let me know

Everyone needs to read this post by diary of a premmy mum. It's so well written. It's also a bit close to home and a tad painful to read. But so helpful at the same time. The bit that really stood out for me was this...

'ALL BABIES ARE ALLOWED OUT FOR KANGAROO CARE AT ALL TIMES UNLESS A CONSULTANT STATES TO TO CONTRARY'

The sign in one of her many NICUs. I didn't even know that was possible. All times?! All times?! I wish. As I read through Leanna's post I remembered the pain of kangaroo care. It was so wonderful yet really quite heartbreaking.

When it worked it was like I was complete, hubs nearby, my baby on my chest, his heart on my heart, his breaths steadied by my breaths, his heat regulated by my heat. If I closed my eyes and sunk into an imaginary place far from NICU and pretended these moments would last forever - it was bliss.

But there were a few problems. Firstly it didn't always work. Sometimes far from calming Skittle it would send his obs swirling and his machines blaring. He wouldn't be allowed on me with bradies and desats happening left, right and centre. Often the nurses would come and put him back in the incubator for a rest.

I hated that.

Why does my baby need a rest from me? It felt like it was my fault for making him worse. Like I couldn't hold him properly. Like he didn't know it was me. I wanted nothing more than to just hold him, hold him tight and run away. But I wasn't in charge. The nurses were in charge and they decided when I could have a cuddle. In our unit they were very aware of kangaroo care, which was great as any cuddles we did have were skin to skin.

Its just that I always had to wait.

Wait and wait. And remind. And ask.

Maybe it wasn't as bad as I'm making out, but to me every second of longing for a cuddle hurt. It hurt deep, so the minutes were painful, the hours were agonizing. Not least because the chairs were so flipping uncomfortable and I often ended up with what we liked to call "incubator face" from having my forehead/cheek/chin pressed against a plastic box for hours on end.



In the early days I couldn't manage more than 4 hours visiting but eventually I would be there for 10 hours a day, literally as long as was physically possible. But no matter how long I was there for, if I was allowed a cuddle - it was only one cuddle a day. In some units that's probably wonderful but to my aching heart it wasn't enough. I had to fit into the nurses schedule. I could hold him when she was ready. Usually at about 12.30/1pm. I always dithered wondering when would be the best time to eat. Do I eat before but risk missing my window of opportunity on the cuddle front or do I eat after and risk missing my pain relief and feeling rather uncomfortable. I rarely gauged it right!

So then, I'd finally be sitting there holding my Skittle and then, in my eyes, would come the worst bit.

Nurse: have you had your lunch yet mum?
Me: no not yet but I'm fine.
Nurse: ok well let me know when you want me to put him back in.

Never, I never want to ask you to put him back in. I want to hold him all day and all night and never leave him. I feel guilty when I ask for him to go back in, I wish you wouldn't ask such a horrible question. I wish you wouldn't make me wait. I wish you weren't in control. I wish I could be a mum.



Ugh. Long days. Heavy memories.

how could i?

A thought popped into my head recently during one of my counselling sessions.

I know this is a fairly irrational thought. There was nothing else we could do.

Why did I leave Skittle?

How could I? Why did I not just stay with him? Why didn't I flatly refuse to move from his side?

I could have slept in the corridor. I could have slept in the car. I remember once around the time of discharge hysterically suggesting to either my mum or hubs that I could sleep on a bench outside because if homeless people did it then surely I could too?

Another, arguably more realistic idea, was to rent a room somewhere near by because I couldn't handle the distance, the drive, the traffic, every mile seemed to make the separation worse. But we just didn't have the finances to make that viable, nor the time to look. Although I'm pretty sure my amazing dad did look for somewhere for us to stay - but London is not exactly brimming with cheap housing solutions.

So sadly it was just impossible.



I know that the majority of NICUs in the UK are not set up with accommodation for parents. There were no facilities for us to stay on our unit.

So leave him we did. I know I had to but how could I? How could I let myself go home and leave him all alone?

when I grow up

Savouring you
Your little warm hand against my chest
Your sweet baby breaths
Your gorgeous nose
Your soft face pressed into my arm
Sleeping sweetly

I could have laid you down by now
But instead im waiting in the dusky light
Looking at you
Lingering
Thinking
Pondering
All that is before you
All that you will see
All that you will do
All that you will think and feel and dream of
My baby boy

It'll go so fast
Time will no doubt fly
But as you grow up I want to savour you
Each special moment
Each ordinary day
My heart belongs to you
My time I give to you
To nurture you
Care for you
Create with you
Learn from you



There is no doubt in my mind darling
My precious boy
Now
Next year
As you grow up
I will always do my best for you
I love you
The minutes are ticking by and I must lay you down to rest, but this evening I have enjoyed savouring you sweet boy

#whenigrowup is a campaign set up by tommy's to celebrate their partnership with ASDA to raise money to make sure more children get to grow up and fulfil their dreams. I'm a bit late to the game but the ASDA baby event is still on so go stock up!

a day in the life - 6 months

This is Skittle's life right now...

 

Join in here with mummypinkwellies...

big head

Skittle has a big head. A really big head! His big head makes him look older than he is and bigger than he is and I'm fairly sure it contributes to how heavy he is.

He is in 0-3 month trousers, 3-6 month tops and vests and 9-12 months hats. His head circumference measurement is so far off the graph for corrected age it would happily land inside the average region for an 11 month old.

His head hasn't always been too big. At 3 months actual it was happily resting on the 50th centile but in the 2 months that followed it jumped dramatically, cue medical professional panic.

A couple of weeks ago he had an MRI scan under sedation. It was so sad to see him being sedated, he didn't like it one bit. He soon slumped into my arms feeling oddly heavy and was attached to a monitor. I carried him down for the children's day ward to the imaging department and popped him inside the head chamber for the MRI scanner. Quite worrying watching your little baby closed inside a cage looking thing and sliding into an MRI tube. We stood with ear plugs in staring at his feet and glancing at the oxygen sats reading every few seconds. 

Eventually it was over and we went back upstairs for him to sleep off the sedation. Last week we received a summary in the post that made no sense and merely stated 'diagnosis: not sure'. Great, that's helpful.

When we got in to see his consultant she reassured us that his brain matter looks fine. Good news. But he does have mild ventricular dilation and far too much spinal fluid on the top of his brain. Not so much that they want to do anything about it now. Which is a relief. But enough for her to send the scan off to GOSH/St Toms for a second opinion. So for the time being his big head will just be monitored. Comfortingly the last measurements showed an increase in size that was inline with a normal rate of growth.

Hopefully he'll just grow into his head as it were.  But it's hard not to notice, he still doesn't have great head control, although it has improved over the last few weeks. He has just managed to muster up the core strength to be able to lift his head from the ground but can't support it when sitting.

 Skittle rest assured, no matter what size your head is, muma thinks you're the cutest boy ever.

midnight snack

This week has been hard. I've been right back there. 

I think lots of things have contributed, partly because Skittle turned 6 months and I've been thinking '6 months ago this...6 months ago that'. I've seen my sweet friend everyday this week and watched her with her newborn and internally compared everything about her experience with ours. 

I was holding it together until she asked me to hold her little one while she nipped to the loo, cuddling a fresh 4 day old in my living room was just too much for me to handle. I felt a strange mixture of bitter, disappointed, angry and emotional I wanted to sob, sob hard and curl up under the covers but then numbness set in and I only squeezed out a couple of tears. So I self-harmed a little instead. I'm embarrassed. I've got to chill out. 

Sleep evaded me the night before last, nightmares swirled around my mind and every fear played out in scenes I couldn't control. 

I remember night times when I was still an inpatient upstairs and along the corridor from my tiny Skittle. I would ask for a porter to come and wheel me down to NICU and my worn out, morphine pumped body would lean on the side of the incubator and I'd stroke his little leg for a few minutes. 

I loved my night time visits. I don't know why they felt so special. It was always really quiet, no other visitors would be around, just a few silent nurses bustling from baby to baby. I think it's because it was the closest to just me and him I could get. My midnight snack of mothering. 

I'd deliver a bottle of expressed milk and check his charts to see how he'd been doing over night. A few times the nurses would send me back to the ward because I didn't look like I was in a fit state to be out of bed. It was so sad when that happened. But as my stay progressed I got a little stronger and could shuffle the journey myself. 

My favourite thing was looking at his diddy foot that he insisted on poking out the end of his blanket and resting on his nest. So cute.

Now when I wake up I can see a cute little face with no CPAP and I can hear his sweet little breaths and stroke his head. And now that he's started chatting I start my day with this...

...morning Skittle!

you say that now

Rant alert. This has been really annoying me recently.

I'm not sure why people do it. I have probably said it myself before, thinking nothing of it.

But it seems to be oh so common to be asked, ridiculously quickly after the arrival of a baby, when you're going to have another one.

Why? I don't get it.

A few people asked us very soon after the c-section if it would indeed be possible for us to have any more children. My brother, a couple of close friends, my mum. I didn't really mind that question from those people. They were genuinely concerned that I'd had a hysterectomy or something else that would mean another pregnancy could never happen. They were inquiring not being nosey.

But some people are just nosey aren't they?

Not asking because they are worried about my health.

They just ask.

"So are you going to have anymore?"

My response, hubs response, it's always the same. No.

And this is the bit that really gets me, more than asking the question in the first place, it's the response.

Drum roll please...

"Oh, well you say that now!" Or  "Everyone says that but then a few years down the line you'll be having another one!" Or "Oh just you wait, you'll change your mind."

Argh. I'm afraid my answer over the last few months has become gradually less gracious and we've now arrived at "No really, pregnancy literally nearly killed me, there's no way we would go through that again and risk a worse outcome." Soon I'm going to add, "What if the same thing happened but they didn't save me and I left hubs and Skittle wife and motherless?" That ought to give them something to think about.

The conversation still sometimes continues, "So have the drs said what happened, have they said you can't have anymore?"

So on we go, "No the dr said there's nothing to say that it would happen again, but to us that also just means there is nothing to say that it wouldn't happen again. And that's just not good enough."

What is the problem with having one child anyway? As it happens there's a history of adoption in our family, my sister is adopted, we had always planned to adopt and conceive so it's more than likely that we will expand our family in that way. But it would be ok if we just had one baby.

I don't understand why people are so keen to ask why/when more will be coming.

Rant over, for now!

bittersweet

Excuse me while I try and unravel my yesterday.

I don't expect you to read it. It's going to be wittery, a splurge of thoughts that have kept me awake most of the night.

Yesterday was bittersweet. Agonisingly bitter coupled with beautiful, sweet joy. I was emotional on so many levels, so happy for my darling friends, so sad for my husband and my boy.

Utterly privileged and so very honoured to be invited into the most special day of our friends' lives while staring disappointment in the face of an experience I know we will never have.

On Friday morning while we were 4 hours away at my parents house my lovely friend S went into labour 2 weeks early. We quickly chucked a few things in the car and made our way back to London so that we could be at their disposal, especially knowing they have no house(!) and things still to buy. We picked up their moses basket and delivered some snacks to the birthing centre and then awaited exciting news.

2am a text arrived with the most precious photo of mother and baby. Looking into each others eyes, having skin to skin, wrapped in a sheet and an hour old. Perfect. Happily, I wasn't jealous, I was just excited for them and so relieved for her that labour was over. Not that I've ever been in labour, I've just heard that it's hard work! I couldn't sleep for ages just being so thankful and so excited. I sent a few more texts and prayed they'd get some sleep. Then the tears came, we didn't have that moment.

Come the morning we popped to boots to get some supplies they needed and with the intention of merely dropping them at reception of the birth centre, we headed over. But they wanted visitors, I double checked, not wanting to intrude upon their momentous first day of parenthood, but they really did and it was a complete pleasure to oblige. It was a pleasure to bless them, be there for them, support them, encourage them, uphold them, share with them and smile with them. There's nowhere I would have rather been than accompanying this brand new family on their first day. It was a delight to rejoice with those who rejoice and shine a spotlight on their awesomeness.

I brimmed with pride over them, my lovely S was so awesome, showered and looking fresh and wandering about and so at ease with her adorable baby boy snoozing in the cot. She and her husband had had such little sleep but were running well on joy.

The best thing about visiting them and the thing that made it possible was that they were at a birth centre. As relaxed and un-hospitally as possible. Had they been on a ward I think I would have really struggled to bare it. But thankfully they were in a lovely room with a double bed and pretty bedspread. A world away from our ITU centred beginnings. It would have been impossible to compare our first day of parenting and their first day, they were polar opposites, at extreme ends of the spectrum. And that made it so much easier. The sheer level of difference actually helped.

But the disappointment still welled up and crushed me a little. I whispered "sorry baby" in my boy's ear many times over the course of our visit as I watched everything he'd missed out on in the early hours. I was no help to them when they were concerned about their little one coughing up some mucus, I didn't see baby for over 24 hours, he had a tube down his throat I doubt he coughed anything up. Or when they were changing a pooey nappy that was black and tarry I thought I have no idea what Skittle's first poo looked like. Tears filled my eyes as S relayed what happened when her husband cut the cord and I chastised myself for depriving hubs of such a big moment. And the old inferiority reared it's head again as I reminded myself that I didn't give birth, Skittle was delivered without me, S is the proper mum her body did what it was supposed to  do.

"Oh sweet, how old is he?" asked her midwife.
"6 months" said I.
"Where did you have him? How was your birth experience?"
"Oh gosh" remarked S as the enormity of her innocent question landed in the room.
The most horrendous and traumatic experience of my life I thought and gently said "oh well it was a bit unusual because he was 10 weeks early and born by c section"
"Oh I see" the midwife muttered.

Privileged, I stood on the sidelines while she helped S with her second breastfeed. It was peaceful, comfortable, quiet, special and calm. A million miles away from my initial negotiations with an og tube and a severely anaemic 4lb-er, behind a screen surrounded by machines, wires, beeps and medical discussions 5 weeks after birth.

"Oh well done babe," cheered S's hubby. "Well done for persevering."

Persevering I thought. Persevering?? I'll give you persevering Mr, persevering is waiting 10 days for your milk to come in, getting up every night to express while your baby lies alone in hospital, rushing to get to the unit in time just to be able to try breastfeeding 3 times a day for more than 3 weeks, coming home with an ng tube and still trying. Grr. But honestly, she did do brilliantly, even if it was just the 2nd attempt and not on the same scale of perseverance as our experience. It's still one of the most difficult skills to master and S was doing super well, putting my stressy feeding endeavors to shame.

We helped them get everything organised and into the car and left them to be discharged and leave together, I think that moment might have been too much for me to manage and certainly too private and personal to them for it to be appropriate to observe. I'm so thrilled for them that they could go home less than 24 hours after the birth and have uninterrupted togetherness, it was just such a sore and painful reminder that we didn't and that we missed out on so much.

I was so deeply grateful to them for allowing us to be such a part of the day. And we chose to be there, they didn't force us to come, we offered. It might sound really odd but it was actually such an incredible honour to get to see what the first hours of parenthood are supposed to look like even if it was excruciating for my soul in places.

So very bitter. But still very sweet.

Welcome to the world little boy, you have a wonderful Mummy and Daddy.