Day 129 - Problem

I'm not sure how well you can see this picture. It was kind of dark and I didn't want to disturb Chloe with a flash. What do you see wrong with this picture?

















Well, considering the poor quality of the picture I'll go ahead and help you. 1. Chloe is naked and in a heated bed. 2. She has a collection bottle at the end of her NG tube. 3. She has an IV in her right arm.


Long story short: Chloe was exceptionally gassy last night during our visit. Even so, she did finish all of her nighttime feeds. This morning she was really irritable, though, and only took 1/2 of her 9am feed. I was there before her noon feed. Her nurse decided to pull back on her NG tube and, to our dismay, pulled back her ENTIRE feed from three hours earlier. They did an xray and her bowels are dilated and full of gas.


We don't know what's going on with her. There are many possible reasons for this. They're first going to try and rule out an infection. They took cultures and started her on antibiotics. We'll get the final results on those after 72 hours. They're also considering a possible blockage in her intestines. I thought we were done with that but, apparently, that old rupture could still rear its ugly head in the form of a blockage even now. Ideally, her bowels will just go back to normal overnight and she'll be fine in the morning. We have no idea what's in store.


On my way home from the hospital today I was happily in attendance at my pity party and crying away in the van (my favorite place to cry). I mentally shook my finger at Leila and told her, "You're sup-POSed to be looking out for your sister," in my best Mommy voice. No sooner did I think that than it occured to me (she talks back to me quicker than Solana) that Leila was probably whispering in Chloe's ear all along to not finish her bottles so she could stay in the hospital longer and be in the best place when this happened. Whoops. I thought, "Sorry, Mija. You did a good job taking care of your sister. Love you :-)"

Day 127 - Trying some changes

Chloe has been on a few different medications for a while now. In an attempt to get her off of oxygen, she's been getting a couple of different diuretics. And because she's on diuretics she's also getting sodium and potassium. These are pretty foul tasting medicines. While some babies tolerate them, Chloe finds them utterly disgusting and protests taking them by mouth. This becomes an issue when they try to remove her NG tube. If they try to sneak it in by squirting it alongside her bottle she gags, holds her breath, and desats. If the mix it in with her milk she refuses her bottle.

Today they decided that, since the diuretics aren't working to get her off of oxygen anyway, they'll stop them. And since she'll no longer be taking diuretics she'll no longer pee out all of her electrolytes they can also stop her sodium and potassium. The hope is that Chloe will be more successful in taking her feeds by mouth if she no longer has to take these unpalatable medicines with them. And also that the discontinuation of these medicines has no ill effect on her lung function.

Please pray with us for Chloe. It's almost taken her a month to become successful at eating. And while we're being ever-so-patient in letting her figure this out it sure would be nice if this new change worked. Our antibiotics seem to have worked. My mom is in town until January 3rd. We sure would love to have Chloe home soon... :-D

Day 125 - Coasting

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.

Day 124 - Merry Christmas

Merry Christmas!

Love, Chloe

Day 122 - Happy 4 Month Birthday, Chloe!

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.