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Reality Vs Reality

January 13, 2011 by 28 Comments

I know that we have talked about it before, but as I selected the photos for this evening’s posting, I again realized that there are two different colliding worlds in existence right now: one that is easily visible and one that is not. We can lay with Liam or look at the photos and see something completely different than what is actually happening inside of him. The photos and video show one side of that equation, but you can unfortunately rest assured that things aren’t as good as they appear: on top of what he has already faced, the struggles and issues that were mentioned in yesterday’s posting have continued today. Last evening and again this evening proved to be rough for Liam, and we are searching for how to help him through this. We are also searching for how to get through this ourselves, as we are sometimes helpless to the limits of body and medicine. As a parent you just want to make things better and take all the difficulties away…unfortunately there are times when you can’t do either and you are forced into doing only the most basic of things – like loving your child by wrapping your arms around him and holding on tight.

Filed Under: Liam!, Photos Included

A Quick PM Update

January 12, 2011 by 4 Comments

Liam is resting comfortably as we talk. Which is part of a recent trend…he is sleeping a whole lot more and his awake time is substantially less during the past two days than it has previously been. There are several theories on why this might be happening, so it’s a matter of sorting through them and figuring out what might actually be causing the tiredness. By and large, his vitals signs remain mostly stable – with a few hiccups in his heart rate that have self corrected with time. The heart rate issue is a new one, again unsure of the reason, but might be related to the sleepiness.

Ahna and I have taken turns visiting home during the last couple of days, and we are hopeful to both make the journey tomorrow sometime if Liam stabilizes enough to make us comfortable in leaving for a few hours. Otherwise, we have spent this cold and snow spell mostly inside and warm – and not complaining about it like everyone on the east coast (sorry friends, but the news coverage is getting old). Also on that note, I saw a satellite picture of the US this morning that showed that every state but one has snow on the ground. Weird. Click here to find out who doesn’t.

Filed Under: Liam!, Photos Included

A Family Of Aspens

January 11, 2011 by 7 Comments

We are blessed to be surrounded by some pretty talented people. Some of them are gear heads, some are tech geeks, some are musicians, some are outdoorsy, some are politically motivated, some are just plain cool, and some are artsy. A good friend of ours is one of those artsy types, and has an amazing talent for painting. We have been fortunate to have received several other pieces of her art over the years (if you ever come to our house, all of them are proudly displayed) including some pieces that you might know about: the art from our wedding invitation and the art from Ezra’s baby shower invitation.

So as we got closer to Liam’s due date, we reached out to her and asked her to do another painting. The art that she has done specifically with our family in mind has been centered on a Colorado staple: the aspen tree. For our wedding, the drawing was of an aspen tree with our initials carved into it. For Ezra’s shower, it was two aspen trees with a sapling growing between them. And now, in the best piece yet, there are the three trees from before (Ezra’s just a little older) and a new one for Liam. Perhaps my favorite part of the painting is the rest of the grove that surrounds the four trees….our extended family and friends. I don’t know how to describe the amount of time, effort, and thought that goes into a painting like this one; other than to use the word ‘love.’ Thank you, Erin!

 

Filed Under: Ezra!, Liam!, Photos Included

A Photo-Less Liam Update

January 10, 2011 by 6 Comments

What?! No photos? Seriously, can you believe that the camera didn’t even come out of the bag today (yet)? Well, rest assured that there were photos taken today, just not by me. Amber, who took our photos last week, came back this morning to take a few more and to give Ezra a second shot at being a more photogenic big brother. I think that both goals were achieved – to varying degrees: More photos taken without tubing? Check and done. Ezra being in more photos with Liam? Yes, if you consider 5 keepers sufficient. Since that’s what we get, we consider it sufficient.

Liam’s last two days have had their ups and downs. He has been more awake and alert than he was in the previous couple of weeks, which is mostly due to the decrease in swelling in his head. He still hasn’t, however, made any movements or signs that would indicate that his brain is doing anything beyond the capability of the brain stem. His breathing remains positional, and while it is mostly okay, he continues to experience several bouts each day of difficulty breathing where his oxygen saturation levels go down well below normal levels. We are also closely watching for any outward signs of seizures, as there have been a couple of times that our interests have peaked in this manner.

It’s really easy from time to time to forget what is actually happening, and get lost in what looks like a normal, healthy baby. There are intentional moments – especially when we are holding Liam – where we don’t think about the injury and damage that he has….then there are the omnipresent reminders that we run into all of the time. It’s hard to live all of the time in either of those worlds, and we find that the only way to stay sane is to try to balance the moments with the realities.

We were able to give Liam a bath a couple of times in the last few days, and have actually transitioned to being able to use an infant tub instead of just doing it on his bed. We have to be fast when using the tub, as he still struggles to be able to maintain his temperature without the help of the heating unit. Oh, that reminds me…I do actually have photos from when we did the bath the other day that I can post…so ignore the title and the first part of the posting as I wasn’t really thinking at the time about where this post would end up (don’t worry, your computer is fine and your eyes aren’t tricking you…the second photo is intentionally blurred to keep this site G-ish rated).

Filed Under: Liam!, Photos Included

FAQs: Part 2

January 9, 2011 by 1 Comment

How’s the drive?

Some days are better than others. The fact of the drive are this: it’s right at 30 miles, 28 of which are interstate – and no matter how fast you drive or how little traffic there is, it will still somehow take you no less than 30 minutes. For those that don’t live in the area, Children’s sits just off of 225 and we have to essentially drive the entire 12 mile length of this disaster of a highway to get to and from home. It’s no bigger than 4 lanes for most of it, and most of that section has construction going on. That means that if there is the slightest cross wind, traffic comes to a screeching halt. It also means that we do our absolute best in planning our trips home for non-volume times. Snowfall has met us twice since we have been here, but it really hasn’t hindered our ability to get back and forth too much. A little secret to close this answer: if you are staying here at the hospital overnight in the winter, or just visiting on really cold days, park underground in the garage. We started doing it during the last cold snap, and found that the lack of exposure to open air – along with some geothermal warming properties – keep the temps down there at least 10-20 degrees warmer that what is happening outside. Now that we said that, don’t everyone come at once and take our spots.

Showers?

Yes, sometimes. Okay, we try for everyday but there might have been one or three that snuck by without it getting done. We have been enjoying the opportunities to use our own shower at home when we go, but on the times that we need to use one here there are a couple available. They are shared (not gang) meaning that it’s first come first served to the shower rooms. They are plenty utilitarian and do the job; but I would never design one that way given the chance (example: as with any medical-style zero entry shower I have seen, water gets everywhere).

Do you get sick on those elevators?

So this isn’t a question that we normally get from our friends or family, but we have heard it a lot on the rides up and down from the fourth floor. The centerpiece to the main atrium are these glass elevators that seem to travel as though we needed to get to the 80th floor in 10 seconds or less – the problem being that they only go four floors. I don’t have any problem with them, Ahna just ignores looking outside, and Ezra loves them. But I can tell you that there is a large percentage of patients and visitors that can’t stand riding them and find it difficult to use them without feeling sick. Interestingly, there is a bank of enclosed elevators just about 50 feet away that people don’t seem to know are there and would most likely alleviate all of the fears.

Filed Under: Liam!, Photos Included, Video Included

31 Months!

January 8, 2011 by 6 Comments

Filed Under: Ezra!, Photos Included

More Than Co-Workers

January 8, 2011 by 4 Comments

I’m not sure how to go about saying thank you in a way that would actually convey how we feel about the friends and family we have at CTE and at the CRFD. I will freely admit that I think that what the fire service family offers is rarely if ever found in other places – but we have found one of those places at Ahna’s school. The outpouring of support and offers of help that we have received from both places is a stark reminder about the greatest parts of a community and a humbling reminder of how good of friends that we have. You guys are an inspiration to us and it’s our hope that we are able – in some way or some how – to pay this back in the future.

Here are a couple of pictures from this morning (if you click on them, it will take you to a large size).

Filed Under: Liam!, Photos Included

Walkabout

January 7, 2011 by 7 Comments

We are really grateful for nurses that push us….and tonight we experienced a definite upside of that encouragement with our first walk with Liam. When we were first asked about taking him out on a walk, we were a hesitant yes…but we also didn’t have a stroller that we could use (we only have one that is a car seat clip in frame, and one that is for kids out of an infant seat). But this didn’t deter our nurse. She called us back on her day off and told us that she would bring in her stroller from home. So, excuses all used up, the stroller came in today with our nurse and we found time to take him out and about just before dinner. It did require bringing along the medication pole which forced a slower pace, but we made a loop around the NICU and a couple loops around the 4th floor. Moments of normal things, even in non-normal settings, are cherished.

Filed Under: Liam!, Photos Included

Liam’s Naming Ceremony

January 6, 2011 by 7 Comments

As we continue in our lives down a path of religious fulfillment, we are also paving the road for a household of two religions (see link above for a much deeper explanation about our intentions). Since we are not shying away from either religion and it’s our intent to be as inclusive of each of them as is possible, we have introduced Liam as a child of God and practicing member in both the Lutheran faith and the Jewish faith. Almost 10 days ago Liam had is baptism; and last night Liam had a naming ceremony.

For those that might be unfamiliar with a Jewish naming ceremony (don’t worry, we didn’t really know the details either), in it’s easiest explanation it’s the Bris without the cutting. In our case, it wasn’t a matter of a circumcision or not, it was a matter of what is appropriate for this situation. Traditionally, the circumcision in the Jewish faith is the male covenant with God, the community, and the earth – but there was an obvious missing piece for the girls….so, a naming ceremony with all of the same rituals and prayers was created to create that same covenant without the gender specifics.

Similar to the Catholic tradition of giving a Saint’s name to a baby at either baptism or confirmation, there is a tradition in Judaism to give a name for which your child will be ‘known amongst the Jewish people.’ It’s a ceremonial thing and is a chance to connect the child with something else: a family member, a word (light, hope, etc), etc. We chose to give Liam the name Zwi, which is the name my Saba took when he came to Israel from Germany as the Holocaust began. It means deer or gazelle, which really doesn’t have a larger-than-life meaning…but every time that you see one of those animals, you can now think of Liam.

We did the ceremony in the hospital room with our Rabbi from our Jewish community. As we were able to do with the baptism, we hooked up via the powers of iChat and had some of our family there with us. One of the mizvot (acts of sacred connection) that is performed in the ceremony is wrapping Liam in a tallit, which there are photos of below.

 

Filed Under: Ezra!, Liam!, Photos Included

FAQs: Part 1

January 5, 2011 by 5 Comments

Where are you sleeping?

It will be noted that ‘where’ is different from ‘how’ and I will answer both. We have spent every night at the hospital with Liam and each of those nights we spend in his room. To the matter of ‘where’: there is a pull-out couch that expands all of the way to the expansive size of a twin bed. It provides a very comfortable two inch thick plastic covered pad that is advertised as a mattress. We have purchased a foam pad to go on top of the mattress, but it now only makes it  feel a little less comfortable. We have graciously been provided one sheet, two blankets, and three pillows by the hospital, and have supplemented some on our own.

When folks hear that we are sleeping here, the immediate presumption is that one of us is on the bed and one of us is on a reclining chair; however we are both sleeping on the bed together – as it provides a little more privacy with a thin and mostly translucent curtain. Plus, it’s been nice to sleep close to each other, although we are again looking forward to the time when we will have the freedom not to be close on our much larger king bed at home.

Now to the question of ‘how’…depends on the night. For the most part the daily emotional toll has been so substantive that by the time it’s time to go to sleep, we actually don’t have much of a problem. There has been the occasional night of uncomfortable and restless sleep, but we are getting by. Plus with the addition of an every one in a while afternoon nap with Liam snuggling, we have been able to do alright.

How is the cafeteria food?

Well, I have learned a few things by eating in the cafeteria. The most important of those things is that ketchup packets suck. As a response, I would like to propose starting an activist organization that will take up the cause of hospital-cafeteria-goers nationwide and push to institute regular condiment dispensers for everyone’s sanity. Who’s with me?

The most useful tip that we might be able to provide anybody that would find themselves staring at days upon days of this sort of food is to actually eat when everyone else is eating. The cooks seem to try to create a stockpile of the hot food, thus creating an abundance of it after the rush is over – and no need to cook anything fresh. Sometimes the timing of everything simply doesn’t line up, but it’s worth waiting a few extra minutes with everyone else in order to get something semi-recently made.

All of that said, the cafeteria is actually a pretty good and cheap place to eat meals – especially lunch (it’s when everything is up and running and is by far the busiest meal of the day). Today’s lunch options included tofu and bok choy with rice, salmon with asparagus, garlic fettuccine, two different types of soup, a fresh sandwich bar, a salad bar, fresh pizza, and a regular assortment of grill food. We have recently seen everything from Swedish meatballs to teryaki noodles – and a lot of stuff in between.

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