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.

One

One

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.