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!! 

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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…..

Tour de Derriford 

Over the last 7 months I’ve got far too up close and personal with derriford hospital…. here’s how it’s gone:
Assessment ward (1 night)

Hexworthy (10 days)

Home (2 months)

A and E (couple hours)

Rusus (couple hours)

Assessment ward (couple hours)

Hexworthy (1 month)

Delivery suit (14 hours)

Hexworthy (2 more months)

NICU (3 months)

Transitional care (1 week)

NICU (1 more week)

Home (nearly a month) 

Woodcock ward (a week *so far)

That had been my journey and I am sick to death of this place, especially now I’m here not for me. It hurts seeing my baby be poked and prodded I wish I could take it all away from her. 

The main reason I thought about writing this is that with all the care and treatment both lydia and I have had, we would be rolling in debt if we had to pay! I’m so grateful for our free heath care and the amazing staff I’ve met along the way although now I’d quite like to stop making friends with nurses!!