As much as we are no longer dealing with some of the same challenges we were last year, I am convinced it has only made room for different ones.
This, for instance:
is our biggest problem now. How in the world is this going to work when he is crawling? He already almost pulls his equipment over. It'll be interesting, that's for sure.
Also napping is something that he doesn't really do. About every 4 hours he'll sleep really hard. For 15 minutes. You MIGHT get 20 out of him. What can you get done in 15 minutes? That's barely enough time to get a cup of coffee and put your legs up. Sure, there are plenty of chores that can be knocked out in 15 minutes or less, but what kind of fun is that?
Again, I'll choose to count my blessings. Which leads me to the second part of this post.... kind of.
I was reminiscing today (I guess 'reminiscing' can be used when you are talking about bad memories... there is probably a more accurate word. Not sure these are the kinds of things someone would say they were 'reminiscing' about. Either way.....) about two of the worst times we had with Theodore. I'm not sure I've ever shared them with you - in fact, until today I had pretty much forgotten them. Who knows what reminded me. But I'll share them now. Maybe it will help you fill in some gaps. Maybe if you're going through a rough time you'll know that you are not alone. Maybe it will help you feel closer to us/Rambo. Maybe it's just a finishing piece to the processing puzzle for me.
Leaving Rambo at the hospital was always hard. We had him two weeks before Christmas and wanted to be home to spend Christmas with our other kids. I could be mistaken but I think Christmas Eve was our first time home since his birth. Which, almost didn't happen because that day (it may have been the day before - time sort of ran together for most of it) was when he took his first sudden turn downhill. As a matter of fact, up until this point there was talk of sending him to a step down facility and straight home from there. I've shared this part with you about how he was in my arms and I was watching him fall apart right in front of me. Turning a yellowy-dusky color, becoming very limp, etc. All of which led to his first emergency intubation. The next part might leave you with many questions. Some of which I won't have the answers for; some of which are too hard to explain. But I will say that there is a fine line between needing to be intubated and not needing to be. And, for the first several intubations, it always appeared that Rambo didn't quite need as much help as a breathing tube provides. We not so quickly discovered that Theodore walked that line like a pro. I only wish we had learned sooner and maybe saved him from some of the trouble. Needless to say, we came home on Christmas Eve because it appeared he had turned the corner, was extubated, and had an excellent nurse. This didn't make coming home easy but it did make it doable. Fast forward to Christmas morning and about a half a dozen calls to the NICU to check in on him, and we are on our way to Christmas with the family. As we are driving we called to see how our little man was doing - expecting a status quo report. Instead, our nurse says that he has turned the corner again. He's breathing extremely fast and working hard so an intubation seems to be in the very near future.
We are on our way to family Christmas where everyone is going to say "Hey!" and "Glad you're here!" and "How's Theodore?" Where I'm going to feel bombarded by people and questions and pleasantries and all I want to do is sit in a corner and cry. And get back to my baby.
What do you mean he needs to be intubated? He was fine when we left.
Oh, and by the way, the doctor is going to call you to get your verbal permission to put in a PICC line so we can start antibiotics and steroids and all sorts of things.
My head is still spinning but we manage to make it through the greetings and make a one time report on Theodore's status. We even start to enjoy the present opening process; watching our kids with so much joy. My phone rings. It's the doctor updating me and getting my permission. Things are going in stride and I am proud of myself for being able to handle this. Then she suddenly has to go. She hangs up.
About thirty minutes later Ben's phone rings. Different doctor. The first doctor had to go because they needed to immediately intubate Rambo. It went from going-to-need-to-be-done to emergent in a matter of seconds. And I'm thinking, when I can think anything at all, "It's Christmas."
My 6 pound 6 ounce 10 day old baby was emergency intubated for the second time and I wasn't there.
That is enough to drive me crazy for a lifetime. I know I couldn't have done anything, but it doesn't matter. Nobody was there for him. Nobody that loved him anyway.
The past is the past. Had I been there for Rambo I would have missed my children's hugs, their happy spirit all through the day, the look on their faces each time they unwrapped a new present. The scales are weighted and they are even. Both would be just as sorely missed.
I think I'll save the other story for another day. Too much happiness in one post isn't good for ya. Am I right??? Besides, I need to untangle Theodore from his tubes for the millionth time. Bed time can't come soon enough!