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!