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!



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.

Thankful for Spiders

It was late, much past bedtime. I’d been searching for something encouraging I’d read on a blog about children with medical (and other) special needs–because this is my life now–and coming up empty handed. I’d been putting off Calf #6 as she asked over and over, “Bob Looley mama?” (Bob and Larry; her name for Veggie Tales videos.) “No baby girl, we’re going to bed,” I said. Over and over.

But I wanted to go to bed. I’d woken up 2 hours too early that morning to her fussing. I didn’t want to wait for a 30 minute video. Instead I sang her a Silly Song. But she wanted to watch her movie. Now, late for bed and very, very tired, I just wanted to change her diaper, put her jammies on her, and go to bed.

The toddler, of course, was not having any of this. Deprived of her bedtime ritual of a movie and a snack, she was melting down. Why shouldn’t she? I ruined her schedule with my inattention to the time. She’d had horrible tantrums in April and May, but these had calmed down in June. Was this tantrum an escalation of the toddler years or because I wasn’t paying attention to her? Not that it mattered when your toddler has thrown herself on the bathroom floor and is kicking, screaming, flailing, rotating on her back, not wanting to be held or snuggled or comforted to calmness.

After I picked her up (receiving blows to face and legs and stomach) I noticed something moving. Black, small, and fast. A spider! I must admit to emitting a bit of a squeak when it quickly moved towards me.

“Look, sweetie, there’s a spider!” I said. I hadn’t shown her this kind of thing before. Her screaming, flailing, and kicking stopped immediately. Fastest. De-escalator. Ever. I put her down on the rug so she could see it.

Quickly, though, I learned that she wasn’t the type to be fascinated by bugs. She backed away quickly from the spider and gave a shriek. I think, though, that my interest in the bug made her more interested in watching, albeit from a distance.

The thing moved speedily towards the wall. I grabbed a shoe and, well, let’s just say I slowed the critter down. 😉 Now it was on the bathroom rug and attempting to crawl into hiding. Calf #6 was on the other end of the bathroom rug showing signs of wanting to not be on the rug because of this wiggling, half-squashed bug. I used the shoe to sweep him off the rug and onto the floor, where we watched it for another couple of seconds.

Next thing I know, she grabbed the shoe to squish it. You go, girl! She was quite proud of herself. I grabbed a bit of TP and finished the job and the spider was history.

How empowering was that? We went from a full-blown terrible tantrum (and trust me, she’s had a bunch–it’s not just the terrible 2’s, it’s the terrible 2’s in medical hell!), to buggy freak-out, to a search and destroy mission in just under a minute.

And another few minutes after that, wearing a fresh diaper and her favorite pink-and-white striped monkey footie jammies, we were headed happily to bed.

Bronchoscopy, CT Scan, and Biopsies, Oh My!

Tomorrow we head to Portland for the next stage of figuring out what’s happening in my poor little Calf #6’s lungs. There she will see another pulmonary doctor for a second opinion. The Anchorage one is scratching his head with my daughter! In January we found evidence that her lungs bled (again, aside from the one that happened when she was just a few hours old.) Recent testing has shown no cause. That testing has included bloodwork, a CT scan, and *shudder* a lung biopsy. (She had a liver biopsy at the same time because of some ongoing liver concerns.) And she’s not been anemic, which is usually the case when a kid’s lungs bleed.

She’s a mystery, my baby.

Blood testing ain’t been fun (last month’s was horrific–took over an HOUR and SIX pokes!) but the worst has been March’s biopsy. She got herself a one-night stay at the hospital for recovery. Aside from being in pain, there were WAY too many times when someone (nurse, x-ray tech) would come and ask, for example, “Can I take your blood pressure?” She invariable replied, “No.” And the person would invariably ignore her and do it anyway. I. Was. Furious. Don’t ask her if it’s not optional!!

So I was not at all surprised when tantrums like crazy started after that. These are not our typical 2 year old tantrums. These are long (15 minutes) and she’s kicking and screaming and flailing and banging her head and having a very, very, very bad time of it. Worse, they are REALLY hard to stop. Pre-biopsy, sure she had times where she got upset for some reason. These? These are hellacious and MUCH worse.

I’ve come to realize that they are happening when she doesn’t feel that I’m listening, truly listening to her. *Sigh* That’s hard to do with four other little ones needing my attention. (And then there’s time for me. . . somehow. . . oh and I’m married, I guess I should spend time with Daddy too?)

Anyway. I’ve learned I can stop these tantrums early by being calm and gentle, giving her extra attention, apologizing for not listening, and asking her to repeat herself. (Except, I’m not a calm, gentle kinda mom. I’d love to be, but after all these years I think I just need to accept that it’s not my style.)

She’s a very verbal little person and fairly easy to understand so having her repeat herself isn’t too hard. Sometimes I can’t give her what she wants–and you know, she’s usually and amazingly OK with it.

Anyway, tonight I decided to give Calf #6 a bath and a massage. A lovely, nice way to connect with this precious little one and give her body some good, calm, pleasant attention. We’ll be leaving ridiculously early Wednesday for the appointment so I wanted to get to bed early. Unfortunately, we got started with the bath a little late. I forced myself to go slowly with the bath, though.

While washing her hair I told her we’d be going on an airplane in a few days, and how fun would that be? She made the sign for “plane” with her hand (we did baby sign when she was younger) and flew it around the tub in front of her. I think I then told her that we’d be going to see a doctor.

Then she shocked me. “Hurt Nahnoo,” she said, pointing to her biopsy scars on the right side of her belly and using the name she calls herself. “Hurt dogter offis.” After I picked my mouth up off the floor, I agreed with her. “Yes, we went to the doctor’s office and you were hurt there.” I asked her if she knew why they hurt her at the doctor’s office; when she said no I explained that we need to find out why she’s been sick.

She then talked about the Tigger bathtub toy. “Tiger hurt belly.” I looked. My jaw dropped again. Sure enough, on the right (and left) side of his belly was a pair of parallel stripes. . .scars, in the eyes of my 2 year old medically special needs daughter.


I was amazed at her insight, how smart she is. “Yes,” I agreed, “Tiger did get hurt. Just like Nahnoo.”

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.


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.

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.


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