Saturday, February 21, 2015

Heart to heart

I'm sitting at the table, alternating between typing a few words while sneaking peeks at the snow, taking a sip of hot coffee, and hugging myself to keep warm. Oh, hello, winter! You've certainly made your presence known this week!

This is a hard season for mamas. A season where routine gets to be a little too ... well, routine. And the blooming hyacinth by my kitchen sink both blesses and teases me with it's spring-like perfume.

Thanks to these single digit temperatures, the snow from earlier this week has stuck around for longer than usual. And word on the street is we can expect some more tonight. My kids have already declared they're going to wear their jammies "all day LONG," and I'm certainly not going to argue with that!

Her baby was SO GOOD at the grocery store!

Jon and I heard her yelling and found her stuck like this, so naturally, I took a picture!
We just finished up another two weeks of night-shifts (thus why it's taken me four days just to write those first three paragraphs.) And now we're entering into a 4 12-hour-days week, which is slightly better since the stray hours we actually get to see daddy are during normal wake-time hours. I thought we were getting into the groove (finally) with this new work schedule but dog-ownership has set me back a bit.

Don't tell Daddy I let him on the couch ...
 I'm just trying to think positive thoughts. Like, when it's 6:30am and I'm standing in 6 inches of snow, just waiting to bag up a steaming pile of fresh dog crap--I say to myself, "Hey, girl! When was the last time you watched the sun rise from your backyard in February? High-five!"

Our backyard may not be pretty, but all those tracks in the snow are beautiful in their own way.
I will say, one of the benefits of dog-ownership is that forced time outdoors. It may have only been 19 degrees, but Jäger and I and the four kids were all out in the snow the other day having a grand time! Well, it was grand, until some random neighborhood dog decided to just waltz into my yard. In his excitement, Jäger knocked Joci over into the snow. In her cold-weather garb, she wasn't able to stand. And in defense of our family pet, I wasn't able to release my arms from his neck. Just picture a barking dog, a screaming baby, and then throw in a 3 year old (also wearing several layers of winter clothing) that SUDDENLY has to go potty. The boys were able to chase the stray out of our yard, I was able to relax my hold on Jäger long enough to pick up Joci, but poor Lia was not able to take off her 50 layers in enough time. Oopsie.

We pretty much take baths every day right now. Just for something to do.

And since that would be a lot of bubble bath, I've started making my own with scent/dye free soap + coconut oil + honey + vanilla + an egg white. It's magical!
But anyway, back to the big event of the season--Valentine's Day! Jon had off that day, although he was sleeping the better part of it. The kids were high-on-life (or candy, more likely) from their school parties the day before. I completely forgot to take a picture of the boys' Valentines this year, but we just used the tiny containers of Play-Doh that were left over from our trick-or-treat stock and handed out these.) All the kids enjoyed rummaging through the boys' stash and I'm reminded, again, just how far a little love note can go--especially if it includes a picture of a Teenage Mutant Ninja Turtle.

My V-Day swag. Julia claimed my balloon for herself but said she "would share it" with  me.

I'm not a huge "heart" person but it is an appropriate time of year to wear my Grandma's "floating heart" that she had made out of her wedding ring.

I was getting dolled up for my social dinner ... she was getting into my mascara.
Last year, Jon made me a special Valentines meal. It was such a big hit, I recommended we make it a yearly tradition. He suggested we alternate making the meal each year. Um ... no comment. 

The kids had mac 'n cheese for V-day dinner.

So he planned out the meal and went shopping that afternoon. It was an all day event, beginning with making cupcakes and frosting from scratch! Meanwhile, I was kicked out of the kitchen for the rest of the day!

We put the kids to bed early and had a quiet dinner by candlelight all to ourselves while the snow fell outside. Perfection! Not to mention, the food was AMAZING! Seriously, one of the best meals I've ever had. My guy definitely spoiled me this year, not sure how he'll be able to improve on that next year!

Jäger helped with dinner too. He also helped himself to the stuffed potatoes that were sitting on the counter.

And just in case you want to share this post with your own husband, I'll include the menu and links to the recipes below:

Filet Mignon with Mushroom Wine Sauce

Chorizo Potato Bites

Sweetheart Fruit Salad

Red Velvet Cupcakes with Cream Cheese Frosting

We decide to spoil his teacher with some flowers. Little did I know she took the day of. No idea what happened to the flowers!

Chocolate heart-shaped pancakes with strawberry greek yogurt and strawberries for V-Day breakfast!

She loved her heart pigtails so much she wanted to keep them in for days and days. Let's just say they don't look anything like hearts after you've slept on them.
Valentines Day wasn't the only event on the calendar this month. This year, February 7 -14 was Congential Heart Defect Awareness Week. You may remember that last year, at this time, we found out our little Joci had a hole in her heart (atrial septal defect.) Since she hasn't been showing any symptoms, we've just been waiting for her to grow bigger and stronger before taking the next step.

In the meantime, we've been visiting the cardiologist every 6 months for EKGs and sonograms just to keep an eye on things. We had one of those appointments recently and although the hole in her heart appeared unchanged, the cardiologist was concerned that Joci's growth has steadily declined. At her 15 month appointment, she had actually dropped down to the 1st percentile for weight (this was also after battling an ear infection). I was super-pleased to see she had climbed to the 10th percentile this month, but she still hasn't grown like the doctors had wished.

When it comes to toddlers, it's hard to know if slow growth is related to eating habits (Jocelyn is, by far, my worst eating child) or if it could be attributed to something else. In this case, they would be concerned that he heart is working so hard to pump extra blood throughout her body, that she's burning more calories than she can keep up with. With that said, the cardiologist was going to discuss Joci's case with her team at Johns Hopkins later that week and get back to us with a decision.

When she called back on Friday, we found out that their vote was unanimous--it was time to move forward with repairing Joci's ASD. We also found out that our hopes for a catheter procedure (in which they insert a clamp through a vein in her thigh) would not be possible. The catheter surgeon felt that her hole was just too large (compared to her tiny heart) for that kind of clamp. This means that Joci will be getting regular open heart surgery.

We'll have her pre-op appointment and meet with the surgeon later in March, which is when we'll get a better idea of what is going to happen. But I found this Instagram record of one boy's ASD repair online. If you're interested in all those details (and don't mind images of surgery), this is absolutely fascinating! This patient, Aiden, is 16 months during his surgery. Joci will be 19 months when her's takes place.

It's also all very scary when you really think about all that is involved in the surgery. I've been told that, while Joci will be away from us for around 8 hours, the time she is on the bypass machine and they are actually repairing the hole could be less than an hour. Although I haven't met him yet, I like what I've heard about her surgeon so far and we're just so grateful that we can get this done at one of the best hospitals in the nation. In fact, one of my fellow MOPS mamas works in the pediatric ICU where Joci will be staying. So I already feel that God is going ahead to prepare the way for us!

Oddly enough, the part that concerns me the most is having her "go under." I'm not sure how it will all play out, but I do know that Joci's screams when I leave her with her daddy just to run to the grocery store. I can't imagine how she will react in this situation. I also hate to leave her, especially if she's upset. It's just very scary for me to think about being away from my baby girl when her life is dependent upon a machine.

Sleeping baby pictures. I just can't even.
But overall, I'm completely at peace with her future. We have been praying that the hole would heal on it's own, and it hasn't (as of yet.) And we've been praying that if it didn't, she could get the catheter procedure. And know we know that will not happen. So we are just totally surrendered to God's will right now. Jon and I are both grateful that we have a decision and can finally get this taken care of. But I'm also grateful for this past year of waiting. A year ago, I would often just cry into my baby girl's hair at the thought of her broken little heart. Now that she's grown, and showing off her feisty, fighter spirit, I know she's going to be okay. Healed, actually. And we'll never have to worry about her heart again (well, at least the physical part of it!)

Just a few prayer requests: the surgery date is set for March 23, so obviously we're praying for her surgeons and that all goes smoothly on that day. After that she'll move to the PICU until her tubes can be removed and then to the regular cardio unit for recovery. So we're praying for a quick and easy recovery, because honestly, I cannot even begin to picture what entertaining a toddler stuck to a hospital bed will look like. (And on that note, I am looking for suggestions for things to bring to the hospital, both practical and fun!)

And while we're talking about the hospital stay, I'm praying to have this child weaned very soon. I know I said, since she's my last one, that I'd be happy to nurse her for as long as she wanted. But we were sitting in the cardiologist's office the other week, trying to have a very important discussion about her test results, when Joci decided she wanted to nurse. I said no, so she slapped me across the face. It was then that I decided that our post-surgery hospital stay will be probably go much smoother if my daughter had some new ways of comforting herself. The good news is it's been approximately 75 hours since she last nursed. Also, I have not yet cried over weaning my last baby. (I'm too busy crying over already jumping up a size in jeans.)

She is such a little lover-girl, so generous with her kisses!
We're also praying for her recovery time at home. My parents will be coming in to watch our other kids so Jon and I can stay at the hospital with Joci, so we know they will be well taken care of, er, spoiled. Jon's work is also giving him some emergency time off (which is HUGE) and some of our friends are planning to bring us meals. So we're already feeling so loved and blessed. We're just praying for a complication-free recovery at home so that we can get started on enjoying SPRING. Because it SHOULD be here by then, right??

Oh, I hope so. I'm so looking forward to new life (and new leases on life). Just one more storm to get through. Stay warm, friends! And thank you to everyone who has been praying for our little girl this past year! We're so grateful for you, and for God's sweet gift in the form of Jocelyn, and for this great hope we have for her future!

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