#helpfeedcharlotte – part one

 

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Around the beginning of October I posted a blog about oral aversion ( http://mamamania.co.za/2016/10/04/trust-issues ).  Up until that point I thought that we had been through hell, but it was just the beginning.  It was two weeks later that we got to experience the full brutal verocity of this problem, when our daughter shutdown completely from drinking. She had reached the end of her tether and patience and had shut down totally after another week of being poked and prodded in hospital had her deciding enough was just simply enough.

In the week leading up her Golden Globe winning meltdown we had once again been in hospital for near dehydration on her part and now failure to grow.  In her oral defensiveness she had learnt how to hurl, she’d intentionally throw up every ounce of milk we had fought to get in, she had stopped gaining weight and this ‘sudden’ issue finally got the attention that I had been begging for, for so many many months.  Tests were scheduled, NG tubes were inserted, she was poked, she was prodded, she had a thousand different bottles being shoved in her face by a thousand different people who all insisted they knew how to feed her, all while we bided our time waiting for the results.

Mighty Mouse and yet another NG Tube for rehydration.
Mighty Mouse and yet another NG Tube for rehydration.

She had a barium swallow performed which confirmed my suspicion all along that there were issues with her ability to suck and swallow correctly, it also confirmed that she had reflux, which we already knew. The speech therapist was contacted, yet again, in an attempt to get an emergency appointment and we started prepping C for the next test, the dreaded PH study.

The PH study is a 24 hour test in which yet another tube is shoved down the throat via the nose, it runs down the oesophagus and into the stomach and is attached to a little unit with a display which tells you the acidity levels and a few other scientific bits and factos. I had to make note of every niggle of C’s over a period of 24 hours. This would tell us how frequent and how strong her reflux was.  The results indicated she had severe reflux, the acidity levels were low however so not deemed to be the main source/cause of her aversions.

Proud of the fact that she pulled out the PH pipe before the test was over.
Proud of the fact that she pulled out the PH pipe before the test was over.

The long and short however was this,  all the tests being performed were highly invasive, strangers touching her face, forcing things down her throat, putting unwanted objects in her mouth and throat, and she systematically continued to withdraw more and more during a period that was meant to be helping the situation, not further enforcing her fears. By the time we were released due to no ‘medical factors’ contributing to her aversions, she had stopped drinking altogether, but we were still discharged, perhaps in the hopes that by some miracle she would drink in the comfort of her own home, her issues were deemed psychological and no treatment in hospital would recitfy them.  I recall breaking down when the doctor told me that I had been correct all along when I had said there was a problem with her drinking, that I wasn’t losing my mind, that my intuition had been right all along. I was so elated by the idea that I wasn’t insane or one of those mothers who intentionally hurts her child that it hadn’t quite dawned on me right then that I was taking a baby home that wasn’t drinking. I drove home with a smile on my face, thrilled that I wasn’t loopy, oblivious to the nightmare that lay ahead.

C took one look at that first bottle on offer when we got home and flipped out, Britney Spears style. I took her to the room and tried to keep calm, but the second time round was worse than the first and she promptly passed out mid scream, I remember, in that moment, wishing that I’d never had her, that I’d never fallen pregnant, that I couldn’t deal with this, that this was not what I had signed up for, the guilt of those fleeting thoughts will never escape the memory banks. I recall someone phoning me and when asked what I was doing I responded with “I’m watching my baby die”.  There is no worse feeling than that of helplessness, the inability to make things better, or fix something for your children.  Anyone who has ever said not to worry, a baby will eat when they are hungry has never dealt with oral aversion.  12 hours after we had come home my daughter had drunk 10ml of milk and we were both  hyperventilating, quivering, crying, screaming, pathetic excuses for human beings.  Hubby loaded us into the car and we rushed back to her first home, NICU for help.

First night home with the NG tube after C stopped drinking.
First night home with the NG tube after C stopped drinking.

Several failed attempts later at getting C to drink from anything and the NG tubes were hauled out. I had to leave, there was no way I could again watch my child being held against her will while someone placed a tube down her throat, even if it was life saving and done by people who cared for her deeply.  We slowly bolus fed her fluids to prevent dehydration and were sent home with the instruction that the tube be replaced no longer than 5 days later.

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Bolus feeding Charlotte

After several incredibly traumatic attempts at home to bottle feed her failed, I realised that we had reached the end.  We had gotten to the point that I had feared most and had been trying to avoid for so many weeks. Full blown oral aversion.  I decided that from that moment on that things would be done our way and no longer the way that the doctors were proceding with things. We discussed with her paed that we would receive training on the NG tube and we had 6 weeks in which to get her drinking and gaining weight, thereafter they were insisting that we would need to place a G-tube directly into her stomach. A G-Tube was not going to be an option and the mere thought of it set me into a total panic attack.

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.

Out of options and desperate for answers and solutions I decided to shamelessly plug my child online (https://www.facebook.com/mamamaniaPE/posts/1755397898059340).  Somewhere in the world there must be someone who had gone through this before and had successfully conquered it. The response from a local, national and international level was just mind-blowing and I soon realised that there was an entire network of us out there, suffering in silence, assuming we were alone, assuming we were some random medical anomoly, and on a local level  we all shared the same paediatricians, so why were we all made to feel as though this was something rare and unknown?!

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So many people have reached out to us from my original social media post asking for help and our #helpfeedcharlotte campaign, I’m still trying to reply to so many people and thank them for their offers of assistance, advice, referals, support and prayers.  One such person was Emma. Emma is an Occupational Therapist in PE, we shared a mutual friend whom she was working with and she believed she could offer us some assistance. We met with her the following morning and while she made no promises that she knew she couldn’t guarantee, she did offer us hope and a promise to do every bit she could to get C drinking again.

Charlotte and her Emma!
Charlotte and her Emma!

To be continued…

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