Saving Something for the Way Back

There are a few things that changed in my life after having 4 massive DVTs in 6 months.  One is a disorder called PTS, or Post Thrombotic Syndrome.  When the blood clots were in my leg, they held the delicate butterfly-wing-thin valves in my veins open, eventually damaging them.  These valves have the special job of keeping the blood that is being pumped up out of your feet and legs from immediately falling back down and pooling in lower points.  The sluggish blood flow increases the risk of another blood clot, and the overall result is a heaviness and constant tingling/buzzing in my leg, the foot getting very hot or very cold, and often dull or sharp pains.  My lucky leg gets tired way sooner than my good leg.  Lucky, because it still works, and I'm blessed either way.

To combat the symptoms of the PTS, I wear a very sexy compression sleeve on my lower leg.  It is Oh-So-Hot Bandaid-Beige, and looks muy guapa.  To forestall another clot, I take large amounts of blood thinners.  They tried regular amounts, but I grew 3 more blood clots, so, uh, yah, bigger dose is better, baby.  The have no impact on my health or the way I feel, except if I were to get cut badly, well... let's just say we try to avoid that.

I don't climb ladders, don't use sharp knives for complicated cuts, and I gave up sword juggling and walking on broken glass in my circus act.  

I'm careful.  That's all.

***

Back in June we went on a weekend away to visit Francine and Joyce in Sonoma County.

We headed to famed Bodega Bay, where the birds do NOT attack people anymore.  We even drove right past the church and old school house from the movie.  Interestingly, the people no longer run through the streets screaming there, either.  They just walk real normal-like.

The kids did what kids do, of course, when there is sand and water to spare.  It was a warm, sunny day with a calm breeze and, well, cold water.  You can't have it all.  It's not Southern California, after all.

Francine brought shovels and buckets and totes, and we all played in a way that only the beach encourages.  I can't imagine plunking myself down on the wet dirt in our back yard to play like that.

There was a long breakwater at the mouth of the bay leading to the ocean, and Adam climbed clear out to the end of it.  I started out with Ellie to follow him, when I saw an amazing starfish make that sea-star (the kids corrected me all day...), and we wanted to show it to the others.

We weren't too far out on the breakwater so Ellie went back and grabbed a tote.  We gently collected the sea-star (ooo, I got it right that time) and took it to show everyone.

By the time we got back to the location where we had found it, my leg was already a bit tired.  We put the sea-star back on his rock where he hurriedly ran at .00001 miles per hour to tell his family all about his kidnapping, then Ellie and I started back to making our way to the end of the breakwater.

It was slow going as we climbed over the huge boulders in our bare feet, and the sharp lava-like texture began to take it's tole on my endurance.  I have wimpy feet, I guess.  We billy-goated along for about 3/4 of the length of the breakwater and I slowly realized I had to stop.

It's not that I couldn't make it to the end, and it's not even that I couldn't have made it there and back, it's that I had to save something for the way back.  As my leg grew more and more tired, I began to take mis-steps.  I started to feel like an unsteady baby goat on new legs, not the big strong mama goat that I see in my mind's eye (I only see myself as a goat when I'm on rocks.  Otherwise I am a mermaid or a gazelle).  I scanned the boulders around me and realized that I was basically walking over the top of lava-shards.  Everywhere I looked I saw an opportunity to loose my balance and get a gash or cut.

I told Ellie to go on without me.  

I was mad.  It was the first time I haven't pushed myself to the end of a task.  I have always compelled myself to never give up on something I start, even if it takes me months or years.  But this time it was simply... what would be the word?

...unwise.

It would have been unwise to continue.

So I took a rest, and slowly started back.  I picked my way more carefully along, as my leg had become a little shaky.  My feet were bugging me the most, which was lame.  I used to have leather soles in the summer as a kid.  This was simply disgraceful.  I admit, I felt a little distressed.

At about this point I was joined by a seagull.  He sat up on a rock about 6 feet away, and let me get just so close before he lifted up into the air and floated two or three boulders further down the breakwater, to light again.  This repeated over and over until I was just about to the beach.  I couldn't tell if he was simply annoyed that I was in snail-like pursuit of him, or if he had actually come to keep me company.  It was a silly but comforting idea.  Either way, he took my mind off of my leg and feet, and I got back without a scratch.

Also, I got to see my sea-star again.  He had moved .6 inches.

During the time that it took me to bumble my way to the sand, the sky had filled with a low and looming fog, and for a time the kids almost vanished from view at the end of the breakwater.  

I began to worry about them as the came and went from my sight, bobbing up and down as they picked their way through the rocks.  What if one fell off the end into the sea?  What if Jonah, though brave as a little bear, got scared or hurt?  Could Adam get him back without getting hurt, himself, in the process?  

It seems when you set your mind to worrying, the worries flood in like flies through a door left open by the kids.  Adam, Jonah and Ellie eventually made it back, but in the last 50 yards of the breakwater, Jonah had lost his footing and fallen, getting badly scratched on hands, legs and arms.  He sobbed his way along the last stretch of rocks, encouraged and helped by Adam.  Poor little guy.

His crying blew along in the wind and reached me from far away as they made their way along the sand.  I suppose it was bound to happen.  I mean, I don't feel like it was fate that someone would get hurt, but just that when you live life, you're bound to get bumps and bruises.  It's just part of the deal.

  We gathered our things and by the time we were all packed up to head back to Francine's, the late evening sun broke through the fog and chased it over the hills with it's tail between it's legs.  Funny how dark moments can come and go so quickly sometimes.  

And sometimes not.  That's life, too.

*****

Francine's house makes everything better.

(Or maybe it's just Francine, ya' think?  

Yah, probably that second one.)

The Dollhouse.  

Jonah has graduated to be able to play in it. 

 Quite the coveted coming-of-age privilege in our family.

Evidence of Francine's green thumb

Francine's amazing living room, with bowls and baskets of toys, rattles and puzzles.  Art in every nook and cranny, gorgeous plants, and special treasures tucked into tiny corners.

(can you find two elephants?)

Nano isn't quite ready to play in the dollhouse,

 but she sneaks over and carefully moves a few things now and then.

Dinner with Francine is always Comfort Food, no matter what is served.

Time for goodbye hugs.

We needed them.  It would soon be a very difficult night.

(to be continued...)

Fireworks in November (The second in a series of catching-up posts)

The Fourth of July has taken a new meaning to me.  Two years ago on the 4th was the first time I walked all by myself to the park after battling the blood clots and spending many months immobile.  It was long and slow, and on the return trip Guy had to get the car and pick me up.  But I had mostly done it.  I sent a text to Dr. F. that night announcing my accomplishment.  He told me it was the best birthday present he'd gotten that year.

The next year on the 4th I ran a 5K with the support of Kathy and Danielle.  I sent a picture to Dr. F. of us at the finish line.  He cheered from a distance.

This year was just a regular 4th.  I texted Dr. F., sharing my gratitude with him over my ability to have a regular anything.  I just wished him a happy birthday and told him thanks for keeping me alive.  He humbly deflected the credit, and in a way he is right.  It wasn't all him.  Besides the many others who cared for me, it was a loving God that decided to let me be here for another year.  I very much acknowledge his hand in all things in my life.

This may be Independence Day, 

but for me it is the day I celebrate

 that I am dependent on him.

Photo Bomb!

Two peas... always together.

The little kid's table.  We are running out of little kids!

Guy's yummy Thai pulled pork sandwiches with ginger mayo and Mexican corn.

Red, white and, um, well, kind'a purple, actually.

Now that's what I call blue.

When all else fails, use food coloring.  Lot's of it.

The kids and I made new shirts this year. 

 Ellie did her's solo, and with perfect precision.

Off to the fireworks! 

Next Up... Camping!!!

Declaring Independance

I don't run.

That's what I thought of myself.  Just the way some people say, "I don't ski", I believed of myself that I don't run (unless in the presence of zombies, though I could be compelled to run toward chocolate).

Funny how we have to re-frame our beliefs about ourselves from time to time.  

I still can't say, "I run," in the pure sense of the word.  I hobble, sure.  I do a very hoppy-walk, maybe, but you couldn't really call it running.  Its more like a frazzled housewife stumbling across hot coals.  My friends Danielle and Kathy don't seem to mind, though.  Even though in a zombie invasion they could leave me in the dust as an entree, they let me set the pace when we have been out training.

On the 4th of July I "ran" (air quotes) my first 5K.  We had been using the Couch2-5K phone app for training, but hadn't gotten to the end of the training guide before race day.  I just told myself not to worry about it, because ABSOLUTELY ANYTHING I did in this race would be better than my efforts in the past.  Still, I had only done 2 miles in one shot, and that was with some structured 90 second breaks.  Oh, well! Too late now, it was go time. 

We headed over to the park at about 20 minutes before the race was to start, but as we approached the school, a horn went off... ten minutes early!   It was anticlimactic for sure, but all was not lost.  We got close to the start and joined the crowd as it poured out into the street.                    

Now, because "I don't run", I have only ever heard about the mysterious responses the body has in these settings.  There is a supposed adrenaline rush to speed you along your way.  Ha.  Yah, for like 30 seconds.  It was no time at all before my body was protesting the running, and telling me I was supposed to still be in bed.  "Hel-lo!!! Duh, it's a holiday!" my calves informed me.

About a century into the run some wise guy thought it would be keen to put up a "MILE 1" sign, and about four miles later a "MILE 2" sign.  Not helpful.  What the first sign actually said was, "Hey loser, you aren't even half way! Nanny-nanny!" and the next said, "Caution: 90 year old pushing a stroller passing you on the left".

My left leg grew heavy and achy.  I could hear the voice of my friend Andrea who has MS, in my head saying, "It's hard, but I am good at doing hard things."  I told myself that Danielle and Kathy thought I could do it (even if I didn't think so).  I thought about laying on a radiology table as Dr. F. pushed tools through my blood clots and inflated balloons in my veins while I suppressed tears of intense pain.  "This is easy compared to that," I told myself.  I may say it too many times here, but I thought about the blessing to have been given this opportunity, and this time my tears were just pure joy.  

There were, on occasion, perfect strangers who were calling out encouragement, and I kinda' wanted to hug them, even though it certainly couldn't have been for me.  It was like they could hear the crazy lady in my head telling me to lay down in the gutter and cry. 

 "Keep going!" they said.

"You're not a runner!" insisted the crazy lady.

"You're doing it!!!" they smiled.

"Gutter!!!!" said Crazy.

"Go!" cheered my new best friends.

The last half mile of the run followed the 4th of July parade route, and was speckled with people who had surely been paid to line the way.  Even though I felt embarrassed to be seen running in the light of day (all of my running-from-zombies takes place at night), I didn't care by that point.  Besides, there were people in tutus passing me up, nobody cared about me.

Nobody, until right at the finish, where I saw my hubby running backwards with a camera, and the Littles and Middles yelling, "Yay, Mama!!!  Go, Mama!!!"

"You did it, Dear!" Guy called, and I realized I was at the finish.  Guy walked through the finish line and put his arms around me.  Anybody looking would have seen us both in tears, and probably thought, "Geez, it's just a 5K, not a marathon!"

I guess that depends on how you look at it.

"... My grace is sufficient for thee: for my strength is made perfect in weakness.  Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me." -Corinthians 12:9

Fly Chasing

It's 4:30 on the dot. The it's-dark-outside, I've-gotta-get-up-in-three-hours side of 4:30. 

Mostly, my world has spun back into place from it's topsy turvey space-wobble of last year that left me slightly off center. Okay, slightly more off center.  Arms again cradle, milk flows, and I have refined my wickedly-cocked eyebrow to the extent that even the boldest of three year olds dare not sass. I work the long hours of my former glory, juggling loads of wash and scurried outings with the precision of a knife thrower. I have even managed to eek out some poetry and painting along the way. The rhythm of my days has pretty much fallen back into sync, and sinks, and the occasional toilet. 

But it is nights like tonight that reach into my chest like a callous hand into a birdcage, grabbing hold of my heart to rattle it. Nights when everyone else lay sleeping and I keep vigil, checking my leg every hour or so to see if the tingling and twinges, the chills from hip to toe, and the flushes of cold and heat have gone from phantom feelings to something else. Something to be seen. Red skin, purple patches, swelling maybe. Proof. 

They don't come too often, these nights. But tonight one came and has stayed.  And so Sleep picks up her pillow and blankie and shuffles out the door to somewhere where her sweet release will be more appreciated. I lay in the dark, the whispered breaths of baby and the grizzly snores of her papa like two clocks ticking in separate time.  I chase at the thoughts that come like flies, successfully shoo-ing most away. But some land. The ones of fluoroscopic images of nothing, because where no blood flows, no images appear; just veins, like branching trees abruptly pruned halfway to the sky. And other flies, more pesky even, memories of hours spent gasping for air that never gave relief. Flies that take the forms of funeral plans and orphans with my children's faces. 

I talk myself down off of a thousand ledges. I pray. I reach for love and peace and memories yet to be made. 

A bit ago even dozed off... for twenty minutes. A nightmare that I can't  remember called me back to my solemn watch.  

Guy surfaced from his log-sawing a moment ago and asked why I was up. "I'm a little freaked out. My leg..."

"Get an ultrasound," he most practically suggested before returning to his lumberjack sleep. 

I will, in the morning, which will be here soon.  Though not soon enough, what with all the flies. 

So blessed

It was a year ago today.

My first blood clot.  My leg got stiff and then painful, and then our world sort of fell apart.  One year ago today I met Jane, and Dr. F. and many others who would care for me in the coming year.
One.  Long.  Year.

I went today for my usual blood draw to test the clotting of my blood.  Virginia took me back and asked how I was doing.  I told her of my little anniversary.  She said, "Well, you must be very grateful, I mean, well, after all that with the woman in the news."

I didn't know what she meant.  I don't watch broadcast TV or see much news.

"There's a mama that had a DVT (deep vein thrombosis, or blood clot) and it caused a pulmonary embolism and now she's brain dead.  Apparently, the family wants to let her go, but the state is keeping her on life-support to save her baby."

I tried to focus on the calender on the wall.

"Yes," I said, "we are so grateful.  I have been so blessed."  I don't remember if we talked anymore after that.  I think I told her "See you next time".

I walked through the hall pressing my thumb into the cotton ball taped to the crook of my arm.  I walked fast as tears filled my eyes, like they are now as I think back on it.  I got to the van and drove home through a few more tears.  Needing to be mothered, and Francine not picking up, I called Ruth, who doula-ed me long distance as I made my way home.  I mean, of course I knew I was okay, but having heard that story, having spent the past few days reviewing in my mind all that has happened, and having a close friend lose her sweet baby this week, all spiraled into the perfect emotional storm.

Walking into the house, Guy saw my cry-face (tear streaks and puffy eyes, and rudolf nose).  I told him.  He held me.  I cried a little more.  "We were very blessed," he said, "Not just blessed, we saw miracles."  And then he held me some more.

When I think about how often we were held during that time I am so truly grateful.  We were held by God, by loved ones, by excellent caregivers, by dear friends, and by untold numbers of strangers.  We were held in prayer, in thought, and in hand, as so many participated in the day-to-day upkeep of our spirits and our family needs.

This afternoon Adam found the little olive wood cups filled with shells from the Red Sea that Ruth's mama, Marta, brought back from the Holy Land.  I showed them to Kathy and told her how Marta had been praying for me at the Wailing Wall in Jerusalem while I was in the middle of it all.  What a sweet reminder, all those tiny shells, all of the prayers.  What a blessing.

I know that we will face challenges in the future.  We have not reached some magical difficulty-deductible.  There have been and will be more, but I know that God knows our family, and yours, because we are all part of His family.  I know the comfort and peace that come amid the tempest.

Whatever your storm, whatever your trial or challenge, Heaven knows you.  You are loved.  God will not waste your pain.  Peace, peace, be still.

I am a blessed woman.  So blessed.  And so are you.

*****

1. 
   

Getting with the Flow

Two Cuties: Natalie and Jane

As I pushed Natalie in her stroller up the walkway at Kaiser South, a sweet old fellow was working on getting out of his car in a handicapped parking space near the door.  He was tall and dark, with a spritz of black freckles across his cheeks.  I gave him a smile, and he returned it with a deep sing-songy "How you doin'?"

"All right," I said with a shrug, in that chipper not-so-great-but-what'cha-gonna-do? tone.  "How are you?"
"All right." he echoed, his words a bit more tired sounding than mine, but with all the cheer.
"I mean, were both here, right?" I joked.  He looked up at the hospital as I pointed to it and laughed knowingly.
"Right." he conceded.

*****

After my procedure Tuesday for removal of my 4th blood clot in 8 months, I wasn't feeling great.  My leg, which usually feels "less" of everything after one of these clot-busting procedures -less fatigue, less pain, less tightness, less tingling - was feeling more.  And then some.  A strange new symptom had been added to the list.  I was having waves of  "the chills" that would stretch from hip to toe and raise almost painfully intense goosebumps on my leg.  What's more, my foot was chilly; according to Ethan's reptile thermometer, 13 degrees colder than my other foot.  And I was having pain where no pain had been before, in my pelvis.

I gave it a few days to see if it was just adjustments from the swelling, new stents, and tools from the procedure.  I could be brave in the daylight, and many times throughout the day I felt only very mild symptoms.  But each night as I lay in bed, the symptoms seemed more pronounced, and in the dark it was hart not to imagine that a clot was forming; to picture it in there, filling specific veins whose locations and names I now know all too well.  Popliteal, femoral, saphenous.  Though I tried to shut it out, my mind conjured the image of a clot growing and finally breaking off and hitting my lungs.  For several nights, I held little Natalie close and smelled her sweet, precious perfume, and prayed for sleep to come.

Monday I emailed Dr. F. a little 'heads up' and within 30 minutes was scheduled for an ultrasound with our angel Jane.  As it was last minute, I went alone with little Natalie.  Jane took us back, and her familiar face was a comfort.  After a pleasant chat we settled in for the scan, and this time, things were very different.  For the first time since the stents were placed, true blood flow could be captured by the ultrasound.  The vein was lit up with profuse flow, and Jane very happily showed me these new and surprising images.  Prior to my collaterals being blocked off by the new stents, there had been too much flow diverted through the alternative routes to force a vigorous flow through the femoral vein, but now that full flow was routed back along its normal course, there was no mistaking it.  The vein was clear.  Jane, Tara (one of my other favorite techs) and I celebrated, passing the baby around and enjoying the way a room feels that is filled with happy news.

Later that day I got a text from Dr. F. affirming what we had seen.  There was no need to guess if the stents may still be blocked, or to do an angiogram just to be on the safe side.  No drugs, no needles, no contrast dye, and no hole in my leg.  Hooray for stents that work!

Yesterday on the way to see the hematologist we ran into Dr. F. in the hallway.  He told us he had talked at length to my new doctor and given him a complete history.  More importantly, he said he trusted Dr. W. and really liked him, and thought we would, too.  We felt like we were being put into good hands.

Dr. W. met with us and though he had already spoken to Dr. F. and read my extensive and complicated file, he asked us to tell him all that we have been through.  It was a very nice way to start off.  He ordered some tests to look for cancer and other problems.  He believes that the reason I clot so well while on blood thinners may be a rare clotting disorder.  Most of the clotting disorders that are known today have only been discovered in the last 15 years.  He said that this disorder may not have been defined yet.  I guess well find out.  I gave blood, and now we wait.

Next up: CAT scan. TBA

Post Edit: I guess it would help to mention here that the reason I am feeling increased pain and sensitivity is due to the increased flow.  My tissues just aren't used to the intensity of it, and everything is coming back online as a result.  Eventually I should get used to the flow and it will come to feel "normal" again.

Number Four

Sweet Velma, one of my regular nurses.

Today when I went for my blood draw, Marina, Tom and Virginia were all busy, so a new tech was doing my blood draw.  She was chatting along and at one point said, 

"Well, life is full of surprises."  Yah, yah it is.

I guess I can say that when my leg is doing well, I just don't think much about it.  

Last week I started thinking about it.  A lot.

Now that I have fallen off of the pregnant patient wagon, I am just a regular, run-o-the-mill patient.  That means I fall under the umbrella of Dr. V., who hasn't seen me since I took a small flight and bouncy landing off of my son's bike in '09.  It turns out if you want to teach popping a wheelie, you should know how to land it.  I sent him an email to let him know that I wanted him to read my file, and that I felt like I was having the subtle inklings of a clot.

He sent me a reply, reassuring me that people
 don't grow clots while on blood thinners. 

You've heard of "read it and weep"?  Well, I did.  Cried actually.

Guy comforted me, assuring me that the doctor couldn't possibly have read my file.  We made an appointment, and waited the two days it took to see him.  He read my file, finally, while sitting in front of me.  It took several tries for him to even figure out which blood clot happened in which month.  Now, please understand, I really like Dr. V.  He has always been kind and helpful.  I understood that he must have just looked at my labs, which look like great labs for a regular person.  

Finally, he told it all back to me with the details in the right place, and then asked, 

"Where would you like to go for your scan?"

"South."

We drove to South Sac, but got there too late for Jane to scan me.  I got a new tech, and she assured me that though she couldn't officially tell me anything (sigh), she saw flow from my Inferior Vena Cava.

 I was awakened the next morning by a call from Dr. F., who said that the scan looked a little fishy to him, and scheduled me for an angiogram.  Next came an email from Dr. V. "Good News!" he said.
 The report on my scan came back clear of blood clots.
  Sheesh.

Tuesday we did the regular drill.  Fasting, IV, drugs, vitals, the usual.  Well, all except for when the nurse accidentally doubled my benedryl and I had a freaky reaction, which included watching the floor turn into water, and the chair seat throbbing.  It lasted about half an hour.

An interesting thing happens when I am on the table in the radiology procedure room.  I can't see anything, and once my leg is numb, I don't really know what's going on.  That's always when it comes, the news.

"Well, Laine, the stents are completely blocked."

Sigh.  Blood clot number four.

It was pretty hard to unblock them.  At one point
 he said what he was thinking out loud,

 "I'm pretty discouraged, here."

I became crestfallen. There was nothing I could do from my place there on the table.  He said he might have to go in through my jugular vein because the clot was too hard to get his tools through.  "You'll mess up my cool vampire-bite scar." I joked, trying to cheer him.  "I already have two nicely spaced scars, a third will ruin the effect."  I laid there and prayed for him to be confident, to find a way into my vein so that he wouldn't have to go in through my neck again.  

"I'm through." he said, finally.

He talked me through the procedure, explaining where the clots were, and what he was doing to break them up.  Eventually, he got it cleared and decided to place two more stents.  It was pretty painful, but we've been through worse.  It took about a 1/2 hour to stop the bleeding.

It was about 3 1/2 hours for the procedure, but of course the hours before and after totaled to about 8.  Because of the larger tools that Dr. F. used and how hard the clots were, it's been a lot more sore than previous recoveries,
 but today has been better.  

Dr. F. said he was perplexed; that even with my blood thinners and with the clot dissolving medication he was using, he was watching my blood clot on the tools right before his eyes.  "It shouldn't be able to do that," he said, puzzled.

  Next stop, a hematologist. 

My leg feels kind of weird now.  Not really sure what that means.

Once, Twice, Three times...

The double doors... where all the magic happens.

 "What are you going to do

 with the rest of your day?"  I asked Guy.

"This."  He answered.

"Silly.  We'll be home in about an hour."  I oh-so-wrongly replied.

 

*****

 

12 days ago my leg started feeling stiff and a little painful.  Kind'a reddish. 
Off.
 

8 days ago I went to a physical therapy appointment.  My balance is very unstable and my strength and range of motion are nil.  But when the PT saw my leg, she was nervous to touch it.
 

4 days ago a new doctor looked at my leg and decided that even though it looked okay-ish, my history begged her to further question what she saw.
 

An hour later we were in the South Hospital getting a leg scan. 
The tech turned out to be Jane, the very same woman who first found my first clot.

 

She hugged me when she saw me and said, "We started this together."

She took a long, careful time as she scanned.  The blood was flowing out of my leg, she could see, but somehow it did not look right.  She called in another tech who glanced for a few moments and then quipped, "Looks good" and left.  Jane continued scanning, and then said that she "just had a feeling" that something was not right.  She would send a note along with the scan to ask the doctor to look carefully at a few things.

 

3 days ago I got a message from kind Dr. F. saying that the ultrasound looked good, but if I was worried he would do a contrast angiogram and just make sure.  I almost said no, but that little voice in my head said to take him up on the offer.

 

One of these things is not like the other...

Yesterday we arrived at the hospital first thing in the morning.  I was casually prepped by the people who used to be strangers, but who now cheerfully greet me by name.  I had not the slightest bit of nervousness.  Sweet Velma and Dinnah admitted me, and David and Jim prepped my leg.  Soon Dr. F. was doing his thing, poking holes, shooting dye, taking ex-rays.
  

Then he broke the news.  My stents were blocked.  It was unclear if my artery had collapsed the stent, if the stent had perhaps shifted and the artery was now compressing the vein, or if, far more unlikely due to the blood thinners, I had a new clot.  All he could see was that those collateral veins (that had saved my leg health before by creating a bypass routing blood flow to my right leg) were back up and running, full steam.  The dye in my blood illuminated the vein in my leg and abruptly stopped.

 

Dr. F. was clearly disappointed, almost dejected.

There was another patient waiting, and since I had not been on the docket for an extended procedure I was wheeled into recovery to wait a bit.  Guy came in with the baby, happily chatting with a nurse, thinking we were going home.
 

I told him the news.  We processed.

While we waited, he called Bishop and asked him to come help Guy to give me a blessing.  He came just in time, and we asked Dr. F. to join us in prayer.  I wanted him there to feel the spirit and to hear the words of encouragement and peace that I knew would be spoken.  I needed this doctor to cheer up, feel inspired and directed, and to know we are all praying for him.  I wanted him to feel the power of the One who has been guiding this whole process.

  

Waiting for the procedure to be finished.

 More prepping; Andy started an IV and Claudet buzzed around me, hooking me up to heart monitors and taking vitals.

 We went back in through the double doors.
 

Dr. F. went back into my leg, this time with tools.  It became clear that the stents were now blocked by new blood clots - about 8 inches of them.  Guided by x-ray, he began the careful process of breaking them up and removing them using the drugs that we had refused back when I was pregnant with Natalie.  Because the clots were in the stents, it was less painful than I had imagined it would be.  The most intense pain was in my tender leg vein up in my thigh and from some of the ballooning he did deep in my pelvis.  Really, I was relieved that it was not as bad as before, and I had medication on board to help.

 

When he was done, Dr. F. held pressure on the entry point in my leg for a while because it continued to bleed.  It took so long that he called my buddy Noss, one of my favorite techs, over to continue with the pressure.  A half an hour later I was still bleeding.  Finally, 40 minutes after the procedure was complete, the bleeding stopped.  I lay still in recovery so as not to start bleeding again, and Guy worked on feeding the baby donated milk (thank you Kathy and Krista!!!), who had blessedly slept the entire time.

*****

 

We got home last night in time to head over to the Boy Scout fundraiser at church. 
I felt amazingly good, considering the day. 
I was happy to see friends. 

Glad to be with people I love. 

Thrilled to be walking and holding my girl.

 

We ate and laughed, bid way too much on a cake and a pie (good cause, you see), and then brought Bishop's family home with us to enjoy the desserts together.

 

*****

This week we've learned of 2 people who have endured amputations due to vein issues and clotting.  We are unbelievably blessed to have been through this for the third time now, and to still be able to walk. 

 

When Bishop came, the verse he had shared with us was simple and profound;

"Be Still, and Know that I am God."

 

We know.

Dolly girl slept the entire day. 
I sang "Once, Twice, Three times a blood clot" to her. 
Lionel Richie would be proud.

 Next step: Dr. F. has ordered weekly leg scans, has raised my blood thinners even more, and is conferring with his mentor, Dr. H., one of the leading vascular specialist in the US and internationally known.  He is sending my scans to him at Stanford.

Last night Dr. F. texted with my new dosages and asked me to keep Dr. H. in my prayers.
We are not the only ones whose faith is growing through all this.



Double Dipping

 

Everybody knows why you go to Costco. 

It's the samples.

But if you are Tessa, you have to pass them up. 

I know how she feels, and now that I am back in the boat with her she is very happy to have someone share her ore.  It's not that misery loves company.  She feels like we are partners.  She gets a kick out of sharing her rice milk, her gluten-free cereal and her dairy free cheese.  We talk about how it feels to be left out when goodies show up.

 

So Saturday I took Tessa someplace where she could double dip her ore if she wanted to.

The little local Gluten-Free Specialty Market

 in Sacramento had their anniversary party with vendors, sale items

and SAMPLES!!!!

 

Tessa invited Ellie.  I invited Natalie.  We had a girl's day out.

We sampled. 

And sampled some more.

(Yea for PB&J granola, nay for seaweed snacks!)

It was so fun to see her feeling normal.

It was just plain fun.

 

Faves: Pamela's Chocolate Cookies

Pamela's Flour Mixture

The Cultured Kitchen's Cashew based dips

Eco-Kids Cereal

 

*****

In other news...

Had a leg scan today.

It was unclear.

There have been some new symptoms.

We are waiting to hear more, maybe tomorrow.

Could be more clotting.

Could be an arterial problem.

Could be my body is just trying to find a

new normal.

 

I'm not worried.  Things are going to be okay.

Plan B....

 

Let me start by saying that,

 Yes, I of all people know how important our baby's health is.

For some reason, any time I express less than thrilled feelings over all that we have

and are currently going though, someone chirps up with

"What matters is a healthy baby." 

Without meaning to, what this statement communicates is that somehow I have put my feelings above the needs and health of the baby.

 

And I also disagree.

There are a lot of things that matter.  The baby matters. 

The experience matters.  The memories matter. 

I have spent years supporting women after they have been released from the hospital with their baby as a clinically physically healthy "duo", only to struggle with the effects of their experience for weeks, months or even years.  Depression or post traumatic stress due to birth trauma are very real and very devastating. 

Feelings matter, too.

 

*****

 

Tuesday I went to my NST.  Baby had gone from head down to breech.. That night we got a call from the midwife who was to help us give birth next Tuesday.  She started by apologizing.  A Neonatologist from South talked to the Head Neonate in Roseville and was told I should not be induced or birth there at South.  No clear explanation, just that the Rh status was the problem.  Keep in mind this was 5 days before our scheduled date.

I sent a flurry of emails, first to my Perinatologist, but the responses were very neutral and distant, stating that he was in support of what ever the Neonate recommended.  I contacted the Nurse Manager and other Perinate, and they tried.  Finally, yesterday afternoon the Head Neonate who set it all in motion called us to actually explain to me what is happening.

This is my attempt to explain it.

First, a few important points that we have learned:  When a woman is pregnant, she is two patients in one.  Some of the problems a baby has in-utero are very "different animals" once baby is out of the womb, and in this case much worse

An OB is only the baby doc when baby is in, once out, the baby is lobbed like a football into the field of the Neonatologysts.

There is not any contact with the parents and the neonates until baby is out.

Also...
RH iso-immunization means my blood's antibodies have been attacking baby's, but to what degree we don't know. 

After the baby is born the antibodies continue attacking the baby's red blood cells for up to four months.

In response, the baby's bone marrow makes a huge surplus of red blood cells.

Those blood cells are tiny at first and don't cause a problem, so by the time the problem manifests itself as deterioration in the baby, the problem is much bigger than it appears. 

The faster the least invasive treatment is used, the less likely the more invasive treatments will ever be needed.

 

******



As we learned, our baby could be born and appear to be fine, only to become very sick days or even weeks after going home.  By the time the disease manifests itself in a sick baby, the remedy is far more extreme than it would have been if treatment had been anticipated and started early, including blood product based medicines and double blood volume transfusions. 

Because my titers have increased, showing active sensitization, and because the level has reached the borderline between safe and dangerous, we have decided to birth at the high risk hospital.

Sadly, losing access to the labor tubs becomes a small matter in this situation.  The least invasive treatment for the baby is phototherapy.  This will mean that when the baby is about an hour old, they will take it away from me and put it in the NICU under intense bili-lights completely naked, not even a diaper.  The baby will be allowed out of the lights for 15-20 minutes once every 3 hours to breastfeed, and will stay for a minimum of 4 days, but more likely a week.  If baby does not respond well, we start getting into scary territory.

I am working my way through what this means, what we will be losing and otherwise forced to deal with.  Keep in mind that I usually push out my babies, pick them up into my arms and don't put them down for days.  I spent last night in tears.  I spent today in research.  I don't know what tomorrow will bring. 

What I do know is that this is hard, and I am sad and overwhelmed.  We have a lot to figure out, and we still don't have an actual plan.  There is a lot more, too much more really, but a few of those things are:

The NICU is two floors away from the Postpartum ward.
They can offer me a reclining chair to use in the NICU.
I will be allowed to touch the baby, but I will not easily be able to reach unless I am standing up.
I will be dealing with my blood clot and postpartum bod. 
I can only stay on my feet about 1-5 minutes right now.
I will not have nursing care for me when I am with my baby, and will be required to return to my room for all scheduled care, vitals, etc. 

Baby turned last night back to head down while I slept.  I am praying it will stay head down.  If it does not, I will have a cesarean.  Now go read that list above again.

*****

 

I know God has a plan.

I have no idea how it will play out.

Knowing that doesn't make it much easier.

I pray a lot.

I am exhausted and hurting and not sleeping much.

I am waiting.

I am trying to stay positive.

 

Hospi~talotics and Hoops

 

I was at the hospital last night for several hours to check on the clot in my leg and pelvis.  My pain has been increasing, leg turning more purple, and foot going numb.  My meds were changed last week and we were having a hard time getting the levels to get high enough.  They kept me on monitors for an hour and as usual, the baby did great.  A scan of my leg showed no increase in the clot size, but the flow in my leg is slow.  Baby is growing, so it is probably pressing on the vein, adding to the existing clot pressure and slowing the flow.

 

They sent us home at 10 PM with a thumbs up.  After we got home, old Toby began gagging and throwing up.  His breathing was hoarse and labored and I thought maybe he was on his way "out", so I stayed up with him until about 2 AM till he settled down.

 

I woke in lots of pain at 5:30 and spent a while trying to figure out how to arrange my six pillows with little success.  The next two hours were toughies.

 

I was supposed to go to a Non-Stress Test (NST) this morning, but as I had just had one 12 hours before, I called to cancel.  A few hours later a nurse called saying I needed to come in for the test anyway.  I was so exhausted and my leg hurt so much, that I just told her I respectfully declined and  I'd see her Friday for our next appointment.  Then I remembered that at some point in the past dozen conversations with medical staff someone had entered in my chart that I had "refused" medication, which wasn't true, but there it was in ink.  Another time when I had asked why they were doing so many of a certain kind of test, the person I asked responded with a line about policy.  When I asked later about the test, she replied "I wasn't going to ask you again, I just figured you had refused."  I could see that my asking had hurt her feelings, and that questioning had come across as defiance.  It is a delicate balance.

 

So this morning on the phone, I asked the NST nurse, "If I choose not to come in today, is it going to go into my chart that I was uncooperative?"  I am focusing all my energy on getting to birth at the South Hospital, and I don't want one off-handed remark entered into my charts to make me appear adversarial and unreasonable.

 

I have been given a lot of great care through all this, and been treated with immense kindness and dedication in most cases. In many cases I have yielded to the protocols because I am just so tired, or because even though I didn't agree with a particular protocol in a small matter, the anger I might generate in people who could later make choices that would effect the outcome of my care wasn't worth the risk.

 

So I am going in tomorrow for yet another NST (even though I will be back there on Friday, and even though the baby is fine, kicking constantly and has been fine for EVERY SINGLE TEST they have given it).   It's all politics.  I  am re-learning how to play the game.  Give-in here so that you can get what you need there.  It is an alien world to me after all these years of very collaborative pregnancy care. 

 

So I will go.

 

A few more hoops to jump through yet.

 

 

 

 

Seeking Inspiration

 

Jonah boy has re-discovered

 his electric guitar.  When he gets ready to play, he sets the dials and then looks for the button that will play that special song (this week it has been Message in a Bottle by The Police).  Once his fingers are all in place, he shuts his eyes. thrusts his head back and goes into his zone.  He doesn't rock out.  Quite to the contrary, he holds very still and focuses on the strings he strums with those pudgy, dirt-crusted fingers, coaxing little chords here and there from the rainbow plastic while the song plays on. 

 

And it is not about the audience.  It is the experience.  He doesn't care if he is alone or in a room full of people, he just goes there, to that wonderful place in his cute little head. 

 

*****

 

I have been thinking about the nature of Faith lately.  I used to think Faith was believing IN God.  Believing that he exists, sharing that belief with others, making choices based on that belief.

 

I am coming to understand that Faith is also Believing God.

Believing that He means what He has said.

Believing Him.

 

When everything was happening so fast and furiously in the hospital, we were drawn every minute to counsel with God.  It was like He was our Compass that we held in our hand to look to as each new choice was presented to us.  We were constantly seeking inspiration in bold bursts, and then immediately making decisions based on the feelings that followed.

 

Things have slowed down now.  The bad news has gone from a raging fire hose to a trickling sink.  Even when it does come in bigger bursts, it doesn't seem to phase us as much.  I take the bad news and sort it off to the side, like one does mail intended for another person.  There is the pile of things for me to worry about, and the things for God to worry about. 

 

As I pray, I am in a juggling act between the "ask and ye shall receive" promises found in scripture, and the "Thy will be done" that we are all supposed to humbly surrender to.  There are still things that we would like to have happen, but after all that has happened, to ask for them now seems selfish.  I would like my leg to stop hurting.  I wonder every day if this will be my new existence, "Sorry kids, Mommy can't, she has to put her leg up."  On days when it hurts a lot, like the last several days, I panic thinking that the clot is coming back, something I will be at a 30% risk for the rest of my life.  I want to ask not to live in fear, not to have to worry about that happening, but that is not realistic.  I won't necessarily have to "worry", but I will always have to be cautious, and frankly, to me, it's hard to feel the difference between the two.

 

And then there is the strangeness of the nature of trials.  It turns out that while we all get our turn, there is no actual turn taking when it comes to experiencing hardship.  There isn't a line we wait in, knowing somehow that the next one is coming.  There isn't a "trial-quota" that once reached, cannot be surpassed.  Trials are not like chicken-pox, endured once, never to return.  They just come.

 

I used to imagine that certainly after 4 miscarriages I had maxed out.  Then, when a trial hit our lives that I chose not to share here, I thought we had created a cosmic insurance policy that would absolve us from any future griefs of it's kind.

 

Then all this happened, and happened again, and I have suddenly become aware that there is no limit to the amount of suffering one person or family may face.  And with no assurance that pain and grief will expire, we look for other assurances.

 

That the pain somehow won't hurt as much.

That a miracle will happen.

That our faith will grow so strong that somehow the outcome, whatever it is, will be something we can face and accept.

 

And I guess for me this is where the faith has been stepping into play.  I will be challenged.  I will experience loss and grief for the rest of my life.  They are as sure to come as Jonah's messes on my kitchen floor. 

 

Faith lies in my capacity to move the fear and the pain over to God's pile.  To let Him carry it.  To believe him when He says He will be on my right and on my left.  Faith isn't in the end, it is in the enduring.  Faith isn't never wavering, it is getting your footing back after you do.  Faith is in understanding that having no control over the outcome does not mean having no control over the way you accept that outcome, and how you act in the process.

 

I'm not there yet.

 

So I close my eyes, and lean back my head to heaven, and seek. 

 

 

****

 

 

 

More inspiration...

Photos by Tessa