Piper's Backstory

Feb 14th we found out our 6th bundle of joy was en route. I attended our 12 week scan alone due to no childcare, we had some testing done due to our age.

A few days pass and I'm called to the hospital as the testing came back high risk for Down Syndrome, follwed by weeks of tests, appointments scans etc. We had a CVS done but it didn't give us any answers so we then refused to have anymore invasive tests. 

By 24 weeks my body wasn't coping well I had GD, high blood pressure and severe ICP we were threatened with delivery, thankfully things settled a bit but at 29+3 weeks my waters broke so after having steriods I was induced, Piper arrived at 29+4 at 7.55pm with a cry weighing 3lb 2oz I got a quick glance as she was taken to NICU after being placed on ventilation. I was able to see her for the 1st time at 1am where she was settled and doing well. 

After testing it was confirmed she didn't have DS and appeared to be healthy. By day 4 she was off all breathing aids and tolerating milk through an NG tube she was also moved from the high dependency nursery to the level 2 nursery where she continued to thrive.

Day 9 we announced her arrival to the world as she continued to totally amaze us with how well she was doing. Day 10 everything changed, I was called into see the Dr and was told they had done a blood test and it had picked up an issue with her kidneys, they were 99% sure she had CNS (Congenital Nephrotic Syndrome) and was waiting on a transfer to Great Ormond Street, but to expect the worst and hope for the best (I hate that saying with a passion now).

We arrived at GOSH's NICU over the weekend and was told that she was extremely sick and as she was so small she'd need dialysis, then once at 5kg a kidney removel followed by a transplant at 10kg, we were looking at an 18month stay. 

After a couple of days she started to swell so was placed back on ventilation they couldn't do the dialysis as she was too small for it, by this time she'd also had a couple of bleeds on the brain.

At the tender age of 19 days we decided to turn her life support off as she also had NEC by this time and we wanted her to pass in our arms away from the ward. We had her christened and did hand, foot prints etc before being taken for our final cuddle as she slipped away in our arms with the dignity she deserved. 

Our shining star, our butterfly, taught us the true meaning of unconditional love.