Weight

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.

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.

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.

A Tiddler update 13.5 months old.

Hello Blog, it's been a very very long time.

Things have been tough, busy and stressful. At its most basic, the reason behind my lack of blogging is downright knackeredness!

Tiddler is doing really well physically, she is now very effectively commando crawling and last week finally learnt to sit up on her own from lying. She is managing to stand supported when wearing her bright pink Piedro boots. The Physio was really pleased and impressed with her progress so that's great and it's reassuring to finally see things moving in the right direction.

We have also seen the Geneticist recently, who is now testing Tiddler's DNA for a "few very common muscle problems"... I didn't ask what... I have googled (i know, I know) but not really much the wiser. We will find out the results in 3 weeks. They were originally focussing somewhat on Ehler's Danlos as we have that in our family but as I do not have EDS they have been head scratching a bit. A diagnosis would be good- good for us, good for family, good for Tiddler's dalliances with "the system". We have already encountered the negative "oh, well she doesn't have a diagnosis does she.... " to requests for more support. It may be though that the quest for a diagnosis is both fruitless and pointless. Tiddler is still Tiddler and a label doesn't change who she is. I have got my head round this now I think.

What my head is struggling with though is the isolation. We just don't fit in. Tiddler behaves differently. Mums look but rarely comment or ask about her. To those that do ask about how she's doing, well I struggle with what to say. Do they really want to hear my answer or are they looking for the polite, typically British "fine thanks".  Where do I start? What would I have said in their position? Probably nothing... I am no different to them then.

The main diffiiculties right now with Tiddler are her continued feeding issues, with associated arching and hitting her head when in her feeding chair, general head banging - which I am finding very upsetting- and her extreme under responsiveness to pain. To manage all three is proving draining and very very stressful. We are in the middle of a programme of Occupational Therapy so fingers crossed that this has a quick, positive impact.

In the meantime, I need to get out of the house every day. Tiddler's constant colds, Tonsilitis etc have made this hard and I have felt it! I also need to get myself out on my own. I rarely do this, largely due to feeling so tired, but really must try...

Can You Get Vomit Out Of Velcro

What a great day! A friend and her two children came round this morning which was lovely - I especially loved telling her all our good news and she said she could see the difference in me and how less stressed I seemed.

This afternoon we had Hydrotherapy at the local hospital. As usual, an intense nursery rhyme fuelled session! She is doing really well but splashes so much, to the great irritation of the other (older) children around her! She splashes and then doesn't seem to understand why her face is soaked- the cause and effect thing hasn't quite kicked in there...

Further to my post yesterday about Tiddler's feeding, I have been trying to encourage her to chew a little and move on one step from purees. I tried her tonight with soft carrot, totally uninterested. Then for pudding I gave her mashed plums and unfortunately she gagged and threw all of her meal back up :( This was really gutting. My husband and I had just been discussing how much better her reflux seemed to be as well :( So... I dont know how to play this now. I don't want to go too quickly for her, and I certainly dont want her to throw up her meals and so slow down any weight gain. Crucially- I dont want to put her off her solid feeds (she previously had a very strong milk aversion). The Speech Therapist has said that babies with reflux often have a very strong gag reflex so its no surprise and did also happen earlier on when we had just started to wean. So, I am a bit unsure- and nervous about what to try next! So yeah, she threw up all over herself and the lovely feeding chair loaned by our Council. So, can you get vomit out of velcro?

Reasons to be Cheerful , 28th July

I really enjoyed doing this last time so here goes again:

1. Tiddler is still feeding! She cries for feeds, finishes her feeds AND is doing really well with solids too
2. I have spent lots of time with friends and their rugrats recently- nice as we have been out of action so much with Tiddler being unwell / in hospital etc In particular I really enjoyed spending time with a couple of old school friends
3. Tiddler is starting to sit! We have been told that she will be slow to sit / crawl etc as she has Hypotonia meaning low muscle tone. In effect, she is floppy. However, at physiotherapy the physio was really pleased with the progress Tiddler had made and she actually sat for the first time (propped up and at a really crazy angle!) when there. I am confident that she is well on the way to proving a lot of people wrong...

Errrr LittleM and Mummy becomes Tiddler on the Loose

Oops. I did google my proposed blog name, I did- I promise! However, I suppose I was a "bit tired" and anyway managed to overlook that there is a very similarly named blog. Hence the name change.

Tiddler on the Loose.

Same blog, same aims etc. I have chosen "Tiddler" as LittleM has been slow to gain weight and so is on the small side. Conversations have typically gone like:

Random: "awwwww a newborn" / " awwwww a tiny baby" / " awwwww how old?"
Me: " errrr no she is actually x weeks old"
Random: without a pause "Oh, was she premature?"
Me: "No."  If feeling kind I would then save said random and say "I know, she's very small" . Sometimes I add " Shes been pretty unwell"
Random: "Oh, I am sorry to hear that, is she all better now?"
Me: "No". They then squirm and feel generally awkward.

The other alternative is to lie, but that's not me. I haven't invited them to comment. Why do people feel the need to fill a space / silence with daft questions or comments? It happens so much! I know I have been guilty of it too... if only we could all think before we speak! One comment or two is ok but when it is literally every time you go out, it gets quite hard and the constant explaining is not something I have wanted or felt able to do. Hence my responses were less forgiving.

So anyway, she is a tiddler. But the tiddler has turned as she is eating enough for small people everywhere and drinking more milk than ever before too!