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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 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

This time last year…

Well the above picture showed up on my memories notification from Facebook.   I swear it was like taking a swift kick to the gut, falling down and without chance of catching my breath taking another hard kick.

 

I remember very very clearly this time last year when I had started with what I called tightenings across my belly.  The fear of what it could mean swept through me   The 5 weeks previous to this I had been in and out of hospital so much that I was lucky if I got to spend 2 solid nights in my own bed. Most mothers to be have a grab bag ready for when their little one arrives but I had a grab bag constantly ready for when I had to go to triage at the local maternity hospital for the complications I was experiencing. TMI coming up but 5 days before my boys were born I passed tissue that could only be explained as looking like chicken skin.  Even the nurse inside me took the boak looking st it.  My poor wee dad took me up to hospital knowing very well what pathological delights I kept in my bag. After an internal I was told it was ok to go home.  They would send the tissue away for biopsy but they thought it was a fibroid I had passed.  Keep in mind 2 different consultants came in for a peek and were left flummoxed as to what this tissue could be.  I think this worried me more than settled me.

So it’s Friday, 20/2/15 and I’m on my way home. The tightenings were still happening and felt more like a period cramp at this point. I wasn’t too concerned by this as every time I had an internal examination I felt this level of discomfort for a few hours or so after. However, by 1am on the 21/2/15 I was pretty much in denial that this could be the sign of early labour. By 8am that day my hubby wanted to take me to triage again. I was adamant I wasn’t going in again.  I had only just got home. My family were exhausted from the visiting hours and I really missed my cats.  I know that sounds stupid on the grand scale of things but I am literally the crazy cat lady and I love my furry boys so much. I knew when babies came along the cats wouldn’t be able to sleep in our room with us anymore as it just wouldn’t be safe.  Still made me sad though. It wasn’t until maybe about 10am when my hubs pointed out to brace myself as I was just about to get another bad pain that I realised they were coming with some regularity as of course said pain started.   After this I started timing between the tightenings – told you I was in denial so they weren’t contractions but simply tightenings. As my hubby had rightly said they were coming 10 mins apart. I still refused point blank to go back to hospital yet again. Over the course of the Saturday they spaced out then would go back to 10 mins. By the Sunday my husband was losing his mind and quite point blankly said I could go to hospital of my own accord or he was gonna pick me up out me over his shoulder and carry me to the hospital.  I could tell by his eyes he was serious so I reluctantly gave in stating that if they keep me in again not only was I not speaking to him but we were done. Finished.  Getting a divorce – ok so maybe I wasn’t my most rational at this point.

Of of course they kept me in, discovered I was 1 dilated and my cervix had shortened. They said I wasn’t in labour so not to get upset but as a precaution they were going to let the neonatal icu know what was happening and they immediately moved me into the labour room that had those 2 beasts in it that you see above. They even had Twin 1 and Twin 2 written on them. Eh thanks very much for freaking me the hell out at the very same time you are telling me to stay nice and calm. They started me on magnesium sulphate drip which for the first 15 mins during the bolus dose you literally feel like you are dying.  It’s also a drip that is given over 24 hours so it’s no easy feat. Of course I received the steroid course again to strengthen babies lungs.  I was first given this injection when I was only 23 weeks pregnant.  I had a Russian doctor tell me there was no point to it as babies weren’t viable – please note I HATE that word and that the babies would simply die. From that moment on I not onlyhated the word viable but I hated that bitch.  I realise for some of you this may sound extreme but at that time nicu was full so they were looking to transfer me to Dundee. I live in glasgow which is hundreds of miles away.  Come to think of it 1 year on I still have a strong dislike if not hate for this woman but don’t worry the next day I reported her lack of bedside manner and I asked that she no longer took to do with any of my care.

So to say the picture above brings back loads of memories and not of the good kind is a massive understatement.

Stay cool.

 

Scottish Twin Mamma

x

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

 

 

Pictures of Lewis and Logan

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