So blessed

It was a year ago today.

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

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

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

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

I tried to focus on the calender on the wall.

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

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

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

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

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

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

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

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

*****

1. 
   

Once, Twice, Three times...

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

 "What are you going to do

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

"This."  He answered.

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

 

*****

 

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

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

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

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

 

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

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

 

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

 

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

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

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

 

Dr. F. was clearly disappointed, almost dejected.

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

I told him the news.  We processed.

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

  

Waiting for the procedure to be finished.

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

 We went back in through the double doors.
 

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

 

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

*****

 

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

Glad to be with people I love. 

Thrilled to be walking and holding my girl.

 

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

 

*****

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

 

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

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

 

We know.

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

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

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



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.

 

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

 

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.

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.

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.

Daffodils in the Morning

 

Someone brought daffodils. 

I would say they were my favorite flowers, if the rest of the flowers weren't each as amazing in their own way.  But these were closed tight, their heads covered with a tissue-thin, brown casing that might have disguised them as spent blooms, if it weren't for the bulge of fresh, smooth yellow that peeked out from the parchment cracks.  Guy had put them in the bathroom on the counter.  It is one of the places I get to regularly these days. 

I tried to sleep that night, but when my eyes closed it seemed like somewhere a crack opened and behind it the tears I had been holding found their way out.  The day had been wearying, with contractions and pain and uncertainty.  Guy held me sweetly until I fell asleep.

The next morning I made my way to the bathroom and stopped at the door.  Those daffodils had opened in the night.  There, glowing and ready for the day, they had no idea they weren't holding their heads up to the sun.  I smiled.  It was a new day.

*****



The day that Guy and I went to get the procedure done to remove the blood clot from my leg, the clot that had impossibly disappeared (though with God nothing is impossible, right?), we sat in the empty waiting room at 7AM and held hands.

"Pray with me?" I asked Guy, and in the quiet, I whispered a prayer.  At some point, as I prayed for the doctor, the nurses, and especially our baby, I was filled with a warming light that made the walls of my heart seem to expand until they reached my skin, and everything in me was at rest.  It was so much like the day, when pregnant with Jonah, we had been told Jonah might be outside of my uterus requiring he be killed to save my life.  On that day that felt too horrible to bear, on the way to the hospital, I had been filled with that same amazing peace and calm.  And, too, so much like the day when I had prayed to know if I should marry Guy.  Peace.  Utter, unwavering, doubt extinguishing peace.

In that waiting room, our heads close, all the fear dissipated and it was like someone had pushed a fast forward button, showing me the end of a movie, not enough to know what would happen, but just enough to know that whatever happened, it was happy and good.  I thought it meant that the surgery would go well.  I thought it meant the baby would tolerate the process and be okay.  I never would have imagined that there was to be no procedure, the baby would not be put in any risk, and that in a few minutes my doctor would be standing in front of me smiling and taking off his face mask, patting me on the head. 

I didn't need to know the end, to know things were going to be alright somehow. 

Some days are going to be hard.  Really hard.  And even having the faith that things will be alright doesn't mean they will be easy, or that grief and loss may not still touch our lives.  Sometimes I am in a place of open daffodils in the morning, and sometimes I am in the place of tears at night.  And I can feel faith in both places.

Tender Mercies

My new wheels.

 

I can't think about today's news anymore.  I am all cried out at the moment.

 

Here is what I am grateful for right now:

 

A husband who:

- takes Ethan to boxing and Adam on a date to try to help everyone feel normal.  

- holds me when I cry. 

- tries to help me see past all the scary "ifs" to what we have right now that is not broken.

- cuddles me at night, and flirts with me and makes me feel as sexy

 as a beached walrus can possibly feel.

- wants to take care of things so other's won't feel a burden.

 - rubs my sore leg.

- tells me spring flowers will be here next year. 

- takes care of 15-year-old homework procrastination.

- calls me to remind me to take my shot.

- does his job and then comes home and does mine.

- holds it together, even though this has got to be as hard on him as it is on me.

 

A baby who:

-is alive

-has the hiccups right now and makes me smile.

-has made it this far and is perfect.

-God sent, and has protected thus far.

 

 

Children who:

cook me a high protein breakfast, bring me apples, fill my water (again!), clean up my water after Jonah spills it (again!), teach each other to cook french toast, help me get things onto my feet, comfort each other, change poopie diapers, bathe and dress Jonah, feed him, and wipe his tears,

hug me and tell me they love me.

 

Friends who:

call

cook

help

call

hold me while I cry (thank you, Ellen)

swoon over ultrasound images that look like a cross between

 Skeletor and Alien II, and still tell me my baby is pretty

call

post uplifting scriptures and thoughts on Facebook

take my kids to classes

act like there is no inconvenience at all in picking up the pieces of my life

pray.

 

A dad who:

calls every day to check on me, even though I know he is really upset by it all.

emails funny stuff.

tells me every time we talk that he is praying for me.

 

Siblings who:

are fasting and praying

call

write

send flowers

share their stories of faith and hope

 

Other things I am grateful for:

 

Gail's soft blanket... when I hurt in the night and the house is quiet,

 I hug it and remember I am not alone.

 

Homeschool; I feel needed even though I can't do much right now,

 and it gives me a sense of normal.

 

Windows and spring-like breezes.

 

Heating pads and Tylenol.

 

Doctors and nurses and medicines that are saving our lives right now.

 

The scriptures, especially ones I know by heart.

 

Prayer.

 

Answers to prayer.

 

 

 

Today we got a scary blood test back.  I am RH negative, and was sensitised by Jonah's birth so that my body made anti-bodies against his blood type.  At some point in this crisis with the blood clot and blood thinners, my blood mixed with this baby's blood, and antibody levels have begun to rise, indicating that this baby also has a positive blood type that my blood will attack.  The worry here is that this means that somehow our blood has or is currently mixing, leading to the assumption that there is a problem with the attachment of the placenta.  The attack on the baby's red blood cells can be treated by a blood transfusion after, or if very serious, prior to birth.  The scary part is knowing that the blood is mixing and that could mean a far more dangerous placenta problem; placental abruption.  If it is slow detachment, it could clot and stop, and the baby could make it fine to the birth.  The blood thinners could keep it from clotting, and it could continue to separate.  If it does, the baby will have to be delivered right away to save it.  Symptoms are bleeding and contractions, but not all women have them. 

 

Okay, I have to go back up and read my list again now. 

Good Measure

 

We headed out into rush hour traffic tonight for yet another appointment.  Bladder full, I thought we were having a scan of my leg to determine the status of "Cleo", (my nickname for the blood clot).  Surprisingly, when we got there the radiologist, Susan, told us we were there to check on the baby.  After my scary talk yesterday with the High Risk OB, the baby's growth and development had been paramount on my mind.  Anyone who has seen me pregnant before knows that I am much smaller than in previous pregnancies.  At the first mention that there may have been clots forming on the placenta for weeks now, possibly limiting the baby's growth, I couldn't stop imagining the baby shrinking inside me.

 

"Do you know what you are having?" the radiologist asked.

We told her no, but just last night we had been thinking about finding out.

"Maybe it would help to know," I had told Guy.  "All this talk of blood clots and pulmonary embolism and placental abruption... I feel like everyone has forgotten about the baby.  It might help us to connect to the baby a little more if we knew what it was."

 

"Do you want to know?" she asked, and I realized that in just moments I could actually know something about this baby that was happy.  Guy and I talked about it a moment. 

 He said, "What ever you want",

and I said, "Let's do it". 

 

As soon as I said it, though, I didn't feel as excited as I thought I would.  I went into the bathroom a moment to empty the 4 gallons of water they had made me drink for the scan, and realized I wasn't ready to know yet.  So much has changed.  We can't have a homebirth anymore.  We can't wait for labor to come and calmly bring our baby to our arms here in our home.  We won't have anything we are familiar with, and we may end up with a cesarean.  One by one, each of the elements of our hoped-for birth has been erased from safe possibility.

 

But not this. 

 

When our other babies have been born at home, either Guy or I was the first to announce their gender.  There have been laughter and surprise and thrill in those words, "Its a boy!"  "Oh, a girl!".  And always, in our voices, not a stranger's.

 

I came out of the bathroom.

"I changed my mind, I don't want to know yet." 

 I didn't want this to be the association I have with finding out, all because of the crisis.  I didn't want that special moment to be hijacked as a bandaid for our hurt hearts.  There are still a few things we can hold on to in the traditions we hold dear. 

We will wait, and when our baby comes, Guy or I, or both together, will look

and tell each other.

 

We had good news anyway.  The baby measured perfectly in every way.  It's organs are healthy.  The blood that nourishes it pumps safely to it through a placenta that, for now, is doing its job.  In four weeks, the baby will be checked again.  I have faith that it will be just as perfect then.

 

The radiologist couldn't contain her curiosity.  She peeked at my vein while she was scanning.  Sure enough, just as I knew it would be, the clot is still there in my pelvis.  I don't know how long it will be there, but I believe if it had been a threat, God would have resolved it along with the section of clot that threatened my leg with permanent disability.  It was comforting not to have to wait until a scan days from now to know what I am dealing with.  I am okay with knowing it is there.

 

She printed us a dozen pictures of the baby.

A healthy

chubby

baby.

 

Today was a great day.