In a manner quite befitting, reflux has regurgitated and spat itself back into our lives, seeping it’s poison into the darkness of the early morning and creeping stealthily into our bones. It has once again taken hold of our baby, stripped our family down to just barely functioning and is threatening to cave us in again. We’ve been here before. We’ve felt the misery of holding an inconsolable baby rigid in our arms. We’ve watched the pain contort on tiny faces as sleep slips ever further from grasp. We’ve begun, once more, the never ending dance on the hospital waiting lists. We’ve been here before.
Before Elsie was born, nobody really knew what to expect. We were told to anticipate a 4lb baby and instead we were blessed with a 5lb bruiser. We were told we’d need NICU and instead we narrowly escaped. We were told that our precious IUGR baby was a fighter. She would be fine. She was ready to go home, and we were ready to be her parents. It didn’t matter that she had yet to feed satisfactorily from the breast during her hospital stay; I was assured that with three other babies at home I was likely to know what I was doing. And in the euphoria that followed her birth and the revelation that she was well, I agreed. I could conquer the world.
Until that world began to peel. Until Elsie’s weight dropped to just 4b something. Until she refused to then just couldn’t feed. Something just wasn’t clicking, not like it had with the others. Elsie was different.
Grunting. All day, more so at night.
Sneezing. All day. After any stimulus at all.
Wet, painful sounding hiccups after every feed.
A constant sniffly nose.
All things we assumed were down to her being a little bit small, a little bit early and a little bit immature.
Well that is wrong. Elsie is all of those things, but she is more. Elsie is IUGR and she is not like the average 37 weeker. Her body did not grow at the same rate as other babies, inside and out.
Elsie’s tongue tie was confirmed at 6 weeks old. Her revision is being performed next week. Lots of babies with an upper lip tie have a tongue tie too, and Elsie’s is a posterior tie which cannot be treated by many hospitals in our area. Many tongue tied babies suffer from reflux because of poor attachment which leads to them taking in too much air at feeds. This causes painful wind. Elsie has always struggled to feed but her tongue tie was missed. She clicks when she feeds, and this is her losing suction on the breast. She struggles to latch on and then she slips off over and over and over. She and I find this so frustrating.
And yet, despite the tongue tie and feeding problems, her weight gain has been steady! Our little IUGR baby was proving that she just needed a little more time.
And then we noticed that the grunting we were told would disappear hadn’t really gone anywhere. The sneezes, the jerkiness and the hiccups, that were put down to her being so young and having an immature nervous system, were not improving. The constant sniffles and congestion were still there. The weight gain began to slow and she is now falling below the 2nd centile on the growth charts. But it was the face that told me the true story.
That grimace, just as she is trying to fall asleep. Just as she is giving in to the soft arms of slumber, reflux pulls her back again with a sharp tug of pain. Just as her little body dares to relax, it stiffens again. At her 8 week check it was noted that she’s very tense. She was prescribed Ranitidine to neutralise the acid, and we were told that she also has eczema.
Which slots another piece of the puzzle into place.
Often reflux can also be caused by a cow’s milk protein allergy. Congestion and eczema are also signs of this.
So she is being attacked from all angles. Reflux thanks to tongue tie. Reflux thanks to a cow’s milk allergy. Reflux thanks to an immature digestive systems due to growth restriction or just pure bad luck. Lots of IUGR babies have reflux simply because many are born too early and too small, or just too small, and growth restriction means that their systems need some extra time to catch up. Lots of non IUGR babies- like The Schoolboy- also suffer reflux. It’s a cruel guessing game at best.
So this is where we stand. The nights are filled with constant, frustrated feeding sessions that end with us both exhausted and tearful. I am following a dairy free diet in an effort to help alleviate some of her symptoms but it isn’t really having much effect yet. At her one week meds review I told the doctor how worried I was about her choking episodes and have been told to wait for her hospital appointment next month. At this point she had only choked during feeds so it was safe to assume she was taking in milk too quickly… yesterday she choked two hours after a feed, seemingly on nothing. She was unable to breath for a good few seconds, long enough to turn dark red in the face and to scare us all silly. Long enough to set the alarm bells ringing.
This is not right.
It is not good enough to wait another month for answers, for action.
It is not ok to have my baby suffer in pain, struggle to breathe night after night.
It is not right that we are getting no more than two hours sleep a night.
I will not let reflux take over our lives as it did before; I will not sit back and wait for appointments.
I want my baby to be able to eat, sleep and breathe as normal. I want her to be normal.