Four weeks ago today we woke up at home wondering if a baby was ever going to come. Ezra was five days late, so as the due date had already come and gone, we anticipated another long few days. Turns out we had no idea what the following 24 hours would bring and how it would so dramatically change our lives. So here we sit, 28 days later still wondering what each day will bring.

Every day at any moment carries with it a unique and sometimes unexpected set of challenges. Sometimes they are emotional ones and other times they are physical ones. They always seem to come with little or no warning and they always seem to take a lot out of us. Liam’s day yesterday was filled with the same up and down inconsistency that has defined the previous few days. Earlier yesterday, his heart rate was all over the place, and then that was replaced last evening with his oxygen levels doing the same thing. He also naps a lot – and has become more lethargic than we have seen since he was brought out of some of the early on sedation. We continue to search for the answers to all of this, and the staff is working hard to help us out.

No deep, emotional, medical based posting here. Just a few pictures and a few thoughts that present themselves when you have the chance to sit in the same room with the same people for weeks on end.

Thought/Observation: when you are getting on an elevator that you have selected to go down from the 2nd floor, is it necessary to look at the buttons when you step in? Seriously, where else could you possibly be going? Next time you ride an elevator, watch people…it’s almost a 100% thing. 2nd floor going down? Look at the buttons.

Thought/Observation: green means good and red means not good. At least this is the standard societal understanding of these colors. However, here at Children’s it’s somehow backwards. There are two different stickers you get when you come and visit depending on whether the patient is in isolation or not – you guessed it, one is red and one is green. Turns out that some bizarre thought pattern allowed for the green sticker to be assigned to those in isolation and the red sticker to those with little or no visitation restrictions. It’s backwards and even after three weeks + here, it still confuses me.

Next thought: It would be nice to own a company that makes casters. Seems like you could make a living just selling to hospitals.

Forced observation: it’s good to be reminded every once in a while (not by choice) that taking a cold shower can be shocking and refreshing at the same time….and that you need only a few short minutes to clean your body when faced with a time crunch.

Final observation: like looking at the clouds, you stare at something long enough and familiar images start to appear – like a city skyline on the floor.

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.

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.

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).