Lucy's home!

The past four days couldn't have gone any better. An excited wife rang me at work on Tuesday to let me know that Lucy was being taken off all monitoring and, that barring any mishaps, she'd be coming home on Thursday. And that's exactly what ended up happening!

So Robyn went in on the train at lunchtime to attend to discharge formalities and do a short baby-CPR session. Then when Oscar woke up from his daytime kip it was the boys' turn to make their final trip up the freeway to King Eddie with Lucy as an inpatient. After checking Os into creche, I headed up to Special Care Nursey 1 for the final time (I'm just as confident that we're done at two progeny as I have been watching Black Caviar perform track gallops in Group 1 races this past 18 months).

Firstly we said goodbye to today's nurse, Karen, who's been one of 30 or 40 primary care givers for Lucy since the 24th of January. Karen was nice enough to snap our leaving pic:

Then it was downstairs to the creche to pick up Lucy's big brother. Now, the wee man loves creche like nothing else (they've got good trains there, go figure) but when he saw his little sister he ran over as fast as lightning to say hello through the gate to someone he'd previously only seen in photos and on a CCTV screen:

And then he couldn't wait to show Lucy the yar yar:

And now Os is in bed, I'm writing this on the couch, and the 2 ladies in my life are lounging rather contently next to me. Life rarely gets any better.

I'll pop back on here is a few days time to tie all of this up with some final thoughts and proper acknowledgement of the many people who have helped us through the past 114 days. But for now I'm off to enjoy having our daughter where she (finally) truly belongs. Home.

A little birdy at the hospital told me that something exciting might happen this Thursday or Friday. Hope that birdy's info is on the money...

Righto, so far so good once again this week. We thought we might be running into a little bit of bother earlier in the week when first the 2 bubs opposite and next to Lucy contracted colds and had to go back into their respective humidicribs. We tried to get Lucy moved as soon as we found out the second bub had caught it, but infection control policy states that that can't happen, just in case Lucy had already picked it up. So there were a few days there where we were just crossing our fingers and hoping. (Had she picked up the cold, it would've weakened her significantly and added 2 or 3 weeks on to our discharge calendar.)

Fortunately, not only did she come out of that minor scare unscathed, she's continued to thrive on the full feeds that were introduced last week. Then on Saturday night the decision was made to give Lucy a go off oxygen altogether! So now we can finally see our little bub with no leads/wires/tubes going in/out her face/torso/arms. And besides a few desat episodes overnight (totally normal given the circumstances) she's coped marvellously well.

So now the discharge plan is quite clear - Lucy has to show that she can go 48 hours without desat-ing, and then the sats monitor can come off her foot. 48 hours more with no problems and she's out the door! So absolute best case scenario is this coming Thursday, but more likely in the 3 or 4 days following. Given that we're only just past our original due date (10th of May) we've gone pretty well all things considered.

Daddy-cuddle time!

Goodbye nasogastric tube! Yesterday it was decided that, given Lucy's fondness for feeding, she can have all her meals now on via the conventional tract. So now it's just a matter of getting her off oxygen, which she's been a little too dependent on this for our liking over the past week. Robyn's favourite consultant comes back on tomorrow, and she seems to have a knack for getting results with Lucy, so here's hoping the prongs come out and we're on the way home sometime this coming fortnight.

Well, if we were in any doubt that Lucy was not going to be a fan of feeding, we needn't worry anymore! She's a right little guts, smashing as much breast milk as she can in record time at each three-hourly opportunity. One time last week the nurse asked me if I had spilt any of the bottle, as clearly someone so small couldn't have finished the whole lot in just 5 minutes. Once she's latched on to the bottle (with expressed breast milk in it) or the boob (straight from the source) she gulps it down as if she's trying to create a new personal best. Then she lays back basking in that post-milk-feed-drunkeness until she's sound asleep. Good girl!

She's also now ready for baths. She wriggled around a bit at first but is now quite content laying back and letting Mummy do all the work, as you can see below.

Progression towards discharge seems to be continuing smoothly. The oxygen being delivered through the nasal prongs is being weened at an appropriate rate, and she's up to about one 'sucky' feed for every one tube feed. Once she's strong enough to allow abolition of the tube feeds, she'll be ready to come home and meet everybody.

1. Lucy's new room-with-a-view
2. Just chillin'
3. "I'm sick of these bloody photos, just leave me alone!!"

 

Well, just as Lucy got into Nursery 2, she was turfed out again quick smart. However, rather than being sent back to whence she came, she was deemed strong enough to progress to Nursery 1. This should be her last stop in the hospital system before coming home, and the timeline for this much-anticipated event is dependent on three factors. Firstly, she has to be on full feeds, which means no cheating by having milk down her nasogastric tube when she doesnt feel like taking the breast. To progress towards this requires Robs to be in at the hospital twice a day for feeds, which is particularly exhausting. Secondly, she has to keep putting on weight, which shouldn't be a problem as long as everything's good with #1. Finally, she has to adjust to a lower oxygen level from her nasal prongs. As it stands now, we're hopeful that we'll get her home in 4 or 5 weeks.

This time I mean it, pics to follow...

It's been full steam ahead once again on the Lucy-train. CPAP is now thankfully a thing of the past (touch wood) and, after the best part of 12 weeks in NICU Special Care Nursey 3, Lucy's moved house to Nursey 2! Although she's still monitored very closely by various leads, and the patient to nurse ratio is still low (3:1 as opposed to 2:1 in SCN3), the move has given us another tangible sign of progression.

Lastly, Lucy's up to 2216 grams and getting towards 'normal' new born size. Certainly makes for more cuddly cuddles!

Pics will have to follow tomorrow...

L

A belated Happy Easter to all! 

Lucy's been killing it again. I told you in my last post that there was a chance she would be tried off CPAP to see how she went. Well, she got down to the required PEEP of 5 cm H2O and maintained good sats during the week, so they gave her a go on Easter Saturday - and she lasted the whole hour! Now, just two days later, they've got her on a cycle involving 6 hours of CPAP followed by 3 hours of breathing with just an extra dash of oxygen. So the top picture is what she wears during the CPAP hours, and the bottom one is her with just the nasal prongs:

Now, the more observant of the readership will recognise the other major change during the past week. Compare both of the above pics to the older ones and you'll get it.

Got it? Yeah?

That's right - Lucy's earnt her way out of the humidicrib and into a normal looking cot. Here's a wider shot:

Added to all these little gems of info is that she's knocking on the door of the 2-k-g club, weighing 1940 grams this morning. So all in all it's been another good week!

Another lengthy break in communication = another good trot for Lucy! She's 9 weeks and 5 days old now.

Body weight:          1660 grams

Continuous PEEP:  6cm H20

FiO2:                     30%

Lucy's sats have been good on these numbers, so there's a chance that she may have a go on additional oxygen only nexk week, which would be a huge step forward. She's looking more and more like a 'real' baby now - meat on her bones (nice fat legs!) and a good healthy colour. Robs was even able to have a go at breast feeding today. At first Lucy wasn't really sure what she should be doing but towards the end she had a couple of effective sucks which was nice. Other than that, she gets 30mL of breast milk every 3 hours, a far cry from when she was getting half a mL every 6 hours.

As of tomorrow I'm off on school camp, so Oscar will be Man of the House. At least when I get back it'll be school holidays, so on top of the jobs to be done around the house and the garden, there should be plenty of time for cuddles just like the ones we got during the week!

Well, hello again! 8 days between posts and the reason for the delay, apart from my ability to procrastinate, is that no news equals good news! Lucy has gone from strength to strength this past week. We'll let the numbers tell this story:

Last Monday (12/3):
Body Weight:          1130 grams
Continuous PEEP:   9cm H2O
FiO2:                      60%

Today (20/3):

Body Weight:          1312 grams
Continuous PEEP:   7cm H2O
FiO2:                      30%

Body weight is fairly self explanatory, though it's worth noting that although a 16% increase in 8 days is great going, she's still got a long way to go until she hits the mean first-world birth weight (3200 grams). the Continuous PEEP value is the amount of pressure the CPAP machine is delivering with each assisted breath Lucy makes. Obviously, when less pressure is required from the machine it means Lucy's doing more of the breathing work herself. She's down to 7, and when she gets to 4 or 5 the doctors will begin to trial her with no additional breathing support at all. The final number shows the level of oxygen she's given through the CPAP machine, and again, because lower numbers are better, she's trending in the right direction.When she hits 21% she'll be breathing the same amount of oxygen that's in our atmosphere which is obviously the ultimate goal.

Taking off my nerd/stats hat, on top of all of this she looks great! It's probably hard to tell from the photos, but she actually has some meat on her tiny bones now, and her colour is much healthier too. Today's offering was a rush job that Robyn was able to snap whilst the nurses were doing her scheduled cares for the day. I think you'll agree that it looks like she's relishing the chance to have a good stretch out whilst she's not lying on her tummy! I'll endeavour to update within a week next time, but please remember, if I don't get around to it then all must be well :-)

Yay, goodbye ventilator!!! So since my last post on Wednesday, here's what's gone down:

Lucy was deemed not quite strong enough to try Long Prong CPAP on Thursday, so Robs and I were a bit flat for the rest of the day thinking it'd be another week before they'd try again. However, on Friday they team were keen to give it a go, and Lucy surprised us all by lasting for the whole afternoon! Although buoyed by this news, we still weren't celebrating at that stage as we were convinced that on Saturday she'd tire and be back on the ventilator, but to our amazement - Saturday (and then even Sunday) remained ventilator-less! Then come this morning, the doctors decided to give her a crack at 'proper' CPAP, and as of 8pm she's still going strong with good sats and gases. It won't be totally unexpected if she doesn't last, but having had 4 days without a machine doing all her breathing will be strengthening her lungs significantly and we're daring to dream! We're also happy that Lucy's resident doc was just as stoked as us with her sudden improvement!

For the uninitiated, CPAP stands for Continuous Positive Airway Pressure. Unlike the ventilator, it doesn't breathe for the baby; rather it helps the baby breathe by providing additional pressure to keep the alveoli open each time the baby takes a breath. So now instead of being intubated for breathing, Lucy gets to wear this funky looking helmet thing. And, as you can see in the second photo, mum was pretty keen to pick off the remnants of the tape that held the previous tube in place. Who knows - eventually we might get to see our whole daughter's face at the same time!

Lucy's resting up tonight to get ready for her third crack at CPAP tomorrow. She's had another blood transfusion (her 4th in total) so she'll be topped up with those lovely red blood cells which will increase her oxygenation. The plan this time is slightly different - because she's now on Super Ventilator, they can run CPAP straight off the same machine with a pair of longer nasal prongs. Fingers crossed this will help her to cope with the stresses of extubation and result in her staying off ventilation for longer. 

Accidental alliteration notwithstanding, a common comment we get is 'It's really hard to picture how big/small she actually is'. In an attempt to rectify this, we took this picture of two beanies - the one on the left is a size 00000, designed for small full-term babies. The one on the right is Lucy's. So there you go.

Yay!!! Lucy's now officially a big girl!!! This morning she weighed 1002 grams and although it took her 38 days, she's finally there and we couldn't be prouder. The pics below show how we marked the occasion:

1. Robs got a big Mumma-cuddle yesterday.
2. We presented the staff with Lucy's 'Kilo Cake', a small token of our appreciation for all those in the NICU who've helped our little angel along the way.
3. Oscar picked out Lucy's first toy, which carries his pic on the front so Lucy won't forget who gave it to her.

Bring on kilo #2!

L

Tonight's pics, in a separate post courtesy of iPad's reluctance to let me upload photos to Blogger that aren't on the web already...

All remains well with Little Poppet. Her latest consultant (they rotate every two weeks) is, apparently, THE guru when it comes to neonatal ventilation. So Lucy's been upgraded to the Mac-daddy of all ventilators - the very coolly named Drager Infinity C500. There's only one of these bad boys in the state, so Lucy's become quite popular as all the staff want to stop by and check it out. I suppose they want to know how it works just in case they've got a few hundred thousand bills laying around to buy one for themselves.

And in tonight's installment of Weight Watchers, we've crept up to 974 grams. Four figures appears imminent...

Just coming back from King Eddy and a Mumma-plus-Dadda visit for Lucy. She continues to track OK without being spectacular - Desat episodes are slowly becoming less frequent and her feeds are up to a juicy 6 mL/hour. Lucy also had her second go at breathing without the ventilator yesterday afternoon, performing fantastically well for the first 5 minutes before she tired and required an oxygen increase. Still, she managed 2 hours off the ventilator which is a small yet significant step in the weening process. Without wanting to jinx anything, we're also hopeful that by next weekend she'll crack the 1-kg club. Today she weighed in at 930 grams, so she's a lot closer to 4 figures than her birth weight of 690. Better put the champers on ice just in case!

Oscar, Robs and I have all been a bit under the weather of late, the three of us experiencing your garden variety cold. Unfortunately this means we can't get into the NICU to see Lucy. However, technology can be a wonderful thing! Using a webcam and a viewing room, we were able to go in and see Lucy from afar, which was especially cool as it was the closest Oscar's been to his little sister. (Remember - only Robs, myself and our respective parents can enter the unit.) Fingers crossed we'll be a bit better tomorrow so normal visits can resume.

Daddy got his second cuddle today, a wonderful way to end the week. I'll give the typing a rest today and let the pictures tell this one ...