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Sunday, 25 September 2011

In the big bed

We are doing it, we are finally doing it,... Tiddler is in her own room. We had a shocker of a night last night and although she is poorly, this was not the sole reason we were all up for 2 hours from 2am til 4. The coughs and cries were interspersed with giggles and grins... "isnt this great! We are all here- lets play even though its dark and clearly the middle of the night.."

She is almost 10 months old. I know... knocking on a bit to still be in our room. We have our reasons as I have blogged here, she stopped breathing several times when tiny and we have, until about 1 month ago, been using an apnoea alarm each night fixed to her tummy. We haven't forced the issue, things are just naturally about right now for her to move into her room.

Doesn't make it easy though. I cried tonight. I cried due to terror- what if she does stop breathing? I know that she won't intellectually. I cried as I can't believe we have actually got to this stage! Wow! At times I never thought she would leave the hospital let alone be in her own room. And I cried because, like a normal mummy I am sad that my baby is a little more grown up now! She looks so tiny in her cotbed. Well she is tiny in her cotbed... its going to last her for years and years at this rate...

Saturday, 24 September 2011

The leaves are turning

The leaves are turning, its almost Autum. The nights are getting darker. Spooks is on the telly, as is X Factor, Strictly etc etc etc

It was this time last year I was getting bigger. The anticipation was palpable, I was terrified, excited, disgustingly happy, my world was simple. I was about to have a baby. The most natural thing in the world. I was terrified about the birth- ridiculously so... but obviously very excited. I was to have my baby in early December.

Now the darker evenings, the colder weather, the Winter TV schedule have all delivered an unwelcome reminder of last year. I didn't see this coming. I don't like it. I am remembering the blissful ignorance of last Autumn and the expectation of a happy ever after - once I had got the birth over with of course!

Things like "that" -I mean when things go wrong- well they don't really happen do they? Not to people like us.... you just read about it in weekly mags... thats not real though is it...

Tuesday, 20 September 2011

#Healthworkers - Save the Children

It's been said elsewhere this week, but I make no apology for repeating...

I thank whoever looms above EVERY SINGLE DAY that we have Tiddler today with us. I am indescribably grateful to the NHS that we have in the UK. Yep, it has its detractors but we have an inalienable entitlement to first rate healthcare in the UK. This is for emergencies, scheduled ops and even elective healthcare with everything in between.

Tiddler has been in hospital for roughly 1/3 of her life. The talented, hard working and dilligent healthworkers that have saved her life as well as improved her health are literally too numerous to name but they range from a Consultant Paediatrician to Physiotherapist to Student Nurse to Radiographers....

She most certainly wouldn't have got beyond day 1 of her life if she lived in some of the lesser developed nations without good access to healthworkers. I have luck and geography to thank for Tiddler's good health today. This isn't fair. This isn't right. We can stop this by improving the provision of health workers in the developing world.

At home, you and I can help stop this by signing the petition here to urge David Cameron to stand up and be counted and push for the provision that all children deserve...

Thursday, 15 September 2011

The A-Z of ME meme

Thanks to Motherventing for tagging me on this A-Z meme... here goes

ANORAK…Do you have a sad side? Yep, I am well into Family History. Geek alert. Am pretty young to do this - by about 40 yrs I would guess. Love it though!

BODY…What physical attribute would you most like to change? Jaw line. Odd, yep.

CELEBRITY…Which one would you most like to date and why? Robbie Williams but I wouldn't let him touch me... been around the block a couple too many times for me...

DEBUT …Tell us about your first ever blog post. What made you start blogging? First ever blog post was only about 2 mths ago. Started to help me come to terms with what happened immediately after Tiddler's birth.

ERROR …What’s been your biggest regret? Career. Start to finish.

FUNNY – who’s making you laugh? OH. He is hilarious. I am also hilarious so we are a bloody good match.

GRAND…If we gave you one right now what would you spend it on? I would hoard it.

HOLIDAY… What’s your favourite destination? NYC. That or Moray Coast of Scotland.

IRRITATE… What’s your most annoying habit? Interrupting. I always want to get out whats in my head!

JOKER…Whats your favourite joke {the one that makes you laugh everytime you hear it}? Whats brown and sticky? A stick.

KENNEL… Do you have any pets? Nope.

LOVE…Are you single, married, engaged, living with a long term partner? Married.

MEAL… Whats your ultimate starter, main and dessert? Hmmm Prawn Cocktail (retrofoodchic) Shepherds Pie and a stodge-fest of a sponge pudding. Yumbags.

NOW…If you could be anywhere right now where would you be and who with? Here.

OFF DUTY…What do you do in your spare time? Blogging, Sleeping. Moaning about how little spare time I have. Ha.

PROUD MOMENTS …What are you most proud of? Giving birth to my daughter, getting married. Academic qualifications. Not having had any handouts on the way.

QUEASY …What turns your stomach? Violence.

RELAX…How do you relax? Wine. Bath.

SONG…Whats your favourite song of all time? ??

TIME …If you could go back in time and relive it again, when would you choose? 16

UNKNOWN…Tell us something about yourself that no one else knows?

VOCAL…. Who is your favourite artist? ??

WORK….. What is your dream job, and are you doing it now? Who knows, the age old question. Happy being Mummy for now.

XRAY…Any broken bones? Finger.

YIKES…What’s been your most embarrassing moment? My car being recovered after being flooded and the recovery man giving me back a pair of knickers that were found and I quote, "floating" in it. They were new and unused. Thanks for asking. They were actually a gift from my hen night. Ok, the story sounds worse now...

ZOO…. If you were an animal, which one would you be? Panda. They rock

Now to tag..... its your turn:


For the template and original post see: Real Housewife of Suffolk County: A-Z of Me Blank Form

It never rains but it pours

This week has been really really tough. I have been struggling with Tiddler as she has started arching at almost every position change. So, this makes putting her in her tumbleform (feeding chair), car seat, pushchair, etc etc very difficult. She has also started to sleep pretty badly, and yep you guessed it, she arches when you try and put her into her crib too. Now the last few days have taught me, through bitter experience, that she will relax but you have to distract/ tickle etc. This is quite hard to do on your own when dealing with a wriggling child!

I have had a bit of week healthwise too- had to have ultrasound on Monday to check that a cyst I had during pregnancy had gone- apparently it has- and yesterday I had to go to the Breast Clinic. I had noticed changes post-Tiddler's arrival and upon the 3rd GP visit I was referred. All very scary, they use the C word and you can't help but ponder the "what ifs". Although I had been reassured that a serious problem was highly unlikely it has still been a very difficult and stressful week. I have, apparently, got Periductal Mastitis. So there you go! I have to go back for an ultrasound- they are going to be on first name terms with us there (Tiddler has had 3 or 4 ultrasound scans herself!).

Childcare for things like hospital appointments is really tough without having family nearby. At the moment with the way Tiddler arches etc I wouldnt know whether a babysitter / nanny would even work with us?! Am I over-analysing and panicking again!?

I have been desperate for help with Tiddler. I have called everyone! Some have been helpful, but without a diagnosis or a label to quote it sometimes feels as though I am trying to prove entitlement. The Occupational Therapist has gone to ground again and so we are still awaiting a play seat.

However, its definitely not all bad. Tiddler has really come on with her sitting and I am hopeful that she may get there in a couple of weeks. That will make life a lot easier as at the moment I just can't leave her safely anywhere. Then I will just have to try to get her to sleep during the day... aghhhh the Holy Grail...

Friday, 9 September 2011

Dear Santa...

Dear Santa/ any other kindly- faced benefactor...

Santa's Spreadsheet, after Haddon Sundblom

I am getting in early, needs must. I have a few needs right now and I am hoping you can oblige.... I know I am not a child but my wish list is all on behalf of Tiddler, and she is 9 mths so I am defo ticking the box there.
  1. Family nearby (that are arsed about anyone but themselves)
  2. A member or two of said family that would spare me an hour of childcare now and then
  3. A bath seat that Tiddler can safely sit in
  4. A chair that Tiddler can sit in to eat which is at the table with us and where she can reach a table or tray so she can interact with food more readily
  5. A playseat so as to encourage her to sit
  6. A miracle solution to stop Tiddler arching so we can actually get her into numbers 3, 4 and 5
While I've got you, I'd also like a toblerone, Ipad and a new pair of jeans. You can keep the socks though and obligatory smellies on a 3 for 2....

That is all

Tiddler and her Mummy xx

Wednesday, 7 September 2011

The week and a wobble

It would be fair to say that the week so far is hardly a cracker.

A GP asked if Tiddler had Down's
Tiddler is full of cold
She hasn't slept well for days. We haven't slept well for days. I am knackered.
Tiddler has begun arching. This is now so entrenched I am tearing my hair out a little.

Thankfully her Paediatrician called this pm, he is really great, and gave me a bit of advice. Importantly, he reassured me she cannot cause herself harm. This has been my main worry as she goes back into a "crab" but as she can't use her arms to support her she uses her head and neck. It looks like her neck will snap. So there's half a plan now, we can be seen by a Paediatrician soon if it continues to cause concern. He did say perversely it is quite good as it shows her strength is improving. In the meantime I have to distract her to get her into her crib, tumbleform, car seat, puschair or seat. Oh Joy. It is truly draining. I need a break, and am wholeheartedly rueing that we have no family nearby to let me take a break.

Tuesday, 6 September 2011

Does she have Down's?

We have not had a lot of sleep recently from Miss Tiddler. I hate to moan about that, you see we were blessed from about week 2 of her life to very good sleep, interrupted only by us waking her to feed. It seems she shouldn't really have been this sleepy but we didn't realise this at the time.

Anyway, after a few particularly sleep deprived nights, I decided to take Tiddler to the GP yesterday as I know one of the reasons behind her being disturbed is constipation. Sorry Tiddler, yes I am discussing your bowel habits on the internet. I wanted to check out the medication she was already on. My surgery were great at squeezing her in to be seen same day, I think this is a common baby policy... However this meant that we saw a new Doctor, never seen before.

Medication all okayed, and a brief chat ref. Tiddler's diet - "Do you give her fruit and veg?" Errr... no shit Sherlock- I was at this point inwardly rolling my eyes but reminding myself that she probably does have to tell some people this...

I then asked whether her Hypotonia could be the reason she is plagued by constipation? She said that yes, in her opinion it could and that low muscle tone in the bowel could definitely occur in someone like Tiddler. She then looked at Tiddler who was wriggling all over me at this point and asked "Does she have Down's Syndrome?"

My world went funny, I went dizzy, I couldn't breathe, I burst into tears. Looking back, did she say that or did she say "She doesn't have Down's Syndrome...does she?" I don't think it matters. I couldn't believe she was asking me this. Why was she asking me this? I could not stop the tears. Dr realised at this point all was not rosy and changed her tack. "OOooo yes, things can be hard when you have a child with health problems..." I was steeling myself for the "Have you got much support?" question when I blurted out how insensitive her question had been, how it had been asked before, how did she think that question made a parent feel? And in any case why did she say that as Tiddler didnt look like she had Down's, did she???

To give her credit, she backed down fairly swiftly, explained she hadn't meant to be insensitive, said no Tiddler didn't "look" like she had Down's but that sometimes you can't tell visually in any case. I more or less held it together till I left the surgery, and then bawled my eyes out.

You see, when Tiddler was born and transferred to SCBU on Day 1 of her life, people started to comment on her appearance. They used the word "dysmorphic" a lot. She had a battery of chromosomal tests or "karyotyping". A midwife came to SCBU to do a post natal check on me. Chatted for a few minutes, walked round to look at Tiddler, look at me and then said "you had the nuchal test, didn't you?" The only conclusion I could draw from that question being that she too thought Tiddler looked different and possibly had Down's.

Also, for months we had been receiving hospital reports that duplicated the last known diagnoses/ issues in bold at the top. Imagine reading a report that drops on your mat telling you again that your baby has "dysmorphic features". Its a horrid, cruel term. I flagged this up in the end and it was agreed that it was no longer the case and so removed.

That is just like the insensitive GP yesterday. Sometimes, healthcare professionals forget what words and labels actually mean and what it feels like to hear them, if you are a Mummy. The GP yesterday, given that she didn't know us, could have asked me to run through Tiddler's history quickly, or to ask if we had a diagnosis etc. Surely her NHS patient database flags up any diseases / conditions that each patient suffers from? If she had read even one entry in Tiddler's notes she would probably have gleaned enough information. If Tiddler did have Down's - it was still an insensitive sledgehammer approach that would have caused upset.

So yes I am angry, it still hurts to think about it but I am very pleased I managed to challenge her. I wouldn't have been able to do that before.

Thursday, 1 September 2011

Lying, or rather not lying

More frustration today. Further to my bath seat rant...(we are still no further forward with that, I am waiting for the Occupational Health person to return off holiday).

Tiddler has always arched her back and neck. It looks awful, and we have put it down to reflux in the earlier days and thereafter thought it was a learnt movement. I have read elswhere recently that other children with Hypotonia also arch, so I have no idea as to the cause...

Anyway... last night she was lying on her back on her playmat and she arched her head right back- Tiddler's Daddy rushed to correct her as I can honestly say it looked like her neck was going to snap. The momentary panic and horror at how it looked literally brought tears to my eyes.

I spoke to our Physio today and she said that Tiddler would probably have self-corrected if we hadn't intervened and may not do it again, but that we should probably not leave her alone lying on the floor if we can avoid it. WTF??? She can't sit, I can't leave her in a chair as she arches and twists... she arches out of a Bumbo.... and now, now she can't be left lying on the floor???? Well how does that work then? How do I go to the loo/ prepare food/ answer the phone? I couldn't leave her for long at the best of times, but this really is like having a crawler or early walker but without the crawling and walking! The physio is lovely and normally very helpful, but I have to say this did not go down as one of our most constructive conversations.

Blanket/quilt/Play mat I sewed for Theo

I have all my hopes pinned on a Baby Bjorn chair- apparently they are impossible to get out of... we are borrowing one tomorrow. Fingers crossed! In the meantime, I shall also be crossing my legs as I clearly have to limit my loo breaks...