Four Years Later . . .

Four years ago today, everyone’s eyes were on the Mayan calendar which seemed to be proclaiming the end of the world.

For our family, though, it pretty much WAS the end of our world. Because four years ago Calf #6 was born and our lives changed so drastically that there is no other way to describe it.

Hours after her birth, she developed respiratory distress due to a massive pulmonary hemorrhage. We didn’t understand what was going on or why, we just knew she was in trouble and that it was very, very bad. We immediately changed our plans to include an impromptu stay in The Big City while she was in the NICU there. Our family’s life changed again drastically 12 days later when she and I flew out of state for another 6.5 weeks in their NICU.

It was some weeks after her birth before we knew we’d be able to take our daughter home. And weeks after that trying desperately to get her healthy enough to go home. (I’m sure that if Dante had known about the NICU he would have included this in one of his levels of hell.) Four weeks later she was back hospitalized again, a side effect of the awful stuff that kept her alive early on when she was critically ill and her body’s peculiarities. It was devastating for us.

It was two years after her birth before we finally found out that this pulmonary hemorrhage was NOT just a one time event, that it was recurring, and had recurred nobody knew how many times. And the past two years since then, with test after test after test after test, trying desperately to understand what is going on, why her lungs bleed, and what we can do to stop it and hopefully save her life.

During this time, Calf #6 has grown from a cute “little” 12-pound baby to a fun-loving preschooler who is wild and rambunctious, smart as a whip, outgoing and helpful and energetic and full of life. We can’t imagine our family without her.

We are forever changed by these experiences in many ways: little and big, the blatantly obvious and the not-quite-so-visible. Personally, I still can’t really tolerate Christmas music as that’s ALL we heard while she was in The Big City’s NICU (and even on January 1 as we were preparing to life flight her out of state!) Particularly cannot stand that song, “I’ll be home for Christmas.” So, so many tears.

The journey has been long and arduous and frustrating and amazing. There have been so, so many people over the past four years who have loved and supported and helped and prayed for our family. I’m embarrassed to say that I’ve lost contact with so many, being unable to keep up with life these past four years.

But thank you all for following Calf #6’s journey and keeping up with us. Thank you for your love, prayers, and support. (And forgive us for not keeping in touch better!)

 Just a couple of hours old, before things got "exciting"

Just a couple of hours old, before things got “exciting”

3 am Christmas Eve

3 am Christmas Eve

A bit later Christmas Eve

A bit later Christmas Eve

ECMO, It's terrifying. But it saved her life.

ECMO, It’s terrifying. But it saved her life.

almost 4 years old!

almost 4 years old!

 

Do You See It?

img_2167

Seen at home in September, when The Bull and the oldest Calf were up hunting caribou.

Minutes later, I heard the click-click-click of a caribou’s tendons as one walked by the house. . . no pic on that one, it was too dark.

30 Minutes In The Life

I took Calf #6 in for a blood draw. We have done this every week, or 2 or 3, since November’s hospitalization. UGH. Thankfully, what needs to be done can be done with a finger poke.

We have a good routine going. She gets extra hydration via coconut water on the drive in. We register at the hospital and she carries her stickers. We stop to say Hi to Emma Jean on the way to the lab. (Emma Jean is a skeleton who resides in the doorway of the. . . ahem. . . Imaging Department.)

This time at the lab, she threw her stickers at the person at the desk (ugh, manners please child!) and we got a warm pack for her fingers. She chose her left hand this time. She peeled the warm pack stickers all by herself and got them tangled, but somehow managed to adhere the thing at least partly to her fingertips.

When they called her name, she walked in and climbed into the big chair by herself. Then I sat down under her and hold her. She can verify her name. Soon she’ll be able to verify her birthdate. We talked about why the doctor wants to see her blood and what happens after it’s drawn. We looked at the blue veins running through her hand. Meanwhile, the nice lady has decided which finger to use, washed it, and dried it. When she picked up the pokey thingey we start our deep breathing: breathe in like smelling a flower, breathe out like blowing out a candle. Just like in the Sophie book. We counted 1, 2, 3, then the poke. (Except this time it went on 4.) The nice lady let her hold two of the little purple-top tubes used to collect her blood. The purple almost exactly matches the color of her outfit. (No, that wasn’t planned.) This time, like the past 2 or 3, there are no tears. That’s amazing to me.

Once the tube was sufficiently filled, she held the gauze on her finger to stop the bleeding while the nice lady looked around in the back room for a nice bandaid. It’s an Elmo bandaid, yay! Then she was off to the prize box. This time she picked a beach ball that her big sis would later blow up for her. And, as she’s done every trip in these past months, she asked for a Biohazard bag to put her prize into. Usually she’ll also visit the sticker box, but they’ve been short on stickers lately and we’re in a hurry.

On the way out of the hospital she told me, “Next time I want an arm poke.” My heart nearly fell to the floor. We’ve been doing finger pokes instead of venipuncture because it has been WAAAAAAAAYYY easier on her (and me.) My second thought was to realize that she has accepted blood draws as a normal part of her life. It’s not “if I get another poke,” it’s “when.” Wow. What a brave little girl she is!

I didn’t have the heart to tell her yet, but her next blood draw WILL be an “arm poke.” She’ll be in for another bronchoscopy and that’s part of the routine. Thankfully, this will be done after she is anesthetized and she won’t feel a thing when it’s done.

What an adventure. Awful and wonderful, all at the same time.

In Which There Is Whine, But No Cheese

Because I’ve not had cheese in a long time. No dairy either. Not since Nov 19, 2014! That’s 1 year and 1 week with no cheese, no yogurt, no milk. Hard to imagine, isn’t it?

(Fair warning. This is not a positive post. This is a whiney rant.)

My not-quite-three-year-old daughter was feverish and coughing and an emergency room visit showed her to be very, very ill. So she was hospitalized last week. She has a dreadful disease. Well, we think she has a dreadful disease. It’s not really a diagnosis, more a statement about what her body does.

Also they don’t know why this is happening. No known reason = idiopathic = terrible, terrifying condition.

She defied the odds and survived her newborn stage. She continues to defy the odds.

And she defies what should happen under these situations.

I’m tired. (Have been a while.)

I’m scared. (This is nothing new.)

I’m tired of being scared, and depressed, and worried.

I feel. . . like I’m drowning, or maybe like I’m suffocating. I can’t manage to put my head together or get stuff done. What am I supposed to be doing? How do I do it? When do I need to leave the house? What day is it?

What is wrong with my daughter?! Is the overriding question that constantly occupies my thoughts.

How much longer will she be with us?? For a while now (9 or 10 months) I’ve had this dread feeling that she won’t be with us much longer.

Her ‘diagnosis’ (I still can’t bring myself to accept it for her) isn’t pretty. Prior to the 1940s it was usually found by autopsy. Even now, survival rate isn’t very good. (With or without treatment.) She could die quickly or she could slowly decline before dying.

And there’s no national organization pushing for research and connecting families impacted by this thing.

She did so much better when we removed dairy and wheat from her diet but the doc insists that this is coincidental. And since she still breastfeeds (thank God!!) I began to avoid dairy in November too. In December we both started to avoid wheat.

Hence the cheese-less whine. Ya ever noticed how many comfort foods include dairy and/ or wheat?? Buttery mashed potatoes, macaroni and cheese, grilled cheese sandwich. Even chocolate. *sob* And there ain’t no equivalent substitute for cheese. (Sorry, Daiya.) Gluten free stuff is ok, but grainy and dry.

Meanwhile, she LOOKS healthy. She SOUNDS healthy. (Hear that? That’s my daughter screaming in the back seat. Yup she has lung issues. . . .)

This doesn’t make sense. In the hospital last week I told the doctor I was confused. “You’re not the only one.” Not really comforting. . . but then again it is, he’s willing to admit he doesn’t know what’s wrong with her. Or, what all is going wrong with her.

But we have to treat what we know is going on with her. *shudder* Even if studies show that the treatment does not have any effect on this condition.

Meanwhile we wait for the results of the last tests. And we wait to see if she is improving or, you know, not improving. : (

So Happy Thanksgiving to all. Count your blessings and hug your babies tight. That’s all I got.

 

Edited to add-Thanksgiving Day:
Before anybody says this: YES! I know she is a miracle! I know that we are so, so blessed to have her with us–even with these serious concerns. She really should have died on the day she was born. I know I should be grateful for every day we have had with her–and I am!

I’m tired, really tired, exhausted. And scared, very scared, terrified. Our family lived through the hell that followed her first medical emergency. And her condition is very likely to cause a repeat of that emergency.

I’m feeling panicky right now, even, watching her run around the living room while my dear Bull and the other Calves are watching a football game. I’m trying to cherish every one of these precious family times, knowing that we have no guarantee for more.

The Moose Is Back

Woo Hoo!! We have moose meat in the freezer again! Courtesy of this guy.

IMG_6326

(Wow, he’s growing up so quickly. Where’s the time gone??)

These guys, really. Can’t forget the brains behind this operation.

IMG_6327

On tonight’s menu, moose ribs. I had to check my own blog for my recipe. 😉 Last time we had game meat was 2011. Crazy how time flies.

Ok, I’m off to start the ribs. Catch ya later.

%d bloggers like this: