Here I come a waddling!

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My mom passed away suddenly and without warning four years ago.  We were on holiday that weekend. I’d had to postpone a Friday morning outing with her as I was running late with errands before hubby and I went away with friends to a beloved farm.  As a rule I would always give her a quick call just before we went out of cell reception, we made plans for the coming Monday to go shopping, I told her I loved her and that I’d see her in two days time.  It was our last conversation.  When the dust had settled after her funeral I craved a connection to her, I wanted to see her face, having it in my memory just wasn’t enough, I needed to see her, I wanted to see her beautiful smile while I remembered her infectious laugh.  I couldn’t find any photographs though, certainly nothing from recent years, and very few of her from my childhood where she wasn’t shying away from the camera.  It was then that I realised that my mom had spent my entire childhood hiding and inadvertently, yet somehow intentionally excluded herself from our photographic memories.

 

My mom was overweight, it wasn’t something that I was aware of as a young child. I don’t think kids are naturally aware early on that certain things are normal or ‘abnormal’, until it is pointed out to them.  It was normal for us that my dad was the one who was involved in our activities, walks on the beach, rollerblading, climbing trees, playing in the park, my mom could usually be found indoors, sewing or baking for a client. The pinnacle moment of realisation for me that something in our family dynamic was ‘not normal’ was in Standard 1 (Grade 3 for the newer generations).  It was our schools year end Christmas show and our class was gathered in our classroom, assembled in our stage garments, watching all the parents walk through the school entrance to take their seats in the hall.  Craig, one of the ‘bullies’ of the class stood by the window and pointed his finger at one parent in particular and at the top of this voice yelled ‘that’s the fattest fatty I’ve ever seen’.  His leery finger pointed straight at my mom.  Everyone followed his gaze and, as kids do, many giggles and laughs ensued.  I felt terrible anger at his comment, I was confused as to why my mom had been singled out and I suddenly felt unbelievably ashamed of someone who had never done anything to deserve this treatment. That singular moment would forever change my view of my mom to a certain extent.  From then on I became aware of small moments over time that before had never been on my radar. I hit him that afternoon and I remember our teacher reprimanding me for hitting him, but he was never reprimanded for the horrific comment made towards my mommy, somehow what he’d said was far less of a problem than my hitting him.

 

My mom waged a lifelong war with her weight, one which resulted in much experimentation with fad diets, eating regimes and exercise plans.  She spent her life trying to conquer the demons of her weight, but was never able to conquer them.

 

With memories fading and time passing I yearn for photographs of her and I together, both for my own heart, and to show Charlotte what a beautiful grandmother she had.  The problem with this though is that my mom refused to have her photographs taken, her weight had her hiding away, behind hands, glasses, paper, glasses, whatever she could use to hide her face and avoid a photograph of her being taken.  The result is that I have next to no photographs of my mother.  All that remains are a handful of images where she is shying away from the camera, or of those taken when her and my dad were young in their courtship and marriage.

 

My moms actions weren’t intentional or malicious in any way or form, she loved unconditionally, she gave everything she had and could for us and for those she held near and dear, but I don’t want Charlotte to experience her own mothers body shame and ‘suffer’ for it.  Charlotte may not understand or appreciate this when she is young, but one day when I am gone, I want her to have photographs to go along with her memories, I want to be a part of those stories and memories, the stories that she can share with her own children one day.  And in this line of thought I realised I’ve started following in my moms footsteps, and not the good ones, but those of poor habits that will unwittingly affect how my daughter views me one day.

Charlotte in the outfit I made for the wedding
Charlotte in the outfit I made for the wedding

A few weeks ago an old friend and an even older friend got married in a beautiful ceremony. I did not feature in any of the guest photography, nor the group shot, in my defence Charlotte had been acting up because of the extreme summer heat and we were off in a quiet room trying to soothe her, but, I was thrilled at the idea that there was no photographic evidence of my double chin and fat arms. The same couple host an annual boxing day braai and again, I found myself part of the proceedings and thrilled that I managed to avoid being photographed yet again, instead there are dozens of photographs of everyone smiling and lovingly holding my daughter, I on the other hand don’t exist in the photographic memory banks of the day. There are dozens of photographs of my daughter with her father, but I cringe at the thought of having photographs taken which include me.  Without realising it initially, I was following in my mothers footsteps for all the wrong reasons.

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Charlotte and I caught red handed during an afternoon nap. I cant stop photographs that I dont know are being taken.

Nobody prepared us for the home coming of our little miracle, nobody warned us that we would have feeding issues and spend the first few months of her being home would be spent between paediatricians, paediatric wards for feeding issues and dehydration, dieticians, occupational therapists and physio therapists.  The hours spent on getting our daughter to drink was astronomical and we had little time to sleep, let alone to think of cooking.   As an unintentional result we fell into some seriously poor eating habits and 5 months down the line I find myself with the horribly uncomfortable realisation that my ‘fat pants’ are now too small, that I look more pregnant now than I did when I was actually pregnant. That I am both consciously and unconsciously erasing any photographic evidence of my own life and existence and that I am picking up the traits of my mom that I swore to myself I would never allow to happen to my own life.  As a photographer I find myself ensuring that any ‘selfies’ that I take are strategically taken, to ensure that my full bulk is not seen by the rest of the world, and when that control is not possible, I run for the hills, much like my mom did.

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Acceptance is the first step right?!  For the sake of my daughter, and for the sake of my husband and myself, I need to start getting my ass in gear, literally!  And it’s not going to be easy, there are a lot of habits which have formed that will be very difficult to break.  There will be moments where I fail, where I slip and fall, likely into a vat of ice cream or a tub of Pringles.  The important part is to pick myself up from these moments, accept that we all fall from time to time, but that we need to brush off the dust and crumbs and tackle the next day with fresh spirits and determination.

That cheeky grin just melts my heart
That cheeky grin just melts my heart

I looked my girl square in the eyes this week and made some promises that I need to keep, for her, for her dad and for myself.  She smiled back with the cheekiest of grins when I told her that I loved her more than life itself, but that it was time that mommy claimed back some time for herself, to get healthy and fit enough to look after her and to be there for her for as long as is possible.  So this past week I pulled out my old running shoes, had a long hard look at them and realised they were completely and utterly shot and ready to go to shoe island and retire with all my missing socks.  I tracked down a good quality second hand joggers stroller so that I can take my daughter on my excursions and I popped into the sporting goods store yesterday for a new pair of running (for me shuffling) shoes to get my ass in gear.  A fellow preemie mommy and friend has also been a good source of motivation with her own efforts to get back into shape for herself and her kids.

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My new shuffle buddies!

So, if you see a squishy mommy huffing and puffing profusely while attempting to push a joggers stroller in your burb, it’s probably me, I’m not a natural runner as my husband will tell you.  I look awkward when jogging, picture a hippo trying to run gracefully….  I’m slow, as in really slow.

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Selective cropping to hide those jiggly arms.

A few years back I actually managed to both train for, and complete a Knysna Half Marathon, I worked my butt off for a year to huff and puff my way through that effing race.  They say, when you enter these challenges, that you tend to select someone to ‘compete’ against, this is the person that motivates you to keep going, the one which you are determined to cross the line ahead of.  For me, in that particular event, it was Wonder Woman, I shit you not.  She was tall and slender, she had luscious long blond hair, sparkling blue eyes, she wore a Wonder Woman outfit and she had a little sparkly blue handbag casually draped over one shoulder. The contents of that bag was a box of ciggies and a lighter.  As Wonder Woman sensually swayed her way to the finish line she would habitually light up a smoke as if to mock the rest of us, showing us just how easy this event was.  There was nothing more important in my life than to finish ahead of her.  As she swayed along I jogged my little hobbit jog.  I hauled my ass as fast as I could to keep ahead of her.  The moment I slacked off she would saunter sensually passed me, trailing ciggie smoke in her wake.  I crossed that line about 50 metres ahead of her, and I was a broken but elated woman.  In stark contrast, she swayed over the finish line, not a hair out of place and the television camera crew running over to congratulate the beautiful Wonder Woman.  Two moments at the end stand out for me:  my husband was there to welcome me and congratulate me on my achievement, I fell into his arms and wept with joy, not because I had finished the race, but that I had finished ahead of Wonder Woman.  J had no clue what I was huffing and cyring about, so I pointed towards her, just as she swayed over the finish line, and then the second moment occurred:  as the camera crew approached Wonder Woman, she casually took a long sensual draw of her ciggie as she crossed over the finish line and she leaned forward to put her ciggie out, on the finish line, just at the camera crew approached her, the final act of defiance on her part.  Her blasé attitude towards the event and its stark contrast to my own efforts will remain with me for eternity.  So will the horrifying moment of rubbing the freshly shaven bald head of a close cousin near the finish line, I hugged him and rubbed his head, told him he looked like a dildo, and then, through the haze of exhaustion realised that it in fact was not my cousin, it was a very amused stranger, dude, I’m really sorry for that.

 

So now that you’ve had a good laugh at my expense, allow me to end things off by saying this.  My daughter is her own version of Wonder Woman, she came into this world by breaking all the rules, she has fought her way through every obstacle laid before her so far, she is strong, she is brave and she is defiant, she is Mighty Mouse and she is Wonder Woman and in order to keep her safe, healthy, happy and provide for her the memories of our times together, I need to keep ahead of her as well.  Keeping fit is no guarantee that I’ll around for a very long time, but it will guarantee that all the time we have together is lived and experienced to its maximum, without shame and without the overshadowing fear of having my second chin and squishy arms captured in a series of unflattering photographs.

 

I yearn for the sound of my mothers voice, the strength of her love, the smell of her skin and the feel of her hugs, we all have our short comings and faults, none of us are perfect, and even with her short comings in confidence and her insecurities over her weight, my mom will always be perfect to me.  I just wish I had photographs to share her beauty with Charlotte.

#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….

#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…