One of the hardest parts of caring for Lil Z is deciding when something is “a problem” and when it is just part of normal (usually bad) behaviour. At the moment, nowhere is this more of a concern than eating.
Lil Z has a swallowing problem. She doesn’t swallow well, particularly fluids, and they sometimes either end up going up her nose or down her windpipe. The nose isn’t too much of a concern, but fluids going into her windpipe is called aspiration and if severe can cause pneumonia and lung damage. At the moment, we address the problem by thickening her drinks. When they did a modified barium swallow in April, Lil Z didn’t seem to have any problems with pureed food, so we have carried on with that.
Lil Z has generally been an enthusiastic eater. There are things she doesn’t like (avocado being at the top of that list) but for the most part, she has always eaten well. So well, in fact, that I once asked a doctor if I should be concerned because she was eating SO much. However, she is only enthusiastic about pureed foods – she coughs and gags if you feed her anything too lumpy. Her SALT wants to gradually begin to get her used to lumps and chewing, but for the moment, we’ve been sticking to smooth-ish purees while we sort out her seizures.
In the past few months, however, Lil Z has gradually lost interest in her food. There are now entire days where she refuses to eat any solid food at all, no matter how smoothly pureed. She will still drink milk and formula – but refuses food. She will clench her teeth so you can’t stick the spoon into her mouth, knock the spoon out of your hand (a great example of purposeful hand movement, but frustrating) or if you manage to get food into her mouth, she will gag and choke on it.
The nanny and I have grown increasingly convinced that at least some of the gagging and choking is intentional. The food is usually still on the tip of her tongue – it’s not in the back of her mouth where it could cause her to gag. And sometimes if you continue to feed her, she will give in and eats quite happily.
I raised the issue when I saw her paediatrician. He wasn’t concerned because she is still gaining weight and growing – so obviously isn’t starving. He said that children were like camels – they often stored food up for later. He also warned against forcing her to eat as it could cause food aversions. She will, he assured me, eat when she’s hungry. I went home feeling a bit better… but concerned that I may have been forcing her to eat.
Since then, things have only gotten worse. Lil Z is refusing most of her meals. But more importantly, she’s also refusing her anti-seizure medication – which also has to be thickened and spoon-fed to her in order to avoid aspiration. We changed to adding the meds to a bottle of thickened milk, but she has also started refusing bottles too.
She seems to have a bit of a cold and sounds like she has phlegm stuck in her throat (another issue with her swallowing problems) and this has given her a cough – nothing too serious, but persistent. However, food now seems to trigger her cough (or maybe she’s doing it on purpose?).
I know I’ve been describing this all in a very matter of fact way, but it is upsetting me greatly. I simply don’t know what to do. Taking her to the GP seems futile, since she’s not sick and the doctor isn’t going to be able to do anything about her cough. If I take her to the speech pathologist at the RCH, she will probably blame it on the cold, and won’t do anything until it is cleared up. So, I just need to wait and see, really.
The problem is that it is breaking my heart. I feel inadequate – not being able to feed Lil Z. I’m embarrassed to even try to feed her in public since she makes such horrible coughing and gagging noises – people look at me like I’m trying to choke her. And its only made worse by the fact that I seem to have the least success with feeds. QB has had a few recent successes with meals, as has the nanny. I seem to fail more than I succeed, and stupid as I know it is, I take it personally. She’s not eating for me because I’m doing something wrong, because she hates me, because I’ve given her a food aversion.
I also cook most of her food myself – and sacrifice a good chunk of each weekend to making a variety of foods to comprise a healthy, well-balanced diet for her. So, it is also frustrating that so much of my hard work is rejected and ends up in the bin. And I suppose, again, makes it personal. It also makes me sad because food can be such a source of enjoyment, if only she would allow it to be.
And I get tied in knots with worry. She HAS to have her meds. If she doesn’t have her meds, she will have another seizure, it could be a signficant one, and I don’t want to contemplate the ramifications of that. But trying to force the medicine down her throat is a horrible experience in itself, with her screaming, struggling and choking.
And, if the feeding problems or the aspiration worsens, the speech pathologists and the doctors may consider a nasal gastric tube or PEG tube for feeding. I know they are quite common with children like Lil Z, but the very thought of medicalizing her feeding is upsetting to me. It also seems like a serious step backwards – and I don’t want that (it goes without saying).
My ability to handle our “food fight” is not helped by the fact she has been more unsettled than usual lately. Dealing with a fussy baby who won’t eat is draining and demoralising. I’ve spent several nights lately where I’m not sure who is crying louder – me or Lil Z.
Lil Z sees her SALT on Monday, so I am just going to try to hang in there until then. Nobody said it would be easy, right? Perhaps what I need is some comfort eating…