The Glass Is Full

Believe me, I wish more than anything that I could write about the happy fairy tale ending right now.  But alas, this is the nicu, so it will not be that simple.

As I write tonight from home, our beautiful son is sleeping peacefully in his pack-and-play, wearing his own clothes and enjoying a blanket far softer than hospital issue.  Sadly, Lucas had to leave his sister behind; Olivia will spend "3 to 5 days" more in the nicu because her eating skills have not quite qualified her for departure.

This should be a beautiful day.  We are trying so hard to look at the glass as half full.  Lucas is doing his part.  Though we know he will have some hiccups in the next couple days as he gets used to the quiet of home, he seems to be enjoying things so far.  He was also super cute in his car-seat on the way home.  He listened to the Nationals beat the Phillies and enjoyed it very much.

But alas, we would be dishonest if we did not admit that today was rather painful.  Unfortunately, we had really gotten our hopes up.  We enjoyed rooming in.  We enjoyed a day off.  We had a wonderful dinner and date.  This morning, we put on nice clothes and shaved.  We kind of expected today to be the day.  Sadly, we called on our way to the hospital and found out that Lucas would be coming home but Olivia would stay behind.  Basically, she has not quite figured out eating.  Taking all her feeds by mouth has proved too much of a chore.  Her weight is unchanged over the last four days, and she has been having several bradycardias during eating times.  All this means she is working too hard at eating, burning too many calories and sometimes getting too tired to successfully coordinate sucking, swallowing, and breathing.  All this means she is not quite ready.

Sadly still, we had some disagreements with the doctors over the best next course of action.  Olivia has had four attendings in the last five days--meaning in our eyes that no one has quite had the time with her to truly get to know and understand her situation--and the attending of the day voted to continue her on all p.o. feeds (meaning taking all herself by mouth as opposed to giving her a couple feeds a day by tube to help her build her strength).  Even more frustrating to me is that somehow we went from thinking all week that today could be the day to hearing that Olivia has at least 3 to 5 days to go.  I still don't understand how we went from today to 3 to 5 days.  Poor communication or planning, but expectations once again begot disappointment.

I must admit, I almost let it all out last night.  The last 76 days (and many, many more if you count this entire journey) have been exhausting.  On the precipice, I thought it was finally time.  But now, I recall what I told Olivia as she neared the end of her pda adventure.  I told her, Olivia, sometimes you work harder than you ever thought you could, then you work even harder than that, and then, when you think you've given all you have, life asks you to give a little more.  She was up to the task then.  She will be up to the task now.  And mom and dad will draw on her strength and be up to the task with her.

So, we will wait a few more days for the fairy tale.  Instead, life has once again poured us half a glass.  Like every day, we have a choice to view our glass however we wish.  Though earlier today we both wondered if we had the strength to do so, I know that we can take a deep breath, enjoy the grace and beauty of the entire glass, water and air, and embrace and be grateful for the gifts of another day.

Now, our beautiful son is no longer sleeping peacefully, so I am going to go enjoy giving him a bottle in his home and put him to sleep in his own bed.