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Posts from the ‘Twins’ Category

Update

It has been a few months since I wrote my last blog about the boys. Tbh I have been really struggling with my mood and keeping my game face on. Took a while to realise it just isn’t possible to do it all, so prioritising the boys and work I took the spare moments I would usually use for writing my blog to just have 5 mins, Practice my Soothing Rhythm Breathing and attempt to be less critical of myself in the process. I have been using the compassionatemind.co.uk website and I have found it to be a massive tool I have used to help me remain calm and grounded.

The boys have been full of mischief as usual. Out of the 4 places on offer for special education nursery provision in North Lanarkshire my boys were very lucky and were allocated a morning space each. They start Clydeview Nursery in Motherwell in August and will be there for 2 years until they start primary school. I am hoping this will be the game changer in their development progress. Already since May I have seen such a difference in not only Lewis’ speech development but also Logan’s. it is so so cute hearing Lewis shout ‘again’ or ‘my turn’, in the morning waking up to Logan shouting ‘ewis where are you?’

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My Baby boys are now 3!!

My ex 25weeker twins boys turned 3 last week. Just a wee look back at the boys birthday week each year.

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Fellow NICU mum

www.amazon.co.uk/dp/B07B4234B5/ref=cm_sw_r_oth_tai_iX6MAbJ1A483F

I am very proud to write that I am friends with the author as our journey in the NICU overlapped with each other’s. if you get the chance please give it a read.

Stay cool

Scottish Twin Mamma

Pressure.

Pressure from society and social media to be the “perfect parent”

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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

Winter bugs

As you will be aware from the recent media attention, winter bugs are at an all time high at the minute. Norovirus, shingela and influenza namely Aussie flu seem to be doing the rounds currently. For the life of a preemie parent this fills us with dread and despair. A simple cold could have fatal consequences for our vulnerable babies never mind the host of bugs that can cause even the fittest of people to become unwell.

As expected, our household didn’t manage to avoid them this year. By Christmas I had been lulled into a false sense of security thinking this was the first year since the boys have been born that we hadn’t been struck down with some sort of major illness. We had skated by with Just running noses and the sniffles. I hadn’t even needed to give the boys their inhaler via the asthma protocol the doctor had put in place. Oh how wrong could I have been? This twin mammas household was struck by the dreaded Norovirus.

First came Lewis, then Logan then hubby and I. It was absolute hell and we are now only beginning to come out the other end of it. Keep in mind we are on 7th January!! 13 long days of at least one of us being ill. As per usual, poor Logan seemed to take up the lions share of this time. For the past 2 winters he has been admitted to the children’s ward at Wishaw General Hospital due to dehydration for a fluid challenge. I know you are all thinking – Well why didn’t you just fluid challenge him at home? For those of you who don’t know a fluid challenge for a child of his age is 5ml of water every 5-10 minutes. We do this each and every single time he is ill with a vomiting or diarrhoea bug such as Norovirus, but this poor wee lamb normally can’t even tolerate a few mls of water in his stomach. Luckily this time we managed to avoid an admission by the skin of our teeth. I am so grateful we weren’t admitted for a few reasons. The obvious being it’s best to keep him home and also our local NHS along with many other trusts are in a state of crisis at the minute. They are experiencing even further staff shortages due to this and many other bugs hitting their staffing levels hard. Visitors were turned away through the week as wards went on lockdown to prevent visitors passing bugs onto staff and of course vulnerable patients.

The above picture does make me giggle though. I am a nurse and never in my days have I ever seen 3 people cleaning a bed! Even on a deep clean protocol.

So what can we do to prevent bugs from being passed to each other?

• Wash your hands thoroughly after going to the toilet. Ideally, use liquid soap in warm running water but any soap is better than none. Dry properly after washing

• If a potty has to be used, wear gloves when you handle it, dispose of the contents into a toilet, then wash the potty with hot water and detergent and leave it to dry

• Don’t share towels and flannels

• Don’t prepare or serve food for others

• Regularly clean with disinfectant the toilets that you use.

• With hot water and detergent, wipe the flush handle, toilet seat, bathroom taps, surfaces and door handles at least once a day. Keep a cloth just for cleaning the toilet (or use a disposable one each time)

• Stay off work, school, college, etc, until at least 48 hours after the last episode of diarrhoea or vomiting

• Avoid contact with other people as far as possible during this time

Excuse the pun but sending your children to nursery when they are ill is a real bug bear of mine and other preemie parents. My boys return to nursery next week and I am terrified that they catch something with their immune system already being compromised. 48 hours after the last episode of vomiting or diarrhoea is essential to stop the virus from spreading to other children and staff. I know people worry about their sick time at work and we don’t live in an ideal world but it seriously upsets me when I see staff at the boys nursery unwell with the cold etc. To the point I have actually said to the nursery manager and her reply is normally that staff shouldn’t come in when unwell but if they do they are kept away from the children. Again, I know this to be untrue as the staff numbers incorporate everyone and breaks need to be covered etc. I just hope and pray that their hand hygiene is top notch as I don’t want my boys ill. Last March Logan was blue lighted to hospital as he was so wheezy and exhausted he had a blue pale complexion and was floppy. A common cold for him had progressed into the dreaded RSV. So please, please, please keep your children away from nursery if they are unwell. Even if you use nursery as your childcare provider. It is time to be less selfish and think of others.

If you are unwell:

  • Stay at home – gp surgeries and hospitals cannot offer any treatment to deal with these common bugs. Unless complications arise.
  • Drink plenty of fluids and stay hydrated. Use rehydration sachets if need be.
  • Take paracetamol to combat any fever you may have or the general aches and pains you feel when unwell.
  • Rest as much as life and your circumstance allow.

As always: Stay Cool.

Scottish Twin Mamma

Merry Christmas

I hope everyone had a lovely day celebrating Christmas with their loved ones. A special thought to our nearest and dearest who had a party in heaven to celebrate the birth of Jesus with us.

For our current NICU mums I hope you managed to enjoy ur special day with your little miracles. Celebrating in hospital isn’t ideal but just think of what next Christmas will bring if health willing everyone is at home together. Father Christmas still stops by to check in on the babies in hospital. As we know a preemies fight does not stop when they are discharged home. A special prayer goes out to one of my cyber mum friends who has twin boys the same age as mine. Both boys spent Christmas in hospital seriously unwell. At one point they were in different hospitals. I can not imagine the pain and heartaches those mummies have felt this year and I’m guessing it wasn’t the most festive. Massive hugs prayers and good thoughts going out into the universe for those two fighters.

Due to their developmental delays my boys still didn’t really know what was going on except they seem to have new toys to play with. Unsure if this is controversial or not but I did buy my boys twin dolls and a buggy. My family weren’t too keen but I think my Lewis is destined to be a twin dad someday as at the young age of 2 he is smashing it!

Logan even seems to love the dolls and has been cuddling them – something he has never done with teddies. He has also been feeding them himself and me with the baby bottle that came with them. Again this is brand new imaginative play for him so I feel I did the right thing getting them. In this day and age we shouldn’t be worrying about gender stereotypes anyway. We should just love our children and try and get them what they need to develop and grow. Of course also what they want as a wee extra special treat!

Merry Christmas everyone. Hold your babies tight and thank all that is good you have your babies to snuggle In tight too.

Scottish Twin Mamma

Xxx

Memories

Having a look at my Facebook and the memories pop up. Sitting here in tears yet again. Last winter was a particularly brutal winter for my preemie friends. At the time Logan’s chest had also been very bad and all my anxieties were heightened. This winter – touch wood, has been better for our family in regards to chest infections, although I would say Logan has had his fair share of illness earlier on this year with him having RSV, turning blue going limp needing to be 999 rushed to hospital in an ambulance and having nebuliser and oxygen therapy in March. The post I wrote is written below:

I honestly thought wow today was tough with my boys. But I have just learned that a preemie warrior just like them has passed away and grew their angel wings. I would take today’s sickness tantrums and random scream hysterical crying times a million just to make sure my boys stayed here with me. Puts life and our supposed struggles into perspective. There are too many families not spending Christmas with their babies. Some I know personally some have become cyber type friends via preemie support groups. I cried today and felt like I wasn’t coping as well as I should but there are families crying for more serious problems than mine.

“Tonight I came to bed to find my boys snuggled up like this and I cried again. Not because I was sad or stressed but because I realised how extremely lucky I am to have these 2 amazing fighters to kiss and cuddle good night.

I love my boys more than words can ever describe.

Also I should add before any bashing begins that I did move Logan’s leg away from his brothers neck.”

The last few months have been hard for us in other ways. Extreme tantrums due to the boys lack of understanding and social communication skills. The paediatrician putting it in black and white that Logan more than likely is on the autistic spectrum and for tests to begin next year. Yet again however, seeing this post pop up on my memory feed has brought me back down to earth with a bump. At least I still have my boys with me happy, mostly healthy and more importantly alive! Mums of angel babies would give anything to have their gorgeous babies back here on earth and in their arms dealing with whatever life throws at them.

I can’t reiterate enough how lucky I am to have these 2 amazing warriors clinging to my side fighting over who is getting cuddles from me everyday. No matter what life throws at us and how bad we feel we have it, it is important to remember there are people out there who are going through worse. We all have our own journeys to face but remembering those angel babies for me is a priority.

Sending prayers and hugs into the universe for those babies we never got to meet or were taken away from us far too soon. Also, praying for the families here on earth they left behind.

Scottish Twin Mamma.

Xxxx

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

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