Monday, January 11, 2010

100 Degree Difference

Hey Y'all.
What a week. Honestly.

Here's the long and short (mostly long, sorry) of the hospital news:
Little Nugget has had biopsies, various tests, and enough procedures done to make her burst into tears the moment she sees someone in scrubs or white jackets. And after all this, we are leaving Seattle with the same information we came with... essentially that our baby is not growing and is severely constipated. She hasn't gained any weight in over 9 weeks now. The poor Little Nugget had to receive THREE enemas and almost 2 gallons of something they call "Go Lightly" (which should be renamed Go Constantly), before she finally cleaned out her little bowels. When they put her back on the scale, it turns out that she lost close to an entire pound of poop. Talk about being "full of it".
They added a feeding tube to her list of things to go home with. The good news is that her tests did not show any of the very serious and or deadly diseases she could have had. The bad news is that the doctors still don't know what the heck is wrong with her, and they are "HOPING" that with emptied bowels and the feeding tube, that she will be able to absorb nutrients and calories and start gaining weight.
The science in that: the intestines are where your body absorbs nutrients and converts calories into the stuff it takes to grow. If that part of the body is full, there is nowhere to absorb those calories. By emptying the system and keeping stuff moving through, that means the body SHOULD be able to do it's job. The doctor sounded hopeful that the feeding tube would be a fairly temporary thing, and if his Empty Intestine Theory is correct, we should start seeing Little Nugget pack on the weight fairly quickly. Who knew pooping was so incredibly important?

Meanwhile, I'll be nursing constantly, pumping milk for supplementary feedings in between nursing, and trying to keep her from removing the feeding tube. She's not crazy about it. We couldn't leave the hospital until I proved that I could replace a dislodged tube (not too challenging, I should add). It brings a whole new meaning to "up your nose with a rubber hose".

Thanks to everyone that was praying for us and sending good wishes and good karma. Hopefully this works, because if she doesn't start growing, we will probably have to endure more testing and intervention.
Poor Peanut.

Living in the hospital for a week certainly lent some perspective though. We met lots of great kids and families in the hospital, there for all kinds of reasons. At one point, in the thick of our visit, I had a volunteer come sit with Little Nugget so I could take a much needed mental health break. (Your mind starts going a little nutty when you are tired, your baby is being poked and prodded, and you still don't have a WHY your baby is sick). I headed to the coffee shop in the hospital and was just starting to feel sorry enough for Little Nugget and myself to start crying. Another mom with an almost bald little toddler sat next to me and offered a hug (which I gladly accepted). "First trip?" she asked. "Yep," I replied, as I sniffed and wiped my eyes. The toddler was eyeballing me with curiosity. We exchanged stories, and I got a dose of perspective. She was there with her little guy who was undergoing chemotherapy. And just when I felt like an idiot for crying over my generally healthy but not pooping or growing baby, she said she really felt for ME. She thought having no answer was worse than having a diagnosis, even a really bad one. She sat with me for the rest of my break, our conversation about sick kids came to an end when she noticed my knitting bag, and we spent the rest of the time talking about normal stuff... how to knit in the round, fun places to see in Seattle, and what the rest of our respective family members were like. Being normal was what I really needed. When we parted ways, we both went back to our individual stresses, but a little more "normal" for our coffee break.
Watching a little guy bravely holding his mommy's hand on the way to chemo definitely gives you a little perspective about your own worries. Watching his mommy treat him like a normal toddler when he wanted to push every button on the elevator made it a little easier to return to Little Nugget's room without being afraid of her feeding tube and other equipment.

We are leaving Seattle with the same thing we got here with. A baby who won't grow and won't poop. I think we finally have the pooping part a little more under control. Little Nugget is slowly growing used to the feeding tube, and my new mission is to knit up some really adorable and fashionable mitten-like hand covers for her so she doesn't have to wear an ugly sock on her hand. (The sock keeps her from being able to get her nimble little fingers on the feeding tube, reducing the ability to pull it out.) I happened upon another fancy-pants knitting store today where I indulged in some adorable and fancy yarns just for this project (and maybe a few others). J was feeling sorry enough for Little Nugget and his tired wife who endured the hospital trip alone that he didn't question my (expensive) yarn purchases... simply saying that it was good for me to find something fun and enjoyable while I was here. (When he sees the receipt, he may not feel quite so generous. Ahem.)

We head back to Fairbanks tomorrow. I can't wait to see Beans and J again, and head back to my cozy Little Farm on the Tundra... back to the quiet life, the crunching snow, and the wood-smoked coziness of Alaska.

J sent a text this morning... 48 below zero at the little house. As I sit and watch a light rain mist over Seattle, I am aware of the nearly 100 degree temperature difference. (It's around 50 degrees here in Seattle today.)
He says the wood stove has been burning wood at a steady rate today. There was three inches of frost on the dryer vent that he had to knock off before he could dry the laundry. He reported that the house dropped 5 degrees in a matter of minutes when he opened the door to retrieve more firewood, and we both speculated about how the weather would affect his ability to safely retrieve Little Nugget and me from the airport. (Cars can have lots of trouble when it gets that cold. Not really very safe to embark on a 100 mile journey.)
I know it sounds crazy to WANT to be there, but I can't think of a happier place than to be settled at the kitchen table next to that wood stove, listening to clicking knitting needles and busy babies. I'm hoping it warms up enough for a safe trip back to Delta Junction, where the wood stove and the cabin are waiting for me.

I promise more exciting stories about Alaska living the next time around. For my loyal readers and those looking for more Alaska-ish banter, thanks for letting me babble on a much more personal note about our current troubles. Life will be returning to some kind of "normal" for us soon. I hope.

Until Next Time,
Happy Moose Trails!


Gloria said...

Lots of prayers being said for little nugget and you!

JackDaddy said...

The 48 below zero is just unbelievable!!

I'm sending you my best thoughts and wishes that your baby gets well quickly and permanently!

Hayley Britt said...

I enjoy reading all of your blog..not just the Alaska parts. I am sorry your family is going through this. I am glad you are both on your way home and I will say a prayer that your little one gains weight and that you will have no further worries.

Susan Stevenson said...

I am holding your family in my prayers, Nicole. Safe travels, my friend.

April said...

I'm glad you trusted us all with your trip to Seattle with Little Nugget. Yes, I am the first to admit that I LOVE your post about living in Alaska, but I have checked your blog even more hoping you have answers about Little Nugget. I will continue to pray that she will improve and that the tube will be removed soon. I hate not having answers with my one daughter and it causes so much stress. Safe travels to your much loved home and happy knitting all those beautiful yarns. I truly am jealous of them. Sure wish you posted pictures on your blog as I'm sure you would put them all i a basket for us all to see.

Anonymous said...

Amazing temp difference between Seattle and Fairbanks.

I am sad for you and your family for what you're going through, but your account of it -- your excellent, descriptive writing -- put me right there.

Hang in there and know that there are people who don't know you personally but who follow your story and are rooting for you. Sending you strength and hugs from Northern California.