Balancing survival with the quality of life

Developmental delay, we were told right at the beginning of this journey, is to be expected. I pin it mostly to trauma of open heart (and other) surgeries, multiple anaesthesia, anaesthetics, morphine, rivers of other painkillers and oceans of different drugs. But there is for sure also a tangible, physical, biological correlation between thriving and being cut open; or being resuscitated; or connected to ECMO*; or just being bedridden for seven months.

So, we celebrated every milestone.

She turned from her back to the belly. At the age of 8 months. Way to go!
She pushed herself on all four. For a second. You go girl!
She is sitting. She is 12 months old and she is s-i-t-t-i-n-g ! Be still my heart!
She made the first step! She is 18 months old! That's my girl!
She stacked a cube on top of the other! She will be a genius!
She needs more practice holding a pen. Oh. Ok. But...
She celebrated her birthday... first... second... third... fourth...

Then, a day to potty train came. As soon as we ticked all the boxes of being ready to start, as outlined by Doctor Google, I bought a nice, purple, ergonomic potty, promised to be super comfortable for my baby's booty. And, surprisingly - or not, since I read almost everything there is on potty training - it went quickly. A week or so and we were off diapers. But, there was a hole in our success.

It has been almost three years now, but she rarely manages to be at the toilet on time.

Now that I wrote "three years" it actually hit me... I cannot believe I have been carrying three or more sets of changing clothes everywhere and always. I have been lifting her to relieve herself behind bushes, by trees, by cars and in the middle of wherever we find ourselves when the need hits. I struggled with embarrassment, but then I figured, if dogs can do it, and if people often do not even clean after their dogs, why would I (!) feel ashamed?! I am changing her in parks, playgrounds, cars, the middle of the street, in summer and winter. We do not make a big deal out of it! As far as she is aware, it is ok. But in reality, it is exhausting.

So, we visited a nephrologist. They sat her on a computerized toilet that measured the pressure, volume and flow. All three were optimal. The ultrasound afterwards also showed no problems. Three hours and many questions later, the conclusion was she might be drinking too much.

I was never forcing her to drink. But I knew she needed to drink plenty. That is what all the literature I read on children with a congenital heart defect points out. Although, I was always wondering - what is "plenty"?

It is a challenge to balance what is best for the heart with the way that affects the rest of the body. Priorities are constantly being reshuffled. And while her wet underwear is the least, she is  growing into a young girl, starting to be aware of her differences. She is developing feelings of shame and insecurity. It is an obvious choice to put her heart first. It is a matter of survival. But to me, the quality of her life is just as important.

*ExtraCorporeal Membrane Oxygenation (ECMO) is an advanced form of life support, targeted at the heart and lungs.