"My baby was crying because she was hungry and I couldn't even do the one thing a mother should be able to do, feed her baby.."

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Up until Summer was 6 months old, feeding seemed a success. She took to a vital bottle fantastically, so much so if I decided she'd had enough orally and to put the rest through her tube to stop her from getting too tired she would cry because she was enjoying oral bottle feeds. Weaning came second nature to us, we were learning together every step we took.

Once Summer was confirmed to be aspirating (milk leaking into her airway) she was pronounced nil by mouth. The face of feed changed drastically in every single way.

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This particular week, 5th-9th February is Feeding Tube Awareness Week. I think its important to put awareness out into the world about what its like to be living life with a feeding tube. There are so many people in this world that rely on feeding tubes just like my baby does.

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Once Summer was pronounced Nil By Mouth our feeding journey became really difficult. Although we were no longer needing to schedule bottle feeds, dummy dips, puree feeds and tube feeds all in one day we are now infact having to schedule her tube feeds and volumes of feeds so she has the right amount she needs daily to gain weight and thrive. Just as we were getting to grips with timings of feeds and volumes per feed it took a turn for the worst and spiralled down hill.

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Summer's reflux hit us like a thousands bricks, getting right in the way of our perfectly planned schedule. Reflux is common in babies. But reflux is simply part of having a baby with PRS, Pierre Robin Sequence. Reflux is a funny thing, it seems to come and go in waves. Well this seemed like a tidal wave that just wasn't slowing down.

Summer battled with reflux when she was a little baby however her doses of ranitidine and lansoprazole seemed to keep it manageable and bearable. Now at 9 and a half months old Summer's reflux is back with a vengeance. It seems her first feed of the day is well managed yet her three day feeds she projectile vomits through them all. It's so frustrating as a mum if your baby has reflux but for a tubie mum having to gravity feed and spend around 40 minutes holding the syringe to feed your baby for them to just bring it all back up. This got us so down Paul & I took Summer straight to her GP, he immediately maximised her dose to the strongest reflux medicine in hope it should have an affect within a couple of days. Nothing seemed to work, I felt so hopeless. 

We were due to see our dietician that week so we held tight and fought through it. Our dietician recommended to add a sachet of gaviscon to the three of Summer's feed in which she's sick on. 

In hope the gaviscon and maximum dose of reflux meds would kick in and so we continued, feeling super deflated we were adamant not to give up.

 

Why was nothing working? Ive failed my baby big time. Why can't I feed her? This is driving me insane!!!

 

We ditched the gaviscon, it done nothing. We switched back to her normal Aptamil as the Aptamil pepti just made her constipated. 'God I hope she's not drastically losing weight' Why was everyone telling me she looked washed out and pale? Please not another admission...

 

After taking all advice given the last thing left to try was a feeding pump..

The machine we were sent when she was tiny.

The machine that left me feeling redundant as it took my place in feeding my baby. Something I was so glad to see the back of when it went back ton the hospital.

Monday came the feeding pump and stand, Tuesday came the tubes you attach to the pump and to Summer, Wednesday came the portable backpack and Thursday came the steri feed bottles.

A disaster from the start it seemed...

On the last day of the week when all the equipment was finally delivered I decided to start pump feeding. Summer was due a feed so perfect timing I thought?

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The purpose of pump feeding is that a certain amount will be fed to your baby over a set time. Obviously the slower the feed the better she would tolerate it and keep it down. Has to be worth a try!

All is set up and ready.. all except the bottle hanger. The nurse had been out to us Monday to reteach us how to pump feed. The plastic bag the bottle is supposed to sit in and hang from the stand from ready to drain down through the tube instead sat a plastic holder for tiny baby bottles. Grrrrr. I rang the nurse who came to us Monday, she recommended to tape the bottle to the stand. Nothing worked, tons of air bubbles filled the tube. I can't start the feed with air bubbles that dangerous.

At this point I'd had enough, Summer burst into tears, hungry waiting to be fed and I couldn't even feed her. What a failure! I marched upstairs made a fresh feed and gravity fed her the way i knew how. Within minutes she vomited everywhere, I've lost all patience. Nobody understands. I rang our dietician, who has been fantastic throughout our journey & burst into tears. She reassured me I will pick it up and to be easier on myself. She regained my confidence.

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I'd finished Summer's gravity feed, took a few hours to cool off and gave the pump a second go. This time I decided to use the portable backpack. It worked!!! The pump I once loathed is now working and helping me to feed my baby. Phew. I felt like i'd gained a degree in feeding - sounds dramatic but theres so so much to remember, we finally got there in the end. After trying so many different techniques to keep her reflux at the minimum the relief was enormous. 

 

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If you're out and happen to see a baby with a feeding tube with their mum/dad/carer, wether they're being fed or not, offer a warm smile. People/babies have feeding tubes for lots of different reasons. Every baby needs feeding, mums feed their babies anywhere they can when their baby's hungry. If you have children and they're asking about the baby and why they have a tube, if you feel like the situation is ok to, go over, speak to the mum, make a fuss of the baby. Take time to explain to your children that some babies feed differently. If you're at a baby group and see a baby with tubes, make an effort to connect with them, chances are its taken the mum a little bit of extra courage to go in the first place. If the mum seems exhausted or stressed, smile and tell her how well she's doing. Being a mum is a busy job. Kindness is everything. Manners and love come free, sprinkle it everywhere you go. 

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Wether you're breast feeding, bottle feeding, weaning with food, tube feeding or pump feeding fed is best. Which ever way you feed, you're doing a great job mamas!

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Thank you for reading A degree in feeding,

 

Jessica x       

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