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!!!! 

My heart aches

I have a heavy heart this evening as tomorrow my daughter will be having an NJ tube put down and will be on continuous feeds…
Why a heavy heart I hear you say, well you asked! 

My beautiful girly has fought for her life from week 14 pretty much, she’s done so well to get through Nicu to only leave on a small amount of oxygen, until it all went wrong a month after she got home. 

She started to refuse bottles so wasn’t gaining much weight and then ended up with an NG tube which she was fed via, however she was then being violently sick so still wasn’t gaining enough weight so we ended up in hospital and after a month of faffing and getting no answers we are left with the NJ tube to hopefully be the solution to all her problems including her increase in oxygen…. 

Basically, she’s exhausted, I’m exhausted, daddy’s exhausted and we just want to be a family. She doesn’t deserve all of this. So many prems leave NICU Scott – free which then makes me feel like it’s my fault as a mum. Why us? I just wanted to carry her for a while longer so that she wouldn’t have these problems. I just wanted a normal pregnancy like most of the population get. I don’t want to be told by doctors not to have another baby but I also don’t want to hurt another baby. I’m stubborn not stupid! My heart aches for Squishy!

I wanted so many things for both Josh and I and it makes my heart ache. Our daughter is beautiful and I love her I just wish things could’ve been different! 

Ashamed 

Today I have hit my absolute rock bottom and I’m ashamed to be me…
My gorgeous girl smiles at me with the biggest smile and all I feel is guilt, sadness and ashamed!! 

I was given another chance to breastfeed her, I put my all into! I drank and ate so much everyday I thought I was going to pop and Lydia worked hard to make my supply what she needed and now it’s been taken away…. it’s like the doctors don’t understand were human… I now have to feed her as well as somehow decrees my supply again or even get rid of it (I’ve not yet decided) without getting poorly! Gee thanks and I won’t even get started on the emotional side of breastfeeding! 

I’m ashamed of myself…. The one thing I wanted to do for her and I can’t, all I’ve done is let her down! Again! 

I’m pretty much useless and I’m sorry about that baby girl! 

I will not bow!

I recently re found the love of my life in the form of breaking Benjamin *disclaimer I don’t mean maiming my brother they are a band* 
I found them just in time as they have this gorgeous song which sums up my hospital experience with Lydia. It’s called I will not bow and the bit I have been singing to myself is this and I shall explain why in a moment 

“All is lost again, but I’m not giving in! I will not bow, I will not break, I will shut the world away. I will not fall, I will not fade, I will take your breath away.” 

I felt completely broken to be back in hospital with her when there is obviously nothing wrong, the doctors haven’t found anything but refuse to let her go and then yesterday we had a visit from possibly the most unpleasant doctor ever…. He was from gastro.

Up until this point I’d gone alone with the doctors and their theories and nodded as I agreed, yet again, for someone to hurt my daughter for no reason and finally after 3 weeks we’d broken the doctors down and they started to consider home for us (yay) 

Anyway back to yesterday. Things were looking up oh finally (paramour quote for fun thrown in there) Lydia was doing a 24 hour oxygen download to see if she can come home on 0.3 and more tests were negative but then BOOM in come a black cloud at half 6 talking about peg lines, how there is no way she can go home, 2 hourly feeds and my favourite how he’d ‘read’ her notes. 

Now don’t get me wrong all the doctors so far have aimed to get us home and have really tried hard to find whatever they could in the first 2 weeks and then this ‘doctor’ saunters in on week 3 and decides he wants to put his 2 pennies worth in. Luckily the super husband was with me to bash him down a peg or two and explain we are going home next week (hopefully but we didn’t want him to think he had us) and if you wanted imput you’ve had 3 weeks to do so. 

I’m not one to get a bit argumentative But after a fair amount of disagreeing with him he then decided to say

‘What do you think makes her sick’ 

I then proceeded to explain how it’s the NG tube as we went through this in nicu and if you read her discharge notes it’s all in there. To which he went quite and explained again to me how it’s 99.9% unlikely to be the case….. 

Okay, I understand I don’t have a degree but I grew up in hospitals, I’ve now been through NICU (even the nurses joked I’m qualified enough to join them) and I’m starting to believe that mothers intuition is a real thing because everytime I’ve said something I’ve been right so ultimately I will not bow to this man, he can try and break me but I’m ready for a fight! There’s no way he’s putting a pic line in a perfectly healthy baby just because she’s sick after feeds…  not a chance!!! 

I’m here for you Lydia, me and your daddy will fight for you until we are blue in the face if we have too, just keep fighting for us baby girl… those wonderful feet have places to go!! 

It doesn’t go away

I was naive and I’ll admit that, the day I put my baby in her car seat and we were coming home from NICU I thought we’d left the hospital behind, well I thought we deserved it but in less than a month of being home guess where we ended up… you’re right, in hospital!! 
I was fed up to say the least I did my kicking and screaming blaming every man and woman that walked the earth and then I accepted her fate. 

So here I am, 2 weeks in, 8 million grey hairs, no answers and suitcases under my eyes! What did we do to deserve this! Lydia is missing out on daddy time and daddy’s missing out on lydia time and it breaks my heart because they love each other and need that bond to form and selfishly I need someone who can hold her for a few hours so I can wee and have 2 minutes to stretch….

This has just been another test thrown our way and we’ve tried to make the best of it, today we had a picnic on the hospital grounds in the sun and went back to the ward where she was nearly born so we had a lovely day but then Josh had to go home…. NO I’m done with this separation I got married because I wanted to be with Josh forever (and because he is sexy) so please let’s leave the hospital and have a life together as our family.

I’m ashamed to admit I’ve nearly given up on Lydia a few times and I’ve hit that point again today as they changed her feeds to 3 hourly which means 30 mins of fussing and feeding then 10 mins trying not to be sick but she usually is then 10 mins of  cuddles and calming, that leaves me with 2 hours sleep before I need to wake up to do the next feed and do it all day and night… insert zombie mummy here…. 

I’m tired of it all I’m not going to lie, I want my baby back, I want my husband back but most of all I want the joint parenting responsibility back, I love lydia but she’s getting big and I can’t hold her all the time but I have too when she’s stressing, Josh and I co parent and I miss that! 

I feel very alone right now and know we won’t get to be home anytime soon so I guess I just have to deal with it…..