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.

Superbowl 50

This year’s Superbowl festivities at Moose House were a bit subdued.

The Bull had minor surgery nearly 2 weeks ago and is stiiiiiiillllllll recovering. He has had a rough, rough go of it. Ended up with a secondary viral throat infection (horribly painful), then a fungal infection, then a possible 2nd secondary viral infection. Lots of pain, lots of meds, lots of doctor visits (today marks 2 days since the last–and that’s a record!). Not a whole lot of eating for him (duh, sore throat) and he’s lost 15 pounds!

Oh, and he’s supposed to go back to work this week . . . not sure how that’s gonna work! 😦

On top of that, for some reason we thought it would be OK to schedule a surgical procedure for our 3 year old during his second recovery week. In the Big City (about 4 hours away.) Which involved some early mornings, late nights, trying to sleep in an uncomfortable bed away from home, no naps, exhausted parents, and cranky tired Calves.

Needless to say, our typical Superbowl snacks didn’t happen. The Bull couldn’t eat them, didn’t want them. I didn’t have the energy to put them together or even the mental focus to follow a simple recipe (an unfortunate effect of the huge stress we’ve had these past few months.)

So we had canned chili mixed with sour cream (with tortilla chips for the calves.) Canned vienna sausages and corned beef hash. Coconut water for The Bull. Leftovers from the fridge and candy that had been in the pantry for a while.

But at least we got to be together (except when we sent the overly rowdy Calves out to play in the snow in the 2nd quarter.) More than we could say for some years (like 2013, when I watched in our littlest Calf’s hospital room in Portland.)

But it started with the national anthem. The announcer named the singer and I was worried. She has such a foul reputation! But I was pleasantly surprised–and impressed. She can actually sing. And was dressed. 😉

Of course, as in years past, this is my favorite thing to do during the superbowl.

And there were some neat commercials. Like this one, that I really wanted to be about congenital heart disease or organ donation. Because this is the world where we live now. Sigh.

[Hyndai “Better”]

This one was really cute.

[SuperBowl babies choir]

This one hit a little too close to home for comfort. :/

[OIC is different-Envy]

I was pretty surprised that I actually recognized a couple of songs on the half time show. (I don’t follow pop music anymore.) Except that I didn’t recognize them from the originals, but from the Piano Guys’ re-hashing of the originals. 😉

We did turn the tv off when the half time show turned into a wiggle-your-rear show. But that didn’t last long.

All told, we got through the Superbowl the way we’ve gotten through all the hard things life has thrown at us. Limping along together, as a family, as best we can, with a few good times thrown in for good measure. And some laughter. And food.

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.

So, About That Rest. . .

I don’t really do “new year’s resolutions.” But I guess you could say that mine this year is to learn to accept life’s happenings as ordained by the LORD. To realize that there’s a time for everything, the good things and the bad, and to not stress when hard times came.

Ha. That’s easy for me to say.

Our littlest Calf, just over two years old, has had various tests over the past few months to find out why she coughed so much last year. We ruled out cystic fibrosis and many other diseases, but found that her lungs had bled–recently and substantially. So then our question changed from “Why is she coughing?” to “Why was she bleeding?”

(Because lung bleeding, I’ve learned, is a reeeeeally serious thing and can damage my poor baby’s lungs or heart. Or cause, you know, a quick death, since you can’t live long if you can’t breathe and lungs filling with blood can seriously impede a child’s ability to breathe. 😛 )

We have not yet found an answer to this question. We got home Friday from yet another trip to the Big City where yet another expensive and serious test shows no solid answers. We have ruled out a lot of diseases and conditions–the less serious and easier to treat ones. Unfortunately, because this leaves the more serious and harder to treat ones.

After the test, the doctor gave us three possible courses of action: a lung biopsy, systemic steroids, or some other unknown treatment. He wanted to talk with yet another specialist before making his decision. We hope to hear this week.

*Sigh*

Today I realize that I’m in over my head with this new mindset thingey. Time to call out the big dogs. I think I need to memorize a new Psalm.

I love Psalms, ya know? Chock full of the full range of human emotions, from highs to lows. And we’re kinda low right now.

Inspired by this song that we sang at church two weeks ago,

I bring you Psalm 121. In the Revised Standard Version after RSV, a terrible disease that gave this precious little girl an emergency room visit last year. (Oh, the irony.)

So when I’m anxious about my baby’s health or upcoming medical treatments or procedures, I’m going to be going over these verses.

Interestingly enough, I read a few weeks ago that this verse is often used as a traditional Jewish blessing for women in labor and for children. Cool, huh?

I feel better already. Truly.

A Time To Rest?

Things have been interesting lately, and not exactly in a fun or easy way. Our littlest, Calf #6, spent months coughing. July thru December, she had a week here, two weeks there, another week and a half another time. . . when she was NOT coughing. Poor girl. And I don’t think she was feeling well those non-coughing weeks, either. And needless to say, overnights were rough for a lot of that time, too.

Visiting with her pediatrician in October, we got the suggestion to visit a pulmonologist in Anchorage. That led to monthly trips to Anchorage and several rounds of testing, which showed that she doesn’t have cystic fibrosis and that her lungs have recently bled–substantially. Now we are trying to find out WHY. Which requires more testing, and more invasive testing; and may lead to a scary diagnosis.

Meanwhile, I’m coming to realize that The Bull’s health, while stable right now, will eventually decline to his needing a kidney transplant. According to these folks, 82% of the 123,000 people who need an organ need a kidney. All of this takes me down a dreadful road of “what if’s.” What if he can’t get a kidney when he’s ready? What if he is determined to be not a good candidate for transplant? What if his body rejects the transplanted kidney? What if there are complications during surgery? Where will we stay for the weeks or months that he will need to stay near the transplant center? How will we be able to afford this financially? We already figure we’ll need to leave good ol’ Alaska for this.

Yesterday I told a friend that we wouldn’t be seeing her today so that I could stay home and fret about Calf #6 and The Bull. I KNOW that this won’t do any good, and I KNOW that both of these situations we are far enough out that anything could change. . . but somehow it seems better in my mind to do the worrying in advance so I know what I’ll do if we get a horrible diagnosis for the baby or The Bull. I know, I know, that doesn’t do anybody any good, least of all myself.

So this morning I took a bath and thought I’d put my magazine subscription to good use. This particular issue has been around the house for a couple of years, and maybe I’ve already read it–at least, parts. It was still in my stash of books “to be read.” The cover seemed interesting. So while I soaked with nice smelling bathwater I read for encouragement in my life as mama and wife.

Now, I read magazines from back to front (I know, I’m weird) so the first article I read was the last one in the book. In reading it, the author referenced the passage in Ecclesiastes that there is a time for everything. “A time to weep, and a time to laugh; a time to mourn, and a time to dance.” (3:4) It’s not an unfamiliar concept, but for some reason today it struck me as incredibly significant. Life is like this, isn’t it? We must be as ready for the hard times as we are for the good times. But for me, happy times are wonderful and hard times are an unpleasant surprise. They shouldn’t be; I know that everyone has them. Why would I be any different?

Furthermore, the article reminds, all times are the LORD’s doing. He is in control of the times and seasons and has set the good times and the hard times in their proper places. It is not for me to insist that “this isn’t what I want,” nor to be surprised when hard things happen, but to acknowledge that the LORD for some reason wants me or my family to go through these experiences.

I’m sure I’ve heard this before. I’m not sure why today this seems to be a new concept for me. Maybe it’s just never hit me this way before.

I ended up re-warming the bath water several times while I finished the magazine. Mainly, I wanted to finish it and put it away with the (few) magazines I’ve already read. Some of the articles sounded very familiar; I’m sure I read parts before sometime but not all of them.

And I’m glad I did continue to read. Another article earlier in the magazine describes a woman’s fight with fear that seemed incredibly familiar to me. Though some of the details were very different, I could relate to what she was explaining: the deep fear that immobilizes a person. Her story told of finding a quiet place of rest in the midst of difficult times, which included a pregnancy and her newborn’s early delivery and week in the NICU because of breathing trouble.

(Now, it just so happens that I know about the NICU, our littlest Calf having spent two months there. I know I haven’t said much about this. Suffice to say, it was not a very restful time or place. Not fun, either; the article did mention this.)

I read the article twice, wondering how I could reach the point that this woman had, this place of rest where she learned to trust, truly trust the LORD. She referenced Psalm 107:27-31. I guess I could start there. “Then are they glad because they be quiet; so he bringeth them unto their desired haven.”

At the very least, I think it’s significant for me to accept that the happenings in our lives, the fun AND the rough, are set there intentionally by the LORD. That His love is not dependent on whether life is easy or hard. I mean: We will go through hard times and it doesn’t mean that He no longer loves us, nor that we did something wrong.

I left the bathtub with my hair a little bit cleaner and my heart a whole lot more clearer on how Job could still bless the LORD, no matter what happened in his life. Determined to take the first step by realizing that, even if difficult, for some reason the LORD wants us to go through the situations that we are facing.

Minutes later, my phone rang. I groaned when I saw the caller ID: Someone who has hurt me in the past. Not someone I wanted to talk to.

Oh wait: what was I saying about He wants this for us, for me? Oh yeah.

The half-hour call went surprisingly well. Maybe trying to see life as His plan helped.

We’ll see how this idea plays out over the next weeks as we await results from the baby’s testing.

I Used To

I realized this morning that I’ve fallen far from where I used to be as a mother and house keeper.

I used to meal plan. (Ahhh, those sweet days. . .)

Shoot, I used to cook! Meals now are often sandwiches or scrambled eggs, something quick. I don’t even use the crock pot much any more because that takes forethought.

I used to wash the table after each meal.

I used to blog. (Ha ha ha. What am I doing now? 🙂 No, I mean I used to blog a LOT!)

I used to spend time connecting with bloggy buddies. I miss those people. I bet a bunch of those links in my blogroll are no longer active. 😦

I used to study and memorize the Bible.

I remember after miscarrying, during a low time, a dear friend hugging me. “I miss you!” she said. “I bet you miss you, too!” It was more than just not seeing me as regularly as before. I just wasn’t myself. Yes, I did miss me. I don’t know that I’ve gotten back to me yet.

Some days it feels like I have.

Some days it doesn’t.

I never got to be the mother I wanted to be. The ideal, before having kids. I don’t know where those ideas came from but they did not take into account reality or how children really are!

My oldest is 11, nearly 12. Just a few more years and he’s gone and living like an adult. I cringe thinking about that. He’s got so far to go to be ready for that! When do we have time to do all those things that we wanted to teach him (and his siblings) before they were on their own?

How do I get back to where I was before? The good habits, I mean. Those that had to go by the wayside long gone. Now the idea of doing a menu plan or a Bible study makes my eyes roll up in my head. Where would I find time for this stuff? I’ve been doing everything by the seat of my pants for so long! Not just meal planning. School, taking care of the children, the house.

I’d love to have more order in the day to day life. But it takes time to plan and I’m swamped with just getting through the day. How would I add one more thing in??

The world is a merry go round racing a hundred miles an hour. Somebody stop this thing, I wanna get off!!!

Six Months, or, Where Has The Time Gone???

When last I posted, I was expecting baby #5. (Except she’s really baby #6, if you are keeping track.) I worked hard during the pregnancy to be healthy, eating right, taking my vitamins and supplements, and walking. Wowie, how I walked! 20 minutes a day, 4 or 5 or 6 days a week.

It ended up being my healthiest pregnancy. I felt pretty good (after the initial “morning” sickness wore off, anyway.) I gained less weight in this pregnancy than any other. (Well, except for that one. . .)

And her birth? Oh I was worried! But it was wonderful. Simple, straight forward, 7 hours from the first contraction to her birth (5 from water breaking.) I got to hold my baby right away and breastfeed her and thought we’d be in for a nice ‘babymoon.’

And then “it” happened. At about 3.5 hours after birth, we noticed that she was having great difficulty breathing.

And my precious little girl (“little” being relative; she was 11# 12 oz!) ended up spending the next 8 weeks in the hospital. It was horrible, dramatic, and terrifying. All the things a parent doesn’t want for her child, my baby endured. IVs, medications (MORPHINE! and steroids! OMG!!), intubation, surgery. We weren’t sure for the longest time if we would ever take her home.

But we did. And things looked like they would be improving and then after 4 weeks home she became jaundiced. Back to the hospital for another 12 days-and this one, interestingly enough, was MUCH worse than the first time.

She’s now home and doing very well. She exclusively breastfeeds! (And oh, how we had to fight for that.) She’s adorable and has the best hair of any of my babies; it’s red and curly! She’s showing some slight delays because of her early history, but at this point everything looks like smooth sailing.

I hope.

But always in the back of my mind is the idea that *this* cough, *this* snotty nose, *this* fussiness is a symptom of a big problem that will lead us back to the hospital and more trauma.

So here, once again, I find myself in need of some major healing. I need to get back in to see my therapist.Image

I’d mentioned last post that I was worried about having more difficulties, trauma, tragedy. Yup. We got it.

I feel kind of resigned, that this will be what the future will be like for us. Terrible stuff at every turn with no end in sight. Oh, sure, things are (relatively) calm right now. But just you wait, we’ll have more crap to deal with in a few weeks or months.

And yeah, I get that THIS is what life is. Difficulties and rough times, I mean. But ours seem to be huge and insurmountable.

Whatever.

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