The Life of a Little Hippie

I suppose that this kinda ties in to the previous postings about how we are doing, but it feels like a little different take on the question. There is one statement that seems to pop up every once in a while when some folks around here check in with us: ‘it must be a crazy roller coaster ride.’ The answer? Well, sort of. I think that we have found what some roller coaster enthusiasts have been searching for for years…a ride that takes you up, puts you on high, and never lets you down.

Sure, we experience lots of emotions and we go back and forth fairly regularly between nearly all of them. But what’s different about this experience versus any other is that we don’t find ourselves involved with big swings up and down – it’s just always up. Whether it’s anger, hope, sadness, despair, encouragement, fear, understanding, happiness, or something else all together; it’s just all of the time all the way.

I know that it’s hip and cool to suggest that Valentine’s Day is a made up holiday for the card-making corporations (heck, I did it again this year which automatically means that it’s hip and cool). We all proclaim that we don’t need a specific day to express our feelings for each other, yet odds are that we come nowhere near expressing how we feel on a day-to-day basis…so one day out of the year specifically dedicated to the romantic, emotional, and complete relationship that you share with your loved one is alright with me – even if it’s a made up holiday for the card-making corporations.

This year we spent the holiday, you guessed it, at the hospital. We enjoyed some treats from our nurses, visits from our family, and a romantic dinner of leftover lunch cafeteria food. Despite the position that we find ourselves in, we find that our relationships with each other, family, and friends have been bolstered by this experience. The room was decorated by Nana, and if even for a day, it was nice to have some color in the room (the little bug in the photo was given to us by the hospital for Valentine’s Day).

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.