting to discuss it with the midwives. Turns out the universe had other plans for this girl who lived in a romantic bubble. After 10 years of various fertility treatments we finally conceived who would turn out to be our 2 wee miracle babies. After a very complicated pregnancy. The boys were thrown into the world at Just 25 weeks gestation. I always joked that I had to wait 10 years for them but the wee to-rags couldn’t wait 9 months on me. I had to leave the hospital 3 days after their birth with no babies, no car seats, no flowers, no balloons, no gift bags, no full house, no decorations and certainly no celebrating. My heart was broken, I didn’t want to leave my boys behind in the hospital. I wanted them to be with me, I was their mother and they should be with me and my husband. After the boys fight in the NICU they finally came home. Yet still no balloons etc. They didn’t even come home on the same day. It was as if the world had made it its mission to turn everything upside down.

Throughout these months there were many comments made to me and I can guarantee you each and every single comment came from a good place. A place of love and compassion. It’s just as humans our words tend to fail us at times of worry and grief. So either the wrong thing is said or worse. Nothing is said at all.

So I have compiled a list of things that you should never say to a parent who’s child is in the NICU. This list is not exhaustive by any means, if there is anything you feel that should be added then please feel to leave a comment and tell me what else should be there.

  1. At least he will be smaller for longer and you get to have a cute newborn for longer than other parents.’ I genuinely didn’t know how to respond to this one. But I could tell you one thing. I’d have given anything to have my boys born at a regular newborn size. That would have meant my boys were born at term and most probably healthy.
  2. ‘Oh, they just couldn’t wait to meet their mummy and daddy’ now as I said earlier, I have joked about the 10 years 9 months ratio before but really until you have watched your baby turn blue because they don’t know how to breathe by themselves yet then you will never know how hard it is to hear. They are basically saying your baby chose to fight for his life so he could just nip out and say hello.
  3. “You can’t keep wrapping them up in cotton wool’ Boy I heard this Time and Time again. Especially in the early months when the boys were on oxygen, now it seems to be rearing it’s ugly head again now they are nearly 3. As with any parent I will always put my children first. Yet people seem so shocked when you change plans at the last minute due to the wee ones being sick or refusing to go to a party where there are sick people just in case my boys get ill. If I hear one more Time ‘it’s just a cold’ I swear I will scream. “Just a cold’ could lead to breathing issues such as RSV, which could lead to my boys being incubated with a machine breathing for them, which could lead to death. So no, to a preemie mum, there is no such bloody thing as ‘Just a cold’
  4. “Don’t worry, everything will be ok’ As with most comments on this list, this is said from a good hopeful place. That being said they can also brush aside the very real fears that parents face. Nothing can prepare you for the first time you see your precious little bundle with more tubes coming out of their body than you thought could ever be possible.
  5. ‘I take it you are breastfeeding?’ This one was a very sore topic for me. I felt like a big enough failure that I couldn’t get pregnant without help, then I could make it full term, but to then be told I was not allowed to breastfeed after the nurses made such a big deal to tell me how important it was for my sons that they be given breast milk just made me feel so so low and like the biggest failure ever. I thought maybe I wasn’t supposed to be a mother after all. I still feel tremendous guilt over this to this day. I know deep down that a fed baby is best. I also opted for donor breast milk to give my boys the start I felt they deserved. I didn’t want them to be punished for my failures. It will take a very long time, if ever for me to completely forgive myself. So please, don’t ever just assume. Unless you know the circumstances, don’t ever just assume.
  6. “Wow, 1lb 7 and 1lb 11? You must have just sneezed and they popped out? You are so lucky you didn’t have to give to birth to 2 full size babies!’ I still find it difficult to see this comment as anything other than insensitive. Actually, this comment makes me want to scream. WTAF?????
  7. “At least you got to miss that really big uncomfortable stage’ I would have given my right eye to be big sore and uncomfortable to stop my boys from know the pain of needles and tests before they knew the touch and cuddle of their mum.
  8. “At least you get to go home and get a good night sleep.’ You never want to leave your baby in the hospital but sleep? Hell, when or if I ever get a good nights sleep again I will let you know.
  9. “When will the boys be normal and catch up with other kids their age?’ What is normal anyway? How dare you say my boys aren’t normal. Like any child they will do things in their own time. I will love them unconditionally no matter what their developmental age is. There are no crystal ball, NICU babies progress over the years at their own rate. The fact that they are alive and breathing is miracle enough. They will reach their own milestones in their own time.

10.Thank god that is over and done with.’ We are nearly 3 years down the line now and our journey still isn’t over. Many people assume that once baby is home that the NICU is a distant memory. However, many preemie babies are often left with long term health difficulties. Some of these will resolve over time, but many can be life long complications. The boys are at this stage just now. Many people feel they should be just like their peers and I have even been told to my face that the boys aren’t anything special. They are children and all children are special. I agree all children are special but not all children have had to face the uphill battles like my boys so yeah my boys are god damn special. We will be dealing with health issues due to their Prematurity for many more years to come if not forever. Our lives have been changed so much by having the boys and the likelihood is we will need to adapt and change our lives to suit our boys forever. Do you know what? I wouldn’t change the boys for all the tea in China.

Instead maybe say congratulations, celebrate the birth of a new life. Don’t be scared to do this because you fear the wee baby might not make it. As true as it is that not every baby makes it home from the NICU it is important to remember that every baby deserves to be celebrated. If you don’t know what to say, just say that. Don’t stay silent or worse say something that could be deemed as insensitive. Tell your friends you will be there for them whenever they want to talk. Make them a dinner for coming home from the hospital or offer to help with housework. Let them know that they are the most important people in their babies lives.

I wouldn’t wish our NICU journey on our worst enemy. If someone you know is currently going through their own NICU journey have a thought about what I have written above.

Stay Cool.

Scottish Twin Mamma

World Prematurity Day 17th November 2017 — Triggering PTSD

Today is a very significant day for parents of premature babies world wide. As with many health issues you can find support groups on social media platforms such as Facebook etc personally I am a member of a few groups aimed towards anxiety, premature birth and multiple birth. It is a well known fact that multiple births are high risk pregnancies and a high percentage end with the babies being born early. Usually the more babies are there, the earlier the babies are born. What isn’t discussed as often is Singleton babies born too soon. According to The World Health Organisation (WHO) there are sub-categories of pre-term birth, based on gestational age.

  • Moderate – late preterm (32 to <37 weeks)
  • Very preterm (28-<32 weeks)
  • Extremely preterm Aka micro preemie (<28 weeks)

My boys were born at 25 weeks gestation. Lewis was 1lb 7ozs. (652grams) Logan was 1lb 11ozs (765grams)

Of the 1 million preterm babies who die every year it has been reported the 3/4 of these babies could have been saved if they had access to proven and usually inexpensive care, such as warmth, breastfeeding support and basic medical care for breathing difficulties and infections. Just let that sink in. 3/4 million babies could be saved every year. That one statistic is enough to prove raising awareness of preterm birth is essential. By raising awareness we are able to raise funding that can go towards research to prevent as many preterm births as possible. Although, as a preemie mum it can be so so difficult to see all the pictures of tiny babies with breathing tubes fighting for their life in incubators I understand the importance of getting those images and stories out there. If you read blogs or articles that take you through someone’s NICU journey you will find most of the mums state that they had very little knowledge of preterm birth and it’s causes.

My case was a bit different however, I grew up knowing that the miracles of science could save a baby born so early. My older brother was born at 26 weeks gestation in 1977. The doctors didn’t give him a real chance of survival. He weighed less than a bag of sugar. He is now 40 years old with his own family. My poor mum then went into labour with me around the same gestation, however, this time they knew that there was a chance of this happening so she had been monitored very closely throughout her pregnancy. So with some medical interventions I lasted until mum was 30 weeks pregnant. It was always thought that spontaneous preterm labour was not heredity, yet recently WHO have stared there could be a family link.

I have tried to speak about my experiences of preterm birth with my boys in this blog but I have successfully managed to avoid my personal feelings and speak more about the facts. This has been one of my biggest personal demons. I’m like an emu. When life is stressful I put the biggest smile on my face, pretend to the world that everything is A-ok and bury my head along with my problems in the sand. I recently discovered this only works for a certain length of time then all those fears, feelings and anxieties rush to the surface and there is no way to hold it all back. The last few months have been like a living hell and I’m sure my family who are my biggest support network will agree it wasn’t pleasant for them either. I went from being a happy bubbly person to someone who took every tiny thing to heart and would explode in a rage to defend herself when in actual fact I wasn’t being threatened in the slightest. Some studies suggest that up to 71% of NICU mums go on to develop PTSD. Is it any wonder though? The body and mind go through such a massive invasion at childbirth and that is when mum and baby are in good health. Now add in additional stressors such as traumatic birth, premature birth, complications to mum and baby.

So today is National Prematurity Awareness Day. Please take some time to pray for and/or send Well wishes for those babies who are still currently riding that NICU rollercoaster.

Think of the babies born too soon who didn’t get to go home from the neonatal unit.

Think of the babies who fight life threatening illness every winter due to their lungs being damaged from Prematurity.

Think of the babies who due to being born early and fighting for life daily in the early stages are now left with physical, cognitive or learning disabilities.

Think of the parents who fight along side their little warriors praying to take their place and not see their little miracle suffer everyday.

Think. Just think. The fight doesn’t end for many parents and babies when they leave the NICU and often this is a time where the parents need more emotional support than before. The fight can continue for years and even be lifelong.

To all the babies born too soon, I salute you.

Stay Cool.

Scottish Twin Mamma.

World Prematurity Day 17th November 2017 — Triggering PTSD

Today is a very significant day for parents of premature babies world wide. As with many health issues you can find support groups on social media platforms such as Facebook etc personally I am a member of a few groups aimed towards anxiety, premature birth and multiple birth. It is a well known fact that multiple births are high risk pregnancies and a high percentage end with the babies being born early. Usually the more babies are there, the earlier the babies are born. What isn’t discussed as often is Singleton babies born too soon. According to The World Health Organisation (WHO) there are sub-categories of pre-term birth, based on gestational age.

  • Moderate – late preterm (32 to <37 weeks)
  • Very preterm (28-<32 weeks)
  • Extremely preterm Aka micro preemie (<28 weeks)

My boys were born at 25 weeks gestation. Lewis was 1lb 7ozs. (652grams) Logan was 1lb 11ozs (765grams)

Of the 1 million preterm babies who die every year it has been reported the 3/4 of these babies could have been saved if they had access to proven and usually inexpensive care, such as warmth, breastfeeding support and basic medical care for breathing difficulties and infections. Just let that sink in. 3/4 million babies could be saved every year. That one statistic is enough to prove raising awareness of preterm birth is essential. By raising awareness we are able to raise funding that can go towards research to prevent as many preterm births as possible. Although, as a preemie mum it can be so so difficult to see all the pictures of tiny babies with breathing tubes fighting for their life in incubators I understand the importance of getting those images and stories out there. If you read blogs or articles that take you through someone’s NICU journey you will find most of the mums state that they had very little knowledge of preterm birth and it’s causes.

My case was a bit different however, I grew up knowing that the miracles of science could save a baby born so early. My older brother was born at 26 weeks gestation in 1977. The doctors didn’t give him a real chance of survival. He weighed less than a bag of sugar. He is now 40 years old with his own family. My poor mum then went into labour with me around the same gestation, however, this time they knew that there was a chance of this happening so she had been monitored very closely throughout her pregnancy. So with some medical interventions I lasted until mum was 30 weeks pregnant. It was always thought that spontaneous preterm labour was not heredity, yet recently WHO have stared there could be a family link.

I have tried to speak about my experiences of preterm birth with my boys in this blog but I have successfully managed to avoid my personal feelings and speak more about the facts. This has been one of my biggest personal demons. I’m like an emu. When life is stressful I put the biggest smile on my face, pretend to the world that everything is A-ok and bury my head along with my problems in the sand. I recently discovered this only works for a certain length of time then all those fears, feelings and anxieties rush to the surface and there is no way to hold it all back. The last few months have been like a living hell and I’m sure my family who are my biggest support network will agree it wasn’t pleasant for them either. I went from being a happy bubbly person to someone who took every tiny thing to heart and would explode in a rage to defend herself when in actual fact I wasn’t being threatened in the slightest. Some studies suggest that up to 71% of NICU mums go on to develop PTSD. Is it any wonder though? The body and mind go through such a massive invasion at childbirth and that is when mum and baby are in good health. Now add in additional stressors such as traumatic birth, premature birth, complications to mum and baby.

So today is National Prematurity Awareness Day. Please take some time to pray for and/or send Well wishes for those babies who are still currently riding that NICU rollercoaster.

Think of the babies born too soon who didn’t get to go home from the neonatal unit.

Think of the babies who fight life threatening illness every winter due to their lungs being damaged from Prematurity.

Think of the babies who due to being born early and fighting for life daily in the early stages are now left with physical, cognitive or learning disabilities.

Think of the parents who fight along side their little warriors praying to take their place and not see their little miracle suffer everyday.

Think. Just think. The fight doesn’t end for many parents and babies when they leave the NICU and often this is a time where the parents need more emotional support than before. The fight can continue for years and even be lifelong.

To all the babies born too soon, I salute you.

Stay Cool.

Scottish Twin Mamma.

World Prematurity Day 17th November 2017

We are coming ever closer to a day that is very close to my heart. National Prematurity Day 17th November 2017. However, in the UK we raise awareness the whole month through. The charity Bliss ( Twitter – @blisscharity ) are this year focusing on Prematurity and what it means to you.

With 1 in 10 babies being born premature worldwide we need people to know what obstacles babies and parents come across each and every single day. Giving birth to a preemie baby has a massive ripple effect that’s not just felt by parents but siblings grandparents friends and even work colleagues. In the UK alone 95,000 babies are born premature or sick. Being born far too soon means the baby is at higher risk of longterm health problems such as Cerebral Palsy and even at a higher risk of requiring special education at school. This fact is particularly true for my boys just now. Logan was stuck on a ventilator and no matter what the medical professionals attempted they couldn’t wean him off it. Everyday spent on a ventilator damaged his lungs further and brought up more health risks. The consultant spoke to my husband and I about giving Logan steroids in order to get him off his vent. Seems a logical solution – go for the treatment that will take away the ventilator, This came with a massive but though. The steroid treatment meant that Logan would be at higher risk of developing cerebral palsy, this was magnified by the fact he had suffered a brain bleed at birth and was at risk of cerebral palsy due to his Prematurity anyway. The discussion we had that night when we got home was just awful. We felt like we were trapped between the devil and the deep blue sea. In any event, we decided to be proactive, charge ahead and deal with the consequences as or if they arose. Logan is now 2 years and 9 months old. This is where we are seeing his cognitive development is not where it should be, even giving him grace for his Prematurity he is no where close. So this has started the discussion between his health visitor, speech therapist and nursery personnel that they feel he may be better suited to a quieter, smaller learning environment with specialist teachers. This is not to say he won’t ever catch up it is just to give him the best chance to catch up and attend a mainstream primary school. I was also worried that even though he was walking that he may have a milder level of cerebral palsy. He walks with his arms flapping about in the air with no purpose. He seems to have hyper mobile joints especially his elbows and shoulders. He also a very clumsy boy and will fall over very big obvious obstacles. The health visitor seems to think this is due to a sensory perception disorder (SPD). So life is very much up in the air with regards to the boys cognitive abilities. All I know is I have a very supportive family and no matter the outcome those 2 little miracle lion cubs will be fully supported and loved more than the world by everyone.

On our first day in the NICU the nurse looking after my boys explained that this is day one of a rollercoaster journey. Whether your journey is days, weeks or months you will be pushed to every physical and emotional limit you have. Just as you feel you couldn’t possibly deal with anymore along comes another dip. Yet everyday you get up, get ready and sit by the side of the incubator of the most precious wee warrior you know. Just knowing that they are fighting hard is what gives you the strength to carry on. This little person who you made and brought into this world yet haven’t been allowed to touch never mind give a cuddle is what gives you the courage you need to continue on.

We spent a heartbreaking 118 days sitting Vigil at the bedside of our little lion cubs. Willing them on, celebrating every gram of weight gained and every ml of milk taken, until we were given the news that we could eventually be a family together at home. I remember rooming in with my boys and being terrified. Even though we were still in hospital I was their sole care giver. My husband was still working away through all of this with the hope of taking his paternity leave when the boys finally made it home. It was like a military style operation organising feeds, medications, nappy changes and oxygen and that was for just one baby never mind the two I actually had.

The thing I didn’t realise is that nearly 3 years later the rollercoaster would still be going up down and roundabout. I thought that ended once you left the NICU. Nope. It certainly doesn’t.

I have many many stories of our time in nicu but for now I will leave it at that. This has taken me quite a few days to write as even though a lot of Time has passed it is still very raw in my heart and I get upset thinking of my wee guys being so ill.

Please feel free to share your experiences of Prematurity or your child being born unwell with me. Together we can bring awareness to an issue no one thinks about unless it happens to them. We need to highlight the issues and get funding for research so other parents and babies don’t need to go through what we have experienced. Even though our journey was man extremely difficult one, my family had a happy outcome. Unfortunately, not every baby who is born early or unwell leaves the NICU. Some babies fight the good fight but the angels take them to a better place than this cruel world. There are also some babies who get to leave the NICU, go home and then due to medical complications of Prematurity become very unwell and pass away months or even years later.

Please keep those babies and parents in your hearts and prayers. Light a candle for them on the 17th November and raise awareness of a cause very close to my heart.

Stay cool.

Scottish Twin Mamma.

Xx

The big 1!!! Part 1:

Well on Thursday my wee cherubs turned 1 year old. I still can’t believe how far they have came and what a horrible start to life my wee boys had.

The day consisted of my hubby and I saying things like “oh this time last year this was happening” etc The memories are so vivid and raw that it doesn’t allow your brain to compute it was 12 months ago I’ll start by telling you all how this year went before delving into last years antics

Hubby had taken the day off so we woke up as a family All 4 of us and it was lovely We decided to let the boys still go to nursery as they love it so much They had a wee party with their pals had cake and were sung to whilst hubby and I picked up balloons we had ordered and organised the house I’ve had it in my head for a while that I wanted them to have a build bear made just for them for their first birthday Keep in mind no one mentioned I’d have to remortgage the house to pay for it Jeez However. It was worth every penny to see the wonder of their faces to see the fluff machine turn and tumble All 4 of us kissed each heart to give each bear life It was amazing The staff couldn’t have been nicer if they tried and tbh they helped make the whole experience magical They boys even got a couple of pound from an elderly couple we met in a lift for their wee banks As soon as the couple heard their story they were straight in their pockets Which I found very sweet and kind

We had decided to keep Thursday just for us As both sets of grandparents were having a birthday tea at the weekend and I feel this was the best decision we have made in a long time We have had to share our boys so much since they have been born that it felt good to be selfish and keep them to ourselves Don’t think the grandparents agreed though

So a quick run down of this time last year pretty much went as follows:

I had spent the best part of 5 weeks in hospital with only a day here and there home I was missing my husband and my fur babies something terrible so to say I wasn’t in the best of moods or mindset was an understatement I was supposed to be going home on the 25th and was looking forward to it I think I was in denial that the boys would arrive early as I had been in and out of labour with massive bleeding pretty much since I turned 20 weeks pregnant so when I woke up at 5am with tightening and the tiniest bit of bleeding I had decided I wasn’t going to tell the midwives I did however, tell my husband who got pretty irate with me demanding I tell them About 10 minutes after coming off phone a midwife came into my room just to check on me i decided to tell her but it turns out she already knew My sneaky husband had basically told on me whilst waiting on the doctor to review me the tightening got stronger and regular so I was whipped back into the labour room where my twin incubators where still set up from the day before whe I was there Not gonna lie I still thought this was all extreme as I was convinced it would stop and I would be back on main ward within a few hours When I was speaking to hubby though I had a strong feeling I wanted him there He also wanted to be with me Now to put it into perspective my hubby still went to work everyday during this period even though he always offered to be with me However, for some unknown reason he wasn’t going to take go to work as an answer and I really wanted him with me The doctor decided against an internal exam as this can bring labour on so I was monitored very closely I remember asking for something for pain or even gas and air for the now extremely sore tightenings I was given diamorphine bit refused gas and air as I wasn’t having “real” contractions only tightenings

At 12 Monday the consultant decided we needed to know what was going on down below as everything was becoming scarily regular The senior doctor on her service set up for exam She raised the bed and didn’t even touch me just peeked and jumped so high into air that she sent the examination trolley across the room If I hadn’t been so scared I would’ve found this funny I asked if everything was OK Dumb question as I knew by her reaction that it wasn’t The consultant finished the exam informing me I was 5 cm dilated and past the point of no return No matter what at least one of my babies where coming today The first thing I thought was thank god those were real contractions as I was freaking out thinking or dreading what real ones would be like as these “tightenings” were so bloody painful

At this point I experienced a wash of emotions from thank god hubby was here and made me tell the midwives the truth to mind numbing fear as they were too early to excitement that I was going to meet my gorgeous babies We didn’t know the sex of the babies and I had convinced myself that it was a boy and a girl. Hubby phoned my mum as I wanted her at the birth and phoned his parents so all the right people knew what was happening At this point all the parishioners from our chapel had skint knees from praying so much for these precious bundles and I know my mother in law stepped this up a few gears when she knew of their imminent arrival When my mum arrived I was really shocked at how calm she was I didn’t find out til later she had phoned my dad and aunt and cried all the way to the hospital from work so that it was out her system in a sense so she could be strong for me

My poor mum knew better than anyone what I was going through She had lost at baby at 26 weeks then had my brother at 26 weeks then had me at 30 weeks She knew the fear pain and excitement more than anyone, keep in mind my babies were 25 weeks – I always have to go one better 🙂

By 4pm I was fully dilated and the doctor ordered me very seriously not to push!’ Eh what?? That’s not an easy task At this point she explained that if baby 2 doesn’t progress on their own she would leave them meaning I could’ve had twins born on separate days Now that would be a story At 1711 on 25/02/15 Lewis came flying out into this world at the exact moment when it was only hubs mum and 1 very special midwife who we have since became friends with (some bonds cannot be broken) the emergency buzzer was pressed as this tiny 1lb 7oz purple baby lay on the bed not moving With a split second the room was filled with over 10 people Each baby had their own team of neonatologists and I had my own team of midwives It was a very busy room As the team work on Lewis I became obsessed that I didn’t hear him cry but I was told he was too young and the team had intubated him straight away I was scanned to see what baby 2 was doing and he was breech with no signs of moving However, at 1740 Logan made his appearance into the world after a good few pushes and puffs of gas and air – magic stuff btw The first thing I said apparently was ok let’s do this I’m ready for my girl to come now Hubby went grey in case their was a third one hiding in there Lol Again Logan lay on the bed lifeless for a nanosecond before his 1lb 11oz purple body was whipped away by the docs

What I didn’t realise at the time was my dad and brother had been restlessly pacing the floor of the day room so when the boys left my room they got to see them in their travel incubators on route to the nicu like something out of a 50’s film Even at the time the funny part of this wasn’t lost on me

just writing all of this down is really draining on me Next post I promise to tell the rest of that day’s shenanigans but just now I’m spent It’s like I’m living it for real all over again and I have this panicked feeling in my chest

I know it’s daft as both boys are in their cot beside me snoring away happy and healthy but I still hear the machines and feel the fear

Til next post Stay cool

Scottish Twin Mamma

xxxx

The big birthday week

Well  it’s been over s week since my last post.  The reason being is I had an operation on  my arm. It’s been very tough. Dealing with the pain is one thing but having to deal with not being able to look after my boys is another thing.

If it it wasn’t for my family seriously I wouldn’t know how we would cope.

Anyway onto  to some happy news now.  My boys have featured on the front page of NHS Lanarkshires monthly magazine The Pulse.  It’s amazing. So proud of my boys including husband. As a result of this a reporter from The Sunday Post contacted us and they also want to run their story.  So the story has been written and a photographer came out yesterday and took the boys pictures.  We were expecting it to run today but unfortunately it must be next Sunday so keep a wee eye out for my superstars.

My wee lion cubs turn the big 1 this week.  Wow what a year.  Doesn’t seem that long ago I was taking the above pic and looking forward to the next stage of pregnancy. Then only 5 days later the boys made an appearance. The boys were weighed this week and Lewis is 19lb 7oz and Logan is 19lbs 15oz this just blows my mind. As they were 1lb 7oz and 1lb 11oz when they were born.  What a journey it has been.  I still hear the beeps of the machines at night   I honestly don’t think those sounds will ever leave me

I had my first case of overprotective mother this week also.  The boys had their neuro developmental check up st hospital. The Physio put cubes inside a cup and waited for Lewis to take these cubes out.  He picked up cub looked inside it and tipped the contents over the floor.  She then turns to her colleague and said he didn’t do it. I asked what she meant as I saw him do it as well as she did but apparently they were wanting him to pick the cubes out one at a time. I was like wtf???!! He did it. Just because it wasn’t the way you wanted it doesn’t mean he didn’t do it.  The Physio found this hilarious as it really got my back up.  She said ah there is the protective mammy lion coming out. Lol. Overall the boys did well. Lewis has the problem of trying to do things too fast and ironically Logan is the complete opposite. He is too laid back and had already developed the man job of rubber earring you.

So this week will be a very busy week of preparations for the big birthday. They will have a wee party at nursery on Thursday (their actual birthday) does anyone else send their children to nursery/school on their birthday? My husband doesn’t think we should send them but they enjoy it so much I don’t want to take it away from them.  They will also have a party at my parents on Saturday and hubs parents on Sunday.  The advantage of having a big family is it’s impossible to fit everyone so the boys get 2 parties.  Yay. 🙂

stay cool

Scottish Twin Mamma

x

Overwhelming love and fear

I do not co sleep with my boys but hubs and I do lie them in bed with us until they fall asleep then they get very gently transferred into their cot.  This nightly ritual usually resembles something a black ops unit would be proud of.  I think every parent channels their inner ninja when moving a sleeping baby – now try and imagine moving two!!

Tonight Lewis fell asleep downstairs and my usual elephant footed husband would’ve out danced tinkerbell with his light footed dance steps to get our boy in bed without waking him up.  Mr Logan however, had different ideas.  As if by magic his eyes opened wide before my husband had even begun his light footed dance.   Our night time ritual is one of my favourite times of day.  Lying in bed relaxing whilst cuddling our boys and singing some nursery rhymes.  We sing the same songs but in different order each night, I would like to say this is because we like to keep it fresh and exciting but more often than not its just because we never remember what comes next.  A firm favourite with our boys is alibalibee and row row row your boat.  As Logan falls asleep he always needs to be touching you and has this kitten like quality of kneading your hand just as a kitten kneads into the belly of their mother.  I don’t know if it is because of those 5 months spent in NICU or whether I would love this as much anyway but seriously my heart swells with love and pride every night.

This one ritual in past weeks has usually eased me of all the guilt and pain I feel over not being able to care for my boys due to my arm but tonight not only did those feelings not go away but they were amplified with fear.  Today I found out that tomorrow I will be admitted to our local hospital to undergo an operation on Thursday in which a metal rod will be placed into the middle of the arm bone via my shoulder.  This means I pretty much won’t see my boys until Friday and will miss our nightly routine that I have came to love and cherish so much.  I miss my boys so much already and the thought of not seeing them for a few days is devastating me.  The boys are still feeling under the weather so don’t think taking them into a hospital is the best idea unless they need to be there plus night time visiting falls at a time where my little munchkins will be getting fed and then settled to go to bed..

Both of the bogys got extra kisses and cuddles tonight and I dare say will get even more tomorrow – I know any excuse😄  I worked as a recovery nurse for 12 years and have every trust in the NHS and the procedure itself but this has not stopped the fear and worry seeping into my bones- no pun intended! It is not nice for a nurse to be on the wrong side of that theatre trolley and it’s completely true what they say “a little knowledge is a dangerous thing”

So on that note my lovelies, sleep tight and give your babies extra special kisses and cuddles tonight.

Sottish twin preemie mamma

xx

 

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