Tuesday, October 29, 2013

Clarity's 5 Month Update

Whoa, I'm how old?!

Little Miss Clarity is exactly 5 months old today and she had her big visit to get an echocardiogram and visit the pulmonary clinic at Children's Hospital. The pulmonary clinic is kind of the CDH clinic where they address all of the questions we and the pediatrician come up with that are rather unique to her condition so we've been counting down the days. Our last visit was almost exactly 2 months ago, when they said we could take her off her oxygen.

The great news is that her echo looked great with almost no indication of pulmonary hypertension, big news to confirm that she's doing great off of oxygen. To officially get off oxygen at night (although she doesn't wear it very often anyway, although she's hooked up to a pulse oximeter all night to I can administer it as needed) we're going to have an overnight room air test soon. The bring a special pulse ox that records the data all night.

They also got an xray and did a couple of blood labs just to get some more current results for her, partially to track progress and partially to have a healthy "before" snapshot in case she gets sick this winter and we need to compare her lung situation to what is normal for her. Knock on wood that we make it through winter without getting sick. She got approved through insurance for the insanely expensive RSV shots from November through March and will get her flu shots. The girls and I live in fairly quiet self-imposed exile at the house so, fingers crossed. The longer we go in her life before she gets a respiratory virus, it will be that much less likely to require hospitalization. We're praying for 2-3 winters ideally.

The big question we were bringing to her appointment was feeding. 
  • She miserably failed a gastric emptying test about a month ago and spits up A LOT. 
  • Her stomach is basically always full to capacity as we strive to get enough calories in her, even with her breastmilk fortified to 26 calories (from 20), which is really as dense as they like to get or it puts too much strain on her intestines. She has been gaining weight but only at 3-4 oz. a week and I couldn't foresee any way to get more food in her as she's been getting bigger. 
  • The gastric emptying test also showed that she's having severe reflux quite a ways up her esophagus, suggesting that her Nissen isn't really doing anything. This could be a good thing with her slow gastic emptying because she could have been in a lot more discomfort if her stomach isn't emptying into her intestines and a tight Nissen was preventing the excess food from coming up. That would have been a lot of pressure in that little tummy. 
  • Some of you also know that she apparently retched enough last week that she got a tear in her esophagus, known as a Mallory Weiss tear, resulting in a trip to urgent care because she was spitting up dried blood and had a whole bunch coming out of her g-tube as well. It hasn't happened again and they put her on Prevacid to hopefully protect her esophagus by making her stomach contents less acidic.
Before we look into a more invasive option, like replacing her g-tube with a gj-tube to deliver some food directly to her small intestines, we've decided to try continuous feeds. She had been getting 3oz. over the course of about 50 minutes (rate of 110ml/hr) every 3 hours. She's now getting 30ml/hr for 20 hours a day with 4 hours off. If that goes well for a couple days, we're going to up it to 35ml/hr; about 23.5oz/day. I need to talk to the feeding therapist to figure out an oral feeding practice schedule with no defined "mealtimes". It's a step farther away from eating like a "normal" baby but if we can keep her growing and not constantly spitting up it's a pretty great trade off.

Oh, the joys of CDH. It's a birth defect that just keeps on giving in so many varied ways. We're awfully lucky though. She's clearly smart as a whip, always looking alertly around her and soaking it all in. Her therapists are also thrilled that she's pretty much meeting her developmental milestones, especially if you consider her adjusted age (born 1 month prematurely). We are so, so thankful. Everything else along the way is small stuff.

Friday, October 4, 2013

Harvest is Done (followed by a bunch of pictures of the girls because they're awesome)

Today was the first light snow and tonight is the first forecast hard freeze so I rescued the last of the garden. It seems like a fitting time to post the final pantry pictures.
 We got a nice little onion harvest that I think will get us close to through spring. I let them cure on a grate in the garage for a couple of weeks before storing them in one of Grandma's delightful old egg baskets, which Mom was kind enough to loan.
 The pumpkins (6) and jumbo pink banana squash (3) - one of each has already been eaten. The squash pictured are each almost exactly Clarity's size right now, just over 10lbs. and about 21" long.
 I have mentioned before how much I adore our pantry, right? Here's a picture of the food wall, all ready for winter (or a zombie apocalypse). Admittedly, some of the stuff is carryover from last year (if it's a good peach year, you can lots of peaches) but it was significantly added to this season (as you can see from the previous post).
Mom was kind enough to give me some Concord grape juice from her vines and some rhubarb. Raspberries were on a really good sale at the grocery store. 5 pints of raspberry jam, 5 pints of grape jelly, and 3 pints of Rhubarb Vanilla with Earl Gray jam. (The last, once again from Food in Jars, and extremely good.)
We got 4 watermelons out of the garden and they are very good.

 Matching hats
 Willow "ironing" after she watched Mama doing it. She also loved having me iron her doll blanket and getting it back all snuggly warm.
 Tomato crushing and eating with some of the last harvest.
 Eating hazelnut butter and jelly at Children's after Clarity's gastric emptying test. (She failed; stuff for a different post once we decide what needs to be done.)
 Looking at a river in Silverthorne on the way back down from a weekend in Beaver Creek.

Sunday, September 15, 2013

Preserving Season 2013

I was surprised but not surprised when I noticed that it has been exactly a month since I posted an update. It has been that frenetic end of summer harvesting/preserving chaos. Even out of our relatively modest garden, we have gotten an amazing amount of bounty this year. Our tomato plants (7 Roma and 2 cherry) have produced well over 100lbs. by my best reckoning. The pepper plants (5 green bell, 1 ancho, and 1 jalapeno) were covered.

The preserving was made more extensive when a Facebook friend posted this link (Can-o-Rama 2013 from Northwest Edible) to my wall with a note about "don't you wish you had the time to do this". What she doesn't realize is that for people with my disorder (if only it had a name...) just make up the time and this post ended up having three dangerous links. One, I ended up using her "almost free tomato sauce idea" to make food out of the tomato skins that I've always wasted when I can diced tomatoes every year. Two, she linked to a dill pickle relish recipe only a day after I'd been wishing I knew of a reliable one. Three, and most deadly, she introduced me to a book - Food in Jars by Marisa McClellan. I went out and bought the book and immediately discovered it has 15 canning recipes that are on my must try list. This is not practical but again, my disorder compelled me, although physical amounts of time have somewhat tempered the damage. I went totally crazy, including a day of cleaning frozen berries and fruit out of the freezer to make things I wanted to try. So far cantaloupe vanilla jam (surprisingly delicious), strawberry vanilla jam, cranberry syrup, rhubarb syrup, ketchup, and roasted corn salsa have been attempted. They are all really really good. Everybody, please go out and get this book then make your own ketchup. Seriously, I don't think we can go back to store bought now. This book, and the blog it is a companion to, are truly delightful.

Canning yielded 
  • 18 qts. dill pickles
  • 14 qts. diced tomatoes (hopefully 7 more this week) 
  • 14 pts. roasted corn salsa
  • 6 pts. strawberry vanilla jam
  • 5 pts. ketchup
  • 6 half-pts. dill pickle relish
  • 1+ pt. cantaloupe vanilla jam
  • 1+ pt. cranberry syrup
  • about 1c. of rhubarb syrup

(All cucumbers, tomatoes, green and hot peppers, onions, and cantaloupe were from the garden. Everything else was from the freezer or purchased.)

Unpreserved, there are/were 6 pumpkins, 7 individual cantaloupe, 4 watermelon, 2 eggplants, and about 2lbs. of carrots. 

Frozen, there are two gallon bags of diced beets, one gallon of broccoli, one gallon of edamame beans, 24 oz. of tomato sauce, and marinara sauce (15 pints and 7 "pizza portions").

Quentin bought me these. I tried them on the strawberry vanilla jam and only had 2 of 5 seal. I'm going to have to do some reading up on tricks people have for being successful.

Cranberry syrup is yummy in sparkling water and in vodka drinks. I wish it was a little tarter though. Less sugar next time.

There was a bag of frozen bananas that had been there long enough that they had to be used. The day before my freezer clean out, I had dead bananas on the counter, found a muffin recipe, made it, loved it, then realized that I hadn't really followed it. I'd forgotten the egg, replaced the butter with applesauce, decreased the sugar, added more banana and decreased the flour. Heehee. I wrote down "my" recipe and made three dozen muffins with the freezer bananas, froze 2 dozen and we ate 1 dozen fresh.

"My" recipe, which yields about 18 muffins, is below, bake at 350 for 18-22ish minutes.
4 very ripe mashed bananas
1/3 c applesauce
1/4 c brown sugar
1/4 c white sugar
1/2 t salt
1 t baking powder
1 t baking soda
1 1/2 c flour

Willow helped all day one day, building long trains and tall towers of blocks and rearranging pumpkins. For some reason she believed that a pumpkin needed to sit squarely in the middle of each doorway. Wish I knew what goes through her head.

Thursday, August 15, 2013

Garden on August 14

The sumac/grass forest at the right makes it hard to differentiate the end of the garden. Unfortunately, that's my dream project this week.

Wednesday's harvest - cherry and Roma tomatoes, cucumbers, green peppers and two anchos.
I used the anchos (plus one picked previously) for a first attempt at chile rellenos using this recipe.
They were good although anchos have a bit of kick. I think I'll search harder for anaheims next year and not just trust a tag that says they're good for rellenos. I've still got about 6 anchos on the plant so I'll get at least one more practice session this season.

First eggplant, although the plants are large, healthy and covered in blossoms

I've never gotten broccoli to produce more than a sprig before. I'm not sure when to harvest.

An online article suggested that ripe jalapenos will have corking, which sounds like stretchmark-like blemishes. We'll see. I've never grown them before either.

  About 4 or 5 softball sized watermelons are hiding among the vines

Two cantaloupe like melons, from an Adaptive Seed Company package entitled "Melons", specially chosen for cool climates

We have about 4 pumpkins.

There are 2 or 3 banana pink jumbo squash.

I had to include a picture of Monday's labor - 4 more quarts of pickles and 3 pints of marinara

Willow keeping baby's seat warm.

Clarity "eating" her breakfast

Sunday, August 11, 2013

Sunday's Activity

Tomato and cucumber production continues to ramp up. I think I may have enough tomatoes to do a small batch of marinara for the freezer tomorrow. There are still a remarkable number of green ones. I think we also will have enough cucumbers (with the 4 or 5 that I'm leaving on the vine overnight to get that much bigger) to do another four jar batch of pickles.

The beets and carrots look great although I didn't plant tons of them. I'm trying to decide if I want to try root cellaring them (which I haven't had much success with previously). The edamame is covered in immature pods. Every few days I'm still getting another half dozen pods of peas, which I eat while still in the garden. The melons and squash have now spread across another row of the garden. It's seriously like some horror movie.
With Willow on my back, I hacked out a couple of 4-5' high elm "bushes" that sprang up over the summer since we got the tree taken out last fall. This morning the patch between the green lawn chair and the wheelbarrow was completely taken up by the new growth. The sumacs on the right in the front of the background (work that one out) are also new growth in the last few months and will hopefully get attacked this week.

Even on my back, Willow helps. She pulls leaves of branches she can reach as I bend over or I hand her a twig and when we carry loads over to the big debris pile she tosses her contribution on. She also regularly takes turns with me on who's wearing the sunhat at the moment. It made my work this morning much more enjoyable. It's probably also a lot better exercise to do yard work with a toddler on your back. Once again, yay for the Ergo Performance baby carrier. It's so well designed that she feels like almost no weight.

Wednesday, August 7, 2013

Odds and Ends

Yep, thanks to the fact mom comes down each day, I had time to make 4 quarts of pickles with cucumbers from the garden today. There should be enough more ready in a couple of days to make another few jars. We absolutely loved the pickles from the recipe I used last time so we're having them again. I can't believe that was four years ago. This time I think we'll end up with fewer jars and more people to share them with so maybe I can start making pickles yearly. I really like doing it. It's so easy and assembling the jars always feels kind of artistic. One of the many benefits of now living close to family is being able to can as much as I want and know I can probably fob the results off on people as gifts, especially since I despise feeding the consumerism that runs rampant around the holidays.

I'm feeling very foolish that I didn't think to plant dill. Next year, next year...

So, having a toddler is awesome. Everybody must get tired of hearing that, but it is. I love her earnest concentration and the way her diapered butt wiggles as she purposefully dashes toward her next job. She sets and clears the table. She shells peas and shucks corn. She puts dirty clothes in the laundry basket and helps "fold" clean clothes (also known as piling them in a heap, topped off by an emphatic pat).  Clarity has diapers and pacifiers fetched for her and gets copious big sister kisses, hugs and pats. She intensely watches and attempts to learn how to do every job and feeling like she's making meaningful contributions is the highlight of her day.

Her play is just as serious. For the last couple of days, she will spend a solid half hour at a time silently absorbed in scribbling with crayons on paper. She sits with her legs straight out in front of her with the phone book on her lap and "reads" to herself until I come to check on her because it's gotten so quiet. Today, she finally started being able to string her beads onto their lace with no help but until now she has spent the last week transferring them from cup to bag to box to couch cushion to cup to...

The best part is the way she will just look up at you in the middle of a task with a huge grin and laughing eyes. "Isn't this the greatest thing ever?"

Once more, toddlers are so incredibly cool.

This weekend was Quentin's grandma's 90th birthday and was the first time all the cousins were together. Q's got pictures of the rest of the family to post. I just took pictures of the kiddos. Cousin Cooper is only 7 weeks older than Clarity but she's so tiny compared to him!

And, finally, Ms. C just keeps clicking along. She only gained 2 oz. in the last week instead of the expected 8-16 oz. so we'll have to talk about that with the doctor on Friday. I'm guessing we'll probably put her on to 24 cal. milk (currently, it's supplemented up to 22 cal/oz) and maybe look at increasing the volume a little through the use of a couple of larger continuous night time feeds. She's doing wonderfully on her oxygen though and gets occupational therapy twice a week. We're working really hard on feeding and I feel like we're slowly gaining a little ground.

Sunday, August 4, 2013

This week's garden...

Thanks to Mom and frequent afternoon thunderstorms the garden survives. In fact, it's sort of thriving. I think Colorado is trying to show me what it can do on the horticultural front since I've been rather skeptical after years in Oregon.
First sunflower I got to blossom. (In Eugene, slugs always seemed to chew the buds off before they flowered)

Tomatoes going crazy in the huge cages my Grandfather made Grandma about 50 years ago.
We have funny heirlooms around here.
By the way, I started these guys from seed.

Broccoli and eggplant starts are still trying to decide whether to produce.

The surviving two artichoke plants from the dozen seeds I sprouted in February.
Not a rousing success, which somehow makes me more determined.

Funny story about the melon/squash/cucumber row. I got the seedlings all mixed up after starting them from seed inside. It's kind of fun seeing what starts fruiting since I can't recognize them from the leaves. I'm pretty sure this is a watermelon pumpkin.

There's a bee nestled deep into this mystery blossom.

I'm not sure they know what each of them are anymore. It's a little out of control. 

Saturday morning's harvest - a few Roma and cherry tomatoes, 5 cucumbers, a green pepper, and an ancho pepper.