Sunday, August 8, 2010


Well, last night was interesting. We were woken up by each kid, once. And not at the same time, of course.  

Cooper crawled out of his crib.  

I knew this was coming as I have caught him with one leg over the rail more than once.  He jumps up on the end and swings his leg over the front.  So, yesterday Tom lowered the mattress to the lowest point which we were hoping would buy us some more time.  That obviously didn't work.  

I really didn't want to have to move him into a bed yet.  Murphy went into a bed at 25 months, but he was such a calm little guy.  Cooper, not so much (22 months old now).  I'm going to have to padlock every drawer, door and toy box in his room.  And does this mean I no longer have my baby?  I can't believe he is almost two!  I just don't feel like I'm ready for him to be in a big boy bed.  But, I know, it's not about when I'm ready.  Darn it!

We fed the bed.  

Ah, it's been a wonderfully long time since this has happened.  Sometime during the night, Harlie's feeding tube became disconnected from her belly.  And the pump just kept pumping the food - right into her bed.  I don't know why this doesn't wake her.  I mean she was sleeping in a pool of formula!  EWWW!  Isn't that slightly uncomfortable?  

I thought later that I should have taken a picture so you could see just how incredibly messy this is.  But, if you close your eyes and picture pouring a can of brownish formula on top of a sleeping child, then there you go.  

Not only did she loose out on who knows how many calories, she had to be wiped off with washcloths (this is no job for just regular wipes) and completely changed.  So, she's woken up in the middle of the night to find herself on the floor, being manhandled and changed and washed (so Tom can change her bed).  Ah, just another loving moment between mother and daughter that will continue to foster the trust and love that I feel from her every day.  I'm not counting on getting an "I love you" from her anytime soon. 

One step forward, three steps back.  I suppose we'll get there eventually.

Murphy just woke up and then woke us up.  He's always the easiest kid.  

As far as how Harlie is doing...

She is smiling and laughing a lot more.  But still no signs of affection whatsoever.  No kisses, no hugs and certainly - "I love you's" in sign.  

Her oxygen saturation levels are still in the 70's.  Not ideal by far.  

Her secretions are out of control.  It has been years since we had to suction this much.  It wears on you.  You can't leave her for a second.  And she is constantly removing her HME, which is completely annoying.  And dangerous.  Because her secretions dry out and she gets plugs.  Luckily, she must have a decent air leak around the trach, because sometimes I don't see how in the world she's breathing through that thing! 

We started her oral feedings again.  Brandy started them last week - by doing one a day.    She got about three ounces total per feeding, including drinking formula and eating pureed fruits.  Today I will feed her three times (hopefully).  This morning she drank four and a half ounces of formula and had another two ounces in pureed fruits.   So I think it was a great feeding.  I'm hoping that getting back into her old routine will make her start to forget the past few weeks.  

All I know is that I'm tired of the way things have been going lately.  I'm over her being mad.  And treating me (and everyone else) but mostly me - like crap.  I'm putting my foot down this week and she better learn to get over it and move on.  And be happy for crying out loud.  And loving again.  Please be loving again. 

I know she will.  It just stinks waiting for it.  

This morning, as I was typing this, she went to the junk drawer in the kitchen.  Fished around for a minute and then brought me the screwdriver.  Hmm?  I asked her what she wanted me to do with it.  Then she turned around and walked back into the living room.  I went back to typing, then she brought me a toy, upside down, with the battery door facing me.  It needed new batteries.  She knew I needed the screwdriver to open the batter door.  She doesn't miss a beat, does she?

I can't help but wonder what she would be saying if she could talk.  How different things would be.  It's a good thing she's patient with us.  



Susan said...

Hugs. I can only imagine how nice it would be if she could express herself with words. I think it would make a difference if you could talk about what she's been through. Do you have the type of HME's that you can suction through? They are easier to keep clean which might bring her sats up a tiny bit. E-mail me if you need the product info. I hope you can get some sleep tonight.

Sue Mitchell said...

Wow, aren't you glad for only 3 children? What a night! Hope you get more sleep tonight (Maybe the kids are tired, too.) Harlie will come around, probably when you least expect it and then it will be even more precious. Good to hear from you - I was getting worried but hoping you were just busy. :)

Anonymous said...

I also was glad that things are going along as expected. Little ones don't forget very easily. Think that if you tell Murphy something that he will remember it what seems like forever. Give Harlie time see can't express exactly what she is feeling but you know that she loves you very much. You have a great day today.
Love Ron and Sue