SCBU Part III - When our little bear met the Tiny Lives bear

This is third part of my blog about our baby Islay and our experience in the special care baby unit. This one focuses on the charity I am raising money for, Tiny Lives Trust.

The first time we came across Tiny Lives Trust (TLT) was on the special cars baby unit.. We came back from having a costa coffee break and found that one of the nurses had put a small bear with a TLT t-shirt on it in her incubator. A lot of the other babies had teddies and keepsakes in their cots and incubators and we hadn't done that yet.. I think I was still in shock and just scared. We asked a nurse what this was and she told us all about the wonderful charity.
 

Looking back it was clear to see what they do to support the unit and at the time I just thought that it was a great unit but didn't realise how much they do.

For me personally one of the big things was helping with breastfeeding. When I was pregnant Gordon and I had discussed how we wanted to feed Our future baby and decided on breastfeeding. I said that I could probably express some milk sometimes so that daddy can do a feed but I was sure on my decision. Let me just say that I don't have anything against formula (and in fact her first feed was formula) but it was a choice I made.

But when she was born, It was clear that she couldn't latch.. Apparently it's a skill that babies develop later on in the pregnancy.. Who would have thought! We actually ended up trying for 16 weeks before I stopped but in SCBU they encourage you (if you wanted to already) to try and BF and also to express milk.. They have a dedicated room for it. I used to either use that room or do it on the ward and trot along to the ward after each time (2-3 hours) to give the staff the liquid gold.. And I would give it to Islay through her NG tube.. Such a proud moment! The staff were incredible.. They were so chuffed for me when my milk started to come in.. Even when it was only 10-20ml.. They treated it like it was the most precious thing and really kept my spirits up! Expressing is a hard choice.. It's hard to express when u are out.. It's hard when ur baby wants to be held and all u can think is about the pain because u haven't expressed for the last 2 hours.. The first few months were very tough. There were many times when I wanted to give up but for me I was determined.

I managed to express for almost 2 years (she was 2 last week) and I'm proud of my achievements. It made me feel a bit more of a 'normal' mum from an experience which was far from normal! TLT started that journey for me.. I left SCBU with a hand held breast pump funded by them and without that may not have gone down that route!

They do much more than that.. They provide comfort aids for babies.. Little nests for them to sleep in and weighted things to make them feel comforted as possible whilst not being able to be held. 

They also fund miniboos. These were incredible.. We got two.. They are like little towelling dolls.. I wore one on me and Islay had one.. I would swap them over every time I saw her and they would transfer her and my smells between us.. It really helped to make us feel closer when holding her was simply not an option.. They also helped to bring my milk in! :) I used to let Gordon have one sometimes as well once my milk came in so that he could feel that special bond with Islay too! :)

Even after leaving the unit, we continue to be supported by them.. We got to a buddy group for parents of SCBU babies.. It's like a play group.. All the children play and it's a space where we can talk and celebrate our children's experiences whilst swapping advice on which consultant is good (or not.. Lol) I love my SCBU family and wouldn't know where we would be without them.. They get it and I love that. I love that I can message any of them at any time and in fact a lot of Islay's friends at her party were from that group.. They truly are all amazing .. Both the children, their siblings and their parents.

These are just a few of the things that TLT did for us.. There are so many more things they help other parents with so please do check out their website! http://www.tinylives.org.uk/
 

Thanks for reading.. Pop back for further updates on my running.. I'm still running as slow as a stoned tortoise but I'm getting there!! If you would like to sponsor me and my running journey, please click on this link http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=365milestoseptember My goal is £365.. £1 for each mile I am running, so please help and sponsor a mile or two :)


Kirsty

Our little bear.. part II.. the SCBU experience

This blog post is a continuation to my previous one which if you haven't read you can do so here

Our experience in the Special Care Baby Unit (SCBU) started about 26 hours after Islay was born. For those who have been fortunate enough not to have been in a SCBU, there are 3 levels of care, going from most serious to least, its red zone, blue zone and green zone.

The red zone is for those babies who require very intensive treatment which includes ventilation and the sickest babies who are fighting for their lives. The blue zone is for those who require a high level of support form staff and intervention which can include complex procedures and the green zone is for those who tend to require assistance with less complex matters like feeding or those who are working towards discharge.

I am not trying to minimise anyone's experience of the zones and this is merely my impressions of what happens in each area.

Islay was initially taken into the green zone in an open cot and I was told that it was to monitor her feeding and to check on how she is getting on.. now I was panicked.. looking bad maybe other parents wouldn't have been so.. but to me.. 26 hours post partem from a horrible labour and a prem baby.. it was all a bit much.. it was such a relief when Gordon arrived. I was already completely drained and exhausted. She had some monitoring done (blood tests etc) but the nurse reassured me that it was ok.

Gordon ordered me back to the ward at about 2 in the morning with me almost falling asleep in the chair and they said that they would call me if anything changed and Gordon said that he would not leave her bedside.. I tried to rest but in a ward with other mummies with their babies and the worry I just couldn't. I went back 2 hours later and found that she had been moved.. she had been re-graded up to the blue zone and was suddenly in an incubator and had a lot of wires and monitors on.. she had a drip and was now under a big blue lamp with a visor protecting her delicate face, her treatment for jaundice. To me, this was devastating.. it felt like control had been taken away from my hands and things had very quickly turned. I was told that I couldn't hold her. Being told that is a feeling I wouldn't ever want a parent to feel.. all i could do was sit by the incubator and put my hand through the little windows on the side. That day.. I remember crying.. ALOT!!

Minutes.. turned into hours on the ward.. we were now in the SCBU bubble.. a world of unknown feelings.. unknown outcomes.. listening to the rhythmic noises coming from the monitors and then the occasional excessive beeping when a monitor fell off one of the babies. It was a world like no other I have ever experienced.. and wouldn't want to again.

The staff were all incredible.. one thing that struck me was the positive but realistic answers you got from the nurses and doctors on the ward.. any issues you had they would sit down with you and explain.. any procedures.. they would tell you the reasons and the possible outcomes.. I knew that she was receiving the best care but at the same time I constantly had the overwhelming urge to pick her up and run from the ward.. I just wanted to protect her and I felt like I couldn't.

We had 24 hour access to SCBU and I was still an in-patient on the ward so each night Gordon would go home and I would keep going back in the middle of the night several times.. I couldn't sleep.. it was a blur of post partem emotions and trying to get through each day.

Islay was drip fed, treated by UV light for jaundice and then had a contrast x-ray whilst on the unit. They were increasingly concerned why she hadn't had a poo since being born and the x-ray revealed that she had meconium plug disorder and the bowel after the obstruction was narrowed meaning that she may need to have surgery. Staring down at a 2 day old baby with someone telling you that is another layer of emotion.. we were like onions with layers and layers of stress and anxiety and worry being added the more we were there.

Our experience was, and always will be, unique to us. It's our story.. it was our journey.. the three of us. The emotions of it won't leave me, the feelings of what happened.. the noises.. the smells of the ward.. of the nappy sacks.. the routines.. it stays with you.. thinking about it now can send me into a cold sweat.

Nothing that happened to us was 'typical'.. it was not how I wanted it to be.. it was not my perfect water birth with a bit of gas and air and that beautiful moment when you hold your lovely baby on your chest when they are born.. when they feed for the first time.. we had none of that. Our experience was scary.. it was stressful.. when we left SCBU a little piece of us was left there.. the walls of SCBU hold the memories of the parents and babies who have passed through... some there for a few hours or a few days and some there for months and months.. we all have a unique bond  and have felt those unknown feelings.

The point of this blog was not to put a downer on what I am doing but to explain, to allow people to explore what happened with us so that you can understand why I am doing what I am doing..

Part III will be about how the Tiny Lives Trust fit into our journey and what it is that makes them special.

Thank you for reading my blog and the continued support.

Our little bear.. part I.. the labour

Hello all,

I wanted to give you a bit of background into why I am supporting Tiny Lives Trust.

My little girl was born on 4th August 2014. My due date was 14th September 2014.

I started having twinges on the morning of 3rd and after a phone call with the maternity assessment unit, we headed up just to be checked over. I got hooked up to a monitor and told that Islay was ok and happy moving about. I was kept on the unit for a few hours because my pain was still there on and off and they wanted to monitor me. By mid afternoon (bearing in mind we had gone up just before 8am) I was getting fed up and tired. I hadn't eaten anything and so they suggested that we went to the cafe (if anyone knows the RVI they will know that the main cafe area is at the other end of the hospital.. a good 7-8 mins walk away.)

We sat down and had some food and I felt better although the twinges were still very much there.. and when we went to leave.. the most horrifically embarrassing thing happened.. my waters broke!! Now I (naively) thought that it was quite a discrete type 'oops did i just pee or was that my waters' type affair.. well.. let me tell u.. i knew.. i REALLY knew.. I waddled swiftly to the loos and hid for a while.. leaving poor Gordon for dust contemplating what we were going to do and how i was going to get back to the ward.

The plan was set.. we would run (I say that.. i could run even less when i was pregnant..) and try to get back there ASAP. Islay, however, decided that this was not the best option and so during our mad dash.. my waters just kept coming.. to the extent that i had to stop again at x-ray and run into their loos and shouted to Gordon 'I can't keep going' ha ha

He told the lady in x-ray that my waters had broken etc and she said and i quote 'eeee... this is x-ray pet, not maternity.'... like we needed reminding.. luckily for all of us.. someone got a porter with a bed and wheeled me back to the ward area.. I was scanned and told that she was head down and that they struggled to tell me her estimated weight because of her position. I was given a steroid injection in the leg.. the most weird and horrible feeling.. to try and help to develop Islay's lungs if she was born.

The doctors told me that they hoped that i would stop contracting and could be sent home.. the horror on my face i think was evident from space.. to me.. being taught everything i knew.. having watched 'One Born Every Minute' meant that I thought (and still think) that when your waters break, there isn't any protection around the baby.. his plan was to give me antibiotic injections and steroids everyday for 2 weeks and scan me to check that she was happy... the thought of this filled me with as much dread as the labour itself.

I was admitted onto the antenatal ward and told that i would be monitored.. the nurses were lovely but the doctor who was on duty overnight was very poor and just kept telling me that i wasn't in labour.. even though I was having pains.. I kept being asked the question 'are u having contractions'.. my response was always the same 'umm.. i mean.. i have never been through this before but i think so..it hurts..'

This went on all through the night and I can honestly say that i didn't sleep.. i paced the ward.. constantly asked the staff for pain relief although i didn't get any.. and kept having Islay monitored.. my window was facing into the ward courtyard and straight across from my window was an active ward where I could see nurses moving around a lot.. it was the middle of the night and pitch black everywhere else apart from these bright blue neon type lights.. i didn't know at the time what these were and i spent many hours staring out of this window through that night.. I later realised that i was looking into the special care baby unit not knowing at the time that my little bear would be in there with those lovely nurses who work hard through the night and under one of those blue neon lights in less than 48 hours.

In the morning, Gordon, hubby, came onto the ward for a visit on his way to work, dressed in his 3-piece suit.. it was only then that they decided that I was in labour and 6cm dilated.. this is where the fun began and we went round to the labour and delivery suite..

From there I had hours of contractions and gas and air as relief.. I couldn't have diamorphine because I have epilepsy and it can trigger it and I couldn't have that perfect water birth experience with it being high risk.. the hours passed without much notice and even when I was fully dilated... the doctor said that she wanted me to wait another hour before pushing so that Islay's head could come down further.. to my horror!! I thought I was going to be having her and then yet another hour to wait..

Incidentally.. I thought I would be one of those dramatic telly-esque ladies who screamed during labour and told their partners how awful they were to be getting into this situation.. lol.. instead I was completely insular.. probably through exhaustion, overwhelming pain and shock from being in labour and so sat very quietly whilst the midwife made Gordon tea and toast!! ha ha

My contractions decided to slow down when I started pushing and so the doc decided that I needed a drug to increase my contractions.. however, unfortunately.. Islay didn't like that and her heart rate started dropping.. and so.. without delay and too much stress from the doctors I was taken into theatre to have Islay. I had no idea what was happening although I had (thank goodness) been to the best antenatal classes where our teacher Linzy demonstrated what would happen in theatre and who would likely be present.. there really is a lot of people involved!!

Gordon told me afterwards that we were warned that Islay may not come out breathing or do the typical 'first cry' but I can't remember this.. I think I blocked out all of this and was in so much pain I don't recall it at all. He must have been really scared at this point..

Back to it.. within about half an hour of being in theatre.. Islay was born.. she did take her first breath.. wasn't purple and wasn't floppy.. in fact she was like a little tomato!! She was whipped away as soon as she was born to be checked by the neonatal team and ensure that she was breathing ok.. she was also taken away to the special care baby unit for an antibiotic injection and the first time I saw her she had an NG tube in.. not what you imagine and we didn't get the typical skin to skin time.. in fact none of it was typical.. which is a real shame!

That first night was a blur.. Gordon was told that he couldn't stay on the unit with me and the nurses expected Islay to 'just latch on' and me to know how to do it.. which was just not the case.. they kept saying.. 'oh she's prob just tired and too little'.. 'just try her at the breast'.. so blase.. cue 'mummy mini meltdown' when it wasn't a successful experience.. also being thrust into learning how to feed by NG on top and then actually know what to do with a baby.. on my own.. all very scary.. THEN on top of that she was being sick.. she was throwing up her milk after every feed without fail..

Initially.. the docs and nurses said that it was probably ok and might just be her tummy adapting with it being immature.. but then as the next day went on.. and she hadn't pooed (this is supposed to happen within 24 hours of a baby being born) we got visited more and more by doctors.. then at around 9 or 10pm on 4th August.. a doctor came in to see me.. Gordon had been sent home at 8pm and he decided that Islay was going to be taken into the special care baby unit.. now I say that in such a matter of fact way.. but when I was told.. it was as though my world was falling apart.. I know that others go through worse.. but for me.. this was my worst.. and then just to top it off.. the doctor said these words to me that I will never forget.. 'Do you want to just say goodbye to her?'.. I was like.. 'what??? are u kidding?? what are u trying to say' You can only imagine what was running through my mind.. I went round to the unit with her and immediately phoned Gordon to tell him who raced up on his motorbike to come and see us.. and so began our journey in the Special Care Baby Unit..

Part II coming next for our experiences in SCBU...

 

When life gets in the way..

I didn't take on this challenge lightly.. I knew that it would be a big commitment and that's part of the reason why I am doing it. I'm not used to running.. I'm not used to training or going to the gym and so this is additional to the rest of my busy schedule.. and sometimes life does get in the way.. this week has been one of those weeks.

After powering (in the way a tortoise would power through treacle) through the first few miles.. I hit my first stumbling block.. that little thing called life!! to me this blog is about the long haul for this challenge.. it's the good, the bad and the ugly (several running selfies)... so here it is..

I have been ill this week so I missed running club which I don't think set me off right.. It wasn't just a cold or wo-man-flu but a bug of some kind. Either way.. I couldn't go.

Also, Gordon has been away for 2 full days this week down to London.. I usually go for a run in the evenings after Islay has gone to bed but as Gordon wasn't about until late evening then I couldn't.. I mean I want to go for a run but not to run away from the boogie man (wait.. is it boggie or boogie.. I mean the scary one not some 70's dancing man with flares.. although that would be scary too.. lol) Anyway.. I digress.. so yes.. that's taken out some more of the week..

And then of course there is work..I don't just mean the usual workload or even more than the usual work load.. As some of you know, I am a mental health solicitor who works for Blavo & Co Solicitors.. and if you know that then you will also know that i LOVE my job.. I really do.. I don't want to make all you job haters out there jealous.. but its really true.. anyway.. so I work in the confines of the Legal Aid Agency and due to some issues, a problem with them has led to a notice about redundancies being made in my firm.. this has made me more than a little concerned and.. I admit.. panic and worry has set in.. my mummy and wife protective head has kicked in and I am trying to protect my brood.

I don't know what is going to happen with this.. and I am the sort of person who, when feeling overwhelmed.. goes in on myself.. I don't drink (I would like to but I am still breast feeding my little one) and due to her dairy and soya allergies.. I can't even swim in a bucket of Ben and Jerry's ice cream.. so there you have it.. its not a list of excuses... its the truth of this week so far.. but then something lovely happened.. I received a package in the post which was so well timed (Thanks Louise) which I am grateful for.

Tiny Lives Trust, the charity I am supporting sent me these..

Aren't they fab!!! The top one is a lovely t-shirt for me and also one for Islay.. the one for Islay will be too big at the moment but I will get a picture of her in it showing her support! And a running vest.. I was really chuffed that they had taken the time to send me these and it has given me some renewed vigor.. I need to pop them on and proudly and majestically (well maybe not majestically) go for a run and test drive the running vest!!

I will take a pic of me in it as well so you can all be jealous.. he he

So fingers crossed this weekend and the next week will be better.. I'm going to get out today and see if my new running vest makes me go faster!!

Thanks for all your support and keep thinking positive running thoughts please!! :D

Kirsty

362 miles to go..

Hello all,

The sports bra and trainers have been donned again and I have now covered 3 miles out of the 365 miles needed over the next 51 weeks.

When I first thought about this challenge.. I didn't really consider how far that was.. and now that I am ALMOST 1% there.. it seems very daunting!

My running log

I have joined a ladies beginners running club which is in Whitley Bay every Monday evening. The course is 10 weeks and the hope is that I will learn some new skills and learn how to run longer distances. 

I was really worried about going to a running club.. they fill me with dread that they may be full of the Mo Farah's and Paula Ratcliffe's of this world and these 'beginners' are only able to run a marathon a month... u know the types I mean.. However, I couldn't be more wrong.. I turned up with a lot of other anxious ladies leaving their cars like some sort of gazelle (yeah I wish) looking out for a lion.. being very cautious and looking a bit lost! ha ha 

The teacher is very welcoming.. she was very supportive and I found the class a breath of fresh air.. it was motivating and I was not out of my depth at all.. I managed to run the mile without stopping and was chuffed that running with the other ladies encouraged me not to stop.. it also helped with my feeling self conscious.. I always worry that I look 'odd' running or just like a fat lass having a go.. but not in the group.. it felt nice :)

And look.. proof that I survived.. 

woop.. first night of running club

Yes I appreciate that my face looks a similar colour to my top.. I have always been a bit of a tomato when I run.. and I sound like darth vader's asthmatic cousin but still.. 

I am going to try for another run tonight and get some more confidence.. I wish I could run more with my hubby but he has to stay home and look after Islay (our little girl) because its a bit late to have her out running.. that and she cant walk yet.. let alone run!! ha ha 

As for page views.. I am now over 1,000.. which is amazing.. the running community is certainly very supportive and I am very grateful for that. 

Thanks also to those who have sponsored me so far.. I have had one generous anonymous sponsor..so big thank you if that is you out their in blog-reading world.. if you haven't but would like to sponsor me then please click here :) 

And if you haven't checked out the amazing charity I am punishing.. I mean running for.. then please do.. it means a lot to me and my family and a lot of people out there :) http://www.tinylives.org.uk/ 

362 miles to go.. 

Go Go Go...

Well I can now officially say that I am off.. 

After not running one step for about 3 years or so.. I have taken the plunge and completed my first mile! woop

My first mile :)

I want everyone who's reading this to remember that i am NOT a runner.. this is not normal and my body has now entered a state of shock.. ha ha Incidentally.. the trainer spiders will have to find a new home in some other form of shoes I don't use that often.. maybe the summer sandals..(where did that summer go?!)

For those of you who know me well.. u know that I am a self conscious kind of a gal.. I don't like people staring at me.. doing things.. like.. oh yeah.. RUNNING! so to have to go out on my own (hubby was looking after a sleeping Islay) (I ran after work), with just my phone for company (I couldn't find any headphones) and my thoughts.. it's never a good thing! Especially when you see a group of charvas (radgies, chavs, ned, chavette or here for definition to help my international friends). 

I tried to look effortlessly graceful as I swiftly changed direction to avoid them! I managed it (the avoiding.. not the graceful bit..) 

Anyway.. back to the point.. my hubby has always told me that you should try and keep running even if its slower than a snail walking.. just the act of running helps your mental state and I know that if I try and walk for a bit.. getting going on the running part is so much harder! Please don't all run (loving the pun) in and say that my approach is wrong.. for a smaller distance like a mile.. I think it works.. at least it worked for me last night so that's the main thing. 

I am really shocked by the number of page views I have got so far.. it's amazing that so many people want to know what I am doing. 

If you haven't already.. have a click at the top of the page on the challenge bit or the charity bit and have a look around.. there is also a handy 'sponsor me' bit.. would be great if you could click that too!! ha ha 

I have had a couple of donations now.. woop!! So thank you for that!! If you would like to sponsor me then please click here :) all pennies appreciated!! I need to get to my target of £365 for Tiny Lives Trust

So, I felt ok after the run and today (I ran yesterday) I am still alive (yey.. go me!!) and not walking like I have been shot in the leg (bonus).. I might go out again tonight and see how I get on.. Just to say.. I don't record the warm down walking I do after I hit the mile mark or any I do before I start :) Just the main bits :) 

And so the countdown begins.. 364 miles to go.. 

  

Ready and set..

Today has been an exciting day in the planning of the challenge.. during my lunch hour at work, I trotted along to get kitted out.

I am now fully prepped.. got my outfits, my good trainers ( I have sent an eviction notice to the trainer spiders) and an excellent sports bra (a definite must for those of us in the bigger bust category!!) (sorry boys.. but they won't look after themselves.. ha ha)

I have been thinking about the best way to plan my training for my challenge.. 365 miles in 365 days is no easy feat.. the more I think about doing it, the more nervous I get.. I think I need to get the first mile out of the way and then I will feel much better..

I have joined a local running group for beginners which starts on 21st.. I have a gym membership ( I am planning on doing more fitness then just running.. need to tone those gluts up to thrust me around the course of the GNR!)

I have started to speak to some knowledgeable runner types on twitter and my friends who run and am also going to do ParkRun, which are local 5k's held every Saturday morning which are timed. I am going to keep logging my times and miles using an app on my phone called Runkeeper so you, and I can see the progress.

Timing is going to be the hard one. I work 4 days a week in a demanding job, have a 13 month old, and I am doing a distance learning masters in commercial law. So yes I am crazy.. yes it's going to be hard work..but I want to do this for Tiny Lives Trust because I am so passionate about what they do and to help them to support more families like ours.

Talking of which, I now have my sponsorship page up if anyone would like to donate.. its www.virginmoneygiving.co.uk/365milestoseptember
So far.. only my baby Islay has donated.. ha ha Thanks to her daddy and my hubby Gordon for helping her with that one! The donations are off.. and my target is £365. I would love to get to that before doing the GNR so please help me to do that

If you would like to follow me on twitter and give me some advice (all of which is welcome) then please do, @mrsarcticride

Finally, I am really chuffed with all of you who are taking time and interest in my blog. I have never done anything like this before and already have had almost 500 page views!!

365 miles to go...