Can you tell I've been avoiding posts? I don't really know what to say because there's really not too much going on with Chloe. Her NG tube is back in. She's taking about 85% of her feeds by mouth every day. She's finishing her feeds for the most part but every once in a while she'll get tired and only take part of her feed so they just NG the rest (put it down her feeding tube). Fortunately, she hasn't had any more big episodes like the one she did a few days ago. They still think that was just a result of too much excitement/stimulation that day. They're not doing anything to prevent them in the future, per se, we're just watching her and giving her more time to grow and get stronger.
We've had some controversy over Chloe's bottles. The feeding therapist introduced the Dr. Brown bottle and then I brought the Breastflow. After a few days on the Breastflow the feeding therapist was really impressed with the bottle and how good Chloe's suck/swallow/breathe pattern was when she fed from it. In fact, she thanked me (and my SIL, Carol) for introducing it to her and is going to integrate the Breastflow bottle into her program. But Chloe was on the Breastflow when she had her big episode so some people think it might be problematic for her. The nurses have been going back and forth with the bottles and I've called for updates after every single feeding the last few days; trying to find a pattern. I've finally decided that the bottle makes no difference. Good feedings and bad feedings happen with both. So last night I finally declared that we will stick with the Breastflow. Switching back and forth can't be good for her.
Back at the homefront Dave, Solana, and I are all on antibiotics for sinus/secondary bacterial upper respiratory infections. We all caught an upper respiratory viral infection a couple of weeks ago. Apparently, enough snot stuck around to turn into sinus infections :-( What a Christmas!
Here's me looking at the bright side:
-It's a good thing Chloe's not her while we're all sick!
-We should feel better in a day or so since we're on antibiotics.
-Chloe's coasting around the same place. She's not getting apparently better but she's NOT getting worse.
-My mom is in the air on her way here and that's ALWAYS a good thing! (She'll go snuggle Chloe tomorrow while I'm still keeping my distance.)
-Dave and I will probably go to the movies this week - something we wouldn't do if Chloe was already home.
Sigh.
Saturday, December 26, 2009
Friday, December 25, 2009
Wednesday, December 23, 2009
Tuesday, December 22, 2009
Bad Attitude has left the building
Ok. I'm over it. My self-pity fest actually didn't take too long to peeter out. I worked hard in Chloe's room today and that made me feel better. Plus, I got a swift kick in the pants to remind me of what's important. Chloe will come home soon enough and I'm pretty darn lucky for that.
Bad Attitude
This is for all of you who always compliment me on my upbeat and positive attitude.
I'm completely depressed today. Chloe was almost home. I could practically smell her in our house. "She could go home in two weeks" was three weeks ago. I was ok with that but this setback has just hit me hard. I feel like a little kid pouting over something they wanted but couldn't have. And with all the crap Chloe has been through and all her suffering I can't believe I'm so upset about not getting something I WANT. How selfish is that?!?
Anyway, don't bother telling me it's ok to feel this way and not to beat myself up. You all are so supportive and encouraging. I know you were about to hit 'Comment' and write that. I just needed to put it down and have one more good cry to get it out of my system. Solana is cleaning her room right now. I need to go play with her for a while. Hopefully now I can force myself out of this funk to do that well.
I'm completely depressed today. Chloe was almost home. I could practically smell her in our house. "She could go home in two weeks" was three weeks ago. I was ok with that but this setback has just hit me hard. I feel like a little kid pouting over something they wanted but couldn't have. And with all the crap Chloe has been through and all her suffering I can't believe I'm so upset about not getting something I WANT. How selfish is that?!?
Anyway, don't bother telling me it's ok to feel this way and not to beat myself up. You all are so supportive and encouraging. I know you were about to hit 'Comment' and write that. I just needed to put it down and have one more good cry to get it out of my system. Solana is cleaning her room right now. I need to go play with her for a while. Hopefully now I can force myself out of this funk to do that well.
Day 121 - So much for our big plans...
Our carseat is at the hospital. Chloe has had her two month vaccinations and Synagis (RSV preventative). Dave and I completed the CPR course and Chloe's NG tube came out. She also had her weekly eye exam yesterday and the doctor said the ROP is gone and she only needs exams every other week now. We're one foot out the door.
Then, after I fed her last night she desatted. Big Time. She was in the 50's and started turning blue. It was like she passed out and turned limp. Her heartrate started falling - never below 100 but it was almost there. We couldn't get her to snap out of it and the nurse had to use the oxygen mask to finally get her back up after about 2-3 minutes. I was worried that I had triggered a vagal response when I tried to burp her and talked to the nurse about positioning. But then she did it again after her next feeding, which was given by the nurses.
They did bloodwork and looked at her white/red blood cells. Those look normal so they don't think she's sick. Now they're looking at her bottle. I started using this great bottle called Breastflow. She's used it for a week with no problems so I doubt that's it but I think they're just trying to come up with any reason why she'd react this way after feedings. I hope they figure this out and it's something simple. I really don't want Chloe to have any more major problems. But it's kind of scary to imagine her doing this once she's home - which, I'm pretty sure won't happen this week.
Then, after I fed her last night she desatted. Big Time. She was in the 50's and started turning blue. It was like she passed out and turned limp. Her heartrate started falling - never below 100 but it was almost there. We couldn't get her to snap out of it and the nurse had to use the oxygen mask to finally get her back up after about 2-3 minutes. I was worried that I had triggered a vagal response when I tried to burp her and talked to the nurse about positioning. But then she did it again after her next feeding, which was given by the nurses.
They did bloodwork and looked at her white/red blood cells. Those look normal so they don't think she's sick. Now they're looking at her bottle. I started using this great bottle called Breastflow. She's used it for a week with no problems so I doubt that's it but I think they're just trying to come up with any reason why she'd react this way after feedings. I hope they figure this out and it's something simple. I really don't want Chloe to have any more major problems. But it's kind of scary to imagine her doing this once she's home - which, I'm pretty sure won't happen this week.
Sunday, December 20, 2009
Day 119 - Bottle
Chloe is:
119 days
17 weeks
almost 4 months
4lb 6oz
Working hard at the bottle. She's taken all of her feeds my mouth over the last two days with the exception of two. And those two were actually the fault of her nurse who put her bottle together incorrectly (ooooh, I was so mad!) yesterday. It's an annoying story that I don't want to write about but let's just say that that particular nurse has been added to the (very short) "you no longer have the privelege of caring for Chloe" list and we won't have to worry about her again.
Dave and I took the infant CPR course today. Chloe is finally substantial enough to get her two month vaccinations and may have actually gotten them already.
There's really not too much to report. We just need to see her take her feeds well for a few more days and she'll get the boot! Until then, Bottoms Up Chloe!
119 days
17 weeks
almost 4 months
4lb 6oz
Working hard at the bottle. She's taken all of her feeds my mouth over the last two days with the exception of two. And those two were actually the fault of her nurse who put her bottle together incorrectly (ooooh, I was so mad!) yesterday. It's an annoying story that I don't want to write about but let's just say that that particular nurse has been added to the (very short) "you no longer have the privelege of caring for Chloe" list and we won't have to worry about her again.
Dave and I took the infant CPR course today. Chloe is finally substantial enough to get her two month vaccinations and may have actually gotten them already.
There's really not too much to report. We just need to see her take her feeds well for a few more days and she'll get the boot! Until then, Bottoms Up Chloe!
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