Why a correct diagnosis is important.

Or how wait and see doesn’t cut it.

For the first 8 months of my first child’s life I thought I had low supply, probably from insufficient glandular tissue. I wanted a definitive diagnosis though and couldn’t find anyone to give me one. Then around 8 months, after we’d transitioned to just solids and breastfeeding and put the SNS away in the closet I noticed something that led me to believe that a posterior tongue tie might be the real problem. I couldn’t get a diagnosis for that either, but the more I read and researched a tongue tie did seem to be present. That discovery filled me with hope. Hope that next time would be different, that there was something I could do to make things better. So I planned my next breastfeeding experience around that. I lined up tongue tie release, made my midwife aware of my history and suspicions and mostly did as I was told- to wait and see because this time things might be different. I was told different child, different mouth shape, maybe no problems this time. I was dubious, and didn’t use as my midwife anyone who refused to take my concerns seriously, but I did get some variation of wait and see from everyone I talked to.

Just to hedge my bets I drank various teas throughout my pregnancy and made all my postpartum meals full of lactogenic ingredients.

And then I had my second baby, not how I planned, in fact things went in a way I hadn’t thought to plan for, but I had her and it was ok. Not great, not bad, but ok. And there was an obvious tongue tie, not a posterior one, and there was some waffling about whether it would cause problems from the hospital lactation consultants, and my midwife went to bat for me and we got it snipped anyhow. It made the latch a bit better and things were going normally. We were proceeding with caution, and I was getting some varying opinions on whether intake was good. Some people said looks good, some people were concerned about swallow frequency. I was a little stressed out, but I was assured that if I hadn’t had any history that no one would be worried. I was cautiously optimistic. Things were already different and better by leaps and bounds in terms of latching and output and weight loss.

After 5 days we went home. My milk came in, though there wasn’t engorgement as such, just a feeling of fullness and heaviness. I wasn’t too worried. After all some women don’t have much engorgement, right? Yes, but. Be concerned when you keep running into signs and symptoms that by themselves don’t mean much but when accumulated paint a more dire picture.

We’d had 8% weight loss by day 6. Well within normal ranges. Considering last time we’d had 11%+ by day 5 and more after that, 8% was fantastic. Output was good, my optimism was increasing. There was still concern about swallow frequency, but things seemed to be going well.

By day 11 only 60g (2oz) had been gained. Normal newborn weight gain should be at least 30g/day. I’d been expressing milk on top of feeding to boost my supply and to give as top ups to combat the cluster feeding. My midwife wanted me to get more than 2 hours sleep per day to help my milk, and also because having a toddler and a newborn isn’t sustainable on 2 hours of sleep out of 24.

The baby was sleeping more and more. We were feeding on demand, but where #1 had screamed and cried and never slept unless held, this one would sleep for 4+ hours, fall asleep at the breast and was generally very lethargic. I was pumping 4-6 times per day on top of feeds, and giving that milk via the SNS. Output was still good.

And day 15 came and the weight was the same as at day 11, 210g below birth weight. And the baby was so lethargic at that point that getting her to take a bottle was over a 1 hour affair of cold cloths, stripping, changes and so on for 60ml consumed.

So now we went into disaster management mode. I was to give 60-100ml via bottle every 3 hours day and night and pump afterward. We practically have to force feed the baby at this point.

It’s been a few days of that and hopefully birth weight will be regained in another day or two and we can revisit other feeding options, or even go back to feeding on demand.

And that’s where we are now. I wish we’d known before that IGT was the issue. I wish I’d been able to get that diagnosis. I could have been using the SNS from around day 10 or before and doing test weights to measure intake rather than disaster management of a lethargic and dehydrated baby.

Now I’ll likely have to contend with nipple confusion, breast refusal and possibly losing any kind of breastfeeding relationship. I might still be able to pull this situation out of the fire, but a diagnosis last time would have made this easier.

 

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