Recalling the highlights of a journey six years ago

Kate rang at 6.20am to say they couldn’t fit me on the plane either. I didn’t mind and she told me they’d organise a ticket for me on a commercial flight. I went over to NICU for the last time and saw Elsie strapped I to the travel humidicrib. She was asleep with the same little pink outfit she had on yesterday and her CPAP cap. They’d put bigger prongs in her nose for the travel cot CPAP. It was a huge sled on an ambulance stand with lots of dials and cylinders and a screen that monitored her respiratory rate, sats and heart rate.

It wasn’t until Jennie said how crap it was that I couldn’t go that I lost it. It wasn’t that I couldn’t go (I knew that I couldn’t have done anything for her on the flight anyway and that Anthony would be at the hospital in Brisbane when she got there), I guess it was more the uprooting out of our comfort zone. I didn’t want to move her. We felt safe in the Townsville NICU with staff that knew Elsie and us, and our spot at RMH. We were in good hands and Elsie was on the way home, she just needed to grow and they were taking care of her and us while she did.

My ‘real-time coverage’ continues now with an extract from an email to our families that week:

Three of the nurses each held out a box of tissues and the other three told me they were going to cry too now. I walked and bawled behind as they wheeled Elsie out to the ambulance and I watched them push her into the back and shut the doors. Then I went back up to NICU to find out the details of my flight. Luckily they could get me on one at 11.30am and I thanked the six nurses and told them that at least with the three of us on three different flights, if any of the planes went down, we’d still be a family.  I was pleased that Anthony would be at the hospital to greet Elsie when she arrived on her flight at 11am.

I knew that there was nothing I could do on Elsie’s flight; it was more the uprooting. We had felt very comfortable and happy and safe in Townsville, and as if Elsie was going ahead and bound for home at some stage. We didn’t want to move to Brisbane and our first impressions of the place, or Anthony’s at least, were confirmed when Anthony came out of the lift at the hospital, pushing a handy wheelchair he’d found at the taxi rank, loaded up with our two suitcases, two backpacks, laptop, and Elsie’s large bag. He noticed that when the lift stopped, it wasn’t quite level with the floor and decided he needed a small run-up to get the loaded chair up over the rise. In hindsight, he says if he’d thought about it longer, he’d have gone backwards. But instead, the small front wheels of the wheelchair slammed into the step and all of our luggage toppled forward out of the chair and fanned out on to the floor. AND THEN everyone stepped around him and all the luggage so that they could get into the lift!

After we’d all re-convened in NICU and Elsie was settled (and oblivious), Anthony and I pushed our wheelchair down the extremely steep hill (yes, at times, backwards) and we checked into the one night that the social workers had generously organised for us at Ronald McDonald House. I wasn’t able to visit her for our first couple of days because I had a cold…

Luckily we have been able to stay on here at ‘Ron’s house’ indefinitely and we have worked out the fundamental differences between the NICUs and are trying not to be the horror parents that follow every procedure or comment with “Well, in Townsville they used to….”

Elsie had her eyes checked on Monday and they were not quite ready for surgery. Seems there’s a very fine line of when surgery can be done. They laser the blood vessels that have chosen to grow in the wrong direction (as a result of being premature, combined with the high oxygen concentrations used in the ventilator) and that end up pulling the retina off the eye. Stage 1 and 2 levels of damage are self-repairing, Stage 3 requires laser surgery, while Stages 4 and 5 mean they’ve missed the boat and the retina is already detached and blindness is the result.

On Monday her right eye was Stage 1 and her left still Stage 2. They checked them again on Thursday, and miraculously (like the duct!) they were somewhat better! She may or may not need laser treatment. They’ll check them again on Monday – if she does need surgery they may do it then, and if not, they’ll continue to check them every second day until they’re sure they’re not getting worse, then go to weekly checks. While the eye checks are horrendous, they have to be better than blindness, and checks every other day have to be better than laser surgery, which can set babies back quite substantially.

Depending on what happens with her eyes, we’re hoping that the Newborn Emergency Transport Scheme (NETS) in Victoria will come and rescue us and bring us back to Melbourne. It’s a bit political with costs and which hospital pays, and all that needs to be sorted out by them, but that’s our ultimate goal.

I don’t know about anyone else, but I’m still laughing about poor Anthony and the wheelchair.

She’s going remarkably well in her new home. As you’ll see in the photos, she’s now in an open cot with a heater above her. As of yesterday, she is finally cannula-free and only has the long-line in one arm, which is still held straight by the make-shift splint. She has crept up from 1ml of pre-digested formula every 12 hours, which she started on last Saturday, to 6ml of breastmilk every 2 hours, and the volume continues to increase twice a day until she’s on full feeds for her weight. Speaking of weight, when she got here on Sunday after 10 days off feeds, she was 1305g. The good news is she tolerated the pre-digested formula, the breastmilk was not the source of infection (that makes expressing a lot more enjoyable now that she can actually have it), and as she’s tolerating the milk, it seems that there can’t be any damage caused by NEC.

Yesterday I said to Anthony, “You know, if she doesn’t have to have laser surgery, she actually hasn’t had that bad a run.” With two Group B strep infections, one lung infection, two lumbar punctures, six eye tests, a blood clot in her aorta, two bleeds on her brain, an open duct, chronic lung disease and NEC, he wasn’t sure he agreed.

You know, I don’t care about anything much on that notepad list. I’m really happy to have our girls around full-time. To talk about the pictures and letters in a newspaper or on a website with two curious girls. To share my meals and chocolate biscuits. And as for exercise, well leg lifts in pilates should be even better for you when you’ve got a girl dangling off each leg.