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.

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)

First Step Away From Apnoea Alarm

We were very brave last night.

6 hours after Tiddler was born, she went purple and had what the medics call a "dusky episode". It was terrifying and was to happen again several times in her 1st 8 days.

The second time we were discharged from hospital, we were given an Apnoea alarm for Tiddler to wear.

At first she wore it all the time- in particular I remember one of our only trips out in the early days to Tesco... there we were terrified, totally unprepared in snow, trying to make some vague effort towards Christmas and in the pram was Tiddler, our ticking baby! Tick, tick, tick... After a while when things had calmed down a bit we made the conscious decision to take it off during the day so we all had a bit of normality. We have however always, put it on her at night. Its gone off periodically, most probably due to false alarms although we won't ever know for sure I suppose.

Anyway, last night at 2 am it went off again. The alarm is incredibly shrill and urgent as you would expect and I am too used to it waking me up! I instinctively reach out to touch Tiddler's tummy- this always makes her breathe in and so stop the alarm. You see its incredibly common for babies to hold their breath and its not normally a problem. It is probable that the times the alarm has gone off at home has been because of this. Anyway, last night the alarm wouldnt stop. Tiddler was fine though, she was breathing, asleep, and her colour was normal. The sensor pad had come off her tummy. Phew! As she was still asleep, we decided that rather than to risk waking her and creating a far larger problem (an incredibly angry baby), we would sleep without the alarm on. This was such a brave move, probably a bit too bold, but we were clearly both influenced by 2 am logic!

I woke quite a few times overnight but of course everything was fine. I felt we had really achieved something by not using the alarm all night. The last thing we want to do is medicalise our daughter- we have fought tooth and nail in the recent past to avoid tube feeding etc- and so its good that we the parents were able to go "cold turkey" like this.

Tonight the alarm is back on... I don't feel as brave somehow! She is still in a crib next to our bed and we are currently contemplating a move to her own room. I dont think I will be able to do this without the apnoea alarm. Thats such a terrifying prospect still. One step at a time eh?

2am Shenanigans with Tiddler mark 2

Ho ho ho how I laughed to be woken up at 2 am for milk by Tiddler. Hilarious! The bizarre thing is that she has literally only ever done this once or twice when tiny tiny... now I know thats not normal, and indeed due to her size we were having to wake her in the night for feeds untill she was 4 or 5 mths old.

Its so funny, I keep saying it but I swear someone has swapped my baby! She has this voracious hunger (note to self- probably normal hunger) and its just so lovely to see. I don't really mind the 2 am thing, course I don't. Until you have had a baby who refuses milk to the extremes of dangerously low blood sugar or has been tube fed as the only means of getting milk down them, I don't think you can fully appreciate how bloody fantastic it is to have a baby that feeds!

This whole new baby malarkey (you know, the one that has been swapped) is confusing though. Solids are now also going really well, thanks to a special tumbleform chair being delivered by our Local Authority - very very swiftly I might add. Tiddler has Hypotonia (low muscle tone) and some breathing/ swallowing co-ordination problems and we struggled to get her to feed in her normal high chair as she slouched and was just plain not interested. This chair on the other hand has changed everything. She opens her mouth like a little bird and gulps her food down.

I am really enjoying cooking for her and watching her experiment with different flavours. I am trying to get the balance right though between solids and milk as I think at times she is filling up with purees to the detriment of her milk, hence the 2 am wake up call!! I am also anxious that we are behind a little in terms of food types- I am trying to encourage chewing but I will admit this is not going too well and I am terrified she is going to choke! Today I tried a bit of very ripe pear. Didn't go down too well it has to be said.

We are learning, but thats fine and thats normal. Normal is good. I have missed normal.