This story is a member’s personal experience and opinion, and is part of their healing process. Please be aware that some of the stories on Crying Over Spilt Milk are of more severe or complicated cases of Gastric Reflux. Serious or complicated cases of Gastric Reflux are rare. If you think you may be disturbed by some content, please visit this page before deciding to read further: www.cryingoverspiltmilk.co.nz/InfantGastricRefluxStories
Bodhi’s first few weeks he didn’t cry a lot, but he fed all the time, as in literally constantly. He wasn’t always sucking as if he was getting anything out, he would doze off and give the occasional tug, but it always, always had to be in his mouth. I got used to cooking and then eating while feeding, hanging out the washing and typing emails while feeding, and in the end gave up trying to detach him at all and often even had my showers with him attached. Nothing comforted him aside from the breast; he would not stop screaming if I cuddled him without feeding, nor if anyone else cuddled him, no amount of walking in the pram, driving in the car or anything at all could make him happy apart from sucking at the breast. It was not the kind of screaming that tires babies out so they fall asleep, or that they can be distracted from, or can be plugged up with a dummy (which he wouldn’t take). This was the kind of screaming that got louder and louder the longer it was left, eventually turning him blue as he choked, threw up and continued screaming louder and louder and higher and higher pitched with no end until he got that breast back, where he would then whimper as he sucked until he was completely convinced I wasn’t going to take it away again. At night he would do better, going an hour between feeds sometimes, sometimes less. I quickly got tired of getting up that often, and he started sleeping in our bed, where I just slept with a boob hanging out and every now and then he lost it and whimpered and I plugged it back in and went back to sleep.
MIDWIFE / DOCTOR / LA LECHE
Despite this constant feeding/snacking, he was not putting on much weight and took four weeks to eventually get back to his birth weight. I questioned the midwife regularly about his constant feeding, and every time she told me that some babies just ‘camp out at the breast’ for the first month or so. Also that some babies just fight with the breast and are grizzly even when eating, they’re just generally frustrated and grouchy babies, a personality, not a problem. At about three weeks I took him to the doctor and told her that he had a sore throat as he sounded croaky when he cried. I told her about his constant feeding too, and she also told me that he was a hungry baby, he wasn’t putting on weight so I had to just keep doing what I was doing, feeding him whenever he wanted to eat. I went to a La Leche League person and was told the same thing, just keep feeding him; he is totally ‘within the realms of normal’. Being my first baby (thank GOODNESS, because I have no idea how I could have coped with a toddler as well), I really didn’t know what was normal and although I was sure he wasn’t happy, I kept on repeatedly being told I was doing great and just keep feeding him. Since the only complaint I could verbalise was that he wanted to eat non-stop, I decided maybe I was just expecting too much too soon.
I was SO determined to breast feed, I hadn’t had any sore nipple problems etc, but I HATED it with such a vengeance, I was completely and totally attached to him 24 hours a day. I never had time or spare milk to express so no one else could take a turn. It was stinking hot and we were two hot sweaty bodies pressed together continuously. Both hands were always tied up, one to hold him and one to stop my breast engulfing his face and suffocating him. I had my husband’s parents on my case because he wasn’t putting on weight, telling me it was because my breast milk must be inferior and I was giving him brain damage as a result, and lots of (far more supportive!) people suggesting I put him on the bottle to save my sanity. At around four weeks I was frustrated beyond belief with breastfeeding as I thought maybe he wasn’t getting enough milk out of me and that’s why he was ‘always hungry’. I had been noting down his feeding times on random days, to reassure myself that I really was feeding constantly, and not just going insane and overreacting. It read like “24 minutes on breast, four minutes off, 18 minutes on, six minutes off, 14 minutes on, two minutes off, 42 minutes on, 11 minutes off”… continuously like that over any 24 hour period. Also, the fact that he wasn’t always sucking properly but just holding it in his mouth meant he was licking and tickling me which grated on my nerves to the point that this was the first and only thing that ever made me actually mad with him, instead of just feeling really useless and sorry for him like the screaming did. I desperately wanted to throw the whole thing out the window but at the same time I was determined that I would breast feed him because I wanted him to have the immunities etc from breast milk. I started giving him one bottle of formula before bed as people told me this would help him sleep better. It didn’t, but it did make him throw up extremely violently. I tried him on goat’s milk formula instead, which he kept down. It still didn’t help him sleep better but knowing that he could take the bottle happily if I ever really desperately needed to get away from it all gave me such a feeling of freedom. At around five weeks I found a happy medium of breast feeding and bottle, giving him one bottle a day at whatever time of day I just needed the break, and carrying on the constant breastfeeding the rest of the time, which meant that for at least half an hour a day we weren’t pressed together quite so closely. This gave me just enough freedom to keep going and by six-and-a-half weeks I was feeling happy about breastfeeding and very glad I hadn’t given up in the really aggravating week/s.
Having been told by midwife, doctor and La Leche League that his feeding was normal and not a problem, I decided that maybe he had some internal thing making him unhappy, even if the amount he was feeding was fine; I still thought he should seem ‘happier’. So I took him to an osteopath. It was supposed to be just one visit, but Bodhi ended up screaming his way through three visits, setting me back $180 and not really achieving any of the promised noticeable difference in behaviour that I could tell. But on the last visit when he was around six weeks, Bodhi spit up during treatment and the osteopath pounced on this as confirmation that the problem was to do with acid (which he hadn’t mentioned before but now seemed to have suspected all along). He sent me to the health store to get some salts to neutralize acid. They didn’t seem to do anything either but at last I felt like someone acknowledged that there was a problem, and he was actually in pain and not just hungry. So I started looking up about acid and digestive systems, and came across a reflux website. I thought maybe this was his problem, and I made another appointment with the doctor for a few days away.
ALWAYS SCREAMING INSTEAD
At four-and-a-half weeks I decided feeding 17 to 18 hours out of every 24 was ridiculous and I was going to make him last two hours between feeds, and go down for a sleep in between as well. DREAMS ARE FREE. This meant that I fed him for about half an hour, cold flannelling etc him to stay fully awake and sucking properly through the full half hour feed, and then he screamed for the remaining one-and-a-half hours until his next feed. No matter how drowsy I got him, or even completely asleep, or semi-awake, there was no way in hell he was going to get put down to sleep, and there was no hope of him not screaming his way through the one-and-a-half hours between feeds. Once in a fit of desperation I decided he had a full tummy, clean nappy etc and would HAVE to get tired sometime and if he screamed long enough he must eventually go to sleep, he screamed for three hours without stopping for breath before I put him back to the breast, with me just as upset and worn out as he was by then.
So now he wasn’t feeding constantly, he was screaming constantly instead. I lasted with that whole routine scenario for a week and a half, by which time I was totally and completely shattered. I had my doctor’s appointment for a couple of days away, ready to talk to her about reflux, and I had my first plunket visit coming the day before.
PLUNKET / SLEEPING
Plunket first came to visit when Bodhi was six weeks old. Trying to hold out feeding him to two-hourly had now changed my complaint from “he won’t stop eating”, to “he screams inconsolably 24 hours a day except while eating”. She asked how he was sleeping and I told her that he would wake at 6.45am and not sleep again until he went down at 10.30pm, and still would wake every couple of hours through the night. If he did sleep during the day, it was the odd 10 to 20 minute catnap on me. He never ever would sleep more than five minutes when he was put down. She was quite fierce in telling me I had to put him down awake etc… all the things I had read a thousand times in all the baby books and which were just so far from being relevant to this baby of mine who spent all day either screaming in agony or whimpering clinging to my breast for dear life. I obstinately insisted “tried that, doesn’t work” to every one of her many forceful instructions. Eventually she realized that I honestly had tried everything, and without me mentioning my suspicions at all she came up with exactly the same conclusion – he’s got reflux.
I went to the doctor the next day with my list of Bodhi’s behaviours, which was:
Wakes at 6.45am and does not sleep again until 10.30pm. If he does, NEVER longer than half an hour, and never before 6pm
Gorges constantly, if he’s not on breast, he’s SCREAMING. (Doesn’t scream himself to sleep, can scream for over an hour without pausing, and still be going strong.) Fed 17 hours out of 24 the days I kept notes. Refuses dummy, must be breast.
Arches his back and throws his head back all the time.
Has about eight episodes of hiccups per day.
Gags a lot, choking but the real gagging kind.
Will not be put down while awake – SCREAMS blue murder.
Vomits after every feed and often.
Is VERY rattley in the chest / breathing sounds like he’s wheezing or even gargling, sometimes snores whether asleep or awake
Chews his tongue a lot, he looks like he has chewing gum in his mouth, and often pulls a face as if what he is chewing tastes bad.
At night sleeps 10.30pm – 1.30am, 2am – 3.30am then up every hour until 6.45am. Then awake until 10.30pm.
I didn’t necessarily think that all these things might be reflux related, just they were all behaviours that were very typical for Bodhi and maybe she could find something that related them all.
DIAGNOSIS AND TREATMENT
The day after plunket, I went to my doctor’s appointment and told her that plunket said it was reflux. I didn’t get around to my list of symptoms as she was happy to agree with plunket and prescribed him Losec. I don’t think she had a lot of experience of the condition in infants as she could only find the adult dosage on her computer, so went and asked a receptionist with a reflux infant how they had been prescribed it. She came back and gave me instructions for the Losec, to do with opening the adult dosage capsule, mixing with water and syringing 1/3 of that into Bodhi. As soon as I got home I realized none of that was going to work, as it was non-dissolvable granules and not powder. She told me if it was going to work, it would work straight away, like the next day.
The first day after using Losec Bodhi was an angel. He fed two hourly, let me put him to bed drowsy and fell asleep himself after playing in his bouncer happily for half an hour after each feed – it was a dream. The doctor rang to check if the Losec had worked and I gave her a glowing ecstatic report. That lasted one day. The next day, all hell broke loose again and we were back to where we started. More reading on the reflux boards etc convinced me not to give up hope, that Losec usually takes about two weeks to take effect. It also convinced me to get some Gaviscon as well as the Losec, which I gave to him before each feed.
Of course now that I had a confirmed diagnosis, I read even more about reflux and on reading that one third of reflux babies also have a dairy allergy, and that caffeine makes reflux worse, I went totally dairy and caffeine free. The first day I had hell headaches from Coke withdrawal!! I discovered that there is almost nothing I like to eat that doesn’t have dairy in it, and that a few days before Christmas is a really BAD time to start such a restrictive diet. But I survived the whole Christmas/New Year period with not one bit of dairy or caffeine passing my lips. The day that I did decide to see if I could get away with a few glasses of coke, it was glaringly obvious that the answer was NO! He had a terrible day. The dairy thing was harder to tell, but because he had such a bad reaction to the cows milk based formula I kept up with it.
With the combination of Gaviscon and Losec, slowly over about the next week and a half, a smiley, happy, alert little boy emerged from my red cranky baby. I could put him on the floor with his toys for the first time, and watch him kick and smile, and recognize me and try to talk back to me. By eight-and-a-half weeks I could see a real personality instead of just a mask of pain. He really hated lying on his tummy on the floor, and at not quite eight weeks old he started rolling from his tummy to his back as his cunning trick to avoid any tummy-time at all. He could last two hours between feeds, which was still nothing compared to the other babies of his age, but to me was a dream. He still didn’t sleep during the day any more than a couple of 20 minute cat naps on a human, but that human could now be anyone with a heartbeat. It didn’t have to be me. I was just so happy to have a baby that I was physically capable of comforting.
I thought I was sweet now, that gradually over time I would stretch out his feed times, and work on the bad habits of being held 24/7, not sleeping during the day etc which he had learned during his horrible reflux weeks, and that things were looking up. I gradually cut back on the Gaviscon so he was having it roughly every second feed, or just when he was unsettled. He seemed to be coping well with that. Then at nine weeks he had a day where he wanted to eat a lot more frequently than two hourly. He didn’t seem to be in pain so I put it down to a growth spurt and just spent the day feeding him. The next two days he was clearly in pain and although I cranked the Gaviscon back up to every feed (hard to judge when it’s constant feeding, but like every two hours), he still was very unhappy. I rang the doctor and asked if I could up his Losec dosage, which I did, but over the next few weeks things stayed miserable. We had slipped back to at least hourly feeding day and night. His weight gain, which had always been negligible, was beginning to taper off even more.
PAEDIATRICIAN / MOTHERCRAFT
At 16 weeks I finally got a referral to a paediatrician. They immediately cranked his Losec dosage up to 20mg per day, and packed us off to Mothercraft in the Waikato. We stayed there for a week, and by means of test weighing and expressing after every feed, they found the reason he was wanting to feed so often – I didn’t have anywhere NEAR enough milk. You would think I would have figured that out months ago, but I had been so hammered with the ‘breast is best, everyone can do it if they try hard enough, you’re doing a great job just keep going’ speeches, I just assumed it was ok. From time to time I wondered if I had enough, and went on a major campaign of natural supply-boosting products and techniques. Since the day in the doctors office at six weeks old where she asked if I had enough milk and had me squeeze my nipple, which spurted across her office, and to which she responded that I had plenty of milk, I just did that every time I doubted my supply, and as it always spurted, I assumed we were good. At Mothercraft Bodhi got topped up with a bottle after every feed while I started on prescription medications to try and increase my milk supply. Even the prescription medications and expressing after every single feed didn’t do anything at all to increase my supply. The Mothercraft nurses were supportive of my trying to continue breastfeed, but seemed to believe I might be flogging a dead horse. I was still blind to that truth at that stage and determined to keep going.
Bodhi spent the first four days screaming in indignation at the strict sleeping routine Mothercraft forced him into, but even with him screaming all day for a week I was in heaven with four hours between feeds and someone else there to share the responsibility and care with. On our last day there, he finally settled into his new sleeping routine – up for no more than two hours and then asleep for two hours. At four months old we had finally achieved the impossible four hourly feeds and two sleeps every day. On coming home I persevered with breastfeeding and topping up at each feed for another month. Doing both bottles and breast is a nightmare but I was determined not to give up. I went on a second course of prescription medications, and repeated all the natural remedies and continued expressing at every feed. I had bought six different breast pumps by the time I finally gave up breastfeeding at five months! None of them got anything out of me. When I finally did give up and admit defeat at breastfeeding I felt like a complete failure as a mother. I couldn’t find any information on what type of formula or what type of bottles etc, other than the necessity to sterilize properly, and not even any direct instructions on how to do that. I was almost driven to tears every time I picked up the formula tin and was confronted with the big disclaimer in bold type “breastfeeding is best for your baby…” Now though, when I look at Bodhi’s early baby photos, up to five months old, I am horrified by how thin and pale and unwell he looked. On the one hand I am sad I was unable to breast feed him, and on the other hand I’m sad I didn’t put him on the bottle earlier, as since he’s been exclusively bottle fed he has totally thrived and turned into a happy chubby little boy. His weight stopped tapering off at the bottom of the weight graph and shot up to the top of normal on the chart.
Now at seven-and-a-half months he still doesn’t sleep well at night, but his day sleeps are like clockwork. He isn’t in pain, though he is still very very spilly. A few weeks ago he had a tummy bug and didn’t keep any Losec down for a few days – all hell broke loose. We have just had a paediatrician appointment and they plan to see him again at ten months with a view to taking him off his medication. As long as he takes his medications at the moment he is a happy, healthy little guy.
I wouldn’t have survived without my mother. In the first few weeks she would come and hold Bodhi screaming while I had a shower, even though I knew he was screaming the whole time it was so much better knowing that someone was holding him and loving him and talking to him, rather than that I had just dumped him on the bed and left him to it while I did my thing. My husband couldn’t handle the crying at all. He is home all day on ACC but instead of pitching in with housework or cooking meals, or holding baby while I did those things he just hid. He literally spent all his days in the garage working on his boat, all his evenings outside in the spa and all his nights on the couch in the lounge. I basically never saw him. On the rare occasion that he would hold the baby, he would do so for about 30 seconds until he started crying, then tell him off for crying in a loud firm voice, and when he didn’t stop crying, would tell him that he “had to learn” and plonk him unceremoniously on a couch, floor etc and go about doing what he wanted to get done. If I left Bodhi crying in the same room as my husband, he could just switch off and ignore the screaming for ages. He wouldn’t get up and take over the dishes/laundry/whatever from me so I could fix the baby, and he wouldn’t pick up the baby either. In all the time that Bodhi would scream, I never once (aside from that week of breastfeeding where the tickling made me MAD) got angry with him for crying, I only ever felt sorry for him. But the more he screamed the more infuriated I got with my husband for being off playing in the garage or soaking in the spa at the time, or for sitting there listening to it and not helping. I’m not just barking on about this to slag off my husband, for one thing because I know at least I could always feed Bodhi to quiet him, I can imagine how immensely frustrating it must have been to have literally nothing you could offer to comfort him. BUT anyway the reason I say all that is because I constantly heard about how the fathers were bonding with their babies and sharing night feeds etc, and it was just one more thing that added to my feeling of isolation in this experience, that my husband couldn’t stand to be in the same room as the baby and regularly made comments about sending it back or that he wished he’d got the new boat instead etc (and wasn’t joking!). No matter how hard a constantly screaming baby is for a mother to deal with 24/7, there’s something about not having a choice in the matter, you just HAVE to deal with it. I guess husbands aren’t physically forced to, and so, well I guess some of them just don’t. But now that Bodhi is old enough to call out for ‘dada’, and to laugh at my hubby pulling funny faces, or to enjoy chasing the cats around in his walker, his daddy is starting to really bond and spend a lot more time with him. So if your partner isn’t bonding with baby at all and can’t handle the crying at all… you’re not alone on that one and they do come round once baby is older and more fun to be around. It would have made a real difference to me to know that I wasn’t the only one with a husband like that when I was so alone in dealing with this experience.
I am only contributing this story to the website because I consumed every word on that website when I was first dealing with reflux, in particular the personal experience stories! So I want to do the same for the next unfortunate people in line with reflux babies. Thanks heaps for the simply awesome job GRSNNZ have done with their website and for the “everybody” board. I know it saved my sanity and my baby’s life, and no doubt has done the exact same thing for hundreds and hundreds of other bubs and mums. Really really muchly appreciated.
© Sarah and Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust 27/06/2004.