Our daughter was born unexpectedly on the 10th of April 2013 at 29 weeks gestation and weighing in at 3lb 4oz. What follows is her Reflux story so far.
Following her premature birth she initially did remarkably well. For the first 48 hours she was breathing on her own and going strong; on clear fluids only via a drip. On day 3 she was started on breast milk at 2ml per hour via an NG tube but within a few hours she become unwell with what nurses and doctors initially described as a twisted bowel due to her not tolerating feeds. All feeds were stopped and the following day she was started on TPN through a long line in her leg, allowing things to settle back down again but still providing her with all the goodness necessary to grow.
During the following few days our daughter was re-started on breast milk via NG feeding tube but soon she seemed to be deteriorating once more, suffering with lots of bradycardia, profound desats and apnoea episodes that often showed her turning blue and needing oxygen and stimulation to help her recover. At this point the medical staff began treating her for an infection until blood results ruled that out. By day 11 she was suffering so many episodes and so frequently needing oxygen and stimulation to bring her back up that she was placed on a Cpap machine to help her with her breathing. She remained on the Cpap machine for the next 5 days
On Day 13 we received a phone call to say she was being started on reflux medication after it was noted that on a number of these episodes had her mouth full of milk , leading to her being diagnosed with severe reflux, She remained on Cpap for 5 days to help with her breathing and give the gaviscon, ranitidine and domperidone the chance to take effect.She remained in NICU/SCBU for just over 9 weeks while they kept her on maxed doses of medications according to her weigh. During this time she slowly learnt to feed by bottle but continued to have blue episodes linked to feeding and thus needing oxygen to recover. Her SATS would often be in the low 30s while having a reflux episode but at times they would drop as low as 11%. It was scary to hear the monitors continually beeping and watching her lovely pink skin turn blue/grey while waiting for the nursing staff to give her oxygen and stimulation.
During those 9 weeks the number of episodes slowly started to decrease until, at 9 weeks 3 days,we were finally able to take her home. She was now doing amazingly well and it was so good to get her home where she belonged and for her to start the next chapter in her life.
But, at 12 weeks old, she started to bring back all her feeds, despite being maxed out on meds. She was no longer sleeping, no longer tolerating her feeds and no longer gaining weight. She spent most of the day and night screaming in agony and arching her back so was re-admitted into hospital and diagnosed with a cows milk protein allergy and was trialed on nutramigen milk. Her medications were changed, domperidone was increased, she was already maxed out on ranitidine and because there was no room for increase it was changed to omeprazole instead.
With her faltering growth she was now being weighed weekly but her condition was not improving. She was still being really sick and now actually losing weight so her milk was changed to neocate as it was thought maybe she wasn’t tolerating the hydrolysed proteins. But once on neocate she lost yet more weight and was again admitted into hospital for them to keep a feed diary and track her calories. When things didn’t improve the formula was switched to infatrini peptisorb as it has a much higher calorie content.
By Christmas 2013 our daughter was coming up to 9 months old. She was still spending much of each day and night screaming and arching her back and still only weighing 8lb 5oz. She was now at the point of refusing all bottle feeds and wouldn’t attempt any solids so, after yet another hospital admission, she was started on NG feeds! Her 1st week with the NG she gained 3oz and we were over the moon and feeling a little less guilty about the NG tube. Over the following weeks she maintained her weight but wasn’t gaining and was again admitted so they could increase her feeds and monitor how she tolerated them. This was to be the pattern for the next few months as we waited to be seen be a specialist Gastro doctor.
In March 2014 our daughter was seen by a gastro specialist who agreed that she was suffering from severe GORD and failure to thrive. Because she has issues in tolerating large volumes he wanted to do a gastrostomy in order to start her on overnight slow continuous feed in the hope she would be able to tolerate it better and could also start eating more solids if the NG tube was removed.
At this point we felt that she had improved ever so slightly so we asked for a couple of months delay to see if we could turn things around before putting her through having the gastrostomy procedure.
Our daughter is now 14 months old her current weight is 12lb 6oz and she is still bottle and NG fed, with things slowly deteriorating, she remains on infatrini peptisorb high calorie formula, Omeprazole, ranitidine and domperidone. She doesn’t sleep well due to pain and is still really struggling with her weight gain. She also still spends most of her time in pain: arching her back and screaming in an inconsolable way. She is due to be seen again by Gastro specialist in 3 weeks time when the decision will be made on the gastrostomy. Although this feels like a backward step it may be the best way to get her gaining weight and make her more comfortable.
The hardest part about this journey so far is watching our daughter in constant pain and the fact that so many people don’t understand just how severe reflux can be and also how it can affect families on a daily basis. We’ve had narrow minded people say to us while out shopping there must be something more to it than reflux, as reflux doesn’t make babies scream like that and also wouldn’t cause a baby to need a feeding tube.
it seems reflux is often dismissed as something and nothing but that certainly isn’t the case for many babies/children and their families who are forced to live with reflux on a daily basis!
And, as I write this, our daughter’s story of courage in adversity continues.