Blogging - Powerful Stuff

It's interesting - this whole blogging thing. Sometimes I feel like I'm writing a simple log of Chloe's medical history. Sometimes I'm venting. Sometimes I'm figuring things out. Sometimes I'm reporting great news to our cheerleaders! Sometimes I'm begging for prayers (though not so often anymore - thank God!) And though I forget sometimes, I try and remember to share Chloe's beautiful personality.

And then there are the reader comments. Most of the time I'm reminded of all the amazing people who have never met Chloe yet love and pray for her. I hear from Moms who remember their own past experiences through my story and find comfort in knowing that they've been there.

Writing has never been my "thing." I'm more of a numbers person. One of my English teachers, I think it was maybe Mrs. Dozier my sophomore year in HS, always said to "remember your audience." Sorry Mrs. Dozier, I forgot your cardinal rule.

What I seem to have forgotten is that there are people out there who are emotionally invested here. And it makes perfect sense. If you pray for someone for four and a half months, feel joy with then, and cry for them, of course you internalize some of that. This is not the journal that I keep at the side of my bed (Duh!) I think I need to be more careful with my words. Lately, it seems as though I often open up the netbook to blog whenever I feel cranky and frustrated and I use the blog to get these feelings off my chest. Then I read my words, gain perspective, and feel much better afterwards. (The simple act of writing and reading your own words is really quite eye opening and clarifying.) Unfortunately, I don't usually go back and add postscripts to my blog.

The truth is that yes, this is all quite difficult and frustrating. But that is not the umbrella emotion under which I dwell. I have three beautiful daughters who are unique and amazing in their own ways and who remind me of how blessed I am every single day. I have a husband who loves us, is super overprotective, takes care of us, tells corney jokes, and is also amazing. Chloe is our little miracle and we're lucky to have her.

I guess what I'm trying to say is that: -I thank you sincerely and wholeheartedly for your encouragement and kind words and ask you to keep them coming! - I love that it's important to you that Chloe comes home safe and sound. -I will continue to use the blog as a sort of self-therapy AND keep in mind that I have an audience.

Love to you all!

Day 138 - ...

Are you getting tired of reading this blog? Because, I'll tell you what, I'm getting tired of writing it...

Chloe's back on oxygen. She lasted a good day but then it just got to be too much for her.

She was having some trouble with feedings last night and this morning - they did another kind of upper GI on her today because they suspected she was aspirating (breathing in) her milk during feeds. They determined that the milk's hitting the back of her nose. She's now getting a thickener in her milk that she'll probably come home on. She probably also has some reflux but they're hesitant to put her on medication for it. I think the doctors want to avoid more medication, if possible. They just want to watch and assess for now.

Solana and I made it in to the hospital this morning before the snow really piled up but I'm stuck at home tonight. It probably wouldn't be sooo bad if Colt McCoy hadn't gotten injured. :-(

Day 137 - Restart Feeds / DC Oxygen

The Upper GI report says there's no obstruction. They started feeding Chloe again today. She's getting 15cc's every 3 hours. This is 1/3 of what she was getting before she got sick. The latest theory, by the way, is that a virus got her and ran its course. I'm actually hoping that's correct because that would mean she's fine now. All she has to do is figure out this eating thing again. And as ravenous as she was last night, she should do well. The princess was held almost all night and our most favorite nurse, Gena, even held her royal highness for almost two hours after her 12hr shift ended (while she charted). While receiving all this indvidual attention the nurses noticed that Chloe's canula was often out of her nose and that she didn't seem to need it. So they spoke to the NP who agreed to try her without it. It's now 11pm and she's been without oxygen since 9am. Pretty cool! Of course, she may get it back whe she's up to full feeds again (it's harder to breathe when you have full belly - just think about how you feel after Thanksgiving). So we seem to be on the right track again. Praying that we can take some quick steps forward, toward, and out the door!

Day 136 - Upper GI - Updated

It started snowing pretty heavily yesterday afternoon so I didn't make it to the hospital for my evening visit. I never really minded the snow until now. The worst the snow ever did to me was to turn my one hour commute in Denver into a 3.5 hour commute on occassion. That wasn't so bad. If I was carpooling it just meant more time to hang out with my friend and something to brag/complain about at work. Keeping me from Chloe, on the other hand. That's bad.

The first picture is our Front Yard/Street and the next two are our Backyard. Solana is aching to get out there and play in it. With a temperature that currently feels like 6 degrees Farenheit, I'm procrastinating.

3:00am - Chloe's primary nurse wasn't happy with the swelling around her IV so she put in a new one. The last nurse sidestepped my question about the new IV placement and didn't tell me that she had at least one failed attempt in Chloe's hand before putting it in her foot (I saw the mark when I visited Chloe yesterday at noon). Chloe's primary nurse, who I LOVE, made sure to tell me that she got the new one in on the first try.

7:30am - Still no news on the schedule for her Upper GI. It's super snowy out there! Dave's colleage called from the highway and said it's a parking lot out there!

10:45am - Chloe just went down for her Upper GI. They're feeding the barium to her from a bottle. The nurse said the flavor's ok and Chloe should be thrilled to eat something again. I've never tasted barium. I hope she's right. They'll do a few x-rays down there (in radiology) and then bring her back up to the NICU for hourly x-rays. It could take anywhere between 12 and 24 hours for the barium to make its way through Chloe's intestines.

The NICU receptionist said that the roads aren't so bad. I'll probably head out there with Solana after lunch.

1:00pm Chloe is back up in the NICU and did well drinking the barium. They said that they noticed she swallowed a lot of air with the breastflow bottle. How easy of a fix would it be if that were the problem? Of course, the breastflow bottle was specifically designed so that babies do not swallow air. I asked for clarification as to how they made that determination. If it's true I'm more than happy to throw out the bottles. Solana and I will head over in a couple of hours.

4:30pm Solana and I made it to the hospital. She loves being a big sister so much. Chloe kept smiling whenever Solana stroked her forehead and sang Twinkle Twinkle Little Star to her. We're going to have so much fun when she comes home :-) The Upper GI test is going well. The barium is moving through at a good pace. We have received a preliminary report from the radiologists and it looks good. There doesn't seem to be any blockage. We have to wait until tomorrow for the final x-rays and report.

Day 135 - Barium..Enema - Updated

6:30am I missed my 3am pumping alarm. Ouch! Called the hospital and Chloe's IV finally gave out. Thankful it lasted as long as it did but still sad thinking of her getting another one. (Seems trivial since she's already had like 30 IV pokes but I probably won't ever get used to it...) We're still on for 9:30 upper GI barium.

9:15am Dave stopped by the hospital on his way to work (I can't get there until I drop Solana off at school at noon). Chloe was already downstairs in radiology. Instead of doing an Upper GI Barium like they said they were doing a barium Enema. He said he'll call me when he gets more information. Prayers, please.

12:30pm I finally made it to the hospital after dropping off Solana at school. The enema went well and her lower GI looks good. They'll do the upper GI barium tomorrow. Results will take longer. We're hoping the test goes well tomorrow so she can maybe start eating again on Wednesday.

The little princess has been upgraded to an open crib with bouncy seat option. From this new throne she welcomed her royal audience (rounds) today.

"Gather around. Gather around. State your business, please."

Day 134 - Padre Pio do your thing!

Chloe had a couple of nice visits from Grammy and Mommy today. She cozied up to Grammy and slept for an hour and a half. After that I took my mom to the airport :-( since she had to go back home. I then returned to the hospital and spent a wonderful hour and a half with a fully awake and cute-tastic alert Chloe.

So I submit to you these Chloe-rific photos (and no complaining about the poor quality - you should be used to my lack of photography skills by now ;-) :

I took these three pictures today during Chloe's marathon 1.5hour alert period. Unfortunately, I only had my phone handy so they're pretty dark. Fortunately, Chloe's cuteness shines though!
































Here's Chloe giggling at Grammy jokes. Chloe smiles ALL the time! I just never have a camera in hand when she does it.















My mom enjoying some quality time with her smallest grandchild right before her return to Houston.
















I love this picture that I took yesterday. Dave doesn't spend nearly as much time as me at the hospital so he's not quite as used to Chloe's magic. I walked out of the lactation room to find him in the position - obviously overcome by Chloe's calming effect.


















The last thing I did before leaving Chloe tonight was to bless her with some sacred oil that has touched the glove of Padre Pio. Our new friends/neighbors lent the oil to us and tell us that a family member's cancer disappeared after a blessing with this oil. We Catholics are a superstitious bunch - me included. I will take any special blessings sent our way! Chloe's Upper GI barium is scheduled for tomorrow morning at 9:30amET. Come on Padre Pio! Do your thing!

Day 133 - Bowel Rest

Chloe is on her fourth day of bowel rest (or "starvation," as I like to call it). My poor baby! She's soooo huuuungy! They actually have her on TPN IV nutrition so she's not actally "starving" but her little belly is definitely grumbly.

They still haven't figured out exactly why her bowels became dilated and she stopped digesting her feeds. But they have ruled out infection. Her antibiotics were discontinued today since none of the cultures yielded any growth. It seems like the possibilities are now either 1. it was nothing and they'll restart feeds again after seven days of starvation - I mean bowel rest, or 2. she has a partial or complete blockage in her intestines. They'll do another barium study on Monday or Tuesday. Hopefully, the barium study will show us whether or not she has a blockage.

I keep telling everyone that I think she just had trouble with the similac forula they were giving her. She got really gassy and her stools started coming at inconsistent intervals as soon as they put her on it. Nobody is taking me seriously, though, so I'm sure my theory has no basis. If her barium study shows a blockage then that's obviously the problem. If not, I'll make sure we're really careful when we start her on feedings again. I sure wish she could be on just breast milk!