Unexpected Celebrations

 

My heart has wings today.

 

 

On Sunday night at 9:40 the phone rang.  I was surprised when I saw it was the hospital, but figured it would be a recorded appointment reminder.  Instead, a pleasant voice on the other end introduced herself as Deborah, Chief midwife at the South hospital.  She called to talk to me about our birth.

 

We have been in negotiations for the past two weeks between our High Risk OB from the North hospital and South hospital's OB administration where we want to have the baby.  Our OB was worried about the lower risk hospital being able to manage my blood thinners, but South's only concern was actually having me be on continuous monitoring while in the labor tub, a sometimes difficult feat.

 

I told her I would make it my priority to keep heart tones on baby or get out of the tub. We talked a long time.  I didn't have to convince her how important birth was to me, she is a midwife, she gets it.  

She said I was "extremely reasonable" in my expectations, and by the end of the call gave me her schedule for the month, saying she hoped she would be my midwife on the day I gave birth.  She promised to advocate for me with the doctors to help me get the birth I hope for.

 

But a lot depended on today's big appointment...

 It has become our routine. 

Weight, samples, blood tests, non-stress test,

 amniotic fluid level test, brain blood-flow test...

 

We have gotten so used to scary news that it has come to be expected.

But today was all good.

 

The baby's heart rate was great,

baby is estimated to weight 5 1/2 lbs,

fluid levels are perfect,

and most importantly, baby's brain blood-flow is perfect.

 

And because of those results, some things changed,

and in a very good way.

 

First, and my favorite...

 we just added a week to this pregnancy. 

 It's official, I am going to get to stay pregnant for 39 weeks! 

A successful induction that does not end in a cesarean

is far more likely at that point. 

 

Next, though we are still waiting for confirmation from the South hospital,

 we have been given the thumbs up by our high risk OB

 to birth at the South hospital where they have:

labor tubs,

"Baby-Friendly Accredidation"

(the only hospital in Sacramento that can boast that,

which means more natural practices, lower intervention rates

 and 24 hours midwives),

and a big thumbs up to be attended by

a midwife!

 

I am keeping my mind open to the possibilities of things not playing out that way. 

 My pain level is pretty high, and when push comes to shove that may change things.

 I am getting really good at accepting change.

But for today, I will enjoy the great news we have had,

and hope for more to come.

Keely's beautiful artwork.

 

A few of our traditions have managed to slip past the interventions and complications. 

Respect and honor for pregnancy has always been part of my role as a doula, and something I enjoy as a mama.  We had no idea we would still be pregnant at this point, so I am tickled to have had the opportunity to celebrate this growing belly with henna.  Who knows that we might not still be able to bring this baby into the world more naturally than we had supposed?

Thoughts from the hammock

A conversation with my sweetie:

"Why are you into

working on the yard all of a sudden?"

 

"What do you mean?"

 

"I thought you didn't like yard work."

 

"I don't, but you can't do it now, and I know it matters to you."

 

*****

 

I wandered out to the back yard to watch Guy plant some of the lovely flowers he bought.  A few weeks ago a crew of church folks came and cleaned winter's death from the ground, and left it welcoming and hopeful for Spring.  I followed Guy's hands as he worked and felt the itch in my arms to join him; the imaginary soil under my nails.  The whispers of "need to" and "should" in my heart began their little battle with the logic-and-practicality lobes of my brain.  Gardening makes me want to work, plan, improve, perfect.

After Guy felt done planting (though there were plants still waiting their turn from their black plastic pots), he sat down in the hammock.  He has the gift of being able to be "done" and not have to work himself into the ground.  The hammock scene called to me, so I made my way across the uneven lawn and settled in under his arm.

At first, I only noticed his arm under my head and the feel of the hammock on my back.  My mind was an airport terminal of weary travelers waiting their turn to be processed.  Soon the tree above us groaned, barely beckoning me away from my crowd of frustrated thoughts, the carousel of un-handled baggage going round and round and round in my mind.  A bold squirrel with huge black eyes, who clearly owns the yard, emerged from the mulberry  and demanded, "What is the meaning of this?" with his arched tail.  Bird's voices, that had been there all along, began to ease over the rickety fence and to stretch down from hidden places in the trees.  Somewhere, dozens of somewheres, a chorus of wind chimes sang together as though they were sharing the same secret. 

A sudden raucous gust of wind lifted the gently bobbing spring branches over our heads with a whip and a thrilling wave, and raised up music from the new leaves like a rushing green river.  I fell up, into the branches, and was engulfed by the intensity that mocked how un-noteworthy a moment this was.  My vision held only the branches overhead as they settled into whispers of sea foam that meets wet sand, only to leap again like a crowd in a grandstand in united celebration with the next gust of wind.  A hummingbird buzzed through the shuffling green-clad crowd and somehow found easy footing on a slender, swimming branch.

I floated up beside it and held on.  Suddenly nothing mattered in my head anymore, just the rush and thunder and calm of the wind in the trees that, despite my inattention, had always been there.

*****

 

In the past few days I have been hearing so many "should's";
- in my own harsh mind,
- on the lips of friends as they question their parenting abilities,
- and in articles and posts from people I have never met that scream at me
 in yellow highlighter
 where my shortcomings lie.
 
When I focus all of my attention on them, they seem so important. 

*
Then I listen...

 

My friend Ellen hears me critique myself and gently points out how I gravitate towards self-shaming.

 

Kind Chantal reminds me over and over that we are all on our own journey, all of us trying, and that our Creator would never judge us as harshly as we often judge ourselves.

My gentle husband reminds me that my own heart is where
 I have always found my greatest answers.

Wise Amanda points me to all that I am doing right.

And Kathy, her heart as open as the sky, takes my concerns, wraps them lovingly,
and hands them back to me with all of their sharp edges carefully tucked away.

*****
For the past two years, there have been no irises.
This winter was so cold it killed my 13 year old rose geranium,
but because of the harshness of winter, the irises have produced a bounty
 to be envied by a seasoned gardener... which I am not.

*****
I have given away cuttings from my old geranium to many people over the years.
I know I can get a cutting from one of them, and start over again.

*****
The loveliest spots in my garden this year have surprised me.  They are the places
 I have been cultivating for years in my awkward way. 
It took the efforts of others to bring the polish to my flowering beds,
but what was there
was already going to be beautiful.

New Arrangements

First night in the new bed.  Time to paint, at least that one wall!

 

 "Mama, 'ah-'mon!

 Ah jump'a tyam-po-yeeeeen!!!! 

 Ge'yup mama! 'ah-mon!"

 

I laid on the couch like the moment you are awakened from a deep sleep by a sudden, explosive sound, not knowing at all where you are or what is happening.  Grog clouds the brain, yet your heart pounds like you have just flown out of the starting gate at a dog race.  It was just after the first hospitalization, just after the first procedure.  We had a lot of adjustments to make.

 

"I am so sorry, baby.  Mama can't jump on the trampoline with you," I said as he pulled on my shaky hand, and even in my deep fog, the humor of the moment reached me. 

 

Though that was many weeks ago, we are still adjusting.  I am managing to do more each day, and learning to handle bad news like baseballs in a bating cage, but there are things that have changed that won't be returning to what we once called normal.  There are disappointments that don't show in an ultrasound or a messy house, that only matter to me and my sweetie.

 

From the minute I was put on a blood thinner, my plans of having another homebirth dissolved.  There was no discussion, no pros and cons list, no prayer to help decide.  It just was. 

 

I know, I just lost most of you.

 

You can stop reading.  Most people don't think I should have an opinion anymore about how my birth goes.  "You should just be hoping for a healthy baby", I am told, as though by wanting a good experience I am simultaneously disregarding my baby's safety.  I just have to ask, must we throw the birth out with the bathwater?

 

What may seem to some a simple change in venue has become a change in the axis of my planet.  It is kind of like having to suddenly change nationality or religion or some other deeply ingrained and heartfelt identity.  Maybe compare it to your beliefs about health care or politics.  I have only had one baby in the hospital, and it was a miserable experience.  The subsequent choice to avoid the hospital birth machine, with all of its policies and protocols, its shift changes and intrusions, and the dozens of personalities that could be encountered in one long labor, was a hard one at which to arrive.  We had to battle the ignorance of people who accused us of selfishness and "wanting to hurt" our baby, who had arrived at those opinions without study or research, and who held on to mythical notions of birth they had acquired from a lifetime of TV sit-com birth scenarios or second hand horror stories as their textbooks on the subject.

 

Our next birth was simple and beautiful, and at home.  The three after that were hard, but not terrifying.  I was safely cared for by a midwife who measures her experience in the fat little faces of 2,000 healthy babies.   Add to that the experience of four miscarriages at home, labors included, and we have worn a comfortable groove in the way we bring our babies into the world.  With each birth, my way of laboring was not dictated to me.  No one ever told me when to push.  No one nagged or said "you have to do it this way, these are the rules," because birth doesn't create rules for itself, institutions do.

 

But now I have fallen outside the lines of safe and normal, and suddenly there is a need for the institution, with all it's rules.  And please understand, I am grateful.  I didn't want it when I didn't need it, but now that I do, I am happy to accept the help available to me to keep me and my baby alive and safe.  But even the simple guidelines I have held golden, like telling my doula clients not to rush to the hospital until labor is well established, are ones I cannot follow.  I will need to be induced in order to manage the blood thinners so I don't hemorrhage, and to have the baby closely monitored during labor in the event of an abruption.  Gone is the notion of walking along the river in early labor, going to a puppet show, and  having lunch with Guy and Francine while I laugh and breathe through early labor.  

 

Mine will be the labor of a woman with an IV, with fluorescent lights, with noisy machines, with nurses constantly scanning my wrist bracelet for my member identification number with their little grocery-store beepers.  Certainly, I know what to expect.  I've been to labors at the hospital with dozens of clients before.  Sometimes I would watch a woman labor and think to myself, "I don't know how she's doing this here!  I could never do this in a hospital."  I would see her struggling and think about how, at home, I would be able to get through this part of labor so much easier if I were in my own space with my own things around me.  I would see the intrusions of strangers with no way to defend her from their voices and noise and perfume and opinions.  Some don't understand why I would opt to feel the sensations of labor when the drugs that would take those feelings away are so close at hand.  They have been trained to minimize pain, and they don't seem to understand that the pain has a purpose and a benefit in the grand scheme of this beautiful system.  

 

And I still believe it is a beautiful system.  I believe birth can and should be a gentle, family building experience.  I am not ready to give up everything.

 

*****

 

Yesterday the boys built Jonah's new toddler bed.  He had long ago outgrown the large wooden cradle on the floor in our room, and had moved to a foam pad on the floor.  We've had the bed, but we just had to figure out how to shuffle things around.  Would we put him in the den, Adam's room?  Finally, we settled on the girls room.  It is not ideal, but he doesn't seem to mind the pink yet.

 

*****

 

We are rearranging things. 

 Spaces, expectations, paradigms.

I had never imagined I would be pregnant again. 

I certainly never imagined all that has come because of it. 

I haven't figured out how to shuffle things around in my head yet,

but we will figure out how to make it work.

Remebering

 

I haven't ventured out of the house since February without heading for a doctor's office, so last night after an appointment my sweetie took me to the Art Museum for a little while.  As he pushed me in the wheelchair through the galleries, I rested my head against his tummy.  At first I felt weird about being pushed in the chair, but it was clear in just a few minutes that we moved together the same as always, whether I was taking the steps or not.

The weeks of stress melted a little as we talked about the paintings.  When we moved to the pottery exhibit, we played our little game of "pick one", where we choose one thing in each room to pretend to take home.  He let his hand settle on my shoulders now and then, and as I reached up to take his hand I was reminded of our trip to the ER with him ten days before.

That afternoon as we got in the car, I sat in the back seat with my leg up while Bishop drove.  I felt so far away from Guy.  Each time he would ask a question about how he got home or if he had played the organ at church, only to be startled by answers he didn't remember, I wanted to hold him and comfort him.  All I could do is reach for his hand and hold it from the back seat.

"Do you remember the first time we ever held hands?"  I asked him, trying to take him someplace else.

"It was just like this." he said, and I felt such comfort that he could remember.

It had been a road trip.  We took a friend to college in Utah, a bunch of us.  By the end of the week, Guy and I were two planets in orbit around one another.  By the time the road took us back home, we were in the same orbit.  As the miles of highway rolled out before us, though Guy was driving and I was in the back seat, my hand rested on the armrest of his seat where his fingertips gently found mine.  Mile after mile we held hands in the dark, half listening to the conversations of the others in the car, entirely aware of each other.  We began falling in love.  It is one of my most cherished memories.

As we drove to the hospital, my heart pounded at the realization that now those precious memories I had with him were threatened, along with everything else we have built together.  When we left the house I had lied to the children that daddy simply wasn't feeling well and that I was taking him to the doctor, but Ethan knew the truth, and the fear I had seen in his eyes now had free range of my face with no one to notice.  My eyes filled with tears as I held onto Guy's fingers from the back seat.

*****

 

Guy has been doing great since that day.  Thank you to all who have asked after him and extended help, not just for me, but for him.  He says he feels fine, but of course, he said that before this incident.  It has been hard to even think about what might have happened to him that day.  When I see him stressed or tired I do worry more than before.  I hope to return soon to being more of the wife he knows to take some of the weight of our lives back into proper balance.  I am so grateful for all of the help we have received and know we will need less and less in the coming days (I "made dinner" for the first time the other night, if dumping frozen chicken and coconut milk in a crock pot counts as cooking). I am getting around better, and even went to the doctor without the wheelchair yesterday. 
I know we will get there eventually.
 

 *****
 

Going to the museum, stepping out of stress and worry

 and back into something familiar for a little while, was so nice.
 

 And I am glad,

 Guy remembers.

 



Happy Birthday Tessa (and Baby Update)

 

Seven years ago a little girl entered the world.

She took her time.  She made her mama wait.  She was soooooo worth it.

 

I went into labor with Tessa in the morning, which I had never done before.  It was strange to labor in the sunlight, but I love sunlight, and I loved being in labor with her.  It was a Saturday and we had planned to go to the amazing Russian marionette puppet show that day.  I was sad I would miss it.  Then I decided, why miss it?  So we went.  We sat in the back row of the library, Guy on one side of me, Francine on the other, and I rode the waves of the contractions as the ripples of children's laughter cascaded over me.  It was joyous.  On the way out I told our Children's Librarian "Hey, guess what?  I'm in labor."  He blanched white and said, "I am not a taxi driver!  I don't deliver babies!!!"

 

We came home to eat and then would have headed to the river, but I was overcome with a shift in my labor, so the kids were shuffled off to friend's houses and we got to work.

 

I remember at one point kneeling in the labor tub, sunlight bouncing gloriously around the room.  The contractions were strong but I was able to visit and laugh in between, even at 8 centimeters dilation.  I looked around me and smiled and said, "This is how I always pictured it.  This is JUST what I wanted." 

 

At some point Guy and I snuggled and even smooched a little.  I sang during the hard contractions and the pain was lessened by my concentration on deep breathing and the familiarity of the songs.  The night wore on and finally Tessa came.  I watched her being born and I was astounded.  I reached to catch her but my hands trembled too much.  Claudette lifted her up to me and I don't think I let go of her for the next four months.

 

Tessa is a dear.  She is serious and smart and helpful.  She is kind and imaginative.  She loves life, and laughing, and loves her siblings.  She is gentle and refined.

 

I always feel sad when my kiddos hit age seven.  There is a bend in the road this year that takes them away from pudgy baby faces and dimpled knees.  They start to wake up to the great big world and it's possibilities.  They begin to care about friends more than cuddles, and they start really gettin' their sassy on.  But here she is, such a big girl.  And in years to come I will look back at this post and think she looked so tiny.

 

Big or small, I love this girl.

 

Daddy took over cake duty and did a smashing job.  I had luckily prepped the dairy free frosting a while back and had it stored, and amazingly Guy and I had happened to do the birthday shopping the week before I went into the hospital for our first date night since the last hospital stay.  I couldn't stay up long enough to do one of my elaborate cakes, so I let the girls plan and decorate the cake.  They did a great job.

 

See the yellow flash? 

 That is a flying Cinderella doll. 

 The boys were fascinated by her and kept picking her up, and I would grab the camera but never quite catch them in action playing with the doll.  That doll hit the floor no less than six times, poor thing!

 

***

Baby Update:

 

Baby was a little uncooperative at the last NST, and the nurse didn't accept my input that baby was asleep.  Cuz, like, what could I possibly know?  I only house the tiny human IN MY BODY, so what would I know?  They did that awful zappy-noise thing to it to stimulate it and get it to move.  Poor baby jumped so hard.  Finally, baby woke up and started behaving just as perfectly as it always has in previous NSTs.

 

As of today I am 32 weeks.  This means that a cesarean is no longer required to keep the baby from having a cranial bleed when being born.

 

So one of the many reasons for a cesarean;

fetal distress,

red blood cell damage,

clots on the placenta,

abruption, and

extreme prematurity...

 

has been checked off the list.

 

And if baby waits at least 3 more weeks, we can have a birth at the hospital we want where they have labor tubs.

 

It may seem strange that I have hopes for any particular comforts for our birth experience, but we have lost so much already, that if there are things we don't have to throw out, we won't.

 

But that is another post.

 

 

Back to Gratitude

 

I took a wrong turn the other day.

 

(Not on the road, though I totally made us late for my 7AM ultrasound by having Guy go to the wrong city). 

 

My wrong turn was that I let go of my commitment not to complain

 (to be very clear here, I DO express my feelings about what is happening, and even talk about what is hard, but I haven't wanted to go to the "why me?" pity party).   I didn't plan on it or anything, but I'd had a really rough morning.  I had been bumbling around our ridiculously poorly designed kitchen in my wheelchair, trying to scramble some eggs.  Every move I wanted to make took twenty moves to execute.  I finally sat right there by the stove and ate, but for some reason afterward I blacked out.  I felt my eyes roll up in my head and my head flop over.  I was alone with poor Tessa and Jonah, and she was the only help I had.  I asked her for water, and she brought me a kiddie cup with about 2 tablespoons of water in it.  I drank it and said "more, sweetie, lots more".  She gave me more, and then I had her wheel me to the couch.  I rolled off the wheelchair onto the couch and then taught her how to call 911 in case I really passed out.  She told me later that she ran down to her room to pray for me.  My heart broke that she felt so scared.

 

A while later as I was trying to call a resistant Jonah to me to change his sopping wet diaper, the doctor called to schedule another test.  Suddenly Tessa began to wail and came running to me with a large cut on her heal.  She had slipped on the old wooden stairs in the garage.  I couldn't hear the man on the phone over her sobbs, Jonah ran wild, and Tessa couldn't be calmed enough to get the bandages so I could help her.

 

I felt like a helpless child.

 

I called my neighbor/friend Denise to come patch up Tessa, and implored her to change Jonah while she was here.  In those moments the seeds of frustration got a foothold.  I complained.

 

Not just to Denise, but to a couple of other people, too.  Krista came later to take me to a blood test, and I audaciously vented my woes.  My sweet sister-in-law called and I gave her an earful too.  I was in full whine mode.

 

And a very sorry thing happened.  I felt all the strength and courage I had been mustering these past many weeks drain out of me like a leaky air mattress.  I began to feel like a victim.  I filled with darkness.  A feeling of despair and shame and embarrassment came over me like a storm cloud. 

 

From that time on for the next few days I felt ashamed at every call and visit that came with offers to help.  I understood why I had lost my grip; fatigue and feeling out of control is wearing on a soul, but that didn't take away the feeling of loss that I suddenly felt.  I had lost hold of the medicine that has been keeping me afloat; the hope and faith and energy that was keeping my nose above water.

 

There is a quote from Anne of Green Gables, "To despair is to turn your back on God".  I realized I had to shift back to that place of gratitude that has seen me through much harder days than these past few.  I had to apologize for willingly letting go of peace and opening my heart to discouragement; to others, to God and to myself.  I recommitted to stand in a place of gratitude and to use that as a platform from every interaction, regardless of what might be happening in my body.

 

It is amazing how much energy I wasted in those few days.  It was very draining to be negative.  It dawned on me that I had actually undermined my own healing pace, and in doing so cut myself off from the one bit of control I have in this situation; I may not be able to change what is happening in my body, but I don't need to create a nasty chemical soup in my bloodstream for my body and baby to marinade in.  The best chance I have at getting better is to hang on to hope and peace and gratitude; to fill my body with endorphins and my heart with the Spirit.

Test results have been coming in the days since.  A leg scan that only showed small improvement, but at least no decline. Baby still looks great.  A new challenge has popped up, with ferocious muscle spasms in my back that seem to have no explanation.  After 6 hours of tazer-like jolts in my back last night I was pretty worn out, but my heart was okay, because I have found my gratitude again.  I refuse to let this new challenge change who I can become. 

I listened to conference today from the tub, where I spent almost 5 hours today to control the spasms.  It turns out the muscle relaxants they gave me aren't very safe with my other medication (of course!) so I may become a mermaid before this baby is born.  But that's okay.  I am back to gratitude.

Loving on Krista's little Lainey while Krista graciously cleaned my kitchen.

*****************


A special request for prayers for my dear friend Stephanie who was diagnosed with cancer yesterday.  I know she will be blessed, but I can't imagine how hard this is for her.  Please pray for her and send her healing thoughts.

No, I'm not kidding.

Guy left for church late and frazzled yesterday morning.  He was supposed to fill in on the organ, and learned when he arrived that a speaker had canceled and he would also be filling in at the last minute there.  He ran up on the stand to sit down after the meeting was already underway.

Between meetings he came home, fed me, got me my shot and got Jonah ready, and then went back to church.  At the end of church, the family piled through the door and began the ritual hunger-announcing and clothes-shedding.  Guy sat at the end of the bed staring out the window.  I asked if he was okay, and he turned and looked at me with a red face and eyes full of tears.  "I don't know what's happening.  I can't remember anything."

I called him over to me and started asking questions.  Nothing.  He didn't remember the day before, that morning, playing the organ, speaking, or coming home to feed me.  He had no idea how he got the kids home.  He was terrified and held back tears.

I assessed him for a stroke, but didn't see anything physical happening.  I talked to him for a few minutes and decided this wasn't just a momentary lapse.  He had no memory of the day, or much of the day before.  I didn't know what else to do... I called Kathy and Bishop.

I told Guy to lay down, and I got dressed, rallied the kids, got my walker, and packed my medicine and some food.  Guy sat on the bed staring at his medical card on his lap.  His expression was blank, and dull, and he looked like he was just calmly waiting in line at a grocery store.

Bishop came and put us into the car.  As we drove, every few minutes Guy would ask with sudden concern, "Did I play the organ?"  I learned quickly to just say yes, without more details.  The more he realized he had forgotten each time his mind looped, the more upset it made him.  Once in a while he would ask how he got home, and looked very shocked each time I told him he had driven, particularly knowing he had driven the kids. 

At the front desk, the clerk asked why we were there.  I could see Guy in the security monitor, hands in pockets, aloofly gazing around the room, and I whispered "I think my husband may be having a stroke."  The woman startled, and wide-eyed, asked, "Him?!".  Yes, I told her, explaining about the sudden lapse in memory.  She hurried us into triage, and the nurse there quickly assessed him and moved him into a room.

Guy was on auto pilot.  He did what he was told.  He flatly answered questions.  He startled sometimes when I was asked to answer for him, not prepared to hear about things he had done unknowingly. 

As the next hour went by, wisps of memory began to return, beginning with the furthest memories lost, those of an Easter Egg hunt at our friends house the day before, and later, of us watching movies in bed in the evening.  Between CAT scans, EKG, chest xrays, and blood tests, more memories began to return.  Soon he could remember the morning stress, being late, and snatches of church.

The doctor came in twice, once when the preliminary tests came back looking reassuring, and again later when all tests came back ruling out a stroke, heart attack or some other neurological event.  We were told (both times, though Guy didn't really retain it the first time around) that Guy had had a rare event (there's that word again) called Transient Global Amnesia.  With no head trauma or any other physical cause, it is a result of extreme stress, emotional trauma and physical exhaustion.  It's almost a wonder it didn't happen sooner.  Guy said it should have happened for April Fool's day.  Kinda not funny.

We were told TGA's almost never recur, are not a foreshadowing of stroke or other looming crisis, and they usually resolve in a few hours, though his memories may never return for the missed time.

I can only say right now that I am grateful it waited until I was out of the hospital so that I could be with him, for each of our sakes, and for the kids.  The big boys are traumatized.

Bishop took us home to his house, and Kathy created a Loaves and Fishes miracle, making her Easter dinner stretch to feed two large families with plenty left over.  My kids even got to dye eggs with them.  What a blessing they have been to our family.

I didn't fare too well.  The Micro PEs are pounding me, and 4 hours in the wheelchair finished the job.  Guy is asleep beside me on the couch right now.  I am so grateful he is okay.

Normal

"He says it's time

to let go. Everyhing is going to be alright."

 

"How do you know? How do you know something bad isn't going to happen?"

 

"I don't." 

                                                                                    

                                                                 ~Dory and Merlin, from Finding Nemo

 

The nice thing about going through a trial when you have little kids is that having fun remains a priority for them no matter how difficult things are.  So tonight we watched Finding Nemo.  I am glad.  It is always good to be reminded.

 

***

 

When we headed out for our appointment with Dr. M. this morning, I didn't even feel nervous.  It wasn't because I knew everything was going to turn out the way I hoped, but because at this point, surrender has become the standard protocol here.

 

On the way we discussed the worse case scenario for the day: Baby might have increased blood flow to the brain, would be scanned again in a few days or a week, and ultimately it would be decided to transfuse the baby or deliver early.  But it wouldn't be today.  We would have, at the very least, a few days to prepare, if not two weeks. 

 

When we got to our appointment, a nice nurse named Chris did a scan of baby's amniotic fluid levels and said they were great, at about 18.  We also learned baby was breech.  But though Dr. M. had said in the hospital he would be scanning the baby's brain to check for blood flow problems due to my RH sensitization, they didn't have us on the schedule.  That was remedied quickly, and soon we were checking on baby with Dr. M. 

 

His hands moved like lightning, and he assessed the baby, which by that time had managed to turn sideways.  He measured little bones and belly, head size and then the blood flow.  It was amazing to actually see the blood pumping through the baby's tiny brain like a blue and red neon seagull, pulsing and throbbing, glowing with health.

 

"This looks great to me," the doctor said, saying he would crunch the numbers with his computer program based on gestational age to get exact ranges.

 

Back in his office, everything checked out.  Baby measured even a few days ahead of it's age, and the baby's blood flow in the brain was absolutely perfect.  "Normal", he kept saying.

 

We reveled in smiles and celebration.  Dr. M., who I have taken a while to warm up to due to his propensity to deliver a lot of intense news in a very short time, has really fought for us.  I hugged him, and he happily accepted.  I told Dr. M. that with this news, I have moved into the 2% category.

 

"Oh, no.  You're still my 1%," he smiled with a raised eyebrow.  Still, we have had little good news lately that did not have to battle it's way through the dark clouds of despair, risk and heart wrenching choices into the light.  Being rare and unusual, as he calls me, hasn't felt good.

Normal, that feels amazing.

 

Just as we have learned to take the blows of recent weeks one at a time without asking why, we settled into the peace of the moments after the appointment with warmth and instant gratitude, which lately has been so easy to find in tiny doses.  Though spring petals have not yet begun to fall, our pathway home was scattered with them like the confetti of a parade.

 

***

 

We will be going twice a week for Non-Stress Tests on the baby's heart, and every two weeks we will take another look at the brain.  Tests of my blood thinner levels will be every week to two weeks as well. 

I look forward to more, very boring, ultra-ordinary

NORMAL.

 

Dr. M, Baby and 1%.

Blessed and blessed

 

Guy dreamed last night that he was on a roller coaster and he wasn't strapped in.  Sitting sideways in the seat, he was trying to strap himself in, all the while holding on for dear life.

It was a dream and it wasn't.

 

***

 

As of Tuesday afternoon, the Chief of Radiology had agreed with my Perinatologist, Dr. M and my Interventional Radiologist (I.R.), Dr. F. that I should have the filter placed to take me out of danger of a pulmonary embolism and let the baby stay in me longer.  Dr. F. had arranged with his friend up where we were at Roseville to do the procedure, and they were prepping me for it, and even came in and told me to be ready to go any time.  A few hours went by and a nurse came in at about 10PM and said that to make sure my blood thinners had dropped in their levels to make it safe enough, they would wait until morning.

 

I was relieved.  I had been scared about the prep being done right, and it was helpful that I would have a few hours to wrap my head around everything.  I got about 4 hours of sleep.

 

The next morning Guy came very early.  We waited and waited.  The resident and then Dr. M. visited and said that it was a go, and we were just waiting to hear from radiology for someone to come give me the run down and sign consents.  After a few hours, my awesome nurse, Steph, began calling and even took her break time to go past radiology ("I happened to be in the neighborhood," she has said), only to learn I was not on the schedule at all.  A flurry of phone calls, begun by our amazing nurse manager Marina, revealed that while the Chief had approved it, and the Roseville IR from the day before had agreed to proceed, the IR that was on yesterday refused to do the procedure, feeling it was not the right choice.  Dr. M. still wanted it done as did my I.R. from South Sac, and Marina was going to do everything in her power to help, but for now, my very needed procedure was off.

 

I cried.  This meant no procedure for my leg on Friday either, because who knew now when I could be released safely from the hospital.  I looked into a future of debilitation, pain, and swelling for the rest of my life.  It also meant if I was released, that every time I became short of breath there would be a question of a pulmonary embolism, a rush to the hospital, and likely that awful VQ test with radiation.  It also meant a very early delivery in just 2 weeks and a preemie with problems being tended by strangers in the NICU.  I felt defeated, devastated and like letting go of hope.

 

They brought me my blood thinner shot and I sadly took it, and they brought me a tray of food.  I had been so hungry, but the news had killed my appetite.  In just a few minutes, Dr. M. called. "DON'T EAT!" he said, "We may get your filter after all.  I'll call you right back."  Just then my poor dad called.  I had to cut him off and leave him in the dark, the phone line had to stay open and I was mentally gone.  In a few more minutes Dr. M. called and said that he had been talking to Dr.F. at South Sac hospital.  Dr. F. would try to call his IR friend and get him to come in on his day off to do the procedure.  If he couldn't, they would send me to South, where Dr. F. had agreed to place me on his schedule for the day, and not only do the filter, but take care of clearing the clot from my leg at the same time.  I told Dr. M. to skip trying to get the friend in, I wanted to go South.  Dr. M. said "I am putting in orders for your discharge now.  Guy can drive you straight there."

 

Dr. F. texted me while we were on the road to say they were set up and waiting for my arrival (with a smiley face).  When we arrived, they had me brought straight into pre-op where Dr.  F. was waiting.  I was in the procedure within half an hour. 

 

I chose not to be sedated and just got a local.  I can't justify more chemicals going to this baby just because of my fear.  They draped my whole neck, face and then head.  It was rather smothering, even with the airway they made by lifting the corner of the drape.  They wrapped the baby in a lead blanket that would only be opened slightly when it came time to actually place the filter.  It was very scary as they poked the hole in my neck, cut it wider, and pushed the instruments and catheters through the muscle wall, and I am not ashamed to say it hurt like crazy even with the local.  As they worked I could feel my adrenaline spike and the baby kicked constantly through the whole thing, which was reassuring.  As they opened the blanket to scan lower on my chest and belly, I cried at the radiation our baby was getting.  I noticed at that moment, though, that all the movement of the baby, that up till now had been all over my belly, was pressed up to my left side under the lead blanket.  I tried to pray a spiritual blanket to cover the rest of the baby and protect it. 

 

The filter went in well, and Dr. F. announced it as a success, with very little bleeding.

 

 Next he moved to my leg, and rather than open me up and do an x-ray with contrast dye, he performed an ultrasound first.  He found that like last month, the clot had nearly completely disappeared.  This time more than 95% of the clot was gone from my leg, and the parts that remained were very small.  He said if I were his family member, he would not recommend proceeding with the thrombolysis.  He said that my body is responding so well to the medication that he is confident that in the next few days the clot will be completely clear from my leg.   I trust him implicitly and felt very good about his counsel.  I was observed for a while in Labor and Delivery, and though I felt miserable from pain, hunger, shortness of breath, prednisone let down and sheer exhaustion, they saw no need to keep me.  I came home last night to my sweet, glorious family, my luscious bed, and the best food on the planet (I had lost 6 pounds in 9 days).  Last night I slept in my sweetie’s arms for 10 hours.

 

We are so grateful.  I have had so many sacred experiences throughout this journey.  My nurses were so important to me and certain of them, Julie, Jenn L., Steph and Marina, were the moving forces that gave me the support, counsel and resources that I needed that several times changed the whole course of my care.  Others, like Kelli, Stasia, Michelle, Stacie, Catherine and Sharon stepped into a roll of sister and friend allowing me to process my emotions, or just by spending quality time with me and giving me something else to talk about besides PENDING DOOM.  I don't know that they will remember me, but I will always remember them.

  This experience has been a testimony of prayer and of God’s love for all his children.  This has been a gift for all of us, every soul that has prayed and fasted for us and served our family in any way.  This has not been for me.  I believe this has gone the way it has to show that God has this in his hands, and has been aware of the time frames that needed to take place to get me to the safest place possible at each point.  As we look back at the chaotic path we have traveled, we can see God’s plan as it has unfolded intricately in our lives.  I have split my time in prayer between gratitude,  praying for my baby and praying for all of you. 

With the filter I am now safe to carry the baby to 37 or 38 weeks and there are no imminent plans for a preemie anymore.  We are having a brain scan (ultrasound) of baby tomorrow and are praying that despite all the clot crisis, the baby has been tolerating my RH antibody situation.  I am prepared for another ride on the roller coaster, but hoping that it won’t be necessary for baby to have a transfusion.

So, we are home.  I am exhausted and spending precious time with my family.  We won’t be ready for visits for a day or two, and after that it would really help to get a call first before folks drop by.  I am anxious and thrilled to see you, but I am in a lot of pain from the procedure, and coming down off the meds, so I don’t last very long with company, but please know how grateful I am to all of you.  All my love and gratitude!!!!  We are happy and peaceful.

New Plan!

Behold, the human pincushion.

Big change of plans: After 4 days of random saturation drops and other symptoms of respiratory distress my perinatologist and radiologist agree that I am having Micro Pulmonary Embolisms and that it doesn't make sense to wait around here to have a big one. They will be placing a filter in my chest, likely tomorrow (they may do it today but there is some prep to do with prednisone to keep me from having a reaction to the dye which they need to use but I am allergic to).

Three GREAT things about the filter besides the obvious: The doctor will allow me to stay pregnant up to 37-38 weeks with it in (my favorite bonus!) and baby will be kept safe from needing to be delivered next week.  YAY YAY YAY!!!!  The filter will keep me safer during the birth and eliminate the need for a cesarean (pushing out baby with the clot could break it off causing a PE; the filter will be there to catch it) and the filter will protect me from throwing a clot while in surgery Friday to work on removing the clot from my leg (we are back to were we were a month ago with concern of permanent disability and time is running out to do the procedure). My very cool doc at the other hospital has been very involved and will take care of me for Friday's procedure.

There will be risks, but the risk of prematurity and the risks of a major PE is now justifying the other risks.

My doctor says I am keeping him up nights because I am "so rare" (this from a high risk OB who deals in rare). He called me his "1%" and I had to laugh. Guy keeps teasing that I am just showing off. :) Thanks for your prayers. I feel very cheerful and positive.

Update

Hello from the hospital.

What a ride.

I haven't got the energy for a well thought out post right now, but I can give an update.

So much has happened in so short a time.  My perinatologist told me I am an enigma; they have never seen this happen before, and so my care is moment by moment as there are no rules to follow with this one.  At the moment we are waiting on test results to see if the new levels of medication are being reached.  The last test found we were on the low side, and that was before they raised their goal for the levels (they wanted to be at .7, they were at .6 and some change).  The new goal is 1.2, safe simply because of my nearly double blood volume from pregnancy.  The first test they drew a few days ago was lost by the lab in San Fransisco, so they drew another that they are waiting to hear back on.

My follow up ultrasound showed no change to my blood clot, which is actually good news.  No change means no growth.  We are hoping it will start to reduce like it did before, but lately all of our prayers are going to getting me safe so that we can keep baby inside.  The clot itself is sort of a back burner issue because the threat to my life is still so high right now.

My perinatologist is talking about delivering me at 32 weeks so that baby will be safe enough and then they can start working on getting me safe.  That is in 2 weeks and 2 days.  As long as I am pregnant and because I managed to reform the blood clot while on blood thinners, I am a bit of a ticking time bomb.  Since pregnancy is the cause, getting me un-pregnant is one of the possible and  most obvious solutions. 

I have been having suspicious episodes of low oxygenation and tight lungs, and the doctors think I may be having Micro-pulmonary embolisms, tiny pieces of the clot which break off and go to my lungs causing distress, but not a full blown PE (embolism).  I am on continuous monitoring, and if I get bad then I am on oxygen.  Friday and Saturday were the worst episodes of these, and yesterday was a bit better.  Today has been a little dicey but not as bad as before.  When these episodes happen, I am suddenly overwhelmed with sleepiness, but when I close my eyes and drift off, I suddenly drop in oxygenation and my alarm goes off.  The drop had not been a big enough drop (into the low 90's) for the nurses to get worried, but then the alarm would wake me, I would breathe, alarm off, doze, O2 drop, alarm, wake, breathe... over and over every 1-3 minutes for over an hour before I had the strength to call for help.  The second event was dropping me into the mid to low 80's, and I am not sure why the nurses were not on top of it, but a later nurse took it very seriously and got a plan put in place to make it so that I don't have to get distressed before I get relief.  Unfortunately, by giving me control of my own oxygen use - having it available to grab if I feel "off"- has made it so that they don't know if I am saturating well on my own or requiring O2, so they had turned it off again, but I began the cycle of drops and am on the O2 at this moment.  Before I can go home they will need to scan my leg again to check the clot size, make sure my levels are okay on the blood thinners, and establish that I am no longer having breathing problems. 

I am researching cord blood banking for the baby in the event the radiation exposure causes cancer later in life.  Looks like it will be $2000-$4000 dollars.  We are also trying to track down an RV so that I can stay here on site after they release me so as to be close to baby if it is in the NICU.  If I can make it to 35 weeks, baby may not have to stay.  Wouldn't that be wonderful? 

My spirits are pretty good.  I do have my moments.  I cry sometimes, but am trying very hard to keep positive hormones flowing throughout my body so that I am creating the most healing chemical environment possible.  I pray a lot.  I ask God to protect the baby and keep me safe so that I can keep the baby inside me and be a mama to all SIX of my sweet kiddos.  I tell him my heart and all that I hope for in detail, if that is His will for me.

Your prayers are so important in all of this.  Each person who prays for me becomes a partner in this plan as it unfolds, and healing and miracles that take place are being called down from heaven by each person who shares their faith with me in that way.  God is using this for His purposes, and I am humbled to be part of the process as he brings others into connection with the Spirit and their capacity to call upon their creator.  I pray each day for you, prayers of gratitude for the offerings that have come in so many ways.  There have been no small offerings of love and support.  I testify that we are God's children and that he loves us, and while I don't know how this will ultimately unfold, I believe we will be held by Him throughout the coming months.

A Message From A Friend

 Dear Friends

My name is Ruth. Laine has given me the incredible honor of updating all of you who read this wonderful blog.
Two nights ago, she began experiencing more symptoms that were blood clot related, including shortness of breath. So at 2 am she and Guy loaded themselves into the car, and drove, once again, to the hospital.  The biggest concern at this point was Pulmonary Embolism. The fancy term for  "that blood clot has now broken off and made it's way into your lung". Of course, they did a scan to reveal

Clear lungs.

But they need to do a MRI  on her leg to find out why these symptoms were returning. This news, however, was not so encouraging. Not only has the blood clot returned...it is worse than before. While huge last time, it only effected one vein...now it is blocking multiple veins. So what's the next course of action? First things first, they increased the medication they were giving to thin out her blood. Next they discussed the option of having a procedure to place a filter that would block any clots from getting to her lungs.  This would entail taking her off of the blood thinners before the procedure ( too much risk of bleeding out) and it would put the baby at risk of radiation exposure. A team of Interventional Radiologists, and Perinatalogists could not come to agreement as to whether or not this was the best way to go. They were split. Half were for the procedure, half were against. They were going to leave this impossible decision to Guy and Laine. Come to find out, if the filter were placed, #1 it would need to be removed with-in a few weeks. Laine would like to still be pregnant in a few weeks for the sake of a growing baby. And if she is still pregnant, there is still risk of clots forming. #2  There is a risk of a new blood clot forming around the filter...kind of defeating the purpose. So this team met again, and after much prayer on Guy and Laine's part...the doctors reached an agreement. Apparently, they each had information the other needed. They all decided against it. The good news here...one of the IRs that Guy and Laine had been working with did not factor in the medicine dosage that during pregnancy, a woman's blood volume increases. 

Why is this good news?

  Because they then realized that the amount of medication they were giving her would not effect her the way it would effect a non-pregnant woman. Once again. they are increasing the medication and they will be checking the levels to see if it is having any effect. Needless to say, she will be in the hospital for a few more days. If the levels are safe enough, they will send her home.

Laine has gone from concern over the blood clot, to complete and utter joy at God's intervention, back down to more concern and fear over a new blood clot.  But one thing remains constant. Her knowledge that God is in complete control over this entire situation, and her trust that His will is perfect. I have said this before, please allow me to say it again.

The God we serve is a kind, loving, faithful, and GOOD God.

He will not leave Laine and Guy to walk this path alone. He has shown Himself in big and little ways all throughout this entire situation, and I believe He will continue to do so. I believe in the power of prayer. I have seen God work in unfathomable ways. I have seen Him heal miraculously, and I have seen Him use the medical profession. I know that when we seek Him with all our hearts, He will show Himself in ways we don't expect. This is my prayer for sweet Laine and Guy. That they will see Him everyday in little and big ways, reminding them that He is there with them. That He will give them wisdom and understanding when the doctors bring new information. I am praying that He will give the doctors wisdom as they put together a plan for Laine's continued care. And most of all I am praying that they will feel His perfect peace that surpasses all understanding.

I have been asking God why this is going the way it has. Why did He remove the clot only to allow another more aggressive clot to form. I wish I had and answer, and I pray that one day soon, we will. But until then, I am praying this verse:

"I will lead the blind by ways they have not know, along unfamiliar paths I will guide them; I will turn the darkness into light before them, and make the rough places smooth. These are the things I will do; I will not forsake them." Isaiah 42:16

Thank you for allowing me to share with you. I know that Laine values the prayers and encouragement from all of you. Please take a moment if you will and leave her a comment of encouragement. I know that she has blessed so many of us, let's take this opportunity to bless her.

Acceptance



 

(Baby update at the bottom)

 



Guy sat beside me  after dinner last night, the serving bowls around us looking like the floor after Christmas gift giving.  We chatted and enjoyed the lovely late glow of daylight-savings that poured through the window.  Guy had made a his Should-Be-World-Famous slow-roasted glazed corned beef, with lightly sauteed cabbage and herb roasted potatoes.  Leprechauns had struck, and the lemonade sparkled green in the bottoms of the glasses.  We switched back and forth between serious low-voiced conversation about risks and interventions to lighthearted chatting about runny kid-noses and leprechaun traps.  It has become both easy and necessary to talk about the difficult things in small doses, blended with the slices of our day to day.

Just then, a familiar face bounded up the walk.  Brother Bair, at church that morning, had been showing me pictures on his phone of his newly planted garden.  I had made fun of the current state of affairs in my yard in sad comparison; tulips and daffodils popping their lovely but disappointed heads up above the dead leaves and foot-high weeds, wishing they had been born that spring in some other garden.  Now, here he was at our messy kitchen table extending an offer to come and help with the yard. 

"It's what I can do." he said, and I think more than anything, those words touched me.  Not everyone has every talent, but everyone has something they can give.  His vast mechanical skills won't come in handy for my blood clot since it is not lodged in my fuel line.  He can't take away what we are going through, but he can make our burden lighter.

We took Brother Bair through our my dreaded studio to the yard.  On a good day my studio is organized chaos, but after we unloaded a good portion of our garage into it for our solar retrofit in January, it looked rather like the aftermath of a very shabby rummage sale, and that was before a month of kids knocking over boxes and digging through it all.  Beyond that was a ransacked playroom and a yard the kids have tuned into a war zone.

I have no shame anymore.  When you have had to show your unshaven legs and girly bits to every one in a lab coat East of Berkley, need help with certain unmentionable hygienics,  and when a trip to the bathroom is your big excitement for the day, you loose the pride that once drove you to turn a whole Saturday into a clean-a-thon, only to lie later to dinner guests saying you had "only tidied up a little".  Thus, the dozen or so people who have been here in the past few weeks have seen our dark underbelly, and though I apparently haven't a fiber of shame left, it has been hard on Guy. 

We are all having to accept things; changes in plans and hopes and schedules, new workloads, and now - a lot of help.  Accepting prayers and kindness and plates of cookies for the kids is so much easier.  It is harder to accept the things we wish and imagine we could do for ourselves, or the things that reveal our weaknesses. 

Then there are the harder things to accept, like the diagnoses and risks.  One in particular; God's will for us, has been the hardest of all, simply because we have no idea what His will for us will be.  We can pray for what we want the outcome to be, but faith means more than believing you will get what you pray for.  I am coming to understand that faith is learning to align your heart with the will of God, even if you don't know what that will is, what ever the outcome. 

*****

 

Baby Update:

 

I spoke to a Neo-natologist yesterday for about an hour.  Though I didn't know him, he attends our church and learned of me through a friend.  I was worried about stepping over that professional boundary, but his first words after I said hello were,

 "Oh, I am so glad you called, I was hoping I would hear from you today." 

 It put me instantly at ease.

 

As we spoke I had been hoping that he would say, "Well, all those risks are true, but I think they have been overstated," or something like that.

 

He didn't.

 

He confirmed our many concerns and those of our doctor. 

 It is serious. 

 

He did, however, also speak to me as one of my own faith, and in that way was able to speak of spiritual matters and how they relate to the medical concerns in a way that no practitioner had been able to.  Overall, he eased my heart a little.

 

One thing he said that helped is that very often, surprisingly so, in fact, when a placenta separates in a catastrophic way, they do a crash cesarean and recover a white, floppy, dead looking baby.  The amazing thing, he said, is how often, within minutes, that baby is pink and crying and doing great.

 

Today we had a visit with a new OB.  I will admit this appointment was not for baby, but for me.  Our High Risk OB is not someone I can talk to at all.  This new OB, while not my main provider, gave me the kind of support and tenderness that comes from one mother's heart to another.  Here are two nuggets that I came away with from her that made my heart lighter:

 

She said that while there is a 10% chance of and abruption, many of those are not catastrophic, and and among those that are, there are many babies who survive.  So 10% does not mean there is a 10% chance of death, which is actually much lower.  Another way she put it, well over a 90% chance that the baby will survive.

 

She also said, "It's actually kind of a good thing you got a blood clot."  If you were going to have a clotting problem, she explained, getting a clot in your leg is much better than having silent clots coating the placenta and smothering the baby little by little until you find out because the baby stops growing.  Our baby, so far, seems to have been untouched by this whole thing. 

 I couldn't have wished it to be any other way.

 

Three more appointments this week, including a look at the clot and a full scan of the baby.

We are hoping the baby is obliviously happy.

 

Thank you for your prayers.