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Ezra Dancing

February 12, 2011 by 6 Comments

A video of Ezra dancing to the song ‘Sigh No More’ by Mumford and Sons. This has been a favorite of his for a few months, and almost every time he comes to the hospital he breaks out the public performance of his interpretative dance. The video is super cute (although he has done a better job of singing other times) and runs the 3min 30sec legnth of the song…don’t worry, nobody gets offended if you don’t make it all of the way…that said – the song is worth your time, as it was featured in the Best of 2010 Playlist posted here a few weeks ago.

Without further ado:

 

Filed Under: Ezra!, Video Included

Absent

February 11, 2011 by 11 Comments

Sorry that the blog has been left behind for the last day and a half….honestly, I have been a unmotivated to write anything, so nothing gets written. And tonight really isn’t much different, I just thought that I needed to say it to you all. Maybe more tomorrow – we’ll see how the night goes.

With a blanket from Sara

Ezra haninging out at the hospital this morning

Filed Under: Ezra!, Liam!, Photos Included

FAQs: An Update

February 9, 2011 by 9 Comments

Well, we have been here a lot longer than any of us have anticipated…so, it’s time for a quick revisit to the answers to see if they have changed or been rethought at all.

Where are you sleeping? On the same crappy bed, but it seems to have gotten a lot crappier over the past several weeks. We are still both staying each and every night here (also meaning that our parents are still shouldering the load of watching Ezra – and doing it beautifully, if I might add). Unfortunately, beds don’t seem to grow over time – no matter how much you wish for it. The good news is that our oft-wondered question has been answered in the affirmative: If you through-hike the Appalachian Trail, do you think you could stand months on end of sleeping on a thermarest? Ok, that has never been a question that has seriously been asked, but still the answer remains the same…and the thermarest might even be more comfortable.

How is the cafeteria food? Although the ketchup situation resolved itself with the help of friends from Ohio, the overall food situation hasn’t improved. We have broken out of here for a few meals, and we have had family bring us some stuff; but 7 weeks of eating away from home is getting really old no matter how you cut it. We have found some ways to cope by bringing stuff in (cereal, snacks, etc), but we are still often limited to the offers from the kitchen staff downstairs – I can confirm that they have a very limited vegetarian selection….and I know that both of our digestive systems have undergone a reconditioning that will hopefully make them tough enough to handle the most remote food options after this.

How’s the drive? Well, you’ll have to ask our parents that question. Due to a combination of Liam’s condition and the weather over the past two weeks, we haven’t gone home. We just don’t want to end up that far away if we are needed here…and a lot of snow on the roads have really hampered any thoughts of going somewhere other than the occasional local Target run (it isn’t the snow that we are concerned about, but the fact that we would end up 35 miles away with slow driving people in our way). Since we haven’t been able to go home, our folks have been more than accommodating in figuring out a way to get themselves and Ezra up here almost everyday – which is always a remarkable bright spot in the day.

Showers? I think that we have figured out that the earlier you go, the warmer your shower is likely to be…which is somewhat confusing to me since we are in a 24-hr hospital. It’s bizarre that they are apparently on a limited water supply that would rival most residential home systems. When we were still going home pretty often, it was nice to be able to shower there and do the things that take more time and space (good clean of hair – for Ahna…the jokes about me are too obvious, a shave, etc); but since we are showering here, we are forced to make due with what we have…and Ahna can confirm that blow drying a head full of hair in a steamroom is annoying at best; and I can confirm that trying to shave using a sink with an automatic faucet that times out and stops working after a little while will make you want to say a lot of four letter words.

Do you get sick on those elevators? Still no, but we are completely sick of the elevators. There seems to be one that breaks down fairly often, leaving the vast majority of people fighting for space on the other one….and because of this, you can count on stopping at each and every floor each and every trip up and down. We do try to take the stairs when we can (even though they are completely out of the way…very poor design), but sometimes after that cafeteria food it just isn’t that good of an idea.

How are you doing? If you’ve been keeping up with the blog, you could probably come up with the appropriate answer to this question. Still mostly the same, but really stir crazy right now…and really wanting to be back home. We have found a game that we have been playing back and forth to occupy some of our time (Words With Friends…do you have the app? If not, go get it…and let me know your username…maybe we can play sometime).

Update on the nurses and the pumps….not really an update to a FAQ, but an update none-the-less. A few days ago I did a posting about the pumps in the rooms and mentioned how it seemed that the alarms would inevitably sound whenever our nurse was unavailable. Since then, it was nicely brought to my attention (insert throat-clearing noise and sneaky look to another person here) that perception doesn’t always meet up with reality….and that the majority of the time the nurses are really and willing as soon as that alarm sounds. Because we truly have the best nurses available, it’s time to smile and not insert the sarcastic humor that would normally go here.

Filed Under: Ezra!, Liam!, Life in General

The Hospital Is Like…

February 8, 2011 by 8 Comments

The hospital is like a casino. With hallways that have no windows, a staff that goes all hours of the day – fresh as can be, and no clocks in public places…you can easily loose time here. Oh, and there is a buffet here (we call it a cafeteria).

The hospital is like a fire station. Joking, teasing, drama…but always ready to handle whatever comes. People live and work here…nuff said.

The hospital is like a school. There is lots of learning that goes on here, from the nurses and doctors receiving lectures and training, to the parents and patients being exposed to worlds of information that they never knew they needed to learn. Then there is the cafeteria…like all other school cafeterias.

The hospital is like camping. You sleep where you hang out, you shower in communal showers (and not everyday if you don’t feel like it), you have to make you bed each morning and reset it each evening, and the nurses get to see you at all hours of the day: just waking, fully awake, napping, eating, on the way to the shower, dirty, smelly, clean, with PJs on, in bed, etc.

The hospital is like a fishbowl. Without the ability to completely close off the room from the hallway and the nurses desk, there is always someone watching – even if they aren’t sitting there, they are connected to the alarms. The room that we have is in the hallway that leads back to the staff amenities: lounges, offices, sleep rooms, and elevators..so we get to see everyone…all the time. Even if we pull the curtain near the bed in the room, it’s still not completely sealed from the rest of the room. On top of that, everyone knows what you and the patient are doing….it’s good (sharing of information, constant concern and checking in) and it’s bad (sharing of information, constant concern and checking in).

The hospital is like a prison. There are guards at the front doors to even get into the hospital. You have to wear a wristband and a sticker. You have to go through another round of security at the entrance to the NICU, and if you are a visitor, you have to be in the visitor log and receive a photo ID. Only after all of that, are you allowed into the secure and locked unit – with restrictions on what/who you can have in your room. And that cafeteria thing. Ok, really it’s nowhere near a prison, but…..

The hospital is like the interstate. To paraphrase lyrics from a favorite song: we have left but we haven’t quite arrived. It’s a constant place and feeling of going somewhere, but being nowhere.

The hospital is unlike home.

Filed Under: Life in General

Another Briese Family (!)

February 8, 2011 by 3 Comments

Yea, seriously. On the one of the very first days that we were here, one of the parents of a patient located across the hall (at the time) approached my Dad when I was down visiting Ahna. She asked about our last name….inquiring because she had the same last name. It’s obvious that there are other families out there also with the Briese name (although it’s not like Johnson or Smith), but I had never met any of them, let alone randomly ran into one of the them.

This family (still here as well) lives on a working farm in southwest Montana. They have lived there for generations, and it’s possible that we can loosely trace our roots back far enough to find the same distant relatives that came from Germany/Poland. They do do one thing rather differently….how the name is pronounced. We say it like ‘breeze’ and they say it like ‘breezee’. The Mom that we met was able to bring us a historical book that they put together for a relative tracing a lot of that person’s life – we took it and made a few copies before returning it. One of the things in the book was the family coat-of-arms (posted below), which looks familiar and different at the same time. I did a family history essay way back in high school and got our coat-of-arms from a relative…it could be the same, but I can’t remember. It’s a strange and unique thing to be in the middle of the NICU at The Children’s Hospital in Denver, meeting a distant family relative from Montana.

Of note: due to the lack of facility like this in a large multi-state region, a lot of folks come here from a lot of places…like Montana. These friends that we have made have set up shop in the Ronald McDonald house just up the street – so if you are looking for something to donate to, or just wondered if that loose change at the restaurant actually goes somewhere; consider that foundation as a good and worthy cause. It does really matter.

PS – Voltus In Hostem means ‘face to the enemy.’

Filed Under: Life in General, Photos Included

Monday Afternoon

February 7, 2011 by 12 Comments

We are in a winter weather pattern that is even a little odd for this area, and certainly restrictive to parents wishing to be in multiple places at once without ever being to far from either one. After a ridiculously warm weekend about 10 days ago, it has been pretty cold (including that super cold snap) and it has snowed pretty much every day – with another 6-12 expected tonight and tomorrow. It’s been a long time since either Ahna or I have made it home, although we have made it out of the hospital for short trips in the area a few times. Outside of that, it’s been a very emotional couple of days…and I think I’ll just leave it at that.

Took this photo over the weekend, and thought it deserved it’s own post to shine…

Filed Under: Liam!, Photos Included

32 Months!

February 7, 2011 by Leave a Comment

If you are newer to the blog, click here to find the first 2 years photo compilations.

Filed Under: Ezra!, Photos Included

A Little Celebration…

February 6, 2011 by 3 Comments

Okay, it’s not the blue and orange, but tonight we cheered hard for the green and yellow. It was really good for us to be able to think about something else for a little while, and at the end of it all to be able to smile. My parents brought up some decorations for the room, and we were able to sneak some chips and dip into the room to have our own little Super Bowl party. Liam hung with us for the entire game, and was actually awake for the ending – likely due to the excitement from his Mom and Dad. The staff around here was also supportive…they filtered anyone that needed to come into the room during the game (like the guy checking the fridge) by asking if they were cheering for the Packers. Steeler fan? Can’t go in. Also, big props to Aaron Rodgers for proving a lot of people wrong and the Packer front office for kicking a failing QB to the side. GO PACKERS!

 

 

Filed Under: Ezra!, Liam!, Photos Included

GO PACKERS!

February 6, 2011 by 5 Comments

As half of this family comes from Wisconsin….(sorry Johnathan, this had to happen. Denver folks: don’t worry, he’s a Broncos fan first. Jeff: nice try with the b-team stuff from Minneapolis.).

Ezra speaks for his little brother and the rest of us on this Super Bowl Sunday when he says: GO PACKERS!

Filed Under: Ezra!, Life in General, Photos Included

The Pumps

February 5, 2011 by Leave a Comment

Earlier this afternoon, Ahna, Liam, and I were watching a movie (Taking Woodstock – two stars…just not enough story in the film to carry it) and I realized after about a hour that I sort of forgot that we were in the hospital. It was quiet, the lights were low, the snow was falling…we were lost in the moment. As I realized this, I looked over at Ahna and smiled to myself. Then I saw the blinking lights just out of focus – and it all came rushing back. The noises in the hallway returned, the TV got smaller, the chair more uncomfortable.

When the pumps are powered and doing their business, they have this image that looks like a needle, with three lights that move directionally to show you that the pumps are working and the medicine is moving. These relatively small machines are responsible for giving Liam all of his medication…they use the same syringe that you are used to seeing, but they have an attachment that allows the pump to give the medicine at a very precise rate and a very precise amount. The only inconvenience that these normally create is that Liam is permanently connected; and therefore they must travel everywhere with us – from a little move in the room to a trip down the hallway.

However, these are also the hands-down winners of the ‘Most Annoying Thing In The Room’ award. The beeping noise that they make is unmistakable and reminds us each day that machines don’t know the difference between night and day. There are three primary times that the alarms sound on these things…the first is when the medicine is near empty: it will go off two times then stop. Due to this, we have become conditioned to let the alarm sound twice to see if this is the reason (lately we can actually tell you exactly when this will go off as Liam is getting a single dose of medicine only twice a day – the rest of the time he is on a steady drip). The second example of the alarm is the next logical one after the first: when the medicine is done. In this case, the alarm sounds until someone turns it off. And finally, the other primary reason for the beeping noise is if there is pressure increasing in the line….this alarm goes off all the time and all hours of the day – but is 99% of the time a false alarm. No legit reason, no understanding for why. It just does. And I can tell you from weeks of personal experience, when the alarm sounds for either the #2 or #3 reasons (since both sound continuously until someone turns them off), the nurses are either tending to another patient or on break. They are never just sitting at the desk and readily available…take it to the bank.

Filed Under: Liam!, Photos Included
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