Update on the ongoing Zuperfliegen Experience

But first, are you experienced?
Have you ever been experienced?
Well, I have.
- Jimi Hendrix, "Are You Experienced?"

NOTE: This post is a little weird with regards to time. I started composing it on 16 April - 8 days after Zuperfliegen's birth. But I didn't get it completed and posted on that day; so time moved on and things changed and on 25 April I revised what I had written. But I still didn't get it completed and posted and time moved on and things changed again. It's now the morning of Friday, 29 April - three weeks after Zuperfliegen's birth. So I'm going to finish the post I would have completed on 25 April and that's what you're reading here. I'll follow this with a new post that will bring us up to date. So, back to 25 April:

Hey, Happy Easter! I'm not particularly religious any more - and I consider myself more of a Taoist than a Christian - but in my current troubled times, I find "He Is Risen" to be an uplifting, hopeful thought.

(I'm starting this message in the late evening of Monday, 25 April. Technically, Easter has come and gone - even in the USA - but Australia has Easter Monday (!) as a public holiday. Except this year, because ANZAC Day (kind of like Veterans' Day in the USA) has to fall on the 25th, the public holiday of Easter Monday will be observed on Tuesday! So I think it's still OK to say "Happy Easter".)

I'm not exactly known for prompt correspondence - which I discussed in a previous blog entry - but I've gone even more "radio silent" lately. It's really just a matter of spending so much time on Zuperfliegen - traveling to and from the hospital and spending time with him, trying to take care of what needs to be done for the future, and just plain worrying. Almost everything else has been pushed aside to be dealt with "later".

The Status As Of Right Now: Today was Zuperfliegen's 17th day out in the world, but he's never left the hospital. Ann was discharged from the hospital on 14 April and she and I came home, but Zuperfliegen had to remain in the Neonatal Urgent Care Unit (which probably makes things sound worse than they actually are). The doctors have concluded he has "dysrythmic breathing" and sleep apnea. He has moments when he stops breathing while sleeping, which reduces the level of oxygen in his blood to inappropriate levels. When he comes home, he will have to be on oxygen all the time; so we'll get to deal with that on top of the challenges of being new parents to an infant. The oxygen will be required for at least six months, and possibly for a year or more.

As the hospital has done the testing they need to do, he's ready to come home. But that can't happen until the oxygen-at-home situation is set up; and that can't happen until the bureaucratic wheels grind a little; and that can't happen until Australia opens for business again. (Since Good Friday, Easter Sunday, Easter Monday and ANZAC Day are all public holidays, Australia is experiencing a five-day weekend. That's great for most people, but is just a big hold-up for me and Ann this year.) We'll try to finalise arrangements this Wednesday (27 April) and are hopeful that Zuperfliegen will be able to come home on Thursday or Friday. But there's no guarantee that will happen and it may be next week before he makes it out of the hospital (which means that he would come home after I return to work, despite taking all of April off work to help Ann cope with the new situation). And, "next week" means Tuesday, at the earliest, because Monday (2 May) is yet another public holiday (Labour Day)!

Zupe's problem lies in his brain rather than his lungs. The doctors see this condition a few times each year - though it is more common in premature babies. He keeps getting compared to premature babies, despite the fact that he was born a week after his due date! Many babies mature out of it, and that's what we hope will happen during the 6-12 months he's on the oxygen. However, some children have additional brain abnormalities and/or developmental issues; but these typically cannot be determined until the brain cortex develops more over the next three years. So, we hope that everything will work out fine in the end - and that is an entirely possible outcome - but it's also possible that we'll have more unpleasant news over the next three years.

For news of a more positive bend, I can report that he has surpassed his birth weight and is eating like a champ. He wakes every three to four hours and requests - sometimes quite vehemently - to be fed. This is quite different from his earlier days, and all in a good way. In fact, the amount he has developed in the past two-and-a-half weeks is amazing - and very encouraging! He is alert and seems to be responding to his environment.

A Bit More Of The Story Of How We Got Here: We were originally due to be discharged on 13 April. However, Zuperfliegen had been having difficulty with feeding. He wasn't really taking to breastfeeding (which the hospital strongly encouraged and Ann and I decided was best for him). But we figured that was a process of learning, both on his part and Ann's. Because his need for food was increasing every day (as he grew), we put him on a feeding schedule where Ann would try to breastfeed him and then we would give him breast milk (which Ann had expressed earlier) and then top it up with formula, to make sure he was getting his "quota".

Originally, this was intended to happen every three hours (around the clock)! But since the process could easily take 1.5-2 hours - leaving us (mainly Ann!) only an hour or so to rest/sleep before starting again - we quickly moved it to an "every four hours" schedule. (And even that's pretty crazy!) But the biggest issue was that Zuperfliegen was sleepy/sluggish almost all of the time. Typically, you can just wait for your baby to cry to indicate that it's hungry; but, he had never done that. (He's super-relaxed and quiet, which is great...except that it creates a potentially huge problem with regards to making sure he gets enough food!) So the first part of every session would be rousing Zupe from his slumber, which would often be a difficult and prolonged affair - making it even harder to keep to his necessary feeding schedule.

As you can probably imagine, this was really stressing out me and Ann. We began to think more strongly that something was wrong; mainly because we just couldn't see this feeding pattern as tenable. Much consternation was expressed to the midwives that were attending to us. Eventually, a monitor was attached that measured his pulse and percentage of necessary oxygen in the blood. The latter was frequently dropping to the 80s when you want it to be 100 percent (or at least 95 or higher). More worry, as fears of brain damage and other problems entered our minds. Our paediatrician (I just can't get used to the Australian/British spelling of that word...) felt the situation was OK and just that some babies tend to be a bit sleepy/sluggish and slow on oxygen uptake for several days, but get up to speed as they continue to develop. It was very hard for us to accept this idea, though, as we were due to be discharged (and on our own) the following morning.

Our anguish convinced the midwives and/or paediatrician to call in a pulmonary/respiratory specialist for a consultation. He shared our concerns about the blood-oxygen levels (SpO2 levels, where the "2" should be subscripted, as O2 represents oxygen) and suggested Zuperfliegen be transferred to the Neonatal Urgent Care Unit for overnight observation and extended recording of vital signs, which he was. Though Ann and I were certainly worried about the possible implications of Zupe's condition, we were greatly relieved that our worries were being acknowledged and our child would be receiving much greater attention to his condition. This also meant that Ann and I were given an evening "off" after four days of sleep deprivation and stress.

Zuperfliegen's Sp02 levels overnight (Wednesday-Thursday) tended to trend to the low 90s, and thus lower than we would like. It was decided to do further testing to see if a reason could be found. Over Thursday and Friday, ultrasounds were taken of his heart and his head/brain, an x-ray was taken of his lungs, and various blood tests were conducted. Everything came up normal! In addition, he looked fine and acted fine (albeit sleeping a lot; though babies do that).

The next big (and possibly final) step was to put him in an overnight sleep study. Those are generally scheduled well in advance, so they had to give us "emergency" priority to get us in two days later. Ann stayed overnight with Zuperfliegen after he was hooked up with a bunch of sensors - EEG and ECG and other measurements. That data produced the diagnosis of "dysrythmic breathing" and sleep apnea and confirmed that he would have to be sent home on oxygen. Which meant that we needed to apply through Centrelink (kind of like the Welfare Office in the USA, but more common and acceptable in this more socialist environment) to get the payment in place for the oxygen service so that we could then get it delivered so that we could take Zuperfliegen home. But, as that diagnosis/decision came about just before this long Good Friday to Easter Monday/Tuesday break, there is nothing we can do for five days but wait to fill out and complete the forms on Wednesday when the world starts up again. And, of course, we're spending the days visiting and caring for Zuperfliegen in the hospital.

How I Feel About All This: It's a real rollercoaster of ambivalence! When I first found out about the problem, my mood was very dark. One of my greatest fears regarding having a child is the possibility of serious mental damage that would mean he would need to be cared for all his life. The possibility of that happening with Zuperfliegen touches upon areas of serious fear/depression/despair in my mind.

As time passes, however, I work toward a more realistic/workable (I hope) perspective. I realise that there is always the possibility of A Bad Thing (or Things) happening, but hope and joy and love seem to persist and, generally, things turn out "OK". Or, as I have said/believed for many years: "Life sucks, but is mostly worth living." And it's this overall-weighted-to-the-positive perspective that allowed me to decide to have a child in the first place.

Ann and I are, of course, disappointed that Zuperfliegen has this additional challenge (which means that we have an additional challenge, too). But we are significantly buoyed by his continued development and otherwise good health. So far, it seems that, except for the oxygen/breathing/sleep apnea thing, he's a pretty "normal" boy. And, of course, things could always be much, much worse.

We're also happy that his condition was caught and diagnosed and is being treated. It frightens us how close we came to just being sent home and having things develop without this intervention! The additional ten-plus days of having to travel to and from the hospital has been a drag, but far better than the alternative.

A few other things we're thankful for: The staff of the Mater Mathers' Hospital has been incredibly kind, helpful and competent. It's hard to underestimate how important that is in areas of health! We're also thrilled that we live in a country with an excellent Medicare system and private insurance companies that seem to be very reasonable/supportive (and we don't feel that we have to fight for our claims to be paid; in fact, it all seems to be happening automatically, with the hospital dealing directly with our insurance company). And, it's wonderful that Australia provides 18 weeks of paid parental leave (admittedly, it's minimum wage; but every little bit helps now that we are down to one income) and a year of unpaid parental leave (so that Ann can provide the care Zuperfliegen needs and then eventually return to her job). Socialism is a Good Thing! I'm also thankful that I was able to take all of April off as a "holiday" (ahem) from work and was thus able to focus on these events. (Thanks, Tom and New Horizons!)

We continue to look forward to Zuperfliegen actually coming home....