#helpfeedcharlotte – part two

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So on a quick catchup we were sitting with an incredibly traumatic scenario which saw our daughter refusing to drink, even if that meant starving herself.  All indications from the doctors was that this was a truelly unique scenario and the only solution offered on the table seemed to be surgical, a peg inserted into her stomach, for direct line feeding.  The threat of the tube was all consuming, I’d done my research and while there were obvious benefits, there were far more negatives, developmental delays, surgical complications, months of physio, additional scarring, high risks of infection.  It terrified me and I started having panic attacks.

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Via my blog and Facebook pages I’d sent out a mass plea for help.  Surgery was not an option, there had to be other solutions.  I discovered a support network that has been simply out of this world.  Parents from all walks of life, from all over the world came forward with similar stories, medical professionals from all over the world sent messages offering support, advice and assistance and amongst those was Emma.  While we researched and sent out our plea we continued to feed Charlotte 100 % via the bolus feed. I spent an evening in hospital learning how to manage and maintain the NG tube, I’ll put a post together on that soon, one hell of a job!!!

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Emma took time out of her busy schedule and saw us the very next day.  She made no promises that she knew she couldn’t keep, but she offered us hope and a chance, something I’d not received from anyone yet.  Many people I had approached and spoken to had outright told us there was no way we could reverse the damage, Charlotte would never again drink from the bottle, we’d have to accept our fate and book her for surgery immediately.

Charlotte was notorious in NICU for pulling her NG tubes out. It was no different at home and daily we had to add little plasters at her nose to block her fingers from creeping in and yanking it out.
Charlotte was notorious in NICU for pulling her NG tubes out. It was no different at home and daily we had to add little plasters at her nose to block her fingers from creeping in and yanking it out.

Em wanted to start Charlotte on an infant tactile programme with immediate effect. It was such a simple technique that was aimed at desensitizing C to physical contact, getting her to trust human contact again, especially on and around her mouth.  The programme itself is incredibly interactive and an amazing bonding tool and within a day we could start to see the results.  C started smiling, giggling and interacting again.

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Charlotte and her Soothie

Alongside the programme we were going to start introducing a Soothie (dummy for us South Africans), we needed her to begin non-nutritive sucking.  This was absolutely critical to her recovery.  At first we slowly introduced it when she was very sleepy and had her guard lowered.  The trick however was not to place it in her mouth without her consent, she had to want it. On day three she accepted it for the first time but did not know how to suck correctly, so it kept falling out of her mouth. We had to gently hold it in place and allow her time to figure out the basics for herself.

Sleepy and loving her Soothie
Sleepy and loving her Soothie

At the same time we consulted with an oral specialist (we were still attempting to get a response from the speech therapist, 3 weeks later, for an emergency consult and intervention……..) who confirmed that she used her tongue incorrectly and showed us a technique to teach her how to use her tongue correctly.  She would bunch her tongue up in the back of her mouth, instead of extending it and using it to wrap around a teat and form a firm latch, this would result in her not swallowing and milk would collect in her mouth, she would become overwhelmed with too much milk and when attempting to swallow would gag, choke and panic.

After a week she had the basic grasp of non-nutritive sucking and we then combined it with her bolus feeds.  The idea being that she would begin to associate sucking with a happy full tummy.  We had a regimental feeding routine for this, she needed to make critical associations between sucking and a a fully tummy if we had any hope of a full recovery.

Mom needs a third hand
Mom needs a third hand

Next was to reintroduce formula during a bolus feed, so we made a small hole into an identical Soothie and started feeding her 1ml of formula at a time for her to suck and slowly learn to trust that formula was good and safe and no longer a threat.  She responded incredibly well and after a few days she was getting upset when I couldn’t supply milk quickly enough.

Syringe feeding drips of milk into her Soothie
Syringe feeding drips of milk into her Soothie

Soon it became time to introduce a bottle teat and we had to find one that had a similar feel and shape to her soothies, the trick though was also to find one that would not drip milk into her mouth unless she sucked and worked for it.  This sounds simple enough but we soon found that even ‘slow release’ and ‘small’ teats when filled with milk would drip quickly and overwhelm her.  As it turns out there are all forms of research available on the flow rates of bottle teats amongst all the brand ranges (http://pediatricfeedingnews.com/know-the-flow-dont-go-with-the-flow-by-britt-pados-phdc-rn-nnp-bc-bpadosemail-unc-edu/).  Babies who have suck and swallow issues, as well as babies with forms of oral aversions, need to be in full control of when, how and the volume of milk entering their mouth.  Through our months of visits to paeds and paediatric wards for her drinking issues I was advised time and again to purchase different bottles and teats to find one that C would take to, name the brand, or size teat and I have it. I spent thousands of rands on ill informed choices and suggestions. Suggestions with regards to bottles were received from far and wide, many medical professionals advised to purchase larger hole teats to ensure that C got in as much as quickly as possible in order to get the desired volumes in.  In hindsight this is one the worst things we were advised, all it did was provide short term solutions which lasted two or three days and her fears would worsen and she’d shut down even further.

Drinking from a teat!!!
Drinking from a teat!!!

There was a lot of trial, error and fear (on my part) during this process. I was terrified that she would reject and regress at this stage, that we would never get her to drink from a bottle again (as several professionals had told me was going to be the case) and we eventually found a winner in the form of the Pigeon Super Small SofTouch Peristaltic PLUS Wide-Neck Nipples/Teats.  We started feeding C with the teat and a 10ml syringe and when she stopped drinking we would ‘top up’ via her bolus line and worked on the assumption that, over time, she would increase the amount that she drank orally. This is how she was fed for a few weeks, her NG tube ever present as a backup to get in what she didn’t drink physically, until one Friday afternoon when she pulled the NG tube out for the third time in a week and we decided to see how it went without our backup.  I’ll admit to being beyond terrified.

To be continued….