It’s MY life 

I’m suffering with massive amounts of jealous-itus (that badly I’m making up my own words) 
I’m seeing people with their babies outside the hospital and thinking whys that not mine?  I see people come through cau moaning about the last 24 hours in hospital… really try 6 month’s solid… I dreamt of going Christmas shopping with Lydia and getting presents for daddy, grandparents, aunties and uncles but most of all I wanted to take her to my mums grave. I wanted to tell her at the cemetery about the lady who fought her whole life just to spend one more day with us. About the lady who watched over her diligently in picu when we weren’t allowed to stay with her. I want to teach her. 

Then I snap myself out of it and think no this is my life. I see all these people living the dream, but, do they have a miracle? No. Do I? Yes.

I’ve missed out on a lot of firsts with Lydia that have been replaced with first echo, first brain scan, first canula, first IVIG… All of these are not the first I wanted her to have but I’m grateful that I get to spend time with her every day. 

Don’t get me wrong the idea of might not getting home for Christmas is literally killing me and has had me question what I’ve done wrong to deserve this but I also feel that way for Lydia, what had she done to deserve this… she wants to be on the sofa with mummy and daddy as much as we want her there! 

I guess this blog post is for me to say buck your ideas up lady, your baby is alive and well so deal with it but it’s also a message to say don’t take your kids for granted I’ve seen just how quickly and easily you can loose them



Husbands are the poor guys who are always at the tail end of a woman’s ridicule.  
“Oh your husband does the washing, send him over to train mine.”

“Men they just can’t multi task.” 

I’m here to stick of for those men, more importantly, my husband. 

We had a fairly normal dating life, nothing extravagant, just talked A LOT, like an unhealthy amount so we know everything about each that their was to know about 6 month’s in and then boom! He shocked me by asking me to marry him. To which I was over the moon and said yes. Shortly after we were married. Then we made an even more grown up step and just over 1 year of marriage we’d mortgaged a house and fallen pregnant  (badly timed but these things never are timed well) 

Then it all went belly up, I caught pneumonia, hospitalised, Lydia was born early, both in hospital, then just Lydia in hospital, home, hospital again, Bristol hospital and then hopefully back to derriford…. 

If you read that and you think oh poor girlie’s but actually this is a shout out to Josh Eg Daddy

He’s been our rock and the one driving to and from the hospital, the one getting it in the ear from work, the one who at one point had no one healthy enough to be at home with him. 

Then he had it all for 3 glorious weeks as family where we could be normal (ish) and then again it’s taken from him and he has to come to hospital again to see his family…. 

Though this all has he complaine? Nope not once.  Has he blamed me? A million times no. Has he just supported us through everything. Definitely a giant yes! 

Josh is super man. I couldn’t be prouder to be your wife! Thank you for your love and support!! 

It’s okay

Two words I’ve uses more than I could ever have imagined to both my husband and my daughter. Most of the time it’s been a lie. I never knew if it was going to be okay but it gave some comfort to my family to hear the pessimist be a bit optimistic. 
Recently in PICU I said it to my daughter. She was ventilated and coming off her sedation so she was more aware of her surrounding. This scared her. It would scare you. One minute you’re having cuddles with mummy and the next you have a tube down your mouth in a weird hospital. She know us but didn’t smile, a skill she had learnt just before being intubated. After weeks of agonising separation one of the nurses said we could have her our for a cuddle. As lovely as this was it was daunting as there wasn’t a part of her without a tube or wire (more than when she was in NICU) but I was desperate to hold my baby.

The whole time I held her she cried. Completely poured her heart out, which hurt me. I couldn’t do anything. I cried. I really didn’t know what to do! I just held her and told her it would be okay full well knowing that we had no idea if she would even come off the ventilator. I also thanked her for fighting so hard for mummy and daddy. Then came the hardest thing I’d ever done  I told her if it was too much we’d still be proud of her but we are more than willing for her to give up and have a well deserved rest with her nana, great grandad and faith (to name a few).

She was suffering and she was telling me how hard it was by sobbing in my arms. She was crying with no sound. Only tears down her face.  

This moment stands put to me more than ever as shortly after that she made a huge recovery and came off the ventilator. 

As a family we’ve given so much for each other. That can never been taken from us. We’ve fought literally for our lives and we’re coming out the other end stronger and more exhausted than ever but we’re the strongest family you’ve ever met. 

Lydia thank you for fighting for us! We cherish every precious day with you and will try to give you a safe and easy life full of love! 


The Green eyed monster that consumes your life never had control of me. I always felt sad about not being normal but I accepted quite early on that this was to be my fate, until, I met the wonderful Josh who bought so much colour and joy into my life. Things started to go right! I was on meds that’s controlled my arthritis and I had very little side effects (it was just toxic and I was ill for a day or 2, manageable) 
Anyway we then did the crazy in love thing and got married and then we were stupid… We made a baby! Whopps!  

Anyway Lydia ended up being prem and left NICU a week or so after her due date with oxygen and then had weight issues when she got home and ended up with an NG tube and then after still no weight gain an admission onto hospital after 3 weeks at home… The jealousy started to take hold at this point as we seemed to be the only ones admitted after we left and as things got worse I just became sad, I carried a black cloud around everyday that became my safety net. 

Then we ended up in PICU on bristol, however through all of this I was numb, I stopped feeling anything, happiness didn’t even come into my vocabulary until I dug so deep it hurt. 

Finally we made it onto a ward but this is where jealousy has warped my life, it has such a huge hold on me… I’ve seen people go home, not only from the wards but from PICU, people who arrived after us.  You watch them leave and you stop feeling happy for them. I mean don’t get me wrong I’m grateful that Lydia is alive and well as that nearly wasn’t the case but I want something positive, for her and for us as a family. 

Plus who knew you could get jealous for your child. I see all these pictures of fb of babies with their parents at home or even full term pregnant ladies and all I want to do is sob. My baby was only home for 3 weeks and even them we didn’t get to enjoy them as she started to refuse bottles and we had outreach on our door every 3 days. Her only baby pictures are tubes and wires and I don’t see her being without tubes for a long time to come. It’s jealousy for her, as although she’s too young people will judge and people will stare and I hate that. She’s my precious girl who has done nothing wrong except for carry my genetics (which the guilt will never leave me) but she’s perfect and has fought harder than most to be here… For me! 

I don’t know what her future hold, it may be oxygen dependency or surviving crippling dodgy looks as she gets out of a disabled space as she “doesn’t look disabled” I have no idea but I can only hope she’s better than me and can battle the green eyed monster better than I have!

I’m proud to have the honour to be the mum to my tiny miracle!  

Dear friends and family 

Please don’t just read this as an over protective mums plea. When you see what we’ve seen I think you’d take these precautions too!
Premature babies, especially micro premmies like Lydia, are premature in every sense of the word. All of them is completely underdeveloped and had to develop in an un natural manner out of the womb. 

A huge milestone for lots of premmies is to be able to breath on their own as many are supported straight from birth, Lydia was ventilated for an hour and then was straight onto cpap and then oxygen. Due to their lungs being so small many premmies remain on oxygen until they have caught up with children of their age. With their lung being small until this point they are more vulnerable and susceptible to germs. 

Secondly, during the last trimester a baby gets all the antibodies it needs to help it’s immune system develop, however Lydia only had 4 days to do this before she self evicted. Naturally this means that she has a weak immune system and is at higher risk of developing and infection or illness.

Finally, SAVI. STING associated vasculopathy with onset in infancy, just adds another level of complicated to our little trifle! SAVI is a disorder involving abnormal inflammation in the skin, blood vessels and lungs. In Lydia’s case the SAVI affects her lungs, she has wide spread lung damage known as interstitial lung disease which can lead to scar tissue in her lungs and difficultly breathing. It also affects her immune system, she is immuno suppressed to help control the inflammation, which is her body attacking itself.

SAVI combined with prematurity is a recipe for infection and as we now know, the smallest thing that’s not dealt with correctly can quickly cause her to go down hill and need intubation to recover. 

We know you love her and we love you, that’s why we put things in place to put our daughters best interests first. We want her out of hospital and as healthy as possible. We want you to visit but be honest and take the precautions as we ask.

Please don’t take offence if we;

1. Ask you to wash and sanitise your hand (especially in the winter months)

2. Decline social activities  (germs cling onto us as well so we have to be just as careful)

3. Do not smoke around or before visiting (3rd hand smoke is really dangerous for such tiny lungs)

4. Finally please don’t be offended if we have to deny you a visit because you have even just the sniffles (we really can’t risk it)

We know these things seem a pain and unfair, trust us we don’t want to wash our hands that much either and we’d much rather leave the house for a get together and we’ve heard it all before (and initially believed) that babies need to be exposed to germs, yes they do to a point. However over the winter season (or to premmie parents RSV and bronchiolitis season) we are going to take extra precautions. Selfishly for myself also as I need to be as healthy as I can to look after Lydia or at least to survive a hospital stay again (if necessary) without catching something myself and triggering my SAVI.

We know this is different for you and not what you expected, we feel the same. 

We love and miss you but we are un willing to risk our daughters heath! 

Fresh eyes

I feel like I’ve done a lot of wo is me, my life’s tough style blogs recently and in all honesty my life is tough, however, I’m not belittling what we’ve been through but life is what you make it therfore I’ve decided to look at our experience in a whole new light.
I nearly lost my baby girl before she was 6 month’s old… In fact I nearly lost her 3 times! Yet the most recent scare has made me realise how blessed I am to be able to hold my baby. 

I appreciate how matter of fact I may seem about this but I honestly didn’t expect Lydia to live. I knew the statistics of premmies, the numbers and because of how poorly I was I saw her chances weaning everyday I was getting weaker. However everyday for a month I heard that tiny heart beat pounding away safe in my tummy but I knew in my heart it was only a matter of time before she had to be removed for both of our safety. When she arrived it turned out to be the best thing for both of us as we thrived. Both of us were getting bigger and stronger! This was my first glimpse into the simplicity of life, of a greater beings plan because if she wasn’t ment to be here she wouldn’t have survived the birth! 

The second time was RSV. We were really stupid and looked it up on Google. Turns out it’s a massive killer of premmies but Lydia fought that off in about 2 weeks… now try and tell me she’s not ment to be here…

Finally (well the last time for now) was the most recent one where she had to be intubated and paralysed and transported to Bristol. We had no idea of the severity of the situation until we arrived here and we were told that it was a miracle she was breathing on her own, any longer in derriford and she probably wouldn’t have made it. 

Now look me in my face and say little Lydia isn’t the biggest of miracles that has ever graced this planet! 

We know how lucky we are and sometimes I believe we’re luckier than most as we know how to truly appreciate Lydia as we’ve witnessed too many times how fragile life is but we’ve also seen the fight that can be found in something so tiny. 


Okay do that might be a bit of a strong word but I’m feeling frustrated!
So far people have been lovely to me in Bristol and have just treated me like a parent however today I meet the only two people who make me sound like an incompetent cripple and it really, really angers me…. 

My favourite quote was well I see you with oxygen and can’t imagine you can do much… WOW! For working in a children’s hospital just wow! And ‘I’ve seen you walk and you walk quite slow’ well firstly I have small legs that I’m trying to gain muscle back in from being bed ridden for 3 months (not forgetting sofa bound before that) so excuse me if I take my time and secondly I’m dealing with hell of a lot emotionally and physically so walking quickly isn’t my priority. Finally, maybe I just like to take in the scenery…. 

And to the SALT lady who doesn’t believe me that Lydia will refuse bottles, well just you wait and see! Plus how dare you question my supply and say I can breastfeed for comfort… I have enough milk to satisfy my baby don’t take that away from me as if I’ve not had enough hits already! 

I’m here for my daughter at the end of the day, if you don’t think I can do it that’s your perogative but I’ll tell you that I manage and not only that I do it WITH oxygen. The oxygen doesn’t hold me back it just means I’m a parent with a bit more on my plate and you know what, keeping Lydia safe at home will be the easy bit. I don’t need adaptations made I’m going to get stronger for Lydia and not need oxygen anymore, see where you stick your discrimination then!!

Anyway there’s a high chance I’ve taken everything they’ve said the wrong way because I’m exhausted but I’m grateful for the chaplain lady who came to see me and just say nice things about Lydia, that’s what I need in life. 

Oh and a final thing, I dare you to walk a mile in my shoes… let’s see how far you get!