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 ...

A quick pre-weekend update: Lucy's had a good week. The hole in her heart, previously 2mm in diameter, appears to have closed and her infection markers are in the normal range. Her haemoglobin is at a hearty level following her last bloody transfusion 'top up' and her lungs are clear of the fluid that was apparent last week. Finally, she put on a whopping 60 grams to take her body weight to 810! We know that this doesn't mean we're out of the woods just yet, but it's certainly better to have periods which include more ups than downs.

 

Happy Valentines Day!

Lucy took her first breaths without the ventilator at 6pm last night, when the medical team trialled her on CPAP. She lasted four hours which was great, but she had to work damn hard for that time to maintain suitable oxygenation. Consequently, she was reintubated and back on the ventilator by 10pm.

The latest plan is to give her a week to fatten up some more before trying CPAP again. In the meantime, she's got to keep breathing through her nasal endotracheal tube (aka, 'the trunk') rather than the preferred oral one because she's between tube sizes. If they use the bigger tube, it will irritate her trachea. So they have to go with the smaller one, which is problematic as it offers an inadequate seal for Lucy when put through the mouth. Hence Little Poppet's little button nose remains hidden from view again in this episode. And that's Robs's wedding ring which would fit around Lucy's wrist rather nicely.

It was nice to bump into Stella's mum on the way out. Stella, Lucy's first roomie when we arrived in the NICU, has just graduated to the slightly-less-intense Special Care Nursery 2, and is reportedly doing fantastically well.  Hearing these little capsules of positive news from people who are traveling a familiar path helps keep the journey firmly in perspective, yet also reminds us that there is indeed light at the end of the proverbial.

Robs and I are pleased to report that Little Poppet's been better over the weekend. Her haemoglobin is back up to a nice, high level and her CRP back down into the normal range. When we went in this afternoon, the Registrar had set up the utlrasound machine to perform her heart scan, however before he could have a look he was called away to deal with a more pressing matter. Hopefully we'll get some good news re: Lucy's heart duct tomorrow. Otherwise, her gases and breathing were sound, and she was looking pretty in pink.

This is as good a time as any to acknowledge all the people who've supported us through the last few weeks. Robs and I are extremely fortunate to be surrounded by such a caring and loving group of friends and family who have been there whenever we've needed anything. We've had people offer to cook us meals, offer to look after Oscar, offer us beds to sleep in close to King Eddy. We've been so overwhelmed by the amount of txts, phone calls, facebook messages and emails that at times we don't quite get around to responding individually to everyone. And, although our journey's been a hard road and it's only just beginning, we're both comforted by the fact that people near and far are holding Lucy in their thoughts and prayers. So to everyone who's done anything for us, from sending us a one line written message of support, to taking care of our first-born for hours at a time, we say, with the deepest sense of appreciation and respect, thank you. 

Little Poppet's been up and down these last few days, undergoing her second blood transfusion yesterday. Due to the lingering infection, her hemoglobin has been low as the few red blood cells she's got work overtime to deliver oxygen around the body. As a result, they become depleted, leading to a drop in oxygen saturation (sats), and since her body can't generate them at the required rate they must be replenished artificially. Hence the need for transfusion. Her CRP (infection marker) is still elevated, albeit only slightly in comparison to a couple of days ago, so she continues to be given antibiotics through her IV line.

On the plus side, we caught her having a look at us this evening when we went in to say goodnight...

Was lucky enough to be able to get to the hospital before work today, and was rewarded with Lucy opening her eyes for the first time. Awesome. Hopefully we'll get a snap or two in the next few days to share here.

Just a couple of photos from the last few days. The first is me holding Lucy whilst the nurse changes the sheets underneath her. The second one shows her 'bat wings' - paddles on each arms designed to limit limb movement while an IV line is in situ.

In other news, it was Oscar's birthday today, the big 0-2! He quite likes playing with his new soccer goal sans-clothes but, as you can see, when a man's gotta pee, he's gotta pee...

So when we say Lucy's been intubated and is on a ventilator, It means she's on SIPPV+VG. The first part stands for Synchonised Intermittent Positive Pressure Ventilation, which means the ventilator delivers a breath each time Lucy attempts to take one herself. The doctors set a minimum respiratory rate, so if she gets tired or lazy, the machine ensures she receives enough ventilation. The VG part stands for Volume Guarantee, Which makes sure that the amount of air in each breath exceeds the minimum level set by the doctors. So she's assured of maintaining rate and depth of her breathing. At the same time, the nurses can alter the amount of oxygen that the ventilator delivers (FiO2), keeping it at air level (21%) when she's going OK, and increasing it (up to 50%) if she becomes distressed.

CPAP, or Continuous Positive Airway Pressure, is what we hope Lucy will graduate to in the next few weeks. At this point she'll be extubated and only require a mask for breathing support. In basic terms, this will help keep the alveoli more open and increase her Funcional Residual Capacity (the amount of air in her lungs). CPAP requires much more effort to breath on Lucy's part, so it's likely she'll need to be weaned of the ventilator for an hour or so at a time initially until she's worn out. Then she'll go back and forth between the two until she can maintain an effective rate without the ventilator.

When will she make the change? When she's ready I suppose. Some parents of 24 week bubs in the unit have told us that their little ones went for up to 2 months before they graduated to CPAP, so we might have that ventilator ticking a way for a while yet.

Now we've got that little spiel out of the way, I can tell you that Lucy's had a good weekend. Her blood cultures came back positive for staph, which was no great surprise, but the antibiotics have got her back to a level where she's now able to resume feeding. She's wriggling around a little more during the day too, and has burst through the birth-weight barrier, tipping the scales at a hefty 720 grams today. Finally she's opened her bowels for the first time, yay! Yes, it's the little things that make you excited when you're in this position...

Just on the way back from the hospital now. Lucy's blood pH wasn't fantastic this morning (higher than normal acidity), which indicates that one of two things is going on: sepsis or low hemoglobin. Her subsequent CRP showed it was likely the former, but rather than wait 24 hours for the more indicative blood culture results to arrive, it was deemed best to treat Lucy for both problems early on. Therefore, this afternoon our little one's started a fresh course of general antibiotics and had her first blood transfusion. 

Luckily she's coped with these new developments very well, remaining well behaved and maintaining good oxygen sats. The only slight downer (so far in this ep, touch wood) is that her feeds will have to take a back seat for the next day or two - a bugger because she just got back to her birth weight this morning. But that's the roller coaster we'll be on for the foreseeable future, highs and lows will be part and parcel.

If I get my head around it, we'll talk about interesting things such as SIPPV, CPAP and FiO2 tomorrow. And here I was thinking those Cadiopulmonary Science units I did in second year uni would never have any real life relevance for me...