After Birth Story Part 1

The birth itself was fine. This irony was not lost on me- the girl who had spent 10 months (they all lie about the 9 mths) in abject terror. More about that another time.

I was induced a little early, again for reasons I shall not go into here. I had a fabulous midwife, hitch free delivery, no stitches. Hell, I didn’t even get any pregnancy induced stretch marks. Smug? A little.

Tiddler passed the Apgar 9 and then 10, she was put on my chest and all was well. No-one told me, and if they had I would have told them where to stick it, but if you batter the old gas and air like your life depends on it you will be a space cadet for several hours. I did, and I was.

I cannot remember much of the hours after Tiddler’s arrival. We were kept in the delivery suite for HOURS though, as initially Tiddler’s temperature was too low and then there was no bed for us on the main ward. We had a surreal picnic of Brie and prawns eaten off a clinical metal trolley. I had been one of those stupendously paranoid pregnant women and avoided all foods that had the merest hint of controversy.

Six or eight hours later, thinking about it I actually don’t know when , but while still in the delivery suite, Tiddler jerked in her crib and went purple. I mean purple. Ribena berry purple. I will never forget what it looked like. I immediately said to her Dad that this was not right, something was wrong, he initially thought she was fine and tried to reassure me not to panic. She was making a weird rasping noise. She wasn’t breathing. I panicked. It’s funny but in these situations you just don’t think straight sometimes. I went outside to get someone, couldn’t see anyone... went back in the room, I think I called the “normal” bell… no answer. It took a good few seconds for me to really shout and get help. Isn’t that stupid? Tiddler is our first child, we didn’t know what was going on, but still – stupid.

I can’t remember at which point help arrived, they used suction and got her breathing again. I don’t remember much of a hullabaloo. God knows if anything is even in the notes (must remember to look into that). As quickly as she had got into difficulty she was fine again, my baby was back. I was terrified but no-one else seemed to be making a big deal about it.

At some point after, we were transferred to the main ward. I remember the feeling of pride as onlookers cooed at Tiddler in my arms. This was to be the only time I held Tiddler in normal surroundings in “public” for weeks. It was something I looked back on and wished for again and again, to be able to show off my new baby.

After a major meltdown upon arrival in the main ward precipitated by 4 days of very little sleep, chemical craziness from gas and air and the small fact of your baby stopping breathing, we were quietly moved to a side room. However, within minutes it happened again. Tiddler went purple, the same horrific hue, the same noises. This time I didn’t fuck about. Straight to the emergency bell. FYI, they work pretty bloody quickly and effectively too. Within 20 seconds we had a room full of medical staff. Same thing as before, suction, obstruction cleared, Tiddler breathing again. This time though I really lost it. I hadn’t got over the meltdown on the main ward and I was beside myself, really frantic, terrified that Tiddler was going to die.

Luckily, the Supervisor of Midwives was one of the army of staff that had rushed to our room. Upon examination of Tiddler on the resuscitaire, she expressed concern that Tiddler was “floppy” a term we would hear again and again and called SCBU to come down and look at her.

Within minutes Tiddler had been taken away from me into the “hot room” of SCBU. The nonchalance we had encountered before had disappeared and things suddenly turned a lot more serious. We were told by the Supervisor of Midwives that my husband could stay the night in the hospital –in the ward. This was much to the consternation of the ward midwife, so we made a friend there…  

(to be continued)

Ranting re bath seats

I have a dilemma.

Tiddler has sat, she can as I have written elsewhere... but she won't. Its too hard for her as the Hypotonia she has means she is like jelly- very wobbly in her trunk and shoulders.

We have been using a bath support shaped a bit like a shoe...anyway, we have had to stop using this tonight as she isn't at all safe in it. She wriggles over the middle pommel part as her legs are so strong, and into the bath.

That's fine I say to myself I shall buy one online tonight. Bob shall be my uncle etc etc. Clicked onto Kiddicare, nope...Boots, nope... Mamas and Papas... John Lewis.... nope and nope. So how do I find a bath seat for Tiddler? I think the only way we can safely bathe her is if there is a seat she is fastened into somehow. But it must be one that is very well supported as otherwise she can't remain upright. It seems that my requirements are too unusual for the vast market that is babycare products.

She has a feeding chair from the council and is getting a better play seat / feeding seat soon. I am so flipping irritated with myself that I didn't think about bathtime- why didnt I ask about this? Shouldn't they have thought of it? Am I just being unnecessarily angry?!

So- in the meantime, we will have to bathe together as holding her without a seat really isn't safe. Very annoying. What seems so simple just isn't possible to achieve.

Silent Sunday 28th August

Holiday - an escape from those baby groups...

As I have blogged here, we are on holiday this week. Nothing flash, staying in the UK. Very lucky with the weather etc. Thats the small talk over with then.

It is lovely to have help with Tiddler during the day from Tiddler's Daddy, and of course its lovely to all be together as a family. It isn't too dramatic to say that we are gratefully enjoying the family holiday we feared we may never have. Its not exactly relaxing, well it wouldn't be would it, its normal life just transported to a different location- mummies don't get days off. (If you do, can I speak to your boss please?)

It is a lovely break though as its nice to really enjoy Tiddler for who she is, to enjoy the moment. I realised today how much I enjoyed that we hadn't been with other babies. There was no-one for her to be compared to- whether by myself or others, implicitly or via an "in- your- face" comment from someone that should know better.

This is my holiday then, a break from crying inside when people compare their baby to mine or ask a question I do not want to answer about her development. Thats fine. Its not exactly rolling in at 3 am carrying my heels in my hand and the taste of holiday Malibu and coke on my lips but it will do nicely thank you.

Now.... to find a babysitter for a future 3 am stumble...

Seven Words

Seven Words

Linky from the All for Aleyna blog, you sum up your week in 7 words. Its pretty hard, gets me thinking... always a challenge.

Finally the impact of past is understood.

Chester Zoo- A list animals

We are currently on our first family holiday since the arrival of Tiddler. We are staying in Cheshire and decided to go to Chester Zoo today.

Now, my other half is odd. He subscribes to the "Zoo-keepers Digest" or some such newsletter. On Facebook he belongs to a group that tells him when its "World Elephant Day" or "Tiger Keeper Week". He isn't a Zoo Keeper, the closest he has come has been owning a cat and a dog.  However, even an armchair Zoo Keeper like Tiddler's Daddy was most impressed by the calibre of animal at Chester Zoo.

They are often much of a muchness, and on paper Chester's directory of inhabitants didn't leap out and smack us as being anything unusual, although we were still very much looking forward to going of course. In fact, the Zoo was oozing with proper A- list animals at every turn!

Upon arrival, literally from the entrance, we could see elephants, then a rhino. Over the bridge and we saw 4 more elephants, then giraffes, a generous helping of apes, various big cats etc etc. In the past when I have visited zoos the animals have either been AWOL (clearly not really without leave though as that would be terrifying for everyone...) asleep or very forlorn looking and cramped.

untitled (Cyril Blazy) / CC BY 3.0

Now I am no Zoo Keeper (remember, neither are you Tiddler's Dad) but at Chester the enclosures seemed spacious, well planned out and the animals therein content. All the animals we saw were awake and seemed engaged. The Park was beautiful, well landscaped and although very busy it was still a pleasure to explore and we could see everything we wanted to without being jostled by over zealous children/ grandparents or being assaulted at the ankle by a rogue pushchair.

Although we didn't try them, you can hire buggies to escape overtired legs which are more like little cars and looked like great fun. Cafes and kiosks were well dotted about and weren't a rip off (also unusual) although there were also loads of picnic areas including some inside.

I had to blog about Chester Zoo as we really were so impressed, I don't work for the Chester tourist board or anything! A great attraction, very well organised, clean and lots of fun. Better than its southern competitors in our opinion...

Misfits or fraudsters?

Tiddler has come a long way. In our darkest days she has been tube fed, had lumbar punctures, canulas in her head, tested for all manner of chromosomal abnormalities, even checked that she had shoulder blades. She is no longer tube fed, has no chromosomal abnormalities and fundamentally is well.

Why then do I feel like I do? I have recently come down from the high of Tiddler's latest discharge from hospital, her feeding VASTLY improved and the Paediatrician being pleased with her.

I met up with some Mummy friends over the last couple of days, its the first time we have been in a group of same-aged babies for about a month. I have found it hard. I know its important to get out, to let Tiddler interact and see the other children. But at what cost? Sometimes I wonder if its worth it.

Some of the others are crawling, some are standing, some are cruising. Tiddler can't sit. Well- she can actually, she has started to fairly recently, the problem is she won't. I think its too hard for her as her hypotonia (low muscle tone)means she doesnt have the control in her trunk to sit very easily. Actually, if she could just walk she would be a lot happier as her legs are great and operate totally normally. Clearly though, you can't walk before you can sit. Thats probably the most visible difference. One of the Mums suggested a group photo of all the babies sitting, I literally felt dread as I knew Tiddler couldn't sit. I wanted the earth to shrink us up, I didn't want this difference to be so glaringly pointed out. The photo didn't happen, thankfully. I need to get over this sort of thing.

She is- of course- a Tiddler hence the irritating "Was she premature?" question referred to here. Weaning is slow due to delayed swallow, a strong gag reflex and her low muscle tone. She will be a Tiddler a while longer!

BUT, she's not poorly now, she doesn't have a life limiting condition, she is happy, on the button intellectually and a babbler bang on course. So why do I feel as I do? I feel guilty that I feel like a misfit. Tiddler has left hospital whereas others did not.

We have been offered a place for a couple of hours a week at a local childrens centre for children with additional needs. I feel like we don't fit in here either because thankfully she doesnt have a serious illness or disability. I feel like a bit of a fraud. I also feel like a fraud for tagging this blog on the "special needs" section of Netmums. Why? Is it because I haven't come to terms with Tiddler's health problems or is this just symptomatic of the no man's land grey of being without a diagnosis?

So yep, we are currently without a diagnosis. Tiddler is still under a Geneticist and the belief is that there is an overarching reason for all of her health issues but that we don't know what that is yet. Nor do we know when we will know! It may be that we never get a diagnosis for her, as I have recently learnt that this outcome is more common than you would think.

We just don't fit in. I have to get over it I know I do. I suppose the camp we fit in at the moment is the "without a diagnosis" camp! I am not good with grey....

Reasons to be Cheerful, 16th August

Ok, bit late with this this week but here goes anyway...

1) Had Paediatrician appointment for Tiddler last Wednesday. Dr was really pleased with her and it was probably the most positive appointment we had ever had. I could have cried as the Dr gave us a big grin. Tiddler made great progress in one of the reflex tests she normally fails hands down. You can really see the changes in her. It is still early days for her but I left happy. I never leave there happy!

2) Yesterday, I was told I have PTSD (Post Traumatic Stress Disorder) Crazy. And probably not a reason to be cheerful for most but for me it's validation, the culmination of a long period of struggling and everything is now falling into place. I feel like this is a real turning point and feel heartened and positive about the changes I can make in the future.

3) We are going on holiday on Saturday. Yay! Our first ever family holiday. I am beyond excited and definitely have reason to be cheerful

OCD and handwashing - what's normal

So this is a bit of a weird one- writing about myself rather than Tiddler today... I wanted to pick your brains.

I have OCD. No big deal, had it for years. Anyway, I have been attending CBT sessions because of the difficulty I was having coming to terms with Tiddler's health issues and start in life. They are now hoping to address my OCD. I am a handwasher and checker. I can't believe I am writing this!

I was asked what "normal" was for handwashing- I honestly don't know- especially with a baby. (Tiddler is 8 1/2 mths old) I was asked if I would ask my friends- survey opinion among my contemporaries. Well there's no way I am doing that- you see I hide things pretty well. Proud of that, whether that is wise or not is another debate for another day... So I thought I would ask readers of my blog. So- what IS normal?

Once I have a "normal" level thats what the exposure therapy for CBT will use as a target.

Thank you- all answers would be really appreciated! I know this is random, but to get rid of OCD in my life would be AMAZING!

Flashing lights

So, Saturday we had a trip to IKEA. We travelled to a store we don't normally go to as we had been advised it was easier to get to. Mistake number 1.

We spent an inordinate amount of time shopping as per usual. Mistake number 2. Tiddler was pretty patient, although was on an anti- milk day.

I managed to make time for meatballs and a hotdog so could sustain myself throughout the day- this was the major positive of our trip in my eyes.

We bought what we went for, and then doubled the value with a trolley full of stuff we fell for. Varying degrees of regret the next day. Anyway... on the way home, Other Half reversed out of the parking space anD hit a post, just a little tap at 1 or 2 mph. The result was pretty shocking damage to the front wing. There were a group of skaters who sniggered but thankfully Other Half was oblivious to this- I feared for an altercation/ Other Half majorly losing the plot if he had noticed them! I managed to suppress a nervous giggle- you know the one you used to get at school when in trouble... no? only me then.. and luckily this also went unnoticed.

I have to say- if it had been me, I would have burst into a fit of hormonal tears and / or kicked the car and probably hurt my foot considerably.

What then ensued was a 2 hour wait for our car to be recovered- yes the 1 mph smash had rendered our (2 week old car) undriveable. Eventually the yellow flashing lights heralded the arrival of the flat bed truck and our ride home. I had a minor meltdown when I realised how precariously the baby seat had to be strapped into the truck cab- also as it stank to high heaven of stale Golden Virginia. I know, I used to smoke it in my headier days.

Recovery vehicles don't go very fast, they are noisy and bumpy and the ride home wasn't a whole lot of fun although Tiddler did eventually drop off. Recovery vehicles do like to flash their lights a lot though. A flash for "hello",a flash for "you are a recovery vehicle too" a flash for "yep, come in my lane", a flash for "Oooh this is where you live, I will now wake up your neighbours" etc etc etc...

Our quick dash to Ikea turned into an epic day trip. We got back at 10pm. As I had been saying all evening the only important thing was that we were all ok. By Sunday evening Other Half was starting to see the funny side...

Silent Sunday 14th August

London riots

So, other half and I were glued to the TV last night. I am embarrassed to admit this, but maybe it is part of the rubber necking, car crash watching mentality that is so encouraged by 24 hr media and the content they trawl for to fill all this air time.

Notwithstanding the reasons, we were transfixed, transfixed in horror. Tottenham, Hackney, Lewisham... all horrific, I was embarrassed to be British. For me, the realisation that this was really plunging to depths not seen before came when watching Croydon in flames. I used to work there, my Mum was born there, went to school there. Its a town I know and a town where my family lived in the 40s and 50s. To see what we now know is Reeves Furniture store burning for minutes and minutes, the huge inferno left with media helicopters filming it was sobering beyond belief. There were no fire engines, there were no police. They couldn't get there. They were spread too thin and were attending elsewhere.

I dont know the rights and wrong of this, I am not in the emergency services, I acknowledge what an incredibly difficult job they must do. But this image for me is the one I shall remember.

I tweeted this morning that I felt disturbed and fearful about tomnorrow more so than at any time since 9/11. I really do. Its scary to see what humans can do to each other. We have been worrying all this time about terrorism... have we been forgetting to look over our shoulder?

And what has created this culture whereby kids/ young people have to have the latest trainers / plasma screens... seriously, where has this come from? Creates a currency by which you are judged how worthy you are, by your possessions, really??

I am ashamed that I live in a society that has somehow allowed young people to grow up to not give a shit, not the tiniest bit, about their neighbours, their streets, their city. And family? What is family about in 2011?

Sadly, these young people have literally nothing to aspire to, no dreams, no hopes to work towards, to steer them off the streets and away from trouble. There is no fear of the repercussions if they get caught as they have absolutely nothing to lose and sadly, probably kudos and the odd plasma tv to gain.

I am disgusted, disgusted by our Government, disgusted by the individuals. But this rot started a long time ago, before this Government, and the last.

Videofluoroscopy, not a computer game- Tiddler's test

Today Tiddler had a Videofluoroscopy. She has had problems with her swallow for some time, I had to stop breast feeding due to her poor co-ordination of breathe and swallow (another story, and another blog post).

The latest concern that our Speech and Language Therapist had was that she was "pooling", my understanding of this is liquid / food gathering in her throat. They needed to check that her swallow was safe, and so the best way to do this is by using the Videofluoroscopy test. I have to say that for some time I have thought something was up as after feeding she sounds "gurgly" and like as if you opened her mouth you would see a pool of milk gathered at the back of her throat. Apparently, in the trade, this is called "pooling".

The test is a collaboration between Radiology and Speech Therapy, a fast succession of pictures are taken as fluid / food is swallowed. Tiddler had to feed/ eat her milk, water and purees as normal while seated in a special seat. All 3 had Barium in them - to show contrast in the pictures. Tiddler wasnt bothered about the taste of the Barium, apparently its rather inoffensive which was a blessing. The puree in particular turned into what looked like polyfilla! Tiddler managed though and fed obligingly.

The pictures were fascinating, really interesting. Although I was concentrating on feeding her so could really watch as much as I would have liked, you could see a cross section of her face, throat and neck and what looked like black liquid moving down her throat and neck.

The test itself only lasted 5 mins, it took longer to mix her milk and food with the polyfilla! Tiddler was absolutely fine, a non-intrusive test so she was non the wiser. They could see straight away that she wasn't pooling so thats great and means her swallow is safe. This is great and means I am less scared about T having more lumpy food. They could see though that she has a "delayed swallow" - she swallows too late? Don't quite understand this.... the Speech Therapist is calling on Thursday to discuss. They said to be careful after she eats, to not lay her down too quickly in case she hasn't swallowed. With her reflux, we keep her upright anyway so that's fine. Will wait to see what this "late swallow" means.

I am relieved. All systems go on solids again I hope.

It was a bit upsetting in the waiting room as I had waited there 8 months ago when Tiddler was 3 days old. I vividly remember sitting in this horrid, clinical cubby hole and I remember praying over and over again that she would be ok. She had been transported by a Dr from SCBU to radiology in her incubator, a tiny tiny baby- MY tiny tiny baby in a plastic box having one test then the next and the next. That time, at 3 days old she was having a Barium Swallow to check that she didnt have an obstruction in her stomach.

We are a bit too familiar with the hospital, I hate that we know our way round so well, we recognise lots of people and they us, and that poor Tiddler has been tested by nearly every department now, and a couple more than once! Happily however, the tests - the serious ones at least- have all given us a big fat negative, and we are very thankful for that and the fantastic care and resources that they have bestowed upon us.

Silent Sunday

Nursery Rhymes... What Were They Thinking??

What is it with nursery rhymes?!
3 Blind Mice - not only is it ripping the piss out of the visually impaired, its condoning violence

Jack and Jill Went up the Hill. The classic personal injury tale of woe, where theres blame theres a claim etc

Ladybird, Ladybird. I remember even as a child being distressed about this one, "Your house is on fire and your children are gone" Nice. That one makes the audience feel warm and fuzzy inside (!)

Grand Old Duke of York. Pointless. Utterly pointless, all that up and down business.

Humpty Dumpty. For contemporary tweeters a definite #fail, they couldn't put him together again could they.




Hickory Dickory Dock ok fairly innocuous... I think?

Wind The Bobbin innocuous but circular. All that winding it up and winding it back malarkey...

Twinkle Twinkle, everbody "agghhhhh", a nice gentle lullaby

Anymore? There are loads... I wonder whether other languages have similarly inappropriate nursery rhymes?!

Breakthrough in diagnosis for Congenital Heart Defects

In the news today it has been reported that a currently little used test on newborns could help discover congenital heart defects. The test measures the oxygen levels in the blood and is easy, quick and non-intrusive. Got to be good. The study looked at 20,000 babies and it detected 75% of all critical cases (those that result in death or surgery within 28 days of birth) and 49% of major congenital heart defects (causing death without surgery within 12 months).

At present, ultrasound scans examine the heart antenatally and newborns also have basic cardio/ respiratory tests. Some of the stats above account for babies whose heart defects were uncovered via these existing methods, but the total number of cases discovered still represents an impressive increase.

However, what is personally interesting is that the oxygen testing wrongly identified some babies as having congenital heart defects, although I haven't been able to find exact figures for this.

When in SCBU, Tiddler was diagnosed as having PDA, VSD, and something else- memory hazy- I can hardly remember this- we had so much else to worry about I remember saying out loud that we would deal with the heart stuff later. Crazy really to think I said that but we really did feel as though we were taking an hour at a time sometimes.

On discharge from SCBU, we asked our consulant whether Tiddler's could be a self-resolving issue and he said most probably not. Happily, and to cut a long story short this is not the case and Tiddler has no heart problems- a Cardiac Echo when she was a month old confirmed this.

I sometimes wonder whether with advances in medicine we get a bit too clever for ourselves, in our case ignorance would have been harmless... we would never have known about Tiddler's heart problems as they self resolved. In pregnancy I also had scares as a result of ultrasound scans and all was fine. Don't get me wrong, I am no Luddite. I love the NHS, I am thankful every day for the medical advancements that have kept Tiddler safe and obviously I see how fantastic any improvement in the diagnosis of heart defects is. I just worry that people think its a panacea. I suppose though the benefits clearly outweigh the risks of mis-diagnosis. It is better to diagnose too many children including some incorrectly than miss a diagnosis altogether I suppose? We are fortunate that Tiddler's cardiac issues resolved and we know it.

Reasons to be Cheerful, 4th August

Reasons to be Cheerful

Ok, so all my Reasons to be Cheerful are Tiddler related- of course!

1. Almost a year after it was bought, we put Tiddler's cotbed up! YAY! It is almost time for her to be in her own room. This is a really positive sign as we honestly NEVER thought that we would feel confident enough for this.
2. On a sort of related note, and blogged about elsewhere this week, we have had 3 periods without the Apnoea alarm on overnight. She was fine, of course, and we took one more step towards normality.
3. Completely independently and totally randomly, Tiddler pushed up on her arms from being on her tummy. This is a massive development- her upper trunk is weak and her arms very floppy. Ha! She's on her way to crawling and will definitely surprise people I think. :)

... actually I will add 2 more

1. I am getting my haircut on Saturday!!! Ony second time since Tiddler's arrival. Looking forward to this a lot.
2. Its husb's birthday this weekend and we are going on a family trip to Chessington.

Seven Words

The "Seven Words" linky  to describe this week

Very happy, now need to forget past

Reflux and Weaning

After several intrusive tests and intravenous antibiotics, Tiddler's "dusky episodes" during the first 8 days of life were put down to Reflux. I remember the first time a Paediatrician said this I was very cynical and I will admit highly irritated. My newborn baby had stopped breathing for God's sake- how can that be Reflux? She had nothing in her tummy the first time it happened, how can that be Reflux? Anyway I was of course thankful it was nothing more sinister. We were "finally"* discharged with a diagnosis of "Silent Reflux" and a very daunting cocktail of medication at a user-unfriendly every 4 hours, 4 hours, 6 hours and 6 times a day.

We have always kept Tiddler's crib tilted (waste of a bloody good John Lewis glider crib, that!) and until very recently always kept her upright for an hour after every feed. I dont jig her about. She misses out on a lot of silly Mummy / Tiddler dancing :( Her medication has been tinkered with over time and she is now on a fairly strong medication once a day. (Omeprazole)

The thing about reflux is that its a condition that varies wildly but does seem to be exacerbated by teething / colds etc. Frustratingly it can seem that you are turning a corner and things are getting better and then you can be brought down to earth with a bang and whole lot of vomit!

Our Paediatrician had said originally we should wean at 4 months but due to Tiddler's low tone and inability to sit, as well as suspected Cows Milk Protein allergy we were then advised against this. Tiddler has had a rough couple of months health wise and so weaning has taken a back seat until now.

She has been doing really well with purees in the last couple of weeks, certainly enjoying an unprecedented hunger and desire to eat. However, she does seem to have a very strong gag reflex. This emerged in the first few days of weaning a while back and she gagged and vomited on a very thin puree of carrot. Since then, she has mainly coped with puree and we never gave her milk just before solids so as to make sure she keeps the milk in her! I am now attempting to introduce lumps and am finding that reflux is rearing its nasty head again :( This evening I gave her 1/4 of a tiny tiny Annabel Karmel pasta shell... she managed three quarters but the 4th made her gag and she threw her entire feed up. Now the saving grace is that Tiddler hardly seems bothered by this- its a silent evacuation rather than lots of tears and retching- just realised this is quite graphic, hope there are no vomit phobics/ people eating while reading this ! It is hard for me though- I spent quite a while preparing her dinner and then feeding it. To then see it all come back up again is dispiriting, feels like Reflux is back. I dont know how much slower we can wean her though as the lumps were tiny. Puzzled. Bloody Reflux.


* we had a lot of "final" discharges...