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…..

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!! 

New beginnings 

New beginnings 

For everyone the birth of a baby is a new beginning, everything changes, literally everything especially having a prem. 

I’ve wanted to write this for a while but I could find the right words. 

Lydia I write this for you.

In August I fell pregnant with you, I was slightly worried but more than anything I was overjoyed, I was growing you in my belly and keeping you safe. I kept working and growing you for the first 3 months with no problems at all, you didn’t even give me any morning sickness! (Thank you for that) Then it all went down hill. Mummy got poorly and fast. I ended up in hospital with a bad chest infection so they thought and I was put on oxygen, only 2 liters, and was put through lots of tests, all of which I did my best to protect you from as I was 14 weeks pregnant and no one really worried about you in my belly so I just had to hope you were okay. I was then sent home 10 days later with oxygen for moving. I coped on that through Christmas and having your 20 week scan helped. Mummy and daddy got to see every bit of you, your heart, your legs, you blowing bubbles and I just grew to love you so much more. However less than a month later I was rushed into hospital barely 23 weeks pregnant on 15 liters of oxygen and still not feeling like I could breath! Again more tests were performed on mummy and I was filled with drugs until I rattled and all I could think about was you! My gorgeous baby who would get some of these drugs into her system because of me and if you were born you weren’t viable, the hospital wouldn’t have tried to save you my gorgeous girl and the thought of that hurt more than any pain my lungs were in. I feared for you, I cried daily for you and worst of all I let you down. 

Eventually we found out I had PCP pneumonia which I had from the first time I was in hospital but no body could find it. I hoped everyday I would get better and everyday I was one step closer to 24 weeks… Each day was a day safer for you! I had daily scans up on the hospital ward and there was a plan to c section you at 34 weeks as that would give you the best chance but you had other ideas. 

I was still in hospital on 15 liters and you were 28 weeks and 4 days and then you decided at 10 pm you were going to send mummy into labour, completely naturally you decided you were ready. However I wasn’t! I was rushed down to delivery with daddy and then at 11.59 you made your entrance and made this world just a little more beautiful! 

I didn’t know what was going to happen. You were born breach into a sandwich bag completely naturally, without time for pain relief  (good job your were little else I’d never let you live that down) but I barely remember the birth (ask your dad if you want more on that) all I remember, that still haunts me to this day is that cry you made as you were born! I couldn’t believe you were alive, it was a miracle! But then you were take away from me as quickly as you had been born. I gave you a kiss on your forehead and away you went. It took me days until I could see you because I was on the oxygen and you were in NICU but when I did see you I didn’t know what to do. You were crying and you were more wires and tubes than baby. I don’t know if you will ever understand (I actually hope you don’t have to) but I expressed at least 8 times a day for 3 months so you could get the best start in life but I spent most of my time expressing while in hospital which isn’t the easiest of places to get privacy as you can imagine! 

Finally I got out of hospital and then nearly 2 months later you got out of NICU! My beautiful baby girl, you put up such a fight in there and I am so proud of you… your daddy and I can never pay you back for what you went through to be with us. We don’t deserve you beautiful. 

I never thought I’d be writing this with you on my chest and the only extra support you need is a teeny bit of oxygen  (0.06 to be exact) and some high calorie milk (which you currently detest and try and guilt me into breastfeeding you every feed but you have a weight gain issue like mummy) 

Finally you are home having cuddles everyday! We can finally have our new beginning.

I’m so proud of you! I’m sorry I let you down and gave you a tough start to life, if I could have carried you full term I would do it in a heartbeat but selfishly I would do anything to have you because you are beautiful and perfect. 

P.s remember through all of this your daddy was incredible! He stuck it out, he came to and from the hospital everyday for 6 month’s to see both of us. He loves us so much sweetie and cooes over you everyday when he comes home from work. He won’t let anything bad happen to you angel!

NICU Naivety.

NICU Naivety.

Something all NICU parents suffer with is NICU naivety. This is where you see your baby with all these tubes and wires on them and you still think they will be home in a few weeks. The days grow into weeks and the weeks into months and you still cling onto the fact they will be home soon. 

Eventually most parents grow out of this and you just start to take every day you are given. NICU becomes home and you don’t even think about your baby coming home! However there are some people who you over hear who haven’t grown out of their naivety and they watch their baby desat massively on a download  (now from experience you know that’s a fail) and they still believe their baby will be home in a week but you don’t have the heart to burst their bubble and even though they are still there 2 weeks later they keep their naivety which destroys you as you know how much it hurts! 

I know the doctors mean well by giving you times you’ll be home but if anything it feeds this naivety and just ends up destroying you! We were told aim for your due date and now we are nearly 2 weeks past that and that hurts because I’m now missing out on time with my baby! All we can do is ask the right questions and take each day as it comes (plus think fatty thoughts as that’s all that’s keeping squishy in hospital is that she didn’t gain enough weight) 

I can’t wait to see what today brings! 

A rod for my back. More like a rod up yours!

A rod for my back. More like a rod up yours!

So the other day there was a HCA who was talking about how much we hold Lydia when there with her and I said 

“It’s how she is most settled, her sats are good and she’s comfy”

 her reply was “Don’t make a rod for your own back”

I politely smiled and then thought about what she said, at first I thought oh no I’m obviously doing something wrong but then I thought again. How many mothers of newborns just hold their baby all the time, day or night because they can… Well I couldn’t when she was born, for weeks I spent 15 minutes to an hour a day (yes A DAY) staring at my 2 pound tinker in an incubator and now I spend at least 7 hours with littlen’ in NICU and YES I’m going to cuddle her the whole time because other parents get 24 hours with their babies so politely I will cuddle her until I’m blue in the face as no one ever said “I spend 7 hours holding my baby, well that was a waste of time” 

My baby needs me to cuddle her therefore I will cuddle her…. 

Defying gravity 

Defying gravity 

I am a HUGE fan of music which include multiple different genres and I heard defying gravity from wicked a few years back. Little did I realise it would feel like my life. 

Every day I feel like I am trying to defy gravity, I’m pushed to my limits and trying to over come the impossible. 

Recently Lydia contracted RSV which shows up like a cold but is pretty serious in prem babies so we moved back rooms into high dependency. That was okay, I could cope as she was getting the extra care she needed for the time being, however she was then put in an incubator again as she was infectious and all the memories of tiny 28 weeks and 4 days old lydia came flooding back and that killed me but to make it worse they said I can’t get her out and cuddle her…. A whole week I waited to hold and kiss my baby again, I didn’t think my heart could take anymore by this point.

We are now at 36 weeks and 5 days with no sign of coming home as she’s still recovering and is very sleepy so isn’t breastfeeding when I need her too (so there has been more of a push towards bottle feeding but with my expressed milk, the question is when do you express while you have a baby at home… I don’t have the time or energy for that but I don’t want her on formula because that’s no good for her… sorry this is my internal dialogue which had been pulling me apart in the last 24 hours) The only way she’s getting home is with either the oxygen or the feeding tube… not both but she can’t drop on her oxygen at the moment and I can’t do anymore than I am in regards to feeding because I can only sit in the hospital for so long. I feel like we are going around in circles she’s better but not good enough to come home and now that’s all I want! 58 days we’ve spent going back and forth to the hospital to give her milk, cuddle her and change her nappies…. that’s not being a parent that’s being a part time carer! I miss her so much! I don’t feel worthy to be her mummy but I am so grateful and so ready to have her home with me…. 
Please let her get home soon!!