Back by popular demand - The Ford Taurus!

I like the lighting in this one. It's daylight. Aside from the flight from Edmonton to Vancouver, throughout which he was sedated, Ford has not seen daylight. Our new room has a big, bright window, and he was definitely stunned by the brilliance of the light. He had a hard time tolerating it, but couldn't look away.


Cross-eyed!



Ford as we prefer to present him.





Ford as he prefers to present himself.




New digs with internet. Christa is skyping with Ford. We got him hooked up to a speech synthesizer so he can communicate to us Stephen Hawking style. You ought to hear his postulations for the existence of life throughout the universe. He's quite bright and very persuasive.


But sometimes he gets tired and needs to sleep.



Sesame Mucho hat, hand knitted by Lynne! Thanks Lynne! We love it, but Ford seems a little skeptical.



Here he is modeling it with his trademarked variation on the Zoolander stare. Definitely a ladies man.

Tour d'hôpital

I read the other day that the French were just declared the world's worst tourists (http://www.euronews.net/2009/07/09/french-named-as-world-s-worst-tourists/). I think I'm linking to this otherwise banal article because I occasionally feel like we have had something like the role of the tourist thrust onto us while here at the hospital. And I feel like we assume this role and wholeheartedly become tourists. Badly behaved tourists. There are, of course, no end to the similarities - most people speak to us in a foreign language and we stumble through our feeble attempts to respond to them in kind. But when we fail to make sense of each other we demand they speak to us in a language we can understand. The food often looks a little strange and suspicious. We always feel poorly dressed by way of comparison (folks around here really know how to work the scrubs). We live out of our suitcases, are perpetually lost and, in keeping with the spirit of Frenchfolk everywhere, we have yet to tip anyone.

Most exciting news: Ford is two months old! We took his NJ tube out to mark the milestone in style, to congratulate him on making it this far.

Ford was shuffled out of the NICU a few days ago as an influx of critical babies took precedence. He was moved down the hall to the PICU and we temporarily lost our private digs. But the PICU was experiencing a bit of a lull, with only a handful of babies sprinkled throughout their spacious 28 bed unit. It was certainly a calmer environment than the PICU in Edmonton, which seemed to be constantly in crisis. It was a relaxing few days with Ford staying supremely stable and relatively quiet.

There was one brief moment when his saturations dropped low and two nurses started anxiously pacing around his bed. An RT came running with the high-flow rig to hook him back up to oxygen and I had to plead a bit with them to just wait. This great doctor (Dr. Jenny, we call her) came by and sided with me to wait on him. I guess the tried and true strategy of an ICU is to intervene at the first sign of trouble rather than stand around waiting for patients to crash - it was clear that they weren't entirely comfortable doing nothing. But Dr. Jenny was pretty reassuring and stayed with us until she decided he was fine, despite what the monitor was saying, and left. One of the things that is both frightening and exciting for us is getting the chance to be with Ford without having to always know what his biometric readings are, without the alarms chiming as he regularly drifts in and out of their parameters. This was one of those moments where I was looking at him, so deeply and comfortably asleep, and he looked absolutely perfect, but the equipment was ringing off: danger, danger! Apparently when we are all in a deep sleep our oxygen saturation levels drop a few percentage points, so they were prepared to accept the episode as such, but were still hanging back waiting to pounce on him. After a while of him sitting pretty low I decided (very selfishly) to try and wake him up, which I did as gently as possible, and he almost instantly resaturated. I felt pretty vindicated and relieved, but also a little strange, a little cavalier, like what if there really had been something wrong with him and I had decided to just let it be and he'd gotten worse instead of better. Those are the sorts of situations we might get into at home with him that are the most frightening to think about.

Ford was moved upstairs to the cardiology ward this morning and we are once again in a private room. Only this time it's a deluxe private room with our own bathroom, sink, bed (for us as well as him), window, TV, Internet, etc. There is a kitchen in the hall and several other homely amenities. It's actually really amazing. We felt pretty great as we settled into our new life 'upstairs.' Ford is now officially out of intensive care and is being monitored a lot less. The nurses sit outside, down the hall, and only come by to give him his meds or if there is an alarm ringing off. We are now expected to do much more of the minute to minute care for him, which we have mostly already been doing (while we're there), with the biggest change being that they expect one of us to stay with him all night.

By way of example, shortly after he was moved in, a porter showed up and said: I'm here to take him down to x-ray.

Ok, I said, and backed away from the bed.

Who's going to carry him? Mom or Dad?

Carry him? Like, out of the bed? Downstairs?

Yes. We will unhook him.

Umm.. Ok. I'll carry him... ?

I know it sounds ridiculous, but I got to carry him in my arms around the hospital with nothing but his feed pump attached. We took a long, meandering route, and he seemed to drink it all in, staring wild-eyed at all the changing scenery. And I sat alone with him in the radiology waiting room and was approached by several people cooing: Ooo, look at the baaaabyyyyy! Ooo, what a cuuuuute baby! I guess it felt so much like I had imagined it would feel like to have a two month old in tow, out in the world, and it was oddly kind of amazing.

Then, of course, he was clamped and velcroed into a barbaric looking set of restraints, with his arms pinned up around his head, and he screamed and screamed while the radiologist manipulated what looked like the cannon on the death star into position above his chest and my freewheeling revere was brought crashing back to reality.

Still, all things considered, it has been a very good day.

So this is hopefully where we will stay until discharge. I would like to put out there that we can now easily accommodate visitors in larger groups, with their kids too (who were previously not allowed in). We are eager to show him off, to have him meet friendly new faces who are not there to administer some rare and unpleasant form of torture on him, and hopefully wean the suspicious and startled expression that he so often wears off his chubby little face. It's been a while since we've coaxed a smile out of him. Give us a call/write us an email anytime, we would love to see you all.

Knock, knock, knocking on a wooden door.

Well.

Christa is still a bit under the weather but definitely on the mend. It was only one nurse on one shift who told her she ought to go home and spare the hospital's staff and patients her cold, she's been able to see Ford every day since. I haven't gotten sick yet at all and Ford seems to be doing much better.

Today was an exciting day.

First off. There is some disagreement as far as his 'long term' stay at Children's is concerned, but it is mostly a bed dispute between the NICU and the cardiology ward upstairs. Neither of them seems to want to loose a bed to him. So while cardiology is saying he's fine in the NICU, he can stay there until he's ready to be discharged, the NICU is pushing to move him upstairs so they can use the bed for another baby.

In some ways he's better off in the NICU because someone is watching him all the time, but the down side is the cramped quarters and touchy nurses who panic at the slightest sign of a deterioration - and fail to give him the benefit of the doubt, which i think he really needs right now. Upstairs he'll get less attention but they will also give him a chance to prove that he can, in fact, cope with a few episodes of mild desaturation without going into cardiac arrest and spare him the trauma of being put onto CPAP as an unnecessary precaution. If he is ever going to get out of the hospital he's going to need to demonstrate his ability to cope on his own, without monitors and sensors, etc. So it's a mixed bag for us. Obviously we want him home, but obviously we don't want him home while he's still in a (relatively) fragile place.

In other news, the cardiologist on duty this week - Dr. Human (not to be confused with Dr. Vulcan) - made some changes this afternoon that seemed to stir the pot a bit, at least as far as the NICU nurses and neonatologists were concerned. He discontinued Ford's respiratory support and also requested his feeding be moved from NJ (intestinal) to NG (stomach). Since these are all things that need to happen eventually, we are happy they have happened. But Ford has had a hard time with both of them in the past and each time they tried and failed they seemed to temporarily set him back in his recovery. We are both wary-of and excited-for the moves made. So far things seem to be going really well. I should emphazise "so far" so I don't miss the opportunity to knock on wood. I think the longest he's lasted without breathing assistance is an hour, and its been about 10 now. He is doing quite well in terms of his oxygen saturation. His breathing is still a little quick, even at rest, but Dr. Human thinks that is just going to be the case with him, because he is fighting higher than expected pulmonary blood flow (via the shunt), on top of weak cardiac function, on top of cold congestion. He doesn't seem to be overly concerned.

As far as the feeding goes, Ford had progressed over the last two days to getting about 5-10mls of milk orally (via a syringe), which was basically therapeutic stimulation for his swallowing reflex, and the switch to his stomach (via continuous nasal drip) has gone really well. He hasn't had any regurgitations since they changed it over earlier this afternoon and he even had a big burp while Christa was holding him. If he continues to tolerate it through the night and into tomorrow they will try to transition him onto bolus feeds, which means getting larger, concentrated doses over shorter periods of time. These are the final things we need to resolve before he's let loose, so if they continue to progress this smoothly we might have him home sooner than we're expecting (which still might be a few weeks - knock wood). He is gaining charm, weight, and stamina, as well as a passionate tendency to scream and scream and scream. Go Ford!

muchos pictures

Ford's first time wearing clothes, in Edmonton still:


Working on oral stimulation:
(the lovely feet and footwear belong to our neighbor Chloe)One of our favourite Edmonton nurses:
(her name is Natalie but we secretly call her Philippa)


The flight paramedics and nurse getting Ford ready for transfer:
Ford sedated and tucked into the "car bed" for flight!
In Vancouver all the babes get their own white board with important deets:

Hanging out with Mom:
With Dad:
Unsure of the one-shoulder-onesie look (we assured him all the other babies would be sure to follow suit shortly - nothing says summer IV like this off the shoulder ensemble!)
Ford being upright! A sensation he didn't experience until 6 weeks old:

Lytic in nature (Why don't you get a room?)

We found out a few days ago that one of Ford's cultures came back positive for rhinovirus. But while this does explain his crusty nose, persistent sneezing, coughing, and irritability, it does little to make sense of the large tusk that has lately been growing out of his forehead. Go figure.

Fearing a plague of bubonic proportions Ford was immediately isolated in a private room in the back of the NICU until furthur notice.

We are hardly complaining.

As much as we have come to enjoy the hustle and bustle of the ward lifestyle (I just got a sick tatoo across my back "Intensive Care 4 Life"), the hostelesque (with beds starting at $6000 a night) proximity to our neighbours and their sickly children is starting to wear a little thin (I'm sure the feeling is mutual - Sorry Dean, If you're reading this).

And while I cringe to consider, with respect to the fact that the aforementioned price purchased us about 6sq ft of 'living space', what the new per diem being offered us by Canadian health care is, we are really enjoying our spacious 144sq ft pad. Turns out quaratine isn't all that bad.

Ford seems well enough, certainly not struggling much more than before, and his sneezes are the most adorable sounds he's yet produced. In keeping with our theme of the slow crawl towards normal parenting, I am also thrilled to announce that Ford has spread his germs to Christa and she has (probably) spread them to me. Go family! And I would like to ask you, dear readership, if we might siphon off some of Ford's sympathetic vibes and pass them along to Christa who is really feeling pretty rough right now - she was kicked out of the hospital this evening, mask and all!

Otherwise there is not too much to add. Ford's next challenge is to fatten up (he has been steadily climbing this last week and is now back at his birth weight!) and start taking his feeds orally, gastrically, and in compressed doses. I met with one of the cardiologists today, Dr. Human (yeah, I know right?), who has promised to get their team's occupational therapist working on him asap. It might be hard to get him taking food orally, so he will need some training. Please think your best, greasy, fatty thoughts and send them Ford's way.

Mmm. See? Now I'm hungry.

Pas de problème (White snakes)

The CT scan showed nothing abnormal with Ford's heart. We didn't get to watch them perform the scan but the device itself looked pretty cool. I've never been in an MRI or CT room before. Afterwards, I was asking his nurse, who was there during the test, what it looked like. She thought about it for a minute and then said something like: Well, I'm not really sure, it looked cool, kind of like a bunch of white snakes moving through his body.

That got me hoping that perhaps this was the real problem behind all his complications, something that no one had noticed before because they just weren't really looking for white snakes. The cardiologist invited us later to look at the results and took the time to point out the things they were looking at/for, here is the shunt, here is the pulmonary artery, here is the coronary artery, nothing abnormal for a kid with his condition. It all made a certain amount of sense, but I was inclined to agree with the nurse. We've been searching for some alternative therapies for Ford, to help him with his recovery, and I'm thinking we ought to ask for a referral to a herpetologist, just in case.

Otherwise, he's been pretty stable for the last few days. We are, as always, hoping the weather holds.

The saga continues... with CT scans!

So it's been about 4 days since Ford hitched a ride to Vancouver on a retrofitted Learjet - a mobile ICU complete with gold accents.

While the trip itself was uneventful, the last few days have been an overwhelming whirlwind of ups and downs for all three of us. While Ford is suffering from some startling (and as yet unexplained) 'de-sats,' we are haunted by the memories of our previous experience here at BC Children's NICU and the dumpy, sandals-and-shorts-wearing-neonatologist Dr. Singh, who was on-duty for both Emmett's and Ford's admission.

We are the classic victims of the grass-is-always-greener longing for the way things appear on the other side. At the moment Edmonton and the Stollery hospital seem like an oasis of generous, high-quality family-centred care while Vancouver is the ghetto, backwater facility with a stressed and ill-tempered staff who would rather not have to deal with us, with the way we have come to expect things, with what we know about Ford and his temperaments, and with our undercurrents of uncalled for resentment at the general state of things.

Certainly we need to suck it up a bit, take the time to collect ourselves and get settled back into a routine. The people here are probably just as friendly as the folks at the Stollery and we just need to take the time to get to know them a bit more. In retrospect, there was something vacation-like about being in Edmonton these last few months. We had left our normal lives to go to this other place and have a baby and see what hanging out in an ICU for 6 weeks would feel like and then we would come home and it would all be over, or at least better (I'm thinking of opening an adventure tourism company that supplies these kinds of experiences to the blasé seen-it-all crowd of global jet-setters). I don't think I really thought about how it could all be simultaneously so different and so much the same. It is a bit weird, jarring, and kind of hard to explain.

As mentioned, Ford has had a few bad moments here where his overall stability was called into question and a few serious concerns have come to the table. He was temporarily put onto CPAP after being visually assessed as 'looking really sick' but had recovered to high-flow nasal cannula shortly after. Yesterday he had a bad de-sat coupled with a period of inconsolable screaming, high heart-rate, and tachypnea. He was eventually settled with Chloral and the cardiologists swung by to check his heart. There is some concern that his shunt has kinked, or that there is some narrowing/clotting in his 'neoaorta.' Both problems are apparently hard to catch on the echos that he routinely gets, so he's been sent for a CT scan to try and get a better picture of his heart. He was just wheeled past me (I'm in the CT waiting room writing this), so I should head back to the NICU. We were told the results would come quickly, so we should know whether these are real problems or not within a few hours.

We'll try to keep the blog going now that we're home. Ford certainly still has a long way to go, he has only had 1 of 3 heart surgeries and if the others subject him to similarly mired and complicated recoveries, this blog should continue to provide you all with a banquet of reality TV self-reflexivity, knuckle-clenching medical-drama, and off-coloured humour for years to come. Hope you all have the stamina to keep up with our little Ford Taurus.