MY BABY WON’T EAT

We all know fussy-eaters: one’s who insist on only eating beige food or who are particular about what goes with what. But what if your child struggles more than that? Here Lindsay aka @nourish_consultancy shares her journey of going from boobing to tube-feeding:

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• The Beginning:

• Rigby Rose Marie Wark, born 6 days late but came out like thunder. Literally. Water broke and 20 minutes later we welcomed our sweet girl into the world.

• Took to the breast right away, which was huge for me as I had a lot of trouble with my son initially with tongue tie, cup feeding and pain. This time it would be different. I said. 

• At home, feeding was going well and Riggs managed to gain all of her birth weight back by the 3rd day – all 9.2lbs of it! 

• Second baby – I had this. Leave me to it midwife… see you in 3 weeks. 

• -Strangely at 3 weeks, no further weight had been gained. I was shocked but had to be a good reason. Tongue tie – shit. Okay, all sounding strangely familiar. Wasn’t happy to be going through all of ‘this’ again but lets get it snipped and be on our merry way.

• 4 weeks. the snip. feed. sleep. feed. poop. cuddle. sleep. 

• She has always been a great sleeper. We lucked out that one! 

• 5 weeks still no weight gain. Why??!! 

• Panic sets in. 

• Doctors appointments start piling in. Breastfeeding clinic, Midwife. Paediatrician. Specialist Gastric Paediatrician. 

• Ordered to only breastfeed on one side, pump and bottle feed to see what is going in. Make sure she is consuming X amount. – – Track input and output. Try this nipple. These bottles are good. Clockwork. Weigh her before and after a feed. Weigh her daily. – – Should only be a few weeks, then you will get her back on the boob properly. 

• 6 weeks. Slight weight gain but very little. Starting to turn away from the breast, not eating as much as we’ve been told she HAS to eat in the 24 hours. 

• Diagnosed with acid reflux. 

• If that wasn’t enough, she also has a suck and swallow underdevelopment – so breastfeeding will be hard for her until she gets older, maybe 4 months? Full bottle feeds with extra fatty powder to get her weight up. Can keep her suckling on breast to keep her interested.

• Her interest in the bottle is decreasing. We are finding it harder to get her to eat. We push. Must get the numbers in. We find she eats better when drowsy or asleep. So we are confined to a crazy schedule of keeping her to sleep so we can feed her. 

• Quick she is sleeping – FEED THE BABY! 

• 7 weeks. She won’t wake up. Rigby has been asleep since midnight last night and its now 2pm – has only accepted small amounts of bottled milk. Will wake when diaper changed or undressed but then goes straight back to sleep. 

• Our first A&E visit was not pleasant. The doctors did manage to wake her… by trying to find a vein to take blood. Have you ever seen a 7 week old give blood in the arm? 4 pokes later, they got it. 8 hours later, we were sent home. No answer no solution. Maybe she was just overtired from not eating enough. Bye bye. 

• Pumping full time with 2 kids is tough! We introduce formula – Rigby is not keen. Even harder to get the bottle in her mouth. asleep or awake. Her TFI (Total Fluid Intake) is about 50% of what it should be. Panic. Tired. Stressed. Keep going. Keep going. 

• Another day of not waking up, no matter how hard we try. The culprit… the reflux medication! Not one doctor out of the 4 gave this as a reason for the extreme drowsiness… we stop these meds ASAP. 

• Back to the doctors for new reflux meds and now she is also diagnosed with Thrush – meds orally for this. I taste the meds. SO GROSS! 

• On 10 rounds of medication daily

• 8 weeks. JABS. Rigby does brilliantly. So proud of our big girl. 

• That night, Rigby’s fever is rising, she is irritable and refusing to eat. We are worried about dehydration. 

• A&E trip number 2. They check for dehydration. Although she is on the low line, not dehydrated. Thank goodness! Give me a pat no the back for being strong. 6 hours later. We are sent home. 

• Decide to venture out of the house so that our son, Barnaby who is 2.5 years can get some play time. Soft play – joy. 

• Rigby is arching and crying and losing her mind when I try to feed her. Kids everywhere. People looking at me. Stressed. On the verge of tears. Call our doctor – HELP ME! 

• 9 weeks. The decision is made to admit Rigby into hospital for monitoring and inserting a feeding tube. 

• It will only be temporary they tell us. Maybe a month tops. Just so she can see what a full belly feels like. This is the first time an aversion to feeding is mentioned. Lets just get her gaining weight. We are worried but feel relief that we will start to see the scale numbers increase. 

• Admitted on a Sunday. Rigby is a dream with the nurses. Everyone loves her. More blood work. 3 pokes this time. 

• Failure to Thrive. Aversion to feeding. The tube is confirmed as the ONLY solution. 

• Wednesday. An NG tube is inserted into Rigby’s nose. The nurses are lovely and very quick. Rigby and I both cry when its going in and for the rest of the night. 

• The numbers are rising – hurray! 

• We learn how to feed our daughter through a tube. Syringe out stomach acid. Check PH. Flush with water. Gravity feed milk. Flush with water….our new ’normal’. 

• We are sent home on a Friday. 

• Life with the Tube:

• Riggs is gaining weight. 

• No timeline is set. Lets see how she goes they say. 

• We can start her on solids early. 

• Try the bottle but don’t push it. 

•  Feed her with a syringe and dummy. 

• Feeds through the tube become 95%

• She pulls the tube out…. panic. 

• Back to A&E – more crying. tube is back in. 

• Rigby gets a nasty cold. This time sneezes the tube out.

•  Back to A&E – even more crying. tube is back in. 

• People ask “what is wrong with your baby”? Or the beloved ‘poor you’ stare and smile… when we manage to venture out of the house. 

• The tube is long and in the way. It gets stuck on everything and pulls at her face. The stickers are large and take up her entire cheek. 

• She pulls out the tube again… you get the picture. 

• I need a plan!!! Ask the OT and PED what is next?! She is gaining but not taking the bottle? How do we get her to take the bottle? WHAT IS THE PLAN!? 

• I get a smile and ‘don’t rush it’ comment. Try solids. Expect the tube to be in for 6-12 months. 

• She is vomiting – a lot. Every feed.She is uncomfortable. WHY? 

• Her tummy is not breaking down the food quick enough. Try this other medication. More medication. 

• Try solids – she is 3.5 months at this stage – she doesn’t care about solids! Not enough to maintain a healthy weight. 

• Pulls the tube out for the 10th time. TENTH TIME. We decide we can’t go back to A&E. We do it. Okay, that wasn’t so bad… besides all of the crying. 

• Endless searching of #NGTUBE & #TUBBIEMOMS… 

• I am a TUBBIEMOM! How did this happen?

• How to wean tube feeding baby. I read blogs and forums of similar stories, not many… but just enough to get me by. We are not alone. 

• This can’t be Rigby’s life for the next year. Its not fair. 

• I find a website… could this be our answer?

• Testimonies are incredible. She is in Australia and has article after article about tube dependency, feeding aversions and how to overcome them! 

• I email her straight away – within 30 minutes, Rowena replies with a 150 questions to answer. This feels good. 

•  Rowena replies with some pretty heavy theories on Rigby’s ‘issues’. To summaries; 

• Tongue tie may have inhibited her ability to feed well at the start. However, part of the reason we may have felt inclined to pressure her to feed is because of the appearance of poor growth in the early weeks. Which may have been at least in part due to something called ‘catch-down’ growth . Basically, Rigby was born nice and plump but was genetically destined to be long and lean like her brother was at birth… in theory. Babies can go through a catch down growth for up to a month… but the doctors kept pressuring us to make Rigby grow. Which we then pressured Rigby to eat in order to grow. She was not gaining an ‘average’ amount of weight… so spring forward 4 months and all of this may very well have been avoided IF any of the number of medical professionals considered this. 

• Also a good chance we were overfeeding Rigby (through the tube) … her TFI was 30% over the recommended intake in Europe, Australia and New Zealand. We are in Canada, who has a different idea of what is a healthy intake. 

• I felt sick when I read Rowena’s 2 page reply on Rigby’s history. 

•  Medical professionals are incredibly clever people. They go to school for years and know how to fix sick babies – I am forever grateful for the doctors who tried to help Rigby. However, Rigby was not sick. She was just developing at a slower rate and instead of seeing this, the doctors had to diagnose her with something … well, medical. There is a very good chance she never did have reflux or a suck and swallow underdevelopment. She just didnt want to eat as much as we wanted her too. So she didn’t 

• The tube weaning begins

• After 2 months of having the tube in, ruling our life we find out the tube was a ‘band-aid’ for the real problem. The feeding aversion. In fact, tube feeding indirectly reinforced Rigby’s bottle-feeding aversion because it allows her to avoid feeding orally.  

• I stop myself from living in the past and look to the future. 

• Rowena is going to help us wean Rigby off the tube

• 7 days after we start the weaning process – we take the tube out. 7 days!! 

• 7 days of tears and stress and happy moments when Rigby starts to except the bottle

• We are now on day 12 and still tube free! 

• Still a long way to go. Rigby has been spoiled with only breastmilk but we will have to start introducing formula soon. 

• There are still bad days or hard feeds but she is learning and so are we. 

• We let Rigby lead the feed – she now decides, which I know she enjoys. 

• We hope to never see that tube again!**Lynsey has also started Nourish Consultancy offering support and advise on feeding aversions.**