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.

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.