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.

 

Updates and Lists

Claudette may not be able to catch my baby this time around,
 but she is still a great support and her hands can tell just which way a baby is turned!  (on this day you can see she was holding baby's head in her hand)


Update at bottom of post

I am a list maker.
I always have lists going.  Shopping lists, To-Do lists, To-Call lists.
I had started a "To-Do before baby comes" list back in January, before Cleo the Clot came to stay
It had very practical things on it, like "Paint bathroom door", "Organize linen cupboard", "Clean garage".
Clearly things that MUST take place before a baby can be born.

I have a few new lists now; 
- Questions for the doctors
- Hospital birth supplies
(because they worry about the medical side, I need to focus on the comfort part) 
- Baby bag
(weird, that one.  I have only ever had to walk into
the other room to get a baby outfit, not pack a bag.)

But here is my favorite list:
The "Thank you list"

I would never be able to list here all the kindnesses to our family, but I wanted to highlight a few to flesh out a picture of what has been sacrificed by others to keep our family going.  I know that in doing so I run the risk of forgetting someone.  Sometimes I was asleep when something was done for us, or in the hospital, or so out of it that I didn't write it down.  I know there are some folks who have done things anonymously for us, so this is my prayerful thanks to them as well.  For the ones I may not mention here, please know that it is just my cloudy brain and not my heart that didn't hold on to that moment of generous service.  Thank you each, one and all.

Dawn comes smiling of Fridays to take the girls to gymnastics, and if Dawn can't make it, Sandi  or Bonnie comes.  Sandi has also been the brain behind all the planning, and calls often to check in on me, among her many other visits and kindnesses.  Sheila has kept up with all our needs as well.  Sheila G. took the difficult journey to visit with flowers, and Mabel, Sandi, Madelaine, Steph and Dave, and Kathy and Bishop all ventured out to the hospital while I was there.

Every Wednesday someone has come to bring us dinner so that Guy can spend the hour that he is home between work and scouts/boxing/Activity-Day-Girls getting other things taken care of.  Tonight it was Blythe, with thought and care taken to make a dairy free gluten free dinner and even treats. 

Chantal takes me to almost all of my local doctor appointments, twice or even three times a week.  She takes me for blood tests and to pick up medicine, and often stays to talk, help with laundry, clean, and direct the kids with their chores.  She has been one of my lifelines.

When she hasn't been able to drive me, Heather, Stacey and Julean have stepped in.

Speaking of Julean, my sweet sister-by-choice, former mission companion and great sis-in-law, has called me often.  When one day she heard how sad and overwhelmed I was, she dropped everything and drove 5 hours each way to come stay for just 24, and from the minute she hit the door she was a tornado that cleaned, cooked, and directed kids.  It felt amazing to hear another mom use that "mom voice" on my kids, and for them to respond by kicking into gear and not arguing with her.  We all needed some of that!  I hope she felt as good after her hard work as she left me feeling.

Madelaine and Krista have taken my kids a dozen times to get out to homeschool events that I can't manage.  They often stay later and do dishes or fold laundry, and help the kids tidy up, and are always checking in on me.  Kathy J. does the same, and sometimes just comes to tend to my heart.  Amanda has brought dinner and taken kids for overnights.  So has Joanna, adding to that, Joanna brought a box of freezer meals and paper goods (in cahoots with her co-worker Omera!) and made sure Adam got to go to his camp-out with her hubby and son so Guy could stay close to home.  Madelaine has brought food and cleaned, so has Julie, Dawn, Chantal, Dale, Tara, and Danielle.  And Masae.  And Willy, and Wanda, and Gail, and Marion and Dan, and Helen, and Sandi, and Jeni, and Angelina...

Rebekah, Eric, Roy and his nephew, Gail, Dennis, Sam, Wilson and Reily all came and fixed up the very neglected yard.  Gail took laundry home for two days.  Amazing.

Bishop's mom, Joanne, has been a dear.  She has taken me to the dentist, and brought an amazing dinner provided by her and her dear friend Patty.  Patty is legally blind, almost completely blind, actually, but it didn't stop her from preparing an amazing meal for our family, and it was enough to feed us for two nights.

Ruth has been so here for me.  She lives far away, but visits and calls often, always listening.  Tiyama, in a risky pregnancy herself, came all the way to visit and makes time by phone.  Robin has descended the way only Robin can, a flurry of help and child tending.  Rides or food are usually involved, and she has thought of little details that really matter.  Dear Kathy F., who knows trials so intimately, has been such a comfort.  Denise pops over to sweep and chat and fold and clean often, and keeps me smiling.

Ellen has held me, massaged my sore body, and listened without judgement.  I can really sort out my soul when I talk to her and Chantal.  My Aunt June calls and sends cards, and Dad is in touch every few days.  Francine, though she is not near by, is always there to listen and reflect, despite trials of her own.

And who does not, has not, had trials of their own?  Every one of these people has experienced loss, anguish, disappointment, illness, heartache and sorrow, to degrees that I cannot comprehend.  In just the women I have mentioned I can think of 13 lost pregnancies and children that I even know about.  But they come, one at a time, here and there, and make a difference that they will never comprehend.  So often they say, "Oh, I didn't do anything at all" but their 'nothing' is more than I have been able to do in three months, and to me it is immense.  The small impact of one visit or card or call may seem to them minute, but when taken together, can you see the collective impact on our lives?  The wave of service, the tsunami of tending and care, is more than can be illustrated here in simple statements of fact.  What I can't begin to mention is the tears shed, the love and prayers offered, and the Christlike dedication that has been the reason our family has been doing so well. 

I am grateful for what this trial has become in our lives.  I am a changed person, and cannot wait to be on my feet and returning a tiny portion of the love we have received.  For now I continue to pray, each day, for each person who has served and prayed for our family.  May God bless them as they have blessed us.
 
 "God does notice us, and he watches over us. But it is usually through another person that he meets our needs."
("The Abundant Life," Tambuli, Jun 1979)

*******

Now... the update!
First off, Tessa's ultrasound showed no worsening of her growth in the gal bladder.  Although it is perplexing that at 7 she has one, and that it is somehow fixed in place and not floating, the doctor was not worried after today's very thorough scan. 

Next, baby had the LAST of it's many brain scans yesterday.  All results were fabulously normal, heart tones, fluid levels, body and organ growth, and very best of all (since I wasn't too worried about baby given the past great tests),
baby is finally head down, and even anterior
(for those of you who don't speak fetus, that is a very good thing.  Ever heard of back labor?  That is caused by POSTERIOR babies.  Good baby.  Now STAY THERE!)

We are getting the launch date set up for two weeks from now, on the 28th. 
We will be at Kaiser South with the midwife we were hoping for.
We will get to have a labor tub.
We will be meeting this little one soon.
I am actually getting very excited.
It is a strange shift to allow myself the luxury after all that has happened, to become excited and hopeful, but look at all that has gone right!  Yes, things have been hard, and scary, and disappointing, and there have been choices along the way we wish we could have been spared, like the radiation to the baby, and all the medications,
but look at all that could have gone wrong that didn't!

I don't have a preemie.
I am here to raise my kids.
My baby is still here, so far, and I believe it will continue to be.
There has been no rupture, no abruption, no cesarean, no major surgery, no additional radiation, no embolism, no funeral.

We don't know what the future holds, and if more grief and pain are to be a part of it, through the examples of dear friends and with the help of a loving Father in Heaven, I know we will get through it, but I am celebrating all that is right with the world today.

 

Lots of Luck

 

"What mine say, Mama?" Jonah asked. 

Somehow he has begun speaking so well all of a sudden.  He was holding out his fortune to me.

"It says, 'Jonah is a sweet boy'." I said, not even able to see the tiny paper in the dark car.  We had read the real one to him twice already, but he liked the new fortune better.  Ethan corrected me, but Jonah argued, "No, Eee-fan!  Say Jonah a fweet boy!"

I held my own fortune in my hand.  I haven't held much stock in fortune cookies since February of 2003 when, at 40 weeks and 2 days pregnant I opened one that confidently informed me "Your deepest wish will come true tonight".  Yeah, that would have been a great story to tell Ellie later in life.  Unfortunately, she wasn't born for 3 more days.  Note: If YOU don't know when labor will ensue, I promise that a nice non-English speaker in China doesn't know either.

My new fortune teased, "You will have good luck, and overcome many hardships."  I smiled when I opened it, and showed Guy.  While I don't believe in luck, I am not beyond a little International encouragement, especially when it comes to overcoming hardships.

I am in a holding pattern right now, waiting for someone to tell me what they are planning to do with me.  I still don't know when or where they plan to let me deliver this baby, though the "39 week" mark is now just 2 1/2 weeks away.  I did learn today that faithful-and-true Dr. F. will do both my filter removal and my stent placement on the same day (hurray!) when the baby is two weeks old.  It is the only plan I have to rely on for the moment.

And there has been one other morsel of good news.  My sweet friend Ruth went to see her midwife on Wednesday, the same midwife I have been in deliberations with about birthing at the hospital at which I feel most comfortable.  Apparently, she had arrived at work on Tuesday, the day after we went in to have my leg checked, to hear reports from several nurses that "Laine was here last night!", all with positive things to say about me.  I don't even know which nurses they were, the ones I worked with when I stayed 4 days back in February, or the nurses from my Monday visit.  Either way, Deborah came away with many kind comments and hopefully in some way it will help to influence the decision to allow me to birth there.

We now wait for an appointment Tuesday with Dr. M. to check on baby's brain for hopefully the last time.  Following that appointment we will be taking Tessa for an ultrasound to check on the mystery growth that was found in her gal bladder back in January.  I am trying not to worry about her.

 

I guess what some people call "Luck", I call blessings.

 

So wish us "Luck".

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

 

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%.