Lunchtime

Lunchtime

I cried. I won’t lie to you. I picked up her lunch bowl and left her in her high chair to sob in the kitchen for a few moments and then proceded to clean the tiny one up and sit her on the carpet and resume the afternoon.

Why was I crying? Well…

I’ve been trying to get Lydia to eat since she was in Bristol, we’ve had our ups and downs but she’s always been able to have bits of puree.

Since getting home from Derriford my patience has truly been tested as she will sit in her chair and moan, or vomit or, my personal favourite, flatly refuse. This has driven me BANANAS! I’m trying to help her but she doesn’t understand… It’s the phrase ‘You can lead her to the water but you cannot make her drink’. That is the anthem of my life. I puree our leftover dinner. I find funky fruits for her to taste and she either refuses or throws up as soon as anything toucher her lips… GAHH

Don’t get me wrong there are times when small amount end up in her mouth, I’m not blind to that but it’s not enough to sustain her.

This might sound like a silly complaint but Lydia is NG fed 6 times a day, every 3 hours. This is quite debilitating for us as getting out the house without forgetting anything is rather tricky. This is then partnered with sever reflux. If she’s moved anywhere up to an a hour and a half after a feed, she will throw THE WHOLE FEED UP! Everywhere… to the point that we have ‘sicky bowl’ EVERYWHERE with us. Its unfair for her to live that way. Shes garanteed to be sick twice a day and it’s upsetting for all of us. Especially when she pulls a Lydia special and throws her NG up at the same time….

Now back to lunchtime. That’s why I get so upset about lunchtime because if she eats orally, she’s not sick and shes my happy girly all day. Her taking food will change her life and i believe that. I like to think of myself as someone with faith and after all we’ve been through I’ve learnt all to well that everything has a time, a place and a reason. It may completely suck at the time but you’ll look back and see why it happened and see you are stronger for it. I love my husband even more than that I did before the last year (I didn’t think it was possible) I really do and I know my daughter is a blessing and I cherish every beautiful God given moment with her.

Right now lunchtime is a blip in our life. Something that is teaching me patience (I know right as if I could possibly have anymore) and I can only hope that one day all my tears and prayers will pay off!

P.s I gave myself 2 days to calm down before writing this because initially I was not this calm and I was just pretty fed up and angry!

P.p.s The photo was a rare moment where she enjoyed some chocolate post Easter (Don’t worry she barely ate any of it)

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It’s my body!

It’s my body!

Now I’m a huge believer in this statement. I was blessed with a body, it doesnt work as well as it could but for all intent and purpose, its my body.

However when people force their choices upon you I disagree.

Let me clarify this.

On Thursday I had a lung function test. I went into chest clinic to then be informed I had to do the test with no oxygen (I’ve been oxygen dependent for over a year and not done normal things net alone breathing tests without it) so I had to puff, hold my breath, breath out as long as possible and just generally exhaust myself *all before midday I might add! This was fine, tough and Josh finally learnt how small my lung capacity is compared to normal people (as if the doctors ignored that but at least I know its SAVI now).

Anyway we then leave the building, bearing in mind we also had Lydia and we are on a no smoking site. And there it was. Millions of smokers. Someone practically right outside chest clinc WHERE PEOPLE HAVE LUNG PROBLEMS!

It infuriates me. I have a less than okay body but I make it work. I look after it ect. These people who had healthy lungs are hurting them! If you don’t want them then me and my daughter do…

Do it in the privacy of your home. I get it, it’s a habit or its become part of you but don’t let me and my daughter be forced to have your second hand smoke.

Fifteen weeks

From 15 weeks I felt you move.
A little flutter in my tummy.

Just a tiny little kick to remind me I’m your mummy! 

15 weeks later you were already here,

Arriving early little one we hold dear.

28 weeks still to small to believe, 

That a baby that tiny came from me.

Hidden in an incubator under tubes and wires. 

Crying and crying wandering what has just happened. 

You were warm and cozy but not all that safe as mummy was to poorly to give you the right space. 

Born too early but nice and safe in NICU which was your saving grace. 

15 weeks on were still full of dread about your tiny body and teeny head.  

You were home by this point no bigger than a doll. We’re were scared to mess up and loose our little girl.

15 weeks more we were living in fear. Watching you in PICU fighting my dear.

Out of mummies care once more and under the nurses you learnt to adore. 

My beautiful baby we’re 15 weeks further and grateful for those who fought to preserve her. 

These new 15 weeks start in hospital too but oh tiny darling with the fighting you do we will be home in no time. Just you, me and daddy. 

Ready for life and showing the neighbours how well you paddy.

The next 15 weeks will be joyous I tell you. Just you, me and daddy. In the home that we’ve made.  

Enjoying each day like we’ve hoped and prayed. 

Because my dear little Lydia, we all love you so and having you home is the ultimate goal. ❤

We’ll try again

Today I was ashamed of myself.
Ashamed for finally admitting that I need medical help for my arthritis and lungs.

Heartbroken as this means no more EBM or even the chance of breastfeeding again.

Sad that no one seems to understand.

Angry at my thoughts. 

I was so cross as I caught myself thinking well maybe we could try again at some point for another baby and it could be like a do over, I’d get the term, breastfeed-er I’d dreamed of. Those sleepless nights that are sleepless do to the baby not sleep not due to wandering if they’ve made it through the night. I thought yeah that’s an idea…

NO! Stop there Hannah 

It’s not an idea and here’s way

Babies are a blessing (especially Miss Lydia) you don’t get do overs. You get one timers. Each baby is beautiful and outstanding on their own journey through life. Some get a raw deal to begin with and some get a raw deal throughout. 

I’ve been selfish today after being told the news. I’ve sobbed and been angry but to me it has been all I could do for my baby from the start. All she ever need was my milk and I’ve fought for her to have it every step of the way. And then when she breastfeed it was our first connection and cuddles that I really loved. It wasn’t ever about the milk it was about that connection and closeness it gives you. Since it was taken at birth I tried to gain it back in some way. 

I think it’s just safe to say I’m crazy and hormonal but I 100% love my daughter and have loved my husbands support! My family are my rock and we’ve taken on so much together. They are worth everything to me!

Slipping through my fingers all the time

My mum was a HUGE ABBA fan, therfore it was drummed into me literally from the womb (that and carpenters) and I never understood this song until I see how far Lydia has come and how grown up she now is. She’s fiercely independent and knows her own mind which has stood her in good stead on her journey.

However today she reminded me that she’s not the 9 month old (happy 9 month birthday baby girl) that everyone says she is. She’s still my little 6 month old who’s still dependant on mummy. This morning she wouldn’t settle. She’d had a terrible night and it was half 6. I knew she needed more sleep so I’d pick her up settle her and put her back, she’d scream and we’d start over. It only took 2 attempts before I took her ovee to my ‘bed’ aka the fold out chair I put her up my top for kangaroo care and got comfy. She was sound asleep in 5 minutes flat. 

It’s been so long since we’ve been able to just simply cuddle as life is split into timings, 3 hourly feeds, nurses just popping in, hourly obs, 4 hourly temperature then the normal untimed baby stuff of vomit, dirty nappies, wild screaming and finally bed time  it gets to the end of the day and sometimes I’ve help her for 5/20 minute’s tops. 

Today I’ve learnt a valuable lesson. A feed can be 5 minutes late,  she’s never screaming for it, obs can wait or nurses can work around us and time is precious. We might not be in our dream environment but we can make it as close to so she stops slipping through our fingers. 

It’s MY life 

I’m suffering with massive amounts of jealous-itus (that badly I’m making up my own words) 
I’m seeing people with their babies outside the hospital and thinking whys that not mine?  I see people come through cau moaning about the last 24 hours in hospital… really try 6 month’s solid… I dreamt of going Christmas shopping with Lydia and getting presents for daddy, grandparents, aunties and uncles but most of all I wanted to take her to my mums grave. I wanted to tell her at the cemetery about the lady who fought her whole life just to spend one more day with us. About the lady who watched over her diligently in picu when we weren’t allowed to stay with her. I want to teach her. 

Then I snap myself out of it and think no this is my life. I see all these people living the dream, but, do they have a miracle? No. Do I? Yes.

I’ve missed out on a lot of firsts with Lydia that have been replaced with first echo, first brain scan, first canula, first IVIG… All of these are not the first I wanted her to have but I’m grateful that I get to spend time with her every day. 

Don’t get me wrong the idea of might not getting home for Christmas is literally killing me and has had me question what I’ve done wrong to deserve this but I also feel that way for Lydia, what had she done to deserve this… she wants to be on the sofa with mummy and daddy as much as we want her there! 

I guess this blog post is for me to say buck your ideas up lady, your baby is alive and well so deal with it but it’s also a message to say don’t take your kids for granted I’ve seen just how quickly and easily you can loose them

Husbands 

Husbands are the poor guys who are always at the tail end of a woman’s ridicule.  
“Oh your husband does the washing, send him over to train mine.”

“Men they just can’t multi task.” 

I’m here to stick of for those men, more importantly, my husband. 

We had a fairly normal dating life, nothing extravagant, just talked A LOT, like an unhealthy amount so we know everything about each that their was to know about 6 month’s in and then boom! He shocked me by asking me to marry him. To which I was over the moon and said yes. Shortly after we were married. Then we made an even more grown up step and just over 1 year of marriage we’d mortgaged a house and fallen pregnant  (badly timed but these things never are timed well) 

Then it all went belly up, I caught pneumonia, hospitalised, Lydia was born early, both in hospital, then just Lydia in hospital, home, hospital again, Bristol hospital and then hopefully back to derriford…. 

If you read that and you think oh poor girlie’s but actually this is a shout out to Josh Eg Daddy

He’s been our rock and the one driving to and from the hospital, the one getting it in the ear from work, the one who at one point had no one healthy enough to be at home with him. 

Then he had it all for 3 glorious weeks as family where we could be normal (ish) and then again it’s taken from him and he has to come to hospital again to see his family…. 

Though this all has he complaine? Nope not once.  Has he blamed me? A million times no. Has he just supported us through everything. Definitely a giant yes! 

Josh is super man. I couldn’t be prouder to be your wife! Thank you for your love and support!!