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Monday, 26 March 2012

What if it all happens again?

So last night, in a rare moment of time, clarity of thought and space to breathe I crapped myself again.

What if the baby is really poorly? What if she ends up in SCBU? What if she is much worse than Tiddler? Tiddler's Paediatrician said that he would like the baby and I to be kept in for a few days to ensure everything is ok and that feeding is established. Great, absolutely fine with that (although the Antenatal Consultant is still pretty non-plussed).

However, I am terrified at the prospect of my immediate post-natal haze... I will need to sleep of course I will. I know that no matter how scared I am the need for sleep will take over... what if she stops breathing when I am asleep? We still have an apnoea alarm from Tiddler - maybe I could take it to the hospital? I know everyone will think I am crackers but their first baby probably didn't go purple once let alone the number of times Tiddler did.

However much I flap and get myself into a blind panic about this, one fact remains. I can do nothing more than I am doing. Nobody knows whether the suspected genetic kink will repeat itself or indeed how much of Tiddlers newborn problems are attributable to genes. I can't wait to meet my baby though and Tiddler is going to be a great big sister.

Wednesday, 21 March 2012


AS I have harped on before... Tiddler's weight has always been an issue. She wasn't born the biggest baby but many aren't. She lost quite a bit straightaway, again- nothing special.

The problems became evident very swiftly though and it took her some weeks to get back to her birth weight and then quite a few months to cross the magical 0.4 centile. These early problems were down to illness and her inability to co-ordinate breathing and swallowing meaning she tired very quickly when breastfeeding.

Ever since then, Tiddler's weight gain has been slow, patchy and at times tortuous! Apart from just after birth, she has not lost weight but a 20g (less than one ounce) gain in a month is one of her lowlights!

I could probably write a thesis on the causes of her poor weight gain, we may never know what they or it is conclusively. The combined forces of her Paediatrician, ENT Consultant, Dietician, Speech and Language Therapist, Health Visitors etc etc aren't confident of the cause but have suggested reflux, sensory under-responsiveness (meaning she can't feel hunger) breathing difficulties and her poor tone.

Whatever the cause is, I am going to have to chase the Dietician for advice I think, to check she has enough nutrients etc going in at the very least. The whole weight thing though I find very frustrating. We are all bound by the rules of the "Red Book". Your child must weigh X kg and follow that little red line hence they are overweight "What do you feed them?" or underweight "what do you feed them?"- actually, that makes me think the whole process could be automated like the self service tills at Asda as you are asked the same questions and then invariably told that its fine (even when you know its not and have a team of specialists trying to find answers). As an aside, I was told that the weights used in the red book are taken from American data, so why they are treated by some as the be all and end all I do not know.

What is it about weight of people's children though that makes them turn into strange inverted competitive mums? There was a conversation at toddler group this morning about how awful their offspring's weight gain was - incidentally it wasn't- 4 oz in 1 mth, I would love that to be a bad month for Tiddler. Mum no.2, not to be outdone by this announced that her baby had only put on ... wait for it... 500g in 2 months. 2 Months! Shock horror. What do these people think? Why announce to a room full of people in this way? I don't get it... but anyway it wasn't the best conversation for me to walk into this morning.

Monday, 19 March 2012

Finding answers

It's been a strange day where I haven't known whether I was coming or going.

I met with another prospective childminder and was confronted by the inherent differences between her child and mine, (they are a month apart). Difficult in itself. It is, I find, very difficult to know how much to say to childminders and at what point. I briefly mentioned Tiddler’s head banging and throwing of objects but hated to do so although I knew I must.

I don’t think I am ever going to feel comfortable leaving her with a childminder. I just feel that T has been through so much and been so poorly I can’t leave anything to chance and need to be 100% confident about all aspects of the prospective childcare. It seems this is too ambitious.

Next we went to the local Children’s Centre and although there were several mums there that I knew, I could not relax and chat to them as they were amongst each other, because Tiddler was throwing toys and there were some really tiny babies close to her. She really doesn’t understand “no” yet and in any case I don’t believe that she is doing the “casting” deliberately. She cannot grade her movements, particularly with her arms. I think this is partly due to her weak muscle tone as she didn’t have the opportunity to develop her movement skills gradually as a baby normally would.

This afternoon Tiddler went to her playgroup for children with additional needs and upon picking her up I was told how well she has progressed in the last few months. She has done really well I know. Although she is not talking / saying any words yet she is signing really well to several nursery rhymes (Twinkle Twinkle Little Star being a particular favourite) which surely demonstrates how sparky she is. I cant help but wonder / worry why she is not saying words yet but hopefully this worry is just due to my status as the world’s worst worrier rather than anything else.

Drop in a couple of hardcore incidents of head banging, particularly in the car, and we have a stressful day with high highs where I was bursting with pride and desperate lows where I wonder how I will cope as things are consistently difficult and very very lonely. Let alone wondering how I will cope when the baby arrives…

Wednesday, 14 March 2012

Defining Normal

Thought it would be great to join in with Renata's blog hop "defining normal". For more info see over here:

Normal is the multitude of toys I keep near every seat to try to stop the arching and fighting when I put her in

Normal is the food diary I keep, noting daily Tiddler’s food and drink consumption

Normal is that Tiddler never shows any hunger, has never cried for milk

Normal is that her clothes last for AGES- she is 15 mths old and is still wearing clothes that fit her 3 months ago (!?) 6-9 months

Normal is when feeding Tiddler her bottles we have to pause regularly for her to breathe as she cannot co-ordinate breathing and swallowing on her own

Normal is me being an all singing all dancing buffet every most meal times to entice her to eat

Normal is there not being a flicker of reaction when Tiddler hurts herself. And us to know the sound of her head banging at fifty paces

Normal is an appointment at the hospital at least once a week

And when we are there- knowing the best places to park and how to only pay for an hours parking

Knowing our way round the hospital like the back of our hand

Knowing when the Hospital canteen is open and how there isn’t a lot open on a Sunday

Normal is knowing not to get our hopes up at any glimmer of help / referral to ANOTHER specialist/ impending Geneticist appointment. In fact we start with cynicism and get more positive from there!

Normal is always fearing something bad is around the corner

Whats normal in your family?

Define Normal Badge

Thursday, 8 March 2012

An operation

Went to see the ENT consultant yesterday. He was an hour late. Our appointment was 9 am. There was no apology from him, his poor nurse got that job in the corridor.I didn't hugely enjoy entertaining a boisterous toddler for over an hour in a waiting room with 2 toys and a toilet I could barely get the buggy and my  pregnant belly in. Hey ho- I digress and it is very rare in all my recent experience of hospitals.

The Dr said the noise when Tiddler breathes is not predominantly caused by the Laryngomalacia, but her Adenoids. Who knew?? Of all the GPs and Paediatricians that have examined her, no-one has ever suggested that. He said she has to have both her Tonsils and Adenoids out. Eeek. And because she is so light, this can not be done at my local hospital but must be done at a Children's hospital. Double eek. I am having a baby in July. How do we do that then?? I am just going to cross that bridge when we come to it.

In the meantime, we have drops to try in case an operation can be avoided. He also wanted to wait a while to see if she gains more weight. Tiddler has never been great at weight gain, its not a Tiddler Speciality. I have no idea whether this is down to her breathing problem, neither does anyone else. I found being told to wait frustrating as she is not even 8 kg and so there is no way she will be the 14/ 15 kg he said she must be in a few weeks! Even if I stuffed her full of northern pies. So all a bit frustrating but obviously if an operation can be avoided then I am all for it.

Tuesday, 6 March 2012

Ear Nose and Throat

Tiddler has an ENT appointment tomorrow- FINALLY! She has Laryngomalacia which basically sounds worse than it is and means a “floppy larynx” . Her breathing is very noisy, especially when relaxed and asleep. She has a “stridor”  sometimes when breathing and sometimes a "tracheal tug". If we go to a GP who hasn’t read her notes they tend to do a double take as it’s a classic sign of respiratory distress, although not with Tiddler, its normal.

True, it means she has to work harder to breathe but we were told early on it was not dangerous. That said, we think it has had an impact on her weight gain as it takes a lot more effort for her to breathe and feed. She still doesn’t seem to breathe through her nose ever… I don’t know whether that will be mentioned tomorrow but it has had an impact on her feeding.

Our GP said she should probably have her tonsils out but I do not believe this will happen as she hasn’t had tonsillitis enough times. Only perhaps if somebody finally decides her weight gain is insufficient. Who knows.

Whatever they do or say tomorrow I hope they don't shove a camera down her nose/ throat again as she is a lot older now and much more aware. As I often seem to say, fingers crossed.