My experience of birth was a MILLION times different to what I had expected, plus contracting pneumonia at 26 weeks wasn’t on the card’s.

Lydia Rose Morgan born 8th February 2017 at 23:59 at 28 weeks and 4 days old. Born naturally and breech (obviously the way she planned to continue. She’s always doing things the wrong way round)

I don’t think I’d ever been so scared in my whole life as I kissed her tiny head as she was taken away to NICU.

One thing I did know was that she was going to be okay. I knew in my heart that she was going to fight through and she didn’t disappoint.

Lydia at one months old (32 weeks) having her oxygen and feeding tube changed over. She was doing so well at this point we thought she would come home off oxygen. She showed us she was a fighter every time we saw her.

Two months old (36 weeks). She was completely gorgeous and loved her sleepy cuddles.

Three months (Term). We got our gorgeous girl home. She was 3.4 kg she wore tiny baby clothes and was in size 1 nappies. She was also on 0.06 liters of oxygen.

We were chuffed to bits! We finally had a full house like its ment to be after you have a baby.

Four months. Things weren’t going too well. Lydia was struggling to gain weight so the feeding tube went back down and we were in hospital.

Five month’s. Still struggling with weight and also not tolerating the amount of milk given to her. I never left her side.

We were shipped off to bristol shortly after this as she was moved to derrifords HDU and couldn’t hold her saturations on opti flow or CPAP. She then fought the CPAP that the watch team hoped to transport her on so she ended up being ventilated and transfered on that. Relying on a ventilator to keep her breathing while travelling for 2 hours in an ambulance terrified me as she was rocked so if something happens she’s too out of it to breathe anyway.

Those memories haunt me to this very day.

Six months. Our toughest challenge yet. Our baby ventilated for a month in PICU in Bristol children’s hospital. (Picture of her on opti flow as I don’t like the ventilated pictures)

Seven months. Still in Bristol struggling to get off opti flow but still being quite happy in herself. This is when she started to show some character like when she was at home. She became our smiley girly again.

Eight months. Ward 30 in Bristol became our home. We tried to make the most of it. We managed to get outdide as a family twice in our 3 month stay and both times were miserably rainy. Obviously…. we live in England.

Nine months. Back to derriford and on low flow oxygen finally! A step closer to home.

Ten months. Christmas and WE’RE HOME!

I have never been able to find the words to describe how I felt walking back through the front door as a family. I was overjoyed but this was all overshadowed by the fear of ending up back in hospital. Every visit from the community nurse sent me into a panic thinking she was going to be taken from me again. However I stopped thinking that way and went for the take each day as it comes approach and before I knew it a month had flown by.

Eleven months. Another wonderful month at home with my baby. Lydia started to become a little person. It’s like the hospital finally left her memory. She is happy and talking like nothing ever happened. She’s 6.61 kg she wears size 3 nappies and is in 0-3 month clothes.

As were currently on the lead up to her first birthday I really can’t believe how much shes done and how well she’s fought. She keeps me going.

I recently read the news about another kardashian baby being born and it filled me with complete jealousy as I find it infuriating that someone like that would get to carry term and spend all day everyday with their child and I had to visit my child in NICU and PICU. News like this always brings out the worst in me but that’s because Lydia deserved so much more. I don’t know of many children who’ve spent 9 months in the first year of their life in hospital and suffered so much pain.

However what I do know is that Lydia is worth it and I cherish every moment with her. I might not have had everything I dreamed for pregnancy wise (for Lydia and I) but I do know that she’s so incredibly special that she’s worth a place on this earth more than a million healthy celebrity babies.


Life’s a film 

Life’s a film 

If I had to write about my year like they do on the back of DVD’s I think it would go along the lines of this 
“Utterly gripping tale of tragedy”

“I didn’t know what would happen next. I was completely hooked”

“Get your tissues ready as it’s an emotional rollercoster” 

Obviously it would have a 5* review but oh my I wouldn’t wish my year even on my worst enemy. 

The preview would then go like this

Seriously ill pregnant mum is rushed to hospital on 15 liters of oxygen in January at 24 weeks pregnant. She is admitted to the intensive care section of a respiratory ward with pneumonia. Her condition stabilises and they hope to section the baby at 34 weeks however baby has other plans and arrives naturally into the world at 28 weeks and 4 days old. Baby spends 3 months in NICU while mum spends another month in hospital. Baby and mum get home with daddy for 3 weeks in May until they are back in hospital for 5 weeks. Baby is then ventilated and transfered to Bristol, in July, where they spend 3 months and got the diagnosis of SAVI. It is now October and they are back in their local hospital. Will they be home for Christmas? How will they deal with this rare genetic disease? 

Sounds like quite a good film when I put it that way but there was so much more human emotional involved. When you have a baby it’s ment to be happy and lovely time where family come over to coo over the baby that you don’t want to give up. You’re ment to sit on the sofa in pain in your pj’s looking at this little life you created. Instead I got home (with still a very tiny baby) but I had NICU nurses round every other day and because I could tell that they didn’t believe I was a fit enough mum. I made sure I was up and dressed by 8am even if Lydia was asleep. I made sure the house looked nice and then once they left we crashed out together. Life was just exhausting for us as we had support over media ect but for some reason we always get ignored or missed out in person. 

The worst bit about this year is that it was the year Lydia was born. I can think of more bad things than good associated with this year and I always just want to completely forget what happened, however, it’s the year my baby was born. That is a good reason to remember it.

2018 may not be much better for us as a family but I do know that this point next year I will have a happy and loved one year old (nearly 2) and and adored husband whose age I will omit for fear of scaring him! 
I’m entering the new year with a level head, taking each day as it comes with its trials but I plan to make the most of having Lydia at home whenever she is. 

I’m the world’s luckiest mum and I truly believe she’s still here because she fought for Josh and I. 

Happy and healthy 2018 to all our friends and family (emphasis on the healthy for you all)

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 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!!