sleep deprived

General update

~ Vickywoo ~ Leave a comment

So much to write, so little time.

I just wanted to check in and say; we are surviving. Still get hit with the “my mum’s gone” slap in the face every now and then, mostly pretending she’s still here.

Job on the horizon. Weather too hot. Short break away with friends coming up. Trying to put my positive pants on and not be a wreck.

Audrey and Rex both thriving. So much talking! And climbing! And singing! And whining! I’m exhausted and struggling, but they are the best and I wouldn’t change a thing.

Stuff and Things 10

~ Vickywoo ~ Leave a comment

  
Rex is finally 7 weeks old. That magical milestone you’re shooting for… “Everything gets better after 6 weeks” they say. We shall see. I didn’t expect an instant change, but I hoped!

Audrey had an audiology appointment last week, terrible timing as she is about as snotty as you could possibly be. So it wasn’t very productive. 

She’s been on good form lately though and is singing lots of songs really well just on her own.

We made it to a music class (something which had scared me), but Rex slept the whole time and I even managed to pick up Audrey for the Hokey Cokey with him strapped to my front. And we went to the group for people with pre-school age kids with Down’s Syndrome, which was great.

Rex is stretching some gaps between feeds out a little, but he’s still unsettled and suffering with wind. I feel he will be an expensive child as we keep buying things to fix the issues… The latest is a vibrating chair. He is not bothered by it, it doesn’t seem to make him any happier than lying still on a mat does. We’ve also got Infacol, a Sleepyhead (he’s not soothed by this either) and cranial osteopath appointments. Of course I want him “fixed” so I can sleep, but it would also be a nicer existence for him if he was happier.
I’m currently sat in my dressing gown with Rex asleep on me and Audrey shuffling about, entertaining herself. I’ve been trapped for 2 hours. I didn’t expect this, but after about 40 mins he woke up in pain and I spent some time massaging his tummy and lifting his legs before shushing and cuddling unti he fell asleep again. I’m regretting telling Ted I didn’t need anything when he left for work. I’ve finished my water and I’m crazy thirsty. I know what you’re thinking – just get up and get water! But he is asleep!!

Fast forward to a few days on and I’m now pacing the house with Rex in the sling. Audrey is again, entertaining herself, shouting various things (Alice! Oh look! Jump! Book!) which makes the sleepy man twitch from time to time. Being out and about is in some ways easier, because he sleeps better when I’ve got a genuine march on and you can sort two naps if you go somewhere , feed and then come home. Of course it’s insane to pace the house with him in a sling, but it’s spitting with rain and Audrey isn’t dressed yet. There’s only so much I can get done sometimes.

There’s just so much about this time that is a shame. Ignoring my daughter (or at least not giving her the level of attention I would like), doing lots of things to the soundtrack of Rex crying (because he has such a short window for happily being awake), only really enjoying Rex’s company for tiny periods of the day because he’s just so unsettled… God I sound like a broken record.

I just find all that newborn banter that people on the bus/in coffee shops give me hilarious… “They grow up too fast!”, “Enjoy this time while you can”, “Newborns always make me broody!” – I’d just like to say, he can never grow up fast enough at this stage, I cannot wait to get passed this and I will not be made broody by a newborn ever again.

Slap me if I ever change my mind on these points!

Yours, sleep deprived and grumpy.

The Calm After the Storm?

~ Vickywoo ~ Leave a comment

Newborns: wow.

Well little Rex arrived and turned me into a hormonal exhausted mess. 

I couldn’t handle not just the level of care he required, but also the way it took me away from activities with Audrey. Suddenly I can’t cuddle her on demand or sit with her playing all afternoon. I know she won’t remember, but I find it heart wrenching. I love her so much. I love cuddling her.

Having a second child hasn’t just rocked our world in terms of how tiring/stressful it is, it’s made me realise that much of what we went through having Audrey wasn’t about her having Down’s Syndrome. We always questioned it – we couldn’t decide if at the beginning we were reeling from the shock of the c-section or of her diagnosis. We’d never had a baby, so we didn’t know what it felt like, how you bond, how you love them. Film and TV would have you believe the baby comes out and is placed on the mother to immediate love and bliss. Both parents are instantly in love.

This is not our experience. Feelings for Audrey and Rex in the first weeks were quite functional. With both I felt quite shocked just to have a human suddenly on me – it’s quite something to get your head around – bump to baby. There’s relief that they are alive and then you just sort of numbly get on with things in a fog of “what on earth has happened??”.

The love part… Well we’ve found it takes time. You get to know them, their face, their smell. The bond grows slowly and then, when they become a little person who interacts and really shows some personality, wow, the love starts to peak – it’s like you’ve fallen for them after a romance.

It’s no secret I’m not a fan of the newborn stage. They are basically still a parasite but now live outside your body. You do everything for them and what do they give back? Ok, they are cute and cuddly, but they cry a lot. And poo a lot. They puke on you. They wake you up. And if you’re really lucky they might make your nipples bleed. Lovely.

But then they smile for the first time (Rex did last week, hurrah!) and they see you more and coo and almost play… And of course (please achieve this soon Rex!), they go longer between feeds. 

So of course I know this love grows and it gets better and better, but oh how hard it is to remember that with an unsettled baby to contend with. Every week gets better, but it’s still hard. Parenting is hard work.

I still remember chatting to a friend who doesn’t have kids, about how she’d like a nanny to just do all the hard stuff – the night feeds etc. And we had Audrey and I told her she wouldn’t feel like that once she had a baby – yes it’s tough losing out on sleep, but ultimately you want to be the one feeding your baby. It’s all part of how your bond grows. Going through the tough stuff together gets you to the fun part! And now I have to remind myself of that when Rex is wide awake for over an hour at 3am or when he’s screaming in pain from wind whilst on my shoulder. I need to do all this, no one else can – what’s the point of having kids? This is my job, my journey and at the end there is a big reward. We are already reaping the benefits with Audrey. 

Just think what these two crackers will be like together as best friends!

  
    
 

It was the best of times, it was the worst of times…

~ Vickywoo ~ 1 Comment

  
Look at us. A mother and son cuddling, such bliss. But of course this pic tells little of the realities of having a newborn. I don’t want this to be a negative rant, but I do want to share what we are going through right now… I mean, this blog may be filled with positive Audrey stories, but it’s really about our life and how having a child with DS doesn’t make our life that different to other family’s. So although I share a lot of positivity, it’s not because I’m sugar coating, she’s a joy.

Where we are now: Rex is 1 month old. He only sleeps in the sling (preferably whilst someone is pacing) or on us with some additional pats and jiggles as required. He likes to feed every 2-3 hours and he doesn’t like to lie still on his own for longer than about 5 minutes. He is currently a very difficult newborn and I am soldiering on with breastfeeding despite the early part being incredibly hard. In fact, it’s still hard. But they say it takes 6 weeks to establish breasfeeding, so in a couple of weeks we will hopefully be in a better place. I live in hope.

I recognise that each stage with a baby is a tiny speck of time in context of our lives – one day this kid will be festering in his teenage bedroom and I’ll be dragging him out of bed. But right now, I am dealing with the hardest thing I’ve ever had to do… and I’ve dealt with a surprise Down’s Syndrome diagnosis and my father dying… But this, this is another level – it’s intense 24 hour work. 

Of course Ted is a massive help – he is now in charge of Audrey am and pm before and after his full working day and all day on days off. Because very often, it’s only boob that will work for Rex. And that in itself is so hard. I’m striving to make breasfeeding work; to give him the best start in life etc,, increase our bonding, secure his immunity to various things… That’s all great, but oh the commitment to being there for him every 2-3 hours, when it can take an hour to feed and then settle him! And when he can’t be put down – where is the respite for me? I use that word – because with a “disabled” child you are given a lot of leaflets about support etc and respite care comes up a lot. Hey, maybe in the future Audrey will be a handful and we’ll want that option, but so far, no need. A newborn however – can they send over a respite carer for us now?? 

I guess I also feel robbed. We had a rough start with Audrey, I thought our “typical” baby experience would involve more blissful bonding and time to appreciate the life we created, no grieving, no confusion or worries, lots of gazing at him lovingly. But Rex isn’t letting us enjoy him. He is too needy for gazing. I’m genuinely terrified about how we “crack” the sleeping issue. How will he learn to sleep lying alone and still, when he currently sleeps upright and moving? Even on me in bed I spend much of the time patting him when he stirs (so often my sleep time isn’t real sleep time, it’s like being on watch for enemy attacks and dosing in between).

As I type this post I am pacing the house with Rex in the sling. Audrey is watching kids’ TV with her mouth open. If I sit down to rest, Rex starts grizzling and I have to get up and pace again. I’m exhausted, emotional and can only see a long stretch of this ahead of me…  I’m partly documenting this so that in a year or so (whenever the crazy thought arises) I can make a sensible decision about getting broody again; i.e; two is enough! Don’t let me do this again, please!!

Welcome baby Rex!

~ Vickywoo ~ 1 Comment

Eek, I don’t have time to write a blog post (although you could say I have more time, given my awake time hours!!).

But I have to announce the birth of Audrey’s baby brother, Rex Graeme. Born 26th February 2016, weighing 7lb 13oz.

Please excuse the still in theatre shots!

It was a long labour, but we avoided a c-section, which is the main thing.

Currently exhausted, he’s 4 days old and doesn’t like sleeping as much as his sister did at this age. Audrey has been an absolute star, she keeps asking me “You ok?”. I am an emotional, hormonal wreck and I miss my Audrey time! Daddy has been wonderful as always. 

We are a family of 4 and are working hard to get through these tough early days to the fun stuff!