Life

Here Comes Audrey… Marching Along

~ Vickywoo ~ Leave a comment

Audrey has successfully walked on her own with a walker (both a standard plastic thing at home and a fancy rollater at conductive education)!

Yes, I cut straight to the juicy detail there.  It feels so exciting and terrifying to think she might be close to walking. 

When Audrey was a baby, I looked at the parameters for children with DS walking (from typical age to 5 the book said) and I thought; “well she will walk at typical age or not much later”, because I wanted to be positive, but also I believed in Audrey. I knew she was the greatest kid with Down’s Syndrome I’d ever known, I was so sure that with lots of help she could hit all those milestones as early as possible.

The reality is, even if we had been super hot on physio and/or lots of crazy gadgets for walking/improving muscle tone, Audrey would still be delayed. She has low muscle tone that is hard to deny. Plus she chose to bottom shuffle rather than crawl – this is practically walking, she has her hands free. So in her eyes, no rush!

As I look at this year, the year she will possibly walk independently, I feel a mixture of emotions. I’ve been so desperate to see her run around like her peers. She misses out on park time, outdoor play and even soft play (you need to be able to climb). However I’m worried about how it will change things – eyes needed in the back of my head? A child that’s no longer happy in the buggy or sitting in a high chair? I know this is standard progression and something mums of typical children have dealt with already by 14 months (is that the average walking age??), but Audrey is 3 in July and I still haven’t had to worry about these things. 

She is just starting to realise that Rex is taking up mummy time, she is calling out for me a lot, following me around and is trickier to get settled at night time. Audrey is really growing up. I love being her number 1, but it’s so hard when I can’t devote all my time to her. I hope her improvement in walking, standing and climbing will help give her some independence and help her to need me less, although I suspect I’m in for many months of struggling with how to split my time between demand breastfed baby and demanding toddler!

We Can Do This

~ Vickywoo ~ Leave a comment

A friend came to visit Rex for the first time the other day. I was explaining how tough we were finding number two, how his nights were getting better, but still appalling, that he was so rarely chilled and happy, that breastfeeding had been a struggle, that the labour wasn’t great, recovery was a shock, that I never wanted to do this again… My usual rant! 

Now, I know this sounds like a depressive visit, but we had lunch and a laugh (promise) and Rex slept on her for over an hour and then fed and slept on me for over an hour, so he appeared to be quite easy.

Anyway, this friend has two grown up children and had easy births, easy breastfeeding experiences, easy babies… She maintains the teenage years are the hardest, so god help us!

Since her visit, something she said has stayed with me. It was along the lines of; “Well I remember visiting you after you had had Audrey and just thinking how amazingly you were coping – because you had a lot to deal with; the Down’s Syndrome, the oxygen, the emergency c-section… And you were taking it all in your stride. Now you have a more common situation and you’re freaking out! This is dealing with a newborn, you’ve handled a newborn with lots of other challenges, this should be the easy bit!” And I guess she’s right. We’ve forgetten what we went through; having a baby in the special care baby unit for 3 weeks and bringing her home attached to an oxygen canister for 6 months, that’s not a standard start. But I know most will consider the shock of a baby with Down’s Syndrome and how awful that must have been. I don’t want to trivialise this, it was like a grieving process, it was rough, but somewhere down the line Audrey became more than Down’s Syndrome. She became our daughter, the one we planned for and made with love and that period of confusion has become so insignificant in the scheme of things.

Having Audrey, learning from her, knowing her, it outweighs the initial upset a billion times over. As a cheesy social media motivational quote would say: You have to experience the dark to appreciate the light.

And so we come back to Rex; we’re in a dark time and hopefully we’ll appreciate him more once we get out into the light?!

In the meantime, I’ll try to remember this is what millions of people are experiencing right now – sleep deprivation and an unsettled baby. It will get better… But please let that be soon.

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!!

It’s just a phase (we hope!)

~ Vickywoo ~ 5 Comments

  
So here we are. I’m a mother of 2, we’re a family of 4, Audrey is a big sister.
Such a big leap from being a tired woman with a bump and a non-toddling toddler – to being a tired woman with a newborn and non-toddling toddler! Thank goodness for paternity leave – my beloved husband has never been so needed!

So far, I feel like this time around is much harder than my experience with Audrey. I realise that it’s totally crazy sounding to say a c-section, unexpected Down’s Syndrome diagnosis and three weeks in a special care baby unit is easier than a vaginal birth and a healthy baby being at home within 48 hours. I guess it’s true what they say about childbirth fading from memory.

The main difference is that Audrey was a sleeper – I had to set alarms to feed her. Rex doesn’t have that problem. He is getting better (we’ve had a couple of 3 hour breaks between feeds – a miracle!), but unfortunately his keen feeding nature in the early days means I’m currently in cracked nipple hell! Again, something Audrey didn’t put me through…

But don’t get me wrong, Rex is delicious. I still appreciate his peach fuzz head and big baby blue eyes. He’s another perfect tiny human we made, but wow, his sister didn’t prepare us for a tricky baby! In fact, she tricked us into thinking babies were easy!

Audrey has been an absolute angel. She can say and sign Rex, she regularly says “Hi Rex!” And asks “You ok?” If he is crying (and to me too if I’m crying – like I said, I’m a hormonal wreck at the moment). She is so loving, gentle and sympathetic; she makes me cry just by being her, I’m bursting with pride and I miss her! I’m so often feeding and tending to Rex, Audrey time has diminished. But it’s a great chance for Daddy to get some Audrey time of course.

We are in the middle of a difficult stage – only 10 days in, it’s quite a shock to have a newborn in the mix. Will keep you posted, but I know things get better and I have to keep reminding myself “it’s just a phase…”

   
 

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!
   
   

40 week’s pregnant disorganised person

~ Vickywoo ~ Leave a comment

It’s was my birthday yesterday at 40 weeks pregnant. Yep, birthday due date for a birth-day.

First time around Audrey got the star-prep: hypnobirthing, raspberry leaf tea, fit ball bouncing, massage; all the recommended stuff. And of course, I had no labour and a quick c-section.

Second timer gets: day 39+ 1 = first listen of hypnobirthing CD. 39+3 = reading breathing techniques. 39+6 = damn, no raspberry leaf tea in our local Sainsburys. 40 = waters break and we realise newborn clothes are in loft and need washing.

Basically I’ve slacked off because I have another child who is my entire focus (at least, that’s my excuse!).

On the plus side, I have packed a thorough hospital bag. So we (Ted) lug it across town, getting the bus so we can stop off and buy baby clothes on the way. I’m checked over and as I’m not in labour, we get sent home to wait and see what develops. Audrey is enjoying a mini break with her Bibi (Grandma), so after lunch we basically sleep. 

So here I am on week 40+1, contractions came and went in the night, so we are on our way in to be induced. The house is a mess, I’ve been last-minute cramming with my hypnobirthing book and I think maybe we’ll treat ourselves to a taxi ride to hospital today!

The little man will hopefully be with us today/tomorrow! Eek!

Here’s one I made earlier…

  

Feel the love

~ Vickywoo ~ Leave a comment

  

Last night Audrey wouldn’t settle on her own, which is reasonably rare and after a cuddle and sing song with Daddy, the crying started again. So it was my turn to have a go. 

She cuddled me with one arm tucked around me, with her other hand on my hand, interweaving fingers. I told her we were holding hands and she whisper-giggled with me at the fun we were having in this dimly lit room. I rocked in the chair silently and we gazed at each other whilst playing with our hands. A moment of perfection. I could feel our love. Her face – just the most beautiful little girl I’ve ever seen, her gaze fully locked on my mine, looking very much like a child who is not sleepy and will not be rocked to sleep!

Yes, it crosses your mind: er, excuse me miss, we had just started a new series on Netflix, I was about to put my feet up with a glass of milk (a pregnancy heartburn must)… But at that moment I just felt such bliss at being there for her. Being her mother. 

I’m sure I bang on about this in every post, but it’s a heightened feeling when you’ve had such negative thoughts about your child and your imagined relationship in those early days. It scares me to think that a “syndrome” label made me question the love and connection I would have for my daughter, but it did.

In fact, I’ve just recently been filmed sharing thoughts and feelings after diagnosis for a short film that will hopefully help new parents. And on an email calling for more contributors, a mother with a grown up son with Down Syndrome questioned her involvement – she wouldn’t want him to see her talking negatively about his life. Which I completely understand. However, I really hope to explain to Audrey one day that the reason I’ve shared so much online (including some pretty upsetting thoughts and feelings) is that I want society to move forward and I want to take as much of the negativity away from other parents as I can. And I want her to know that it’s because of her, because of her fabulousness, that I feel so strongly about banging this drum and changing perceptions.

Of course, in an ideal world I want someone to receive the diagnosis and think; ‘Who cares?’, but I appreciate it won’t be that simple. But how about, after the initial shock/upset/confusion, you quite quickly move forward by thinking about a family you saw online…? A mother who wrote about love, beauty and fun… She showed that your life with your little one might just be how you had expected things to be pre-diagnosis; singing songs together, reading books and cuddling before bedtime, sharing in a peekaboo joke… The path is a smaller deviation from the original than you might think and the overriding fact that should help take the negativity away is: you are their parent and you will love one another no matter what life throws at you. 

I’m thinking that’s parenthood as standard though, isn’t it?

  

Seconds

~ Vickywoo ~ 2 Comments

I’m writing this before our little man arrives (I suspect my blogging time might be a little reduced following his birth..?).

A second pregnancy is definitely a different beast. The first time around you can truly revel in being ‘with child’. When maternity leave hits, (all going well timing wise), you can have weeks to nap, read, chill out, enjoy decaf coffees… 

Audrey is a July baby. I had at least 5 weeks before she arrived in sunny Brighton, just enjoying some ‘me time’ and falling asleep regularly to my hypnobirthing CD.

This time around, I finished work with 4 weeks until due date, I fear he’ll be early (we’re week 38 now), but I only get 2 days a week of “me time” anyway (whilst Audrey is at nursery) so it’s really not the same. I don’t feel like I have blank weeks ahead that I can fill with baby grow folding and preparing for birth. I have our usual routine, plus tiredness, plus heartburn and I’m waking in the night for all manner of reasons (Audrey being one of those from time to time, but being uncomfortable/needing a pee/leg cramp etc etc also involved).

I have to lift Audrey a lot because, well, she can’t walk. And I have to walk around pushing her in the buggy because we don’t have a car and that’s how we get about, with a bit of bus travel thrown in. It’s not a big deal, but it definitely makes me tired. And she’s tiring because she’s a curious child who wants cuddles or books or snacks etc. Or me sat on the floor with her or her sat on the sofa with me. (She’s kinda bossy).

I have several fears this time around (last time I think I put it all off and didn’t feel like a baby was really coming, this time I can’t deny it!)…

– Exhaustion is probably number one, because I love and need sleep and I cannot see how I’m going to get enough with two kids to look after.

– Labour is also up there; I didn’t go into labour with Audrey, she stopped moving and I had an emergency C-section. I’m happily trying for a ‘natural’ birth this time (with no objections to a few drugs!), but the unknown is still strange and scary.

– Doing enough: how on earth can I breastfeed, entertain, cuddle, feed, clean, rest, leave the house… With 2?!? Eek.

– Just being a good mother and having enough love to give to a second child that is following in the footsteps of one of the most loved children on the planet.

At the same time, I know it will all be worth it to grow into a family of four. I also realise a lot of people have had two or more children and have survived to tell the tale.

But wish us luck anyway please!