It’s been two months of seeing my baby’s face every single day. A whole two months. I touch her cheeks constantly and tell her how proud...

For most of the past 18 months, I didn't let myself dream of a day where we got to remove Frankie's feeding tube. I couldn't bear to...

You get your kid out of bed in the morning. Maybe they slept well. Maybe they didn't. But I can pretty much guarantee they didn't get...

We stayed in hospital over the weekend to trial a new feeding regime. Frankie had been on continuous naso-gastric feeds for a few weeks,...

As expected...the organisation of the gastric-emptying study was not organised in the slightest. In fact, it was chaos. Frankie was given...

Is it possible that a day your child has a general anaesthetic and an MRI to check for brain lesions, is actually, kind of a good day? I...

On Christmas Day I caught up with a friend who told me he was off on a camping trip to a place we'd stumbled across years ago. There and...

A while ago we had an appointment with Frankie's occupational therapist and one thing in particular that she said stuck with me. "How can...

Back at emergency after 9 hours at home, this time with a fever and a whole lot of screaming, we were given the full treatment. Urine...

When we were discharged from QCH we enjoyed three days of only one or two vomits a day and it sure was fun while it lasted. After that,...

I can't tell you how long it's been since we had a happy baby. Not a baby that's happy momentarily only to vomit 3 minutes later, but a...

It was a day of waiting. The gastro team were meeting this morning to discuss Frankie. We knew they wouldn't arrive until after midday so...

Last night we dragged the cot mattress onto the floor and took turns, pacing the dark corridors, catching half an hour sleep on the...

It was a day of counting down the hours. Frankie would be put under general anaesthetic at 4pm but, until then, we had a relatively...

The day started well enough with Frankie having a little sleep in. She woke up calmly enough, with incredible bed hair, but was on the...

We had an outpatient appointment scheduled at the children's hospital in Brisbane so decided to make a trip of it. An Air BnB, takeaway...

Two days. The last tube lasted two days. Two! This time we called our nurse navigator who organised that, rather than slumming it at...

Like old hats we presented to emergency yet again with a baby who had vomited her tube out, yet again. Everybody seemed to know us. The...

"What's that?" My imagination heard Frankie ask with innocence. "4 tubes coming out my mouth in 1 day nearly pushed you over the edge?...

We had thought that placing 4 new feeding tubes in 5 days had been the worst it could ever be. Frankie however saw us hovering on the...

These trans-pyloric feeding tubes are designed to stay in for 3 months. Three months! Shitty Day Number 1 After probably 3 weeks of...

Well it sure was fun while it lasted. The no vomiting I mean. We had a good run. Two or three weeks where the vomiting was almost...

It's scary how used to pinning Frankie down while she screams I am. The crying can echo through the house and tears can pool around her...

Ding! Round 2. Back at the paediatric ward for the second day in a row, we met up with the helpful doctor form yesterday plus the nurse...

We didn't want a trans-pyloric tube. It would mean Frankie being attached to a feeding pump for 20 hours each day. The tube would go up...

Day 2: Blood Test Heel pricks are no biggie. Well, they are. They involve a little cut to the heel before a very thin tube is filled with...

Today I got to see Frankie's whole face. Without the tape. Without the feeding tube. Her whole gorgeous, perfect little face. I can count...

We were sent home on NEDS (Neonatal Early Discharge Service) on November 12th. Frankie was 38 weeks old and still had a feeding tube....

A few nights ago, Chris and I sat down, in the same room, at the same time while Chris ate dinner. And even though we weren't eating at...

It was 82 days after Frankie was born that Chris and I looked at each other and said, "Today was a good day." 82 days. We had been home...

While it's absolutely horrible having a baby in the Special Care Nursery, I've come to acknowledge that, if you look hard enough, there...