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! 

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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. 

Discrimination 

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!

Nostalgia 

A year ago I had no idea that my body was creating a miracle.
I distinctly remember feeling completely exhausted this time last year. I was going to work, coming home, prepping dinner (if I could pre prep) and then locking myself away with some tv series (I think it was reign) but then I’d remember waking up 2 episodes in and thinking well that wasn’t the plan… plus I’d then fall asleep around 9pm! I wasn’t hugely worried as I always had been a bit of a sleeper. It then dawned on me that a certain monthly visit was a bit late, not worryingly maybe a few days so again I just kept plodding along but then Josh and I needed to go shopping for milk and nice things for a movie day and I threw out there that maybe we should get some pregnancy tests, in the most casual way possible. I tried not to get him excited over the idea so I was a bit like yeah just incase you never know and then 3 days later on a Saturday morning I was like I need to know (I think it was about 7.30 as Josh had just left for work and I knew no one else in the house would be awake) I took the test and there it was a very strong positive line… utterly flabbergasted I went back into the room and I sobbed! I sobbed my heart out! I was happy, excited, terrified and shocked… We were going to be parents, my body had manages to start forming a human! I also didn’t get too excited for fear that I wasn’t strong enough to carry a baby.

So there I am processing all this information without Josh (don’t worry I tell him nicely) and then think I can’t text this kind of thing that would be awful but I also need him to know. So I text him and ask if he wants to go to the moors after work (our favourite past time) as I want to play with my new camera and it has been a nice sunny day. He agrees and we go about our days however I was a million times more cautious. I cleaned the toilets but casually was like hey boo I forgot to put bleach down them could you and I kept windows open when cleaning but I tried to be so subtle so she didn’t click.

Anyway Josh got back we went to the moors and we sat there chatting then I gave him a present (it was a baby sleep suit) and as they say the rest was history! He was over the moon and terrified (had we have known what was to come we’d have been a lot more terrified) 

I look back on that day often and think that’s when life began for us! I found out I was pregnant. We then got approval for the house. Then a move in date. For a short while we were the happiest couple growing their family.

Now we’re the happiest couple waiting and fighting to get their family back!!!! 

Final shout out to my 5 week old baby pooch and nose in the picture but it’s one of the few I have of my pregnancy. 

Crying 

Oh how I used to get irritated when Lydia would cry because I’ve put her down or just because she could…. how I used to wish she would stop for just a moment and give me a break! 
Now I take that all back! Yesterday between extubation and re incubating we got to see her on cpap and she cried (it was very quiet and froggy sounding) but for the first time 9 days I heard her cry. It broke my heart but it was the most normal thing she’d done in such a long time. She had tears down her face and her bottom lip wobbled, together we sobbed! She was in pain, sad and fed up and I totally knew how she felt.

I held her on the same day after they re intubated, she layed in my arms and sobbed, no amount of consolation would calm her. She was telling me that she’d had enough as well! 

My poor baby has suffered so much and hasn’t deserved the life she’s been given however she is the only one strong enough to live it. She fights day in, day out to get home to us and we fight with her! 

My super strong princess! 

Intubated 

We need to intubate and paralyse her as she’s working so hard to breath. 
Oh hello sentence that knocked me off my feet, well hello day that knocked me off my feet. 

Today started off like any other morning with a ward round however there was an old familiar face who was Vicky Olson who looked after me, from a respiratory side of things from 14 years old, and here we are full circle as she looks after Lydia. She could see Lydia was struggling a lot so wanted to help her but in the space of an hour we went from safe in Derriford to being told that Bristol children’s hospital want her asap.

We were given a few hours to go home and get some clothes in a bag and just generally be ready to travel before the watch team arrived. They wanted to transport her on a cpap face mask however she got too distressed and they decided that if not now then they would probably need to intubate in the ambulance on route. They were am amazing team who warned us that she would have a tube down her mouth and an extra tube out of her other nostril, however before I even saw her I was in floods of tears, the tubes were horrible don’t get me wrong but the main thing that upset me was the sedation. She was just a body lying there staring…. I cried, I just cried until I was out of tears. I was guilty, I was sad but most of all I blame myself for what she’s gone through. Right now the doctors think she’s has ILD which cannot be passed on generically, however my mum had it and so do I…

I hurt my baby! 

The next step of the journey was horrible as she was in an ambulance and we were in the car. I was clinging to my phone like my life depended on it just to know if she was safe and well still… I felt sick the whole way there 

When we arrive they’d already decrease the rock with the plan to get her off the ventilation and finally at 1am we had somewhere to stay for the night and we were both so shattered that we we were knocked out until morning (well I still kept waking up but I was used to Lydia waking me up so my body is still in mummy mode) 

She knows how to panic us!! 

Missed out

As a child who is different physically, the one thing you will hear when you are an adult is the phrase

 ‘oh so you missed out a lot then’ 
I used to agree and get quite upset by it as the reality is, yes, I didn’t do sports day, I sometimes didn’t leave my bed for days on end due to pain, in fact I barely attended primary school due to hospital visits (planned and un planned) and just the pure amount of pain and now as an adult (apparently) I’ve started hearing the phrase again however its now been about getting married young and then having a NICU baby which again made me list the things I missed out on, uni, dating loads of people (why when you’ve found the one) a baby shower, looking pregnant, a less utterly terrifying labour… just to name a few but in the last 24 hours I’ve taken a stance on it! 

I didn’t miss out on anything, I’ve gained so much more than people know! 

I have gained patience and how to make the most of a bad situation, how to put a smile on my face when my whole world is crumbling around me, I’m basically a fully trained NICU nurse, I have had an extra 3 months with my daughter and now have an unbreakable bond! Not only that I believe we are an unbreakable family, we’ve gone through so much and still love each other dearly at the end of it… I’m lucky and very blessed. 

I’ve gained more than I have missed out on!!!!