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Posts from the ‘Illness’ Category

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

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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

 

Feeling sad and disconnected

As I have mentioned in a previous post I broke my upper arm about a month ago.  This is not ideal when you have 11 month old twin boys who rely on you for everything. I did all feeds nappy changes and cares by myself day and night bar one.  Their daddy would always help with the feed before bedtime as it was the only one he was there for due to work. So breaking my arm has been a major blow.  I’m very grateful and lucky to have a very supportive family and at present always have at least one person with me from when hubs goes to work in morning til he gets home at night.

The down side to this is never having any time alone with my boys.  Also not being able to visit with my friends and their babies when I want to as it isn’t fair to ask my family to sit through a visit with people they do know know. Plus as you may have guessed I have the tendency to waffle on a bit and my family know this all too well.

I’ve read loads of stories of parents in NICU struggling to bond with their babies due to always being watched and not being able to cuddle their babies when needed or wanted. I always felt very thankful that I wasn’t one of them.  Well I wasn’t until now.

I am am right handed and it is my right arm I have broken so even with the biggest will in the world I am unable to do anything for myself.  The luxury of washing dressing and even which way to out my hair that day has all been stripped from me and I’m relying on the help of others.

So so you may ask what does this mean for my boys? Well they are still being well cared for its just not by me.  I can’t feed them, wash them, play with them or even change a nappy. I always want to cuddle them but need to wait til they are settled and my care giver of the day can place them onto my left side but as soon as they are active they are whipped away from me as it just wouldn’t be safe.  I couldn’t catch them if they decided to hurl themselves backwards for example.

After struggling with infertility for 9 years I am well aware that I should just be happy that I have not only one baby but two   Trust me, I am deliriously happy  however, very selfishly I don’t want to just love them I want them to love me back   I want to be their world as they are mine  Unfortunately I fear that babies are programmed the same way as my cats, their main aim in life just now is survival so their loyalties lie with whoever feeds and looks after them and I have to say this is breaking my heart.  I know all the logical future scenarios of “och the babies won’t remember anything of this and all will go back to normal once you are healed” this does not stop me from being scared that things won’t return to normal and even if they do I still want my boys to look at me the way they used to. Perhaps I am overreacting and their behaviour hasn’t changed towards me at all, I feel it has though and nothing I do shakes that feeling.

I feel I’m done with the days of having to ask permission of whoever is about to cuddle my own boys   This whole experience has brought back some horrible memories that were best left buried in my sub-conscious somewhere.

 

I just miss my boys and selfishly want them back to relying on me   Looking into my eyes with that milk drunk look that says “dude, your the best!” And perhaps one of the things that makes me the saddest- being able to snuggle both my boys at the same time and smother them in kisses

For being generally an upbeat person, I have a lot of not only dislike but hatred running through my body. I hate feeling disconnected from my boys, I hate this whole situation it I think most of all I hate myself for being so stupid as to fall in the snow.  I mean I live in Scotland for crying out loud, it snows here more often than it rains elsewhere.

Scottish twin preemie mamma

x

 

 

Fast weekend

Just lying in bed with babies sleeping -eventually and hubs snoring away.  Been a tough few days as boys haven’t been well.  Any preemie mum will tell you the fear they experience as soon as their child sneezes but I can confirm the fear is real.

Any new mother is frightened their precious bundle will become unwell but for a preemie mum this is magnified a thousand times

When babies are intubated (the breathing tube down their throat) for any length of time it can cause long term damage to their wee lungs resulting in chronic lung disease or CLD for short.  This alone can make them very easy targets for the dreaded germs to come in and take hold.  A simple cold can turn into a life or death situations for our little ones.  Both of my boys came home on oxygen and have severe CLD. As per hospital protocol they had monthly RSV injections which is the main winter bug culprit for putting prem babies and as far as I can tell from my friends with full term babies into hospital. It can lead to the baby being intubated and unfortunately it can lead to the baby dying   This is why you will find us prem mums freaking if a stranger touches our babies hands when out and about, it is also the reason we go into panic mode when our kids have the sniffles. – as a mum of twins. When we go out it does draw a lot of attention as people want to see the cute babies but I’m  ashamed to admit that even though I have never stopped someone touching the boys hands or faces, I have wiped their hands and face as soon as the stranger leaves in case anything was passed over

 

This week has been one such week for me   The boys started with sniffles then came the constant coughing    I try to avoid the GP if at all necessary as it is usually viral and managed best at home.  In saying that even when the infection isn’t coming from their chest it still sounds like it   As their airways are still so small any collection of yucky stuff almost gargles In their throat So I have to be careful   I’ve found motherhood to be full of constant juggling acts and this is one of them   I took both boys on Friday and GP was very good and thoughly checked my boys over. However, on Friday night those coughs became worse and started sounding like a dog or seal barking.   Amazing at 33 year old my first instinct was to phone my mum.   I’m a nurse for goodness sake   I should know this.   Mum was quick to reassure me that I’m an adult not a child nurse plus it’s always different when it’s your own.  So the thinking was it could be croup

So this weekend was a wash out.  Poor hubs didn’t get to have a break from work as he was constantly busy with boys. Using the bogie sucker on their noses, giving them steamy baths and applying snuffle babe to ease congestion.  Again it’s was a constant struggle of “OK should we go to out of hours now?” In case you are wondering why I wasn’t doing my bit it is because I have a fractured humorus and well to be frank I’m useless and can’t look after myself.

So the weekend is over in a flash and the feeling of nothing constructive being done haunts me.

 

As as long as my boys are ok that’s all that matters.  So here is to a better healthier week.

Love and happiness

scottish twin  preemie mamma

x

 

 

 

 

 

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