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. ❤

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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!! 

It’s okay

Two words I’ve uses more than I could ever have imagined to both my husband and my daughter. Most of the time it’s been a lie. I never knew if it was going to be okay but it gave some comfort to my family to hear the pessimist be a bit optimistic. 
Recently in PICU I said it to my daughter. She was ventilated and coming off her sedation so she was more aware of her surrounding. This scared her. It would scare you. One minute you’re having cuddles with mummy and the next you have a tube down your mouth in a weird hospital. She know us but didn’t smile, a skill she had learnt just before being intubated. After weeks of agonising separation one of the nurses said we could have her our for a cuddle. As lovely as this was it was daunting as there wasn’t a part of her without a tube or wire (more than when she was in NICU) but I was desperate to hold my baby.

The whole time I held her she cried. Completely poured her heart out, which hurt me. I couldn’t do anything. I cried. I really didn’t know what to do! I just held her and told her it would be okay full well knowing that we had no idea if she would even come off the ventilator. I also thanked her for fighting so hard for mummy and daddy. Then came the hardest thing I’d ever done  I told her if it was too much we’d still be proud of her but we are more than willing for her to give up and have a well deserved rest with her nana, great grandad and faith (to name a few).

She was suffering and she was telling me how hard it was by sobbing in my arms. She was crying with no sound. Only tears down her face.  

This moment stands put to me more than ever as shortly after that she made a huge recovery and came off the ventilator. 

As a family we’ve given so much for each other. That can never been taken from us. We’ve fought literally for our lives and we’re coming out the other end stronger and more exhausted than ever but we’re the strongest family you’ve ever met. 

Lydia thank you for fighting for us! We cherish every precious day with you and will try to give you a safe and easy life full of love! 

Jealousy 

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!