There’s a lot I want to post about. Finding the time is hard, and deciding which angle to take is also difficult. There has also been some discussion recently on my facebook news feed about things that hit close to home. So I will try to make some sense of what is spinning around my brain.
Griffin is 7 weeks. At 3 weeks he started screaming. To give you some context: he was born at home, I had a haemmorhage, we got it under control so I stayed home however I was very weak for 2 weeks and had to rest. He has had ONE decent night’s sleep in his life. The week he turned 2 weeks was the Christmas lead up so I didn’t get much rest that week (and in fact was bleeding heavily again, until I passed a sizeable clot). He was still hurting me when he fed.
The week after Christmas was still busy and he had started to get “fussy”. Crying inconsolably unless asleep or at the boob (and since it was hurting me, I wasn’t thrilled by that). I read this article about wind in babies. I felt somewhat reassured that this was all normal. But he certainly seemed to need to be held upright, and would burp quite wet burps when held thusly, so it didn’t really fit with my experience with Griffin. I re-read the fussy baby section of the Sears’ Baby Book. It got worse. I was feeding on demand, co-sleeping, had him in a sling… remember the haemmorhage? Walking round and round the house three weeks post blood loss is not really good for recovery. But I did it, because you do what you have to, right? I took him to chiro twice, no joy.
I paid closer attention to what was going on with him. I looked up his symptoms. Everything pointed to silent reflux. He wasn’t puking but we could hear him refluxing, and he would often grimace as he swallowed it back down. He choked on milk. This was especially bad at night, and there were times he’d choke and gasp for breath (thank crap we were co-sleeping). Sometimes he stopped breathing. He wheezed and snuffled, sounded congested even though he wasn’t. He hiccupped a lot, did a lot of wet burps. He slept restlessly, squirming and waking easily. He gagged himself with his fist while holding his head to the side, arched his back, gulped and spluttered. Classic signs of silent reflux.
I wanted to avoid putting anything in his gut. This was the one baby I’d managed to ensure got a virgin gut. That beautiful unhindered birth, no drugs or antibiotics. But out of desperation we tried one colic remedy. It didn’t help.
At 3 weeks and 5 days the crying reached an intensity that sent me over the edge. He screamed himself hoarse, he was losing his voice. Lloyd said he sounded like a dying seagull. “This is not normal, there is something wrong with him”. I was crying, wanting to make his pain go away. I said I wanted to take him to a gp… a huge thing for me as normally we avoid them unless absolutely necessary. I hated the thought of exposing my newborn to unknown germs in the waiting room. But, something was not right.
We took our chances with a potluck gp. I had been talking our woes through with some friends who’d had reflux babies and I got the name of a specialist paediatrician so we could get a referral. At the gp we outlined his behaviour and symptoms (he obliged by screaming constantly). I asked for the referral. He gave it, said it could very well be reflux and prescribed Losec. He said it could take a while to work, which I’d known was the case.
We got the Losec. I was resolute. As much as I’d wanted to avoid this, I didn’t want to stuff around trying this diet, that remedy, etc while my baby suffered. I conceded dairy (sob) but swore no more eliminations. I couldn’t handle the thought of depriving myself of food on top of everything else. So we gave him the Losec. I did feel awful about his gut. But life isn’t perfect and I did what seemed right at the time.
His latch when feeding was still horrendous and I was in a lot of pain. I was trying for small frequent feeds to help the reflux but really I was trying to space them out so I got a break… so he was having quick feeds every hour. His poos started to go green two days before we started the Losec (hence me conceding the dairy just in case). A friend told me that bad latch after 4 weeks was not good so I should see a lactation consultant. I didn’t know who I should see, so asked for recommendations. Two people mentioned Bridget Ingle, and I remembered hearing about her when I was having breastfeeding issues with Kira. However I also remember she was nigh on impossible to get an appointment with! But I thought I’d try, on the offchance. And, amazingly, I got an appointment.
We toddled off to see Bridget. She winced at the sight of my poor compressed nipples. Sat for quite some time with Griffin, leting him suck on a gloved finger, poking around his mouth. The first thing she said was “Do you hear those noises?”
Well yes, we’d noticed his funny little noises.
“That’s laryngomalacia. It means weak larynx.” And she explained what THAT meant for him and us. And she outlined a bunch of symptoms that correlated with silent reflux as well. My jaw was possibly on the floor. A mild case, but nonetheless something physical that was causing issues.
The next revelation was that he had a posterior tongue tie. I was pretty gobsmacked. “But he can stick his tongue out!”
Bridget explained it wasn’t about that, it had to do with the function of the tongue. In Griffin’s case, he could stick his tongue out a little but he couldn’t move his tongue in the required ways for proper breastfeeding technique. And this was also something that could affect him later on, with eating solids, speech and oral hygiene.
Bridget explained that normally she would recommend a snip straight away, but because of his weak larynx it might not be such a good idea. After checking my positioning she made a few minor adjustments and suggested continuing with good positioning and tunny time as therapy for his throat/tongue and larynx (strengthening muscles). If there was no improvement it would be time to consider snipping. He also has a high arched palate which further complicates the latch issue, and was probably caused by the tongue tie in utero.
We had a very interesting discussion about reflux. We mentioned that we thought he had silent reflux and he was on medication. I said it sounded like maybe his reflux was these other things combined. Bridget said there are links between reflux and tongue tie. When I got home I looked up both conditions and both can cause reflux symptoms. Hmmm.
Reflux and tongue tie
Laryngomalacia and reflux
Armed with our new knowledge we started tummy time, and I paid attention to positioning. I fed him as he wanted as Bridget reinforced that breastmilk is a natural antacid and is the best thing for him. I took him to a different chiropractor. We continued with dairy free and the losec, because of course we didn’t know for sure what the deal was with the reflux. After a few days latch was still abysmal so I got the details of two doctors who snip tongue tie. I called up and luckily got an appointment due to a cancellation.
We shared the new information with the world. It seemed we had some fairly concrete reasons for Griffin’s “fussiness”. However people seemed keen to reassure us that sometimes babies cry, for no seeming reason. That it’s normal for babies to cry. I can’t express how frustrating it is to a mama of three children, who has been there 24/7 since the child’s birth, who has woken with every choking or apnea episode, who has listened to her baby’s cries become progressively weaker, who knows with every nerve in her body that her baby is NOT crying for no reason… to be told again and again that “crying is normal, that sometimes babies cry for no reason” especially AFTER telling people that he has health issues that are affecting his feeding/sleeping/wellbeing. Yes, I know babies sometimes cry for reasons we can’t fathom (though I tend to believe there is always a reason, we just might never know why) but it is so minimising to tell parents “all babies cry” in these situations.
He cries because he chokes when he feeds. He has a larynx that doesn’t function normally. He cries because he’s not feeding properly. He cries because his experience of the world isn’t normal. He has more wind and gas than your average baby because of physical issues that mean he swallows more air. He has reflux episodes that probably irritate his larynx. He doesn’t cry for NO REASON.
Now thankfully his weak larynx is a minor condition that he will grow out of. Thankfully tongue ties can be snipped. His palate is more tricky but should resolve over time. I’m incredibly grateful these are all minor and temporary issues. But living it, especially what it means for breastfeeding, is incredibly difficult.
Rant over.
We saw the specialist paediatrician. I left feeling deflated. He didn’t examine him. He listened to us describe his symptoms, said it could be acid reflux or food intolerance from my diet. To continue dairy free but increase the Losec frequency to twice a day. He told me to continue breastfeeding on demand. But that was it. He wasn’t interested in the tongue tie or the weak larynx. This puzzled me, as surely it was relevant?
The next day was the tongue tie snip. I was feeling pretty anxious about it. I’m not into body modification for babies, but I knew this was correcting an abnormality and breastmilk is of course something he needs (especially as he’s at risk of more respiratory and ENT issues with his weak larynx). And why should breastfeeding remain excruciating for me?
I was a little worried the doctor would say “No tie” but he could definitely see and feel it. It was done in a minute. Griffin latched on beautifully but he still compressed my nipple. But I noticed an instant improvement in his suck/swallow co-ordination. Instead of gulping the milk down and gasping he was controlling a lot better. Promising!
I took him home and worked fervently on his positioning. No improvement in latch, but suddenly we had a vomiter! It didn’t seem to be bothering him, and he started visibly chunking up. I experienced some engorgement again as he increased my supply. His poos seemed to be going back to normal. We made the executive decision to take him off the Losec… his chucking seemed more normal and a lot of his symptoms could be attributed to the larynx issue. We thought we’d keep an eye on him and see if he started going backwards, as day by day he seemed to be a bit more settled. But he was still damaging my nipples. We went back to Bridget. The day before his poos started going a bit iffy again. Anyway, we saw her and his tongue is moving more freely but he’s still retracting it for feeds. Bad habit! We were given exercises for encouraging him to keep his tongue out.
So that’s where we’re at now. The poos seem to be a lactose overload issue, he’s getting too much foremilk and not enough hindmilk so I’m trying different ways of dealing with it. We’re going to the chiro regularly. He has good mornings and crappy evenings. And breastfeeding hurts. I can’t believe that I’m going through breastfeeding pain again. I was so terrified that this would happen with Imogen, yet after the first week of relearning how to feed a newborn our breastfeeding journey was without hiccups. It was smooth, easy, pain free. This time I had no worries. My third baby! I knew what I was doing… I feel like I’ve been hit with a brick sometimes, when I think about it. Not fair. It’s NOT FAIR. I can breastfeed easily, I have a great supply (too good maybe!) so why did this happen to me again? And knowing that all he has to do is stick out his tongue… but how do you beg and plead a newborn to do something when they can’t understand you?
I’ve also had a lot of friends share an article on the overuse of reflux medications in infants. It’s hitting a nerve I admit. I’m sure it’s not personally aimed at me, but it still stings. We did the best that we could at the time, not knowing exactly what was going on with him but knowing at least that something was not right. I do wish I’d seen Bridget first, but what’s done is done.
I’m trying very hard to stay positive, to think that yes, at some point he’ll get it and it will be fine. That my nipples won’t become so damaged that I end up with chronic pain like I did with Kira. It’s hard, though. I’m strong, but I don’t want to have to be.
