Friday Afternoon

This place is crazy – I have no idea how the staff here stays to upbeat and helpful, let alone sane. In the short/long time that we have been here, there have been at least three other kids put on the head cooling; meaning that despite our best intentions, devastation like we felt is a constant in the NICU. Of course there are amazing stories of recovery, and there are lots and lots of kids that come here for short periods of time and get better with the help of the doctors and nurses – but it’s an unfamiliar realization that this isn’t something that happens every blue moon, rather something that families are faced with on an all-to-regular basis.

Our last few days have featured a steady stream of emotion, some of which has been expected and some of which has been very unexpected. These moments of stark reminders of reality sneak up and scream their presence at the most unassuming of times. Ahna and I generally are able to cope with change fairly well – and are getting a lot better at it since Ezra appeared – but to deal with these changes as frequently as they come, as surprising as they are, and as impactful as they are is a new experience for us (resulting in a lot more gray hair. I’m sure that if you took before and after shots of us, they would look a lot like the before and after shots of the President). You could probably throw just about anything our way right now and we would be able to absorb it, but you change even the smallest thing with Liam in a way that wasn’t anticipated, and the world temporarily shifts.

We have been graced with a few visits from Ezra in the past two days, and today we were able to see in person for the first time his newest ‘face meets something it’s not supposed to’ marking. He and Nora were quietly and peacefully sitting in a chair down at my parent’s house when they tipped it over and fell into a cabinet. Nora walked away with no outward expression of the incident, while Ezra received a temporary tattoo of a scrape on his upper lip.

Hijacked: Attn Fire Service People

There was a previous successful hijacking attempt on this blog about how to help Liam (now can be seen at the top), but this one is a little different: it didn’t start out with a disclaimer (although, I suppose that’s what I am writing right now) because it was in fact hijacked by me. It’s not too often that I get to speak with too many members of the fire service outside of the poor guys that I work with – so I am going to bend your ears for a quick minute.

Seven years ago a few of us started doing a stair climb on Sept 11 (it has been written about several previous times on this blog), and this past year we have teamed up with the NFFF to take the program nationally. The gist is that you get a building and 343 firefighters to climb 110 flights of stairs on the morning of 9/11. It’s a tremendous memorial, a great motivation for better fitness, and an amazing training opportunity. Our goal is to get 100 places doing it this year for the 10th anniversary…and we are on the way. 63 department’s have already expressed serious interest in doing one, and we are going to put them on at both the CFSI dinner and at FDIC. Now we need your department to join in as well (or if you are already doing one in your city, we need you to pass this along to all of your friends). It’s one of the most rewarding things that I have ever been a part of, and it’s something that I know thousands of firefighters are looking forward to each year.

It’s not hard – as a matter of fact, we have done a lot of the design work for you – there is an IAP available that will go over everything you need to get it set up. You don’t even need a tall building, or a building at all. There are several climbs that use smaller buildings, amphitheaters, or sports venues (FDIC will be done at Lucas Oil Stadium).

For more information go to both www.9-11stairclimb.com and www.denverstairclimb.com

Molded

As we were expecting Ezra a few years ago, we received a gift from a friend/coworker of Ahna’s of a three dimensional replica of his hand and foot. Well, nine days into Liam’s life, we were fortunate to have her come back and do it again.

It’s at a place like this where I feel like I have to be honest…when I first heard about these molds, I was really skeptical. Of course, it’s a modern day rendition of the old school brassed baby shoe that our Grandparent’s have on their shelves – so it’s not a new concept…but I used to think that it would be a little creepy to have the molds done; and frankly I was afraid of turning into that old couple that has things like that on the fireplace mantel when our kids have become parent’s of their own. That was before I saw them done, and done how Cheri does them. It’s a super cool thing to have, and it’s really nice to have that moment in time so properly on display.

When Cheri got in touch with us about doing Liam’s mold, we were right in the middle of the first two weeks of this journey: quite confused, quite emotional, and quite lost (still are at times); but we were certainly sure that we wanted that molding to get done. She came up to the hospital, and figured a way to get Liam’s (who was still very sedated and laying flat on his back) hand and foot into the cups for the mold to take shape. A few weeks later, we were presented with the awesome piece of art that will soon find a good spot in the house.

If you are interested in getting one of these of your child (or pet or you, I suppose) for yourself contact Cheri at www.littlepawsdesigns.com

Cold

I’ll get it out of the way first, to attempt to spare you the east coast centric hell-is-freezing news stories that have dominated the past few months (stop crying, it’s winter). Over the weekend it was 68 degrees. This morning it was -18 with a wind chill of -41. That’s cold….and you can see it in the photo below: that’s the window sill in our hospital room when we opened the curtains – and it’s inside the room (right off the edge to the right is the bed).

Liam’s day was again up and down. During his two decently longer naps, his vital signs were all over the place…again giving us more concern than normal. And even though he is getting anti-seizure medicine, there are still occasional signs that he might be having them. Also, he did finally loose that unappealing stump of the umbilical cord during a bath….revealing a clear cut innie (there was some question with Ezra).

Ichiro Would Be Jealous

Wow, that’s a lot of hits: sometime yesterday afternoon we passed the 100,000 hit mark. It has to be said that the vast majority of those hits have come in the past six weeks, which tells us directly how much we are loved and supported. I don’t care if all those hits are different people, or the same person…but each time that you visit the site, hit the refresh button, or pass it along to someone else we become stronger because you become part of our journey.

Thank you.

Mental Fortitude? Sometimes Hard To Come By

Some guy named Einstein once said that “the definition of insanity is doing the same thing over and over again and expecting different results.”

Each day encompasses essentially the same thing: we wake up after a short night sleep, have breakfast, hang out with Liam, have lunch, hang out with Liam, have dinner, hang out with Liam, go to bed. Sprinkle in some family and a trip to see home/Ezra and you have pretty much nailed down our current life. During each of the past 43 days, we have expected something different than what has happened (both positive and negative), yet we wake each morning thinking that something is going to be different about today. The anticipation is tiresome and the routine has long lost it’s usefulness.

Walking back into the NICU this morning, there was a harsh realization that I really don’t like this place anymore. Sure the hospital and the NICU are well designed and well stocked with things that we need, but it’s just not the life that we want. The doors, the carpet, the smells, the sounds, and the routine are getting on our nerves in a big way – compound that with a winter storm that has brought the coldest temps in more than a decade – and you end up with a level of restlessness that is hard to overcome.

The one thing that we aren’t sick of? Our nurses.

As we walk by the folks that don’t have a private room, we think about how thankful we are to have the space and the ability to spread out. In the room we have a TV that features 4 local channels, 5 ESPN channels, 5 news channels, 5 Spanish speaking channels, and 6 basic cable channels….and it’s surprising (or not) that there is frequently nothing but junk on them. We have the internet, and even though that has proven a good escape at times, it still turns boring and lonely. Books? Magazines? Games? Movies? done and done.

Yet, there isn’t any option. This will either get easier or harder – and we only control a small portion of that.

Monday Morning Photo Dump

Bunch of photos from a few different people’s cameras…including a few from the National Western Stock Show (and a better one of Ezra on the 2200 lbs bull), Ezra tickling baby Matea, Oren holding Matea, Nora and Ezra doing yoga, a book reading fort, and a farewell photo to a long-time backpack friend (one that I got as a sophomore or junior in high school – and has traveled to many places, mountain tops, scenic views, countries, and continents).

6 Weeks….

Seems like a lifetime and a flash all in one. There is a line from a John Denver song about Toledo, Ohio where he says “I spent a week there one day.” It seems to be a particularly relevant feeling right now.

Yesterday morning was a rough go for a while. Liam’s oxygen saturation levels dropped well below acceptable standards for a few hours as did his conscience state. In response, we changed a medicine that he was on, and it seems to have worked – as he is back near the ‘normal’ awake times and back to adequate breathing levels. It seems as though when you stack a few medicines together, they can have a synergistic effect, sometimes exploding the desired effects of the medicine into something more than originally anticipated.

We were also fortunate to have Ezra come up and visit twice yesterday….fortunate that the second time he was a lot more amicable than the first time. In the morning, he was a lot like a 2.5 year old that didn’t sleep well (go figure); but in the evening he was a lot more like a 2.5 year old that slept well. During his later visit he even sang four songs to Liam: ABCs, Twinkle Twinkle, the car song, and the hot tub song. The last two listed there aren’t something that you will find in the iTunes top-10; but if you pick a random melody and sing out of tune about how much you like cars or hot tubs, you are likely to get pretty close.

As the post this post is written, Liam fell asleep after a bath (which is a pretty good bet – the bath serves somewhere between a traumatic event and a soothing time for him). Sounds like a good plan to me….

A Lot In One Post…

I had meant to write a posting yesterday, and just didn’t get around to it….in the morning, I took the opportunity to go down and take Ezra swimming – something that we haven’t done since Liam was born and something that we normally do on at least a weekly basis. Then the afternoon just sort of flew by with visitors and holding Liam. So in place of a post yesterday and one this morning, you get something jumbo sized.

We have been treated to several handmade gifts for Liam since he has been here. We posted about a blanket, a painting,  and a hat (on second thought, maybe we haven’t mentioned the hat yet, so I will work on a photo of that….or if it has been mentioned, I can’t find the post) that he was previously given, and this time we are posting about two other things that people have graciously given to him. So the first item is a cape…yup a cape! One of our friends gave it to him because “every boy needs a cape.” How right she is. It was handmade by a friend of our friend at a place called Happily Home Sewn, and features a big ‘L’ on top of an Aspen leaf/tree. It’s perfect.

The second item is a new sweater for the colder days when we take Liam on a walk outside – or just to keep him warm and cozy inside. It was made by one of our nurses, and is equally a perfect balance of color, fashion, and function. It so obvious to tell that these items come from such loving places, and we are so happy to be able to share them with you.

Okay, next item: Matthew came in town and surprised us with an arrival a full day earlier than expected (and looking quite professorial, if I might add). We are again reminded of the amazing family that we have surrounding us.

Here is a follow-up photo to the ‘Hold Your Hand’ posting, and another great photo by Ahna (she’s getting really good at that).

And finally, here is a photo of the hospital that I took last evening. I have been meaning to go and take a shot at sunset for a few weeks, and just got around to it yesterday. It’s a five-shot compilation using the HDR technique.

The Leads

Remember that post about the monitor? Yea, I know that a couple of days ago seems like nearly an eternity to us too. In that post, I eluded to the leads that actually hook the monitor to Liam – so here is their story.

There are five individual points of connection between the monitor and Liam (insert asterisk here, one of them actually goes to the bed): three of those are on his chest, one on his belly, and one on his foot. The three that are on his chest are the ones that are responsible for monitoring his pulse and his respiratory rate and get changed at every bath or whenever they decide to stick to his clothing instead of his body. Throughout out stay here, we have become educated in a lot of things, one of which has been how to place those leads on Liam, and how to best remove them with as little chance of pain as possible – although there is probably no physical way of doing that completely.

The lead on his belly – in the photo as a golden bear – is actually a temperature sensor that is hooked into the bed. The computer then uses that information to control the amount of heat that the warmer puts out to keep Liam at a certain temperature: 36.5 celsius. For some reason, this lead and wire are the most difficult to deal with and like you computer cables at home, will always become knotted and tangled no matter how perfectly you placed it last time. I think that it’s because it’s got a heavy connection point on the end and a small flimsy wire that it will just knot itself with no warning and with no easy ability to undo it.

Finally, there is the lead that is attached to his foot – and it changes feet each day just so it isn’t always on one or the other. This one’s primary concern is Liam’s oxygen saturation levels, but also serves as a backup pulse monitoring lead. This one also causes us some frustration on a near daily basis, but it’s because Liam like to kick his legs and that motion causes the lead to not register that well. It is also temperature sensitive, so if Liam’s feet are a little cold, than it doesn’t like to work as well. And of course whenever it doesn’t work, the alarm sounds.

Since it is known that there are five leads, you would correctly surmise that there are also five different cables that have to be managed, along with the four different IV lines. All of these together create quite the mess and quite the entanglement. We spend time after each bath attempting to organize them, but that only lasts until the first time that you pick him up and sit with him in the chair. Most of the time it isn’t really an issue – even when they are messy – but it does reach the point where something has to be done. It’s an impossible and never ending task to keep them clean.