Dealing with Reflux first hand
As a sleep consultant (and while nursing adults), I had encountered reflux (or Gastro Intestinal Reflux Disease, GORD) many times, and have helped many families through sleep challenges they have encountered whilst also battling this condition with their babies. But this experience had nothing on going through the condition first hand with my second baby (now 4 ½ months).
Carys started off ok on the feeding front, but after a couple of weeks some red flags started to emerge. The big one being slow weight gain, and fairly suspicious poo! After eliminating dairy, the poo improved, but the weight gain stayed slow. I couldn’t get Carys to feed for long enough to get what she needed. She would either fall asleep, or just scream and flat refuse any more. No amount of winding, or winding solutions would help her. We saw a lactation consultant, who suspected reflux, but didn’t really have any workable solutions for Carys that would improve our situation. Luckily Carys had taken a bottle early on, so we were able to feed her this way for a few feeds a day and start getting thickened milk or gaviscon into her. Luckily with this her weight picked up! But with the increased milk intake, a new struggle emerged. Regurgitation. I have never felt so devastated as I have when Carys would chuck up an entire feed after it took me an hour to get it into her! Paediatricians suggested more smaller, frequent feeds, but Carys had such an aversion to drinking that this only reduced her intake. The only time she would feed well was when she was really hungry at night. A breakthrough came when we tightened her routine, and kept feed times to 3-4 hourly so she was hungry enough to feed well. We were doing a mix of pumping for bottle feeds, and breastfeeding at night, but I was still wanting to breastfeed more than bottle so did attempt to keep this and try more breastfeeding for a couple of days. Carys latched fine, but she still had a big aversion to drinking enough and with this presented a new problem- mastitis. Over the period of 4 weeks I was constantly on antibiotics (also while on a trip to the UK with the family), and battling continually blocked ducts- at one point my milk was pussy I was so sick! We were at our wits end, stuck in a cycle of pumping, breastfeeding, bottle feeding and managing the vomiting. We needed to have a back up as my milk supply was pretty dodgy. I was happy to use formula and mix feed, but Carys was not quite so happy with this arrangement. As it was likely Carys had a dairy intolerance, we tried soy formula, and then pepti junior, but both of these ended up flaring up the reflux, and Carys began to choke and gag while on her back (something she had never done before). I felt incredibly stuck! The only way to manage the mastitis was to begin to pump and bottle feed full time, as this was the only way the my ducts could be kept clear. Finally Carys gained some good amounts of weight and hugely increased her intake! We had by this point dropped off 3 percentiles, but managed to claw it back to 2 again. However after 2 weeks of fulltime pumping I just couldn’t cope any longer. Something had to give so we made the decision to move to formula. As Carys hadn’t tolerated soy or pepti, we were left with neocate as our last option. Carys has now been on this for 3 weeks, and is slowly getting back to where she needs to be intake wise, but we have had a big curveball along the way with a virus going through the family, resulting in 3 days of Carys vomiting up nearly all of her feeds, and ending up in hospital on rehydration.
After such a rollercoaster with feeding, it is still something I feel will take a while to finally settle down for good. It took me some time to even admit that she didn’t just have “normal” reflux, and to try Losec to see if we would get some improvement with feeding aversion from that. We did find that the Losec only made things worse for Carys as she became very windy, but luckily for now we are keeping on top of it all with Gaviscon. Getting feeding right is such a huge challenge for some Mums, and I admit now I was very hard on myself to try and get it right for Carys, so she could gain weight and be happy. I wanted to breastfeed her for a year, and it was a hugely difficult challenge for me to overcome not feeding her breastmilk, especially when she did so well on it exclusively from a bottle. I have learned now that it’s not the be all and end all, and that my baby can be nourished from other sources. I am also very lucky to be part of an awesome team at Baby Sleep Consultant, who each have something to give and were able to help support me through reflux and feeding issues with Carys, so I certainly did not feel alone. The bigger picture is so important, and I had to consider that both my children needed their Mum to be happy and healthy so that I could raise them without undue stress. Since I have moved on from the struggle of providing breastmilk for Carys, everything has been a lot better. It’s also all about perspective, although I look at Carys and despair at her being so tiny (and get sick of the comments from people that “she is so tiny! Was she prem?”) I also see a very happy little baby, who is not really bothered at all by being small! She has been pretty good with sleeping (I generally have to wake her to feed twice a night), and she is developing fine with the cutest personality. Even through her being sick she still flirted and giggled at the doctor when he put the stethoscope on her belly! And very nearly rolled in the cot in the hospital (she did it properly for the first time yesterday too! Proud Mama right here!)
If you are a parent battling GORD with your baby, please look after yourself. Please seek support from whoever will listen to help you find a solution that works for you and your baby. It might take a bit of trial and error to find a way to manage regurgitation and weight loss, but please also consider how everything else is going too. As long as you have medical practitioners who are taking you seriously your baby will be ok, and in time things will get better as most babies do grow out of their reflux by age 1 (that’s what I’m holding out for anyway!)
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