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.

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.

Laim’s ability to hold your hand – as much as we want it – is extremely limited. Every once in a while, and with no consistency or duration, he will grip your fingers. He has essentially no control over his arms or hands, although he is able to move his arms around a little bit – but something like a blanket over him effectively removes that ability. His arms, like the rest of his body, are rather limp and without muscle tone. When you pick him up, he sort of flops all over the place and his arms and legs just go where gravity tells them to.

He does have big hands, and that doesn’t go unnoticed by everyone around here. I think it’s been mentioned before, but a lot of the kids that end up here in the NICU are premature, so when a full term baby shows up, it looks particularly big. We have tried to put Liam’s fingers in his mouth to see if that would help sooth him, but without any control over his arms they don’t stay there for too long – like no more than a few seconds. The other daily challenge (which is actually pretty similar to every other baby) is getting clothes on over his fingers and arms. Since there isn’t any real rigidity to his arms, it’s slightly harder than just shoving one through the sleeve of his onesie. And to top that, his left arm never goes in a sleeve due to the IV access that is in it (for the record, we did do it twice – for photos. We had to disconnect the medication tubing and run it all through the clothes once they were on, then do the same thing to change the clothes…just too much to do every time).

There are those moments, where through a combination of what Liam has done and what we have done, where you can end up holding hands for a while when he is sleeping. There really are few sensations that are better than that….

Now this is an interesting object. Not so much because of what it does – that part is simple, rather because of how much we rely on it not only to tell us what is going on, but for comfort as well. For those of you that might have missed the past two decades of overdone hospital based television dramas (or are just simply newer to the world), the monitor tells us what Liam’s heartrate is (green), what is oxygen saturation levels are (blue), and what his respiratory rate is (yellow). It also tells us – quite alarmingly – when they are not so good. The alarms on the monitor are also connected directly to the phone that our nurse carries around, so when they sound, so does her phone. That way, no matter where she might be – like tending to another patient – she instantly knows what is happening in our room. I would place money that if you hooked either Ahna or me up to a monitor ourselves, you would find an instant correlation between Liam’s alarm sounding and our pulse and breathing increasing.

The monitor is hooked to Liam through four different leads – but the discussion about those is being reserved for another short posting later. Turns out that we probably stare at the monitor the most, outside of Liam or each other. We check it obsessively and worry about it all the time. There is a saying in medicine that you should treat the patient, not the monitor – meaning that sometimes the monitor is misleading you. For example, the monitor may say that Liam’s pulse is low, but he looks fine and is breathing adequately (this happens sometimes, and is often attributed to him being a full-term baby). But even knowing that doesn’t ease the nerves when the alarm sounds about something. Things are just too fragile to easily dismiss anything that is happening – even if it proves to be only a small speed bump.

When we take him off of the monitor (baths, change of clothes, walks, etc), it’s like removing a security blanket for Ahna and I. Most of the time it isn’t a worry, but the moment that Liam starts to breath funky we long for the knowledge of what is happening. It’s a little strange to become so dependent on something like this, but we have found that we literally rest easier when we know that his vital signs are stable – and not just think that they are.

Some of these posts attempting to explain some things are going to be a little difficult, as we don’t know definitively what exactly Liam is able to do – all that we have to go on is what we think based on observation.

Two of the questions about Liam that come up most frequently are about his ability to see or hear. The short answer to both is that we just don’t know for sure. However, there are some indications that he has some sort of ability to see. For example, when you shine a light in his face (either intentionally via flashlight, or semi-intentionally via camera) he looks away or closes his eyes. Part of the time when a light is put in his eyes will they dilate equally, and part of the time they won’t. He will momentarily look directly at you, but rarely will he track anything. His eyes have been the only indication since he was born (outside of the EEG) of possible seizure activity, and that is still present today. There are even times when his eyes will pulsate up and down in opposite directions of each other – but we are completely unsure if that is symbolic of anything other than the severity of the brain injury.

They say that the eyes are the window to the soul, and with Liam they are about the only window to anything that we have. We cherish when he is awake and absolutely love the connections that are made by looking into each other. It’s hard to know how far those connections go, but there is no doubt that they exist on some level.

The question of hearing is a lot more abstract and even harder to know than is sight. At least with vision, there is a positive identifier, but sound is different. We haven’t been able to tell for sure if there is any ability to hear at all. There are some causal relationships that are present, like a sometimes increased heartbeat when music is played, or a sometimes response to a snapping of fingers just out of eye sight – but those could both be because of vibrations as easily as they could be because of actual ability to hear. Physically, the outside ear looks as cute as any baby’s ear would look, but it often suffers a little bit of flattening due to Liam’s need to primarily lay on one side or the other. It even occasionally gets folded over, but it always rebounds nicely.