Well, I thought about it yesterday then again this morning, and I decided that at the very least a medical (of sorts) update was needed.

Things continue to move very slowly, so it isn’t going to sound a whole lot different from the last one. We have yet again changed some medicine that he is receiving, and we continue to chase the elusiveness that defines getting him settled and comfortable. The new medicine does make him a bit sleepier, but does still allow for much awake time and interactivity. One thing that has been happening for a few weeks – and hasn’t been discussed here – is that he has moments of dyspnea. They come and go as they please, and they are normally pretty short lived. They also seem to happen when he is either falling into a deeper sleep or when he is waking up from that same sleep, and are identified only by the alarm sounding on the monitor (this is also partially attributable to him being a full-term baby and therefore having a lower resting respiratory rate). This has been a continuing source of much attention, and all of us are keeping a close eye on it.

This morning marks the eight week point of our stay here. Don’t know why that seems more significant than say the six week mark, but it does. I often think back to the first night and day that Liam and I were here (Ahna still at the other hospital) and to the estimated stay in the NICU to be in the neighborhood of two weeks. Obviously, nobody knew at that moment what we know now – and even though it’s the same life, it feels like a completely different one. Eight weeks is a long time and all of that time suggests that what is sustained is also fleeting. We are thankful for everything and everyone that we have in our lives.

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…

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.

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