Reconnecting Santa Fe Style

Outside of the hospital walls, the largest struggle that we had as a consequence of our stay was our relationship with Ezra. That’s not to say that it suffered, it was just significantly changed for a few months where we became the visitors; and his grandparents, aunts, uncles, and cousins became his immediate family.

Now, this must all be underscored with the fact that Ezra is amazing and extraordinarily resilient. Ahna and I had a lot of reservations about how things were going to go with the both of us at the hospital 24/7, and for the most part they have all been proved unnecessary. Since our return home, there really hasn’t been any outward signs that he is having a difficult time adapting back to being with us (he did struggle pretty hard for the first week of sleeping nights – up five or six times each night for extended stretches – but that was due to a sinus infection that has hopefully met it’s foe in some antibiotics). We know that he is at a perfect age (if there is one) to cope with the massive changes that he has been faced with, but we also know that things could have gone a completely different way had we either had a different family support group or had Ezra had a less amicable personality.

That all said, we agreed that we needed a little family reset time. As impossibly hard as it turned out to be to leave town, we ended up picking a visit to a place that we haven’t visited together (Ahna 11 years ago, Oren never) – which turns out to be a hard thing to find in a six hour drive radius. As we drove across the state line yesterday – under perfectly clear skies and empty roads – we also realized that while Ezra has gone to many states and several countries, all of them had been by plane: it was his first time crossing a state line in a car. The drive was simple and fast, the weather is perfect, the city is waiting to be explored today, and the time is precious.

a downtown church, just after dinner

And The World Spins Madly On

Funk. Slump. Sad. Depressed. Doing the motions. Lost in a moment. Cry. Alone. Together. In Between. Afraid. Missing. Wondering.

All of these, all the time. Yet they are easily and often interrupted by a little boy running around and simply wanting you to play cars with him. We find that there are times when we try to stay busy – probably in some sort of attempt to push aside the thoughts about what happened and just focus on something else for a little while. Then other times we find that it’s ok (if not confusing) to sit inside of those of hardest emotions.

It’s a lot harder of an adjustment than either of us anticipated, going from one world to another so quickly and so thoroughly. There really isn’t any half-way house for these travels. While in the hospital, Ahna and I found a deeper connection to each other than we have ever had prior; and since returning to home/life/Ezra that connection has been a lot harder to come by, and the subsequent feeling of distance has just been something that we have to figure out how to overcome.

The trash gets picked up, the house needs cleaned, the kids play outside, laundry needs done, etc. It seems like everything is supposed to stop and revolve around our grief – but it doesn’t, and sometimes the knowledge that things keep moving along is so in your face that it’s hard to deal with. And that’s when we just step off for a little while.

We have had a bunch of people checking in on us through all sorts of different ways, and we feel so apart of your family that we don’t feel entirely alone on this journey….thank you.

I watch the stars from my window sill
The whole world is moving and I’m standing still – The Weepies

Jonathan and Liam

As we sit here and grieve a new loss, we are reminded of another that occurred 11 years ago today. There are no explanations that this universe holds that would make us understand why these two losses had to happen so close to each other; but I have to think that as sure as the sun rose this morning, Uncle Jonathan and Nephew Liam held each other in tight embrace.

The Culture Of The Lanyard

In the hospital, it turns out that there are a lot of little symbols of status or culture. Take for example the lab coat. A early 20th century icon of smarts that has somehow hung on well past it’s usefulness – at least the layman’s perception of that usefulness (although I suppose that there is a place for it in a laboratory while actively participating in some research). Honestly, there are not a lot of people sporting these overgrown pocket protectors, but it is interesting to observe the individuals that walk the halls of the hospital with them on – and there are these odd groups of coats that wander together: talking and walking at high speed without ever stopping. Nobody knows exactly who they are or what they do, or for that matter if they are even real. I can’t figure out if they are just geeky types that don’t care what people think, or people who care way too much what others think.

This post originally was going to just be about the lanyard – and we’ll still get there – but I have to make one more stop on the way to that discussion with a brief note about shoes that the staff wears: Danskos – with a random pair of Sketchers walking about. Clearly they are the most comfortable shoes to do this job in and there are no qualms with it; but if I could make a recommendation to the suits at Dansko, it would be to open employee shops at major hospitals – you’ll make a mint.

Finally on to the lanyards. These things started out as a way to display your employer issued ID cards and soon added security passes, calendars, fact cards, info cards, etc. Then at some point, someone realized that they weren’t just for displaying those things…they were for proudly displaying those things…and they could make a business out of helping people become proud. There are all sorts of these affectionate displays including your alumnus or the college that you cheer for, professional sports teams, ski areas, medical equipment companies, units in the hospital, etc. I can’t blame people for finding places to express their individuality within the world of hospital scrubs and lab coats; but it does make you want to go up to some of these folks and ask what they’re trying to say. I thought about creating one that would say “This Is Just A Lanyard” – but then I realized that would be just the same as all the rest.

PS – I haven’t seen a single one of the NICU staff (doctors or nurses) wearing either the lab coats or the lanyards.

One more note: I tried to find someone that was sporting the trifecta of fashion discussed above for a photo for the blog – and that might be the most elusive of all.

36 Hours For Kids In Full Swing

The 10th Annual 36 Hours For Kids is hopping in the main lobby of the hospital right now. We’ve honestly never heard of it, likely because we have never either stepped foot in this hospital prior to Dec 19, nor do we ever listen to the station that hosts the radiothon. Both of those excuses aside, it’s a really cool and useful even that raises money for various needs in the hospital. I know that for example, the south side of the NICU was outfitted with new monitors for each room with money raised from previous year’s efforts. They are broadcasting live for three consecutive days in the lobby and accepting phone, walk-in, and internet donations for the cause.

Here is a link to the web page for the event.

The view from the fourth floor

The Roller Coaster

I suppose that this kinda ties in to the previous postings about how we are doing, but it feels like a little different take on the question. There is one statement that seems to pop up every once in a while when some folks around here check in with us: ‘it must be a crazy roller coaster ride.’ The answer? Well, sort of. I think that we have found what some roller coaster enthusiasts have been searching for for years…a ride that takes you up, puts you on high, and never lets you down.

Sure, we experience lots of emotions and we go back and forth fairly regularly between nearly all of them. But what’s different about this experience versus any other is that we don’t find ourselves involved with big swings up and down – it’s just always up. Whether it’s anger, hope, sadness, despair, encouragement, fear, understanding, happiness, or something else all together; it’s just all of the time all the way.

More Random Photo Discoveries

In what thus far takes the cake for the most random assortment of discovered photos, we dumped all of the pictures off of Ahna’s cell phone the other day and came upon a few lost treasures. One or two of these might have appeared on the blog in the past, but they are mostly new – even to me – and they cover what is actually a pretty large amount of time…in the neighborhood of 20 months. Oh, and the big one is one of my favorite pictures of Ezra – a la ‘A Snowy Day’

Valentine’s Day

I know that it’s hip and cool to suggest that Valentine’s Day is a made up holiday for the card-making corporations (heck, I did it again this year which automatically means that it’s hip and cool). We all proclaim that we don’t need a specific day to express our feelings for each other, yet odds are that we come nowhere near expressing how we feel on a day-to-day basis…so one day out of the year specifically dedicated to the romantic, emotional, and complete relationship that you share with your loved one is alright with me – even if it’s a made up holiday for the card-making corporations.

This year we spent the holiday, you guessed it, at the hospital. We enjoyed some treats from our nurses, visits from our family, and a romantic dinner of leftover lunch cafeteria food. Despite the position that we find ourselves in, we find that our relationships with each other, family, and friends have been bolstered by this experience. The room was decorated by Nana, and if even for a day, it was nice to have some color in the room (the little bug in the photo was given to us by the hospital for Valentine’s Day).

Ezra’s Happenings

A few more pictures detailing what Ezra has been up to.

Wait, It’s The Weekend Already?

Well, I thought about it yesterday then again this morning, and I decided that at the very least a medical (of sorts) update was needed.

Things continue to move very slowly, so it isn’t going to sound a whole lot different from the last one. We have yet again changed some medicine that he is receiving, and we continue to chase the elusiveness that defines getting him settled and comfortable. The new medicine does make him a bit sleepier, but does still allow for much awake time and interactivity. One thing that has been happening for a few weeks – and hasn’t been discussed here – is that he has moments of dyspnea. They come and go as they please, and they are normally pretty short lived. They also seem to happen when he is either falling into a deeper sleep or when he is waking up from that same sleep, and are identified only by the alarm sounding on the monitor (this is also partially attributable to him being a full-term baby and therefore having a lower resting respiratory rate). This has been a continuing source of much attention, and all of us are keeping a close eye on it.

This morning marks the eight week point of our stay here. Don’t know why that seems more significant than say the six week mark, but it does. I often think back to the first night and day that Liam and I were here (Ahna still at the other hospital) and to the estimated stay in the NICU to be in the neighborhood of two weeks. Obviously, nobody knew at that moment what we know now – and even though it’s the same life, it feels like a completely different one. Eight weeks is a long time and all of that time suggests that what is sustained is also fleeting. We are thankful for everything and everyone that we have in our lives.