I’m going to do this post in a few parts. Simple as it might sound, I feel there is so much to it and it deserves a to be discussed in full. And by “discussed” I mean “exorcised”.
On the surface its such a straight forward thing, just a bit of medical kit, just a special needs adaptation, but I can tell you first hand that a parents relationship with a Feeding Tube and their child is a quagmire of emotions.
I think the best thing to do is take this right back to beginning to start with why I ended up with a child who couldn’t eat, how it all came about and what exactly it does for Alice and what it means to us all.
A little know fact that I learnt early in our journey was that there are certain things that almost all newborns can do, even some brain damaged ones. These are things like open their mouth for milk if something touches their top lip. They can actually make their way from their Mums lower stomach up to her chest, completely unassisted to search out milk. They can co ordinate suck/swallow/breathe and as such inherently know how to breast or bottle feed safely. It certainly appears that not much thought goes into that process and it doesn’t, because newborn babies haven’t been taught this stuff, its innate, it’s a reflex and they just do it.
After time these innate reflexes/responses fade away and learnt behaviors take over. So the newborn baby that feeds from its Mum or a bottle is doing it without thinking, but as the weeks pass its learning and remembering what its doing. Pathways are being built in the brain and as the innate ability fades away, learnt behavior takes over. Pretty cool aye?
In Alices case, nothing was being learnt in those first crucial weeks. Her brain was so flooded with glycine and she was almost constantly sleeping (we know know it was more a state of unconsciousness) that she was only able to drink milk because her innate ability was doing it. She was kind of on autopilot. But as this reflex faded away, things unraveled.
As well as the multitude of other weird stuff that just wasn't right about Alice, by week 8 she was now showing the first signs of struggling to feed. By week 9 it was becoming a real effort for her, by week 10 we were finally being taken seriously and by week 11 we were admitted for a feeding tube to be inserted up her nose.
In fact the story goes that Alice wasn’t admitted to hospital for NKH when it all went to shit, we were already on our way to get a Nasal Gastric Tube fitted. Id seen the GP that morning and I was told to get her straight to Wellington General as she was in danger of dying from dehydration unless we got some fluids in her quickly. As I was packing our bags, and feeling oddly elated that finally someone was taking my concerns seriously, I got a call from the hospital to say her other tests came back “a bit shonky” so maybe I should pack for a week, not an over night stay. But that’s a story for another day.
The point is that we ended up with a Nasal Gastric Tube (NG Tube) because of her missed diagnosis. By the time Alice was coming out of her 2 weeks of unconsciousness and we had become familiar with the acronym “NKH”, we’d completely lost our window to self feed. She didn’t know how to even close her lips on a bottle let alone co ordinate suck/swallow/breathe.
How did I feel about suddenly having a baby with a tube up its nose? A child that now had physical evidence of its dire medical state taped to its face? Nothing. I felt nothing really. It was saving her life and finally people were acting so if anything it was a welcome addition. Feeding her was no longer a worry, so an NG was all good with me.
To lighten the mood I'll interject here with two rather funny NG anecdotes. Because in this house we just love a good disability/special needs anecdote and we like to think we never let anything tragic get in the way of a good laugh. So here goes:
The first incident was on leaving the hospital and it being explained to us that if the tube came out, as they do all the damn time, that we would need training to put it back in. Initially we should just bring her back to hospital, but soon we needed to learn to do it ourselves. As such we were sent home with spare packs of thin rubber piping and a large tube of KY Jelly ready for our training in a few weeks. Yes really. They give you KY Jelly to lube the tube, before you feed it up your infants nose and hopefully down into their stomach and not their lungs. Because whilst food in your stomach is good, food in your lungs is a wee bit fatal. Our month from hell was getting more surreal by the minute but we smiled politely, tried not to make any inappropriate comments took the sex lube for our baby and began packing to go home. As we were leaving a friendly nurse happened to mention that when she was in training, the student nurses practiced inserting NGs on each other. But the best lesson she has had was to do it on herself. That way your really got a feel for your anatomy but you also understood the distress you were causing and it was easier to empathise. Clearly this information left an impression on my husband.
One evening the next week, when Greg had had a fair few beers and I too was drinking myself to a place of numb dissociation, my newly traumatised and shell shocked husband (yes we drank a lot and yes we were barely surviving in those days, judge all you like), had the bright idea of self inserting an NG. George was sleeping soundly like he always did and back then Alice had to be sedated to sleep so we had two unconscious kids and no medical/parental duties for three hours. If Greg wanted to learn how to refit her tube and to understand what his baby girl goes through, then now was the perfect time. Armed with Dutch Courage, a tube of KY Jelly and a long thin piece of rubber piping, he briefly put down his beer and began feeding it up his nose.
As he gagged and choked and his eyes watered, the lubed tube began to disappear into his face. I stood with my own face equally as distorted, gripping my G & T for dear life, half thinking “how the fuck did my life come to this moment”? and half thinking “He’s such a catch. What an amazing Father I chose for my children”. At that point, Greg makes eye contact and kind of winks, as if to say “I got this, check me the fuck out” and with that the tube passes out the back of his throat into his mouth, triggers his gag reflex and he threw up on the sofa. That was the last time we tried that.
Our second surreal tube situation came several months later when we had kind of mastered putting Alices tube in by ourselves. We succeeded as often as we failed but we always gave it a few goes before we called a nurse or accepted we need to go to the clinic. On this occasion we had mislaid the KY Jelly. The shops were now shut and despite a house search the FBI would be proud of we couldn’t find it for the life of us. We did however have some other lube in our “personal stash”. A little bottle that was a pretty pink colour, scented with Ylang Ylang and claimed to be “smooth and silky and is gentle enough to be used all over the body as well as intimate areas. It also has a delicate fragrance for an arousing aromatherapy experience”. Eventually I handed this bottle to Greg (it was his turn to fit the tube) and explained its all we had so lets just get this shit done. The conversation went something like this:
Greg: Im not using that on my daughter! How do I know its safe for babies?
Me: Are you serious? Its just scented KY Jelly and apart from anything else who the fuck do I ask if Durex Ylang Ylang lube is safe for babies and not get my kids taken away?
Greg: If its safe for babies and children it will say on the tube. Read the lable.
Me: On what planet do you think any sex lube will say “Safe for use on children”???
Greg: Well unless it states it on the bottle, Im not using it on her. Call the out of hours helpline and ask them.
Me: No fucking way! Are you really suggesting I call a medical helpline and ask if I can use Durex lube on my 6 month old, because my husband wants it clarified?? Think how that sounds.
Greg: Well Im not using it without knowing for sure. Check their website for a disclaimer.
At this point I gave up and called the out of hours nurse. When she arrived myself and Greg saw fit to drag her into our argument. My husband was standing firmly by his views that these things really should have information on them about safe use in children and I was trying to convince him that if it was safe enough to shove up a womans “hoo ha” then it was safe enough to put up a childs nostrils.
Its worth noting that after the last few months we’d had, this type of discussion didn’t even seem that bizarre to us, nor did we really pay much attention to the open mouthed and confused Community Nurse who was doing her best to give a balance input to the argument. We were so unhinged and stressed in those days and were living in a parallel universe to the one we’d known our whole lives, so this was just another day at the office for us. The nurse swiftly got Alices tube in with the aide of some KY Jelly she had in her bag (her Nurses bag, not her handbag, because that would have been even weirder) and she left us arguing about appropriate labeling on sex products.
Im assuming she didn’t report us as no one came to take my kids away but I bet she had a good story for the staff room the next day.
As the months past it was apparent Alice and feeding from a bottle just wernt things I was going to experience as a Mother, but strangely I wasn’t that bothered. I mean yes it was sad and it hurt but I had far bigger fish to fry. Like keeping her alive and trying to get my head round how I cope with her dying before she made it to the predicted life span of two year old. So when you look at it with that kind of perspective, not needing a feeding tube really is very far down your list of things you wish for.
At 10 months Alice had her Gastric Tube (G Tube) fitted. Rather than the temporary version that goes up the nose and into the stomach, this is a more permanent solution and gives a kind of button type access directly to the stomach. Ive referred to it a few times as like a petrol cap on her tummy, but that really is the best way to describe it.
Experience tells me that the physical point that you sign the papers to agree to our child either being cut open or having some pretty extensive key hole surgery (Alice has 5 key hole scars and the tube stoma carved into her belly) and a plastic valve fitted is a huge and intensely emotional decision for most parents. Thankfully for me it wasn’t. In the vast majority of cases, it is the final acceptance that your kid is essentially fucked. They are now officially broken and the temporary NG just isn’t enough because this child wont get better. They need a permanent solution to a permanent problem and that, my friends, is up there with a terminal diagnosis in terms of “try to get your head around that Mumma Bear”. Its also fair to say that in NKH kids, a lot of them have some feeding ability. Maybe not enough to survive but they can drink tiny amounts of milk, suck tiny bits of puree off a spoon and maybe even take some of the disgusting meds they need to live, so agreeing to a tube and lets not forget a surgery that could kill them, is a real head fuck because you are accepting at best, things will get no better and at worst, we are on the decline to the end.
In 9 years of NKH I see the same pattern over and over again. The parents will do anything not to relent to getting a G Tube. These fearless and dedicated parents will stay up all night drip feeding milk and meds into their kids mouths if they have to. They will spend hours of every day trying every trick in the book to get their kids to eat, to drink, to suck a damn pacifier, anything. The other hours of the day are spent crying about it. In the end 90% end up with a tube and not one parent regrets it.
For me though I was thankfully spared that dilemma. Alice 100% point blank didn’t have the foggiest clue how to drink or eat. I think at about 9 months we had a few weeks where she'd suck butter off of toast and ate a few meals of puree but as with all things Facebook it was smoke and mirrors. The toast was sucked and that was it, not one crumb was swallowed and the puree was only ingested if she was tilted backwards and it kind of fell down her throat. Oh and she ate a cracker once, but that was a “One Night Only” type event. So when we came to the top of the surgery list I couldn’t get that damn tube fitted quick enough. Aside from the fears about anaesthesia and the surgery itself, I was actually excited. Her beautiful face had been covered in sticky tape from 11 weeks to almost a year old. If I hugged her I had to move tubes out the way, if I bathed her it was the same, if I went out people looked at her, I could only kiss one side of her at any one time. The sooner this damn nasal tube went the better.
To be continued ……..