Warrior

Sometimes hospital feels like a battlefield..... sometimes with the system, sometimes with people who don't know as much about your child's illness as you, sometimes with sleep deprivation and poor decisions - yours and the doctors, and sometimes simply against the infection that threatens to take your child away from you.

I know this battlefield, I am a honed, skilled and powerful warrior.... forever attuned to this environment, ready, primed for any unexpected danger that may swoop from my blindside...... I charcoal my eyes to focus my vision........

My girl is okay now.... the battle has subsided.... subsided, not ended, never won...... will it ever be won? The weariness and grief come once safe.... unbidden but expected, so many battles, so much grief. My body courses with a cocktail of adrenalin, grief, fear..... and tears.... she is safe for now and I am grateful, wounded, weary and grateful.

Is this what childhood is for her? Constant fear of an infection that one day, not caught early enough, might take her? Is this the childhood for her brother and sister? Parents who can't quite settle, can't quite let go, can't quite take their eyes off her, incase another battle ensues?

I am Warrior, I know this battle, I will fight to the end.....

A Mag III scan

I think this scan is facinating! My darling Tilda was injected with radio active die that gathers in her kidneys, gets delivered to her bladder (or not very effectively in her case by the right kidney) and then is expelled when she wees.

Aside from the troubles getting an IV line on my baby, she was amazingly calm and patient with the process. 

I only see a case like your daughters once every 5 years…...

To look at our little sweetie, you wouldn't know there was anything wrong at all, and for that we are blessed. Developmentally she is hitting all her milestones, cute as a button, and talking up a storm. She is quite small (for our family, we are all tall bruisers), with her height and weight in the 50th percentile for her age. I've found out recently, that whilst it's not well documented in the literature, it seems the children with kidney problems do tend to be smaller than one would predict. But surgeons aren't interested in these details and 50th percentile is smack on average, so no one is really willing to talk to me about it.

 Matilda's most recent surgery was in April 2014 in which the surgeon implanted her right uerter into her bladder for the second time. A cystoscopy in March 2014 (where under general anaesthetic they put a video into the urethra to look inside the bladder and up to the kidney) suggested that this ureter was not able to drain into the bladder properly due to blockage by the scar tissue from her first surgery. It was decided to open her up again, cut away the scar tissue and reimplant the uerter.

A simple 1 hour surgery turned into 3 and by the 2 hour mark, I was anxious and pacing wondering what might have gone wrong. The right ureter is not as well formed, and after the surgery the surgeon said it was painstaking work to cut away the scar tissue and free the urerter from the bladder so it could be reimplanted.

He then followed up with, hopefully we'll be able to keep this kidney. I asked him what would happen if this surgery wasn't successful to which he responded "I like to be positive, and I ONLY SEE A CASE LIKE YOUR DAUGHTERS ONCE EVERY 5 YEARS"

This hit me hard - we have been under the surgeon's care since Matilda was 5 weeks old, and only now is he telling me how severe her case is?!?!? We know that renal reflux occurs in 1 in 100 people, so we thought we were in the "regular group."

Nope.

After Matilda had 1/3rd of her right kidney removed at 6months and major reconstructive surgery of her bladder and urethra at 12 months, we thought she'd be fine, that would be it…finito….

People often ask us…. "So she'll be okay now?" and wanting to manage other peoples' concerns I would usually answer "yes."

I want to tell people this is our last surgery, everything will be fine. I find it hard to hear the worry in others voices and see it in their faces. Matilda's siblings are also worried and struggling to understand in their own 5 and 8 year old ways.

But I need to start saying to people "no, we don't know if this is the last surgery, in fact she may still lose her right kidney." We are so conditioned not to make other people feel bad, that it is hard to say the truth.

I know in the long term and in the big picture, my precious girl will be fine. She may lose the right kidney, but she is so lucky to have a fully functioning and normal left kidney. She is also almost fully toilet trained, something that no one guaranteed as she had her urethra reconstructed. Sometimes bladder reconstruction can lead to bladder trauma and the need for lifelong catheterisation.

Often I look at her, deep into those big blue eyes, so open and absorbing and think "what a gift you are."

Hold your loved ones close

A word about mama guilt

As soon as you hear the words "there's something wrong with your baby" the guilt sets in. Your head naturally goes to "was it that drink I had, the soft cheese I ate, the fall, the exercise, the shellfish….". 

For our little Matlida, we have been told that it was non-hereditary and congenital condition that occurred in utero as she was developing. What I understand is that 1 in 100 people are born with renal duplex of some kind, and that it happens as the embryo is forming.  

When Matlida was diagnosed at 20 weeks gestation, I asked my Obstetrician - was it anything I did? She looked me squarely in the eye and said no. I had trusted this woman with mine and my 2nd baby's  life and so I believed her. 

But the guilt pops it's head up in so many ways….. 

On her first admission at 5 weeks, the doctors in emergency had to rule out meningitis and so gave her a lumber puncture to retrieve spinal fluid, and for this I restrained her. She then proceeded to have over 20 failed attempts to find a vein for IV cannula in her fat little arms, legs and hands: for all of these I restrained her. The pain I feel at saying I held my baby while people hurt her is enormous and I am crying writing this. 

My rational brain  knows it was all for her good, but every instinct in me said don't let them hurt her, and that I failed her by letting them do so. I did become mama lion and would only let anaesthetics or ICU doctors attempt to find a vein, and even then I'd give them two attempts. There were many more admissions due to kidney infections before she hit 6 months of age and surgery started. 

I remember my mother coming to sit with her in hospital so I could get out of the hospital and spend sometime with my husband. When I returned my mother said that her IV line had tissued (this means clotted and formed a blockage) and that they had taken her to try to find another vein. I was beside myself, what was worse than restraining her for these procedures, was letting someone take my completely vulnerable baby away to do the procedure without me - something the doctors and nurses often advised parents to do stating that it was "worse for the parents than the baby." Are you kidding? Letting your baby go through something painful without their number one protector and soother there is awful!

Guilt is not a rational thing. Some people believe that our brains are naturally wired via evolution to be problem solvers and this is the way humans have risen to the top of the food chain. Feeling guilty is a way of the brain finding fault so you don't do it again - we are hard wired to be protective parents and it's not rational. 

More recently, (Matilda is 2.5years and we're in hospital as I write this) I was told by her surgeon that he only sees a case like hers once every 5 years or so……. and up popped mama guilt! Her case is so strange that surely it's my fault in some way……… 

What I've learned about mama guilt is that it is an expression of my love and devotion for my kids. To allow it to be, to really feel it, to cry and let my husband hold me while I do, and to make room for it. In doing so, I try to honour how it feels and not make myself wrong or an "irrational female."  For all mums, not just those with little ones going through tough medical procedures, you're enough, your love is enough, and your guilt is a marker of your love and devotion. 

Blessings to us all.

Fighting for Proper Pain Relief Means You Protect Your Child from Trauma

One of the things I've learnt after many admissions to hospital is that your little one shouldn't be in pain post surgery - its just not good for them. I have also learnt that despite doctors and anaesthetists signing off on decent amounts of pain relief, nurses can often have a strong aversion to giving the full dose. This is not okay.

Just now, in the last 30 mins I put my foot down and demanded they increase the morphine for Matilda and we're still not close to the full dose that she can have if the pain is really bad. I've spent nights in hospital with babies in other rooms screaming all night and thought to myself "why won't they address that child's pain?"

We have teams of pain specialists and nurse clinicians who are pain specialists, and yet when these people leave the ward, sometimes some nurses like to err on the side of less rather than enough. This is not  good enough. It traumatises the child, affects their recovery, in our case their willingness to wee and stresses the mother out. Comfort post surgery is paramount.

I have found that post surgery, the major milestone for Matilda is getting her to wee - this only happens when she has sufficient pain coverage - today she needed morphine, paracetamol and ibuprofen to feel relaxed enough to wee. And this is totally okay with me…. there's no damage in taking these medicines in safe doses and there is psychological damage in getting kids to "tough it out" by not giving them enough particularly if you have more hospital trips and surgery likely. At the Royal Children's Hospital in Melbourne I used to help kids who'd become so traumatised by their procedures feel able to face "yet another one." We have to make each procedure as comfortable as possible or we risk traumatising and retraumatising which leads to greater fear and resistance in the future (This is my perspective as a Clinical Child Psychologist).

Matilda's last major surgery was when she was 12mths old. I was so frustrated at a particular nurse who withheld giving Matilda pain meds that she was signed off to have. I rang the surgeon and luckily his wonderful receptionist put me straight through to him, I told him what was going on and he told the nurses to give the pain meds. I was so upset at the unnecessary pain they put her through that once I got Matilda to to sleep I went to the nurses station and said "I don't understand your conspiracy against giving pain relief, if you had a headache you'd take something!!!" and then unfortunately I cried. Bloody tears…. when you're a woman and you're assertive people listen, but when you're assertive and then you cry "your being irrational and emotional."

I'm lucky, I'm white, middle classed, well educated, very medically literate from spending 15 years working in the hospital system and still these things occur frequently when I'm on watch. I hope this post helps another mum to stand up strong and make sure her child gets the pain relief they need.

A mother's blessings and support to us all.

How this all started………
My husband and I attended our 20 gestation scan for our third child (yep, surprisingly he didn't just drop me at the door which was the running joke in our mother's group about the third pregnancy - done all this before). The obstetrician doing the scan was saying things like "beautiful heart, lovely looking lungs, great kidney" and we were smiling smugly at each other. Then all of a sudden she said "kidney …… hmmmm……. " and we knew there was a problem.

I hate it when doctors change demeanour and then put on the poker face - you know there's something up and I like to get it straight.  She muttered something about renal reflux or renal duplex and then said we'd have to talk it through with our obstetrician. Being told there is something wrong with your baby is horrific - it feels like the floor falls away beneath you. Luckily for me, this was our 3rd child (I was a seasoned war veteran), I had worked at the Children's Hospitals both in Melbourne and Sydney as a psychologist, and had even, coincidentally, worked on a study about renal reflux (when we wee the bladder contracts - renal reflux is when urine goes from the bladder back up to the kidneys when the bladder contracts). I can't imagine how this information hits mothers who haven't the exposure that I've had.

Other than that, oh and a move from Melbourne to Sydney at 35 weeks gestation, it was a really normal straight forward pregnancy. The delivery was tough which had nothing to do with the kidney things, but rather I haemorrhaged and lost a litre of blood at delivery. I was confined to bed post delivery for 3-4 days (who remembers exact things at these moments?), and it was a fog of sleeping, breast feeding and rebuilding blood supply. It took me about 4 weeks to feel that I could get through a day without dizziness and needing a daytime sleep to recuperate.

At 5 weeks of age, Matilda spiked a fever at 3am….. why or why do they do these things at 3am….???

Any fever in a newborn under the age of 6 weeks is an emergency and requires an immediate admission to hospital. So off we went to the Sydney Children's Hospital.

At this stage, no one had examined whether our baby actually had the kidney problems they had picked up in utero. I'd hardly stopped looking like a twilight cast member or the walking dead from my blood loss, let alone left the house……...