Wednesday, June 24, 2009

Please Sir, I Want Off This Ride

Well, it has been a rough ride, and still it is going. :( I hate that. Most of the people who we started our NICU journey with are home now. A few who we knew that had preterms after us are prepping to go home (the last of whom will be home this Saturday). We, however, can't even get moved closer to home.

Many of the friends we made while at the NICU have gone home now. The last of them left yesterday. Most of them were born after Riley (both gestational and actual). And still we are looking at July or August to get him home. And, as they have already discussed him coming home on oxygen, that is likely going to be the case. I hate this. I really and truly hate this. It is beyond frustrating and I hate that I feel like some hormonally charged, angst ridden teenager. It has been 12 weeks. Our due date is Sunday. And still we do not have a clue when our son is coming home.

Riley's breathing issues are getting better, slowly...very slowly. He is now down to low-flow 24/7. But that doesn't mean sweet jack at the moment, since he is still down in Toronto in the Annex, and still requiring enough oxygen that they haven't even bothered to discuss discharging him with us.

He makes these baby steps, that most of the preemies made weeks before him, gestationally speaking, and even though I get very excited about it because he is doing things better, or without intervention, to say the least, it is still a baby step that should have been taken weeks ago. Seriously, can I even call him a preemie anymore? I mean, he is past being "full term". He is over 8.5 lbs.

And I hate having to explain to people that yes, I did have a baby, but no, he is not home. Yes, I know I was due this month. No, I did not go full term. No, it is not a freaking vacation having a full term child who is not able to be home with us, so please stop making it seem like a dream that I don't have to wake up to screaming and dirty diapers several times over the course of the night.

I don't know when he started smiling. When did he learn this one? (I hate that I cannot just appreciate the smile, as my first thought AFTER "OMG, look how cute he is" was "I bet one of the nurses here was the first to see this miracle".)

I'm frustrated. Seriously frustrated. And, as before, there is not a damn thing that I can do about it. I can suck it up, drive down to Toronto to spend a few hours with him (because with another child at home, I don't have the luxury of spending 24/7 with him down there), come back home, clean and cook and go through the motions of everyday, ordinary life, pump, and cry myself to sleep; only to repeat it all over again the next day. Just like I have the last 85 days.

A part of me cannot stand going down to that hospital anymore. There is nothing wrong with the hospital itself. Don't think that in the least. This is not like my experience with Women's where I despised the place because of the people I was dealing with and the "care" I received. I just can't stand going down there anymore and knowing that I have to leave that part of my heart there every night. And as much as I don't want to do this anymore, as much as I cannot stand even thinking of heading down there again, I know that I will, because I cannot stand to not go down to see him and be with him.

This is the blanket I mentioned in my previous post. I am about 1/2 way done now, but have become so lackadaisical in continuing it, because it seems to have become a bit symbolic in the downward spiral pattern. That is how this is starting to feel...and that is, sadly, the only thing that I can think of whenever I pick it up. (Yes, great big fie on the friend who pointed that one out to me.)

I won't apologize for the sullenness of this post. (You read it and no one forced you.) I got set off this morning when I received yet another "they are sending my son home on Saturday...I am no where near ready. Are you guys?" text message. Yes, I am freaking ready. I am more than ready...yes, we have all our furniture and all the accoutrements that babies come with and likely will never need.



Melissa @ Banana Migraine said...

I just want to come over there and give you this big huge hug. This all just f'ing sucks for you. No apologies necessary.

I will tell you that he will be coming home, and even though it doesn't seem like you - there will come a time when eventually you won't be making that dreaded drive to the hospital. You won't have to talk to the nurses. You won't want to kick them for getting to see those smiles and you will be the one to see the first steps.

Hang in there doll - you've been dealt a shitty hand for the moment, but you have a cute little man as a result and he is a fighter. I think that we need to help you think of some witty answers for those annoying questions.

Sending you much love. xoxo

Keltie said...

Anyone who tries to make you feel like you should apologize for a post like this deserves an ass-kicking.

I know anything comforting I might say would seem too easy, too condescending considering my situation. But I wish I could help you, help Riley, make something better.

I'm (pleasantly) shocked at how much he weighs, though! What a great weight for his age! He's nearly the same weight as Ess and he's more than a month younger. And that smile ... :)

Keltie said...

We've been reading in the news about the Swine Flu and the level 2 nursery at Mt. Sinai. I really hope that isn't affecting you and your visits! I know you said he was in the Annex? I don't know if that's attached to the actual lvl. 2 nursery or not.

Anyhow, you're all in our thoughts. Sending hugs and good vibes your way!

KnittyBitch said...

Yes, we were caught in that. Thankfully, no one was affected, as far as the babies are concerned. There was an exposure in both level II and NICU, as someone with H1N1 visited, and so there was a quarantine. They were given clearance this evening, though.