Normal

"He says it's time

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

 

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

 

"I don't." 

                                                                                    

                                                                 ~Dory and Merlin, from Finding Nemo

 

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

 

***

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

Normal, that feels amazing.

 

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

 

***

 

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

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

NORMAL.

 

Dr. M, Baby and 1%.

Blessed and blessed

 

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

It was a dream and it wasn't.

 

***

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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

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

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

New Plan!

Behold, the human pincushion.

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

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

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

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

Update

Hello from the hospital.

What a ride.

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

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

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

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

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

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

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

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

A Message From A Friend

 Dear Friends

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

Clear lungs.

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

Why is this good news?

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

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

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

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

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

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

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

Acceptance



 

(Baby update at the bottom)

 



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

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

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

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

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

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

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

*****

 

Baby Update:

 

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

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

 It put me instantly at ease.

 

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

 

He didn't.

 

He confirmed our many concerns and those of our doctor. 

 It is serious. 

 

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

 

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

 

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

 

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

 

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

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

 

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

We are hoping the baby is obliviously happy.

 

Thank you for your prayers.

Lost and Found

 

To all of the Lovely Ladies
 at Lost and Found Connections, a tender space on the web where I received much comfort and support during and after our four miscarriages;

I have seen that hundreds of you have visited in the past few days.  You may wish to get caught up on our situation.  Please go to This Post to start with the first day of our blood clot crisis and then read forward.  Thank you all for coming.  Please drop a comment here or to holmanart@gmail.com.  Hugs.

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.

Stuffing Pandora's Box

 

Tessa wanted me to see the sunset, so she took a picture and brought it inside to show me.  The bulbs I planted in the fall are coming up.  I can see yellow blurs through the window way out by the back fence.  The world is moving along without me.

 

 I got a little flustered last night when I bumbled through the place and saw what three-weeks-of-no-mama does to a house.  I got in the wheelchair and called all the kids in from their various diversions.  I can't reach much, but a kitchen gets a lot cleaner when mama can see that a child has pushed in the dirty cutting board without wiping it, or swept the floor and left the pile under the counter. 

 

I have a technique I use for cleaning up a crazy dirty room (when I am not nursing a blood clot, that is).  I get a broom, or, in the case of a kid's room, a rake (yes, I am totally serious) and I scrape everything into the middle of the room.  I take every thing that does not belong on the surfaces and put it all in one spot on a bed or table.  Next I wipe-dust-sweep-vacuum the perimeter of the room like a Zamboni, working from the walls to the center.  When I have gotten that far, I only need to deal with that pile, and then I know I will be done.  From that pile, I find I can sort in to mini-piles, save myself trips, gather like objects, and pick up all the trash at the end in one scoop (if you haven't gotten the picture yet, yes, we can be slobs).

 

So I need to do that right now. 

My head is messy inside, and I need to clean up and put all the chaos in one pile. 

Well, two actually.

You don't need to read it, but since this is my journal as well as my blog, I need to write it out.  Please understand that this has nothing to do with faith, or lack of it.  This has to do with noise in my head.  I can and will write for days and years and lifetimes

about faith

and joy

 and miracles witnessed

 and gratitude. 

 

Sometimes you have to clean up, first.

 

 

Pile #1- What could have happened

 

You have a high chance of a pulmonary embolism.

If you have an embolism, you have high chance of death.

The blood thinners might not work and the clot could grow.

We might have to amputate if we don't do the scary full-blown surgery.

Not having the surgery leaves you with 50-70% chance

of permanent debilitation in your leg.

The surgery poses a risk of cancer and internal bleeding to the baby.

The surgery poses a risk of internal bleeding to you.

 

(What could or is still happening):

 

The blood thinners puts you at 10% risk of placental abruption.

Even though you are on blood thinners, your clot can still grow and you could still have an embolism; call 911 if you have chest pain or difficulty breathing.

The blood thinners could make blood transfuse between you and baby.

If baby has RH positive blood (it does) and blood is transfused, antibodies may attack baby's red blood cells.

If baby shows signs of organ failure due to antibody increase, pre-term delivery will be necessary.

If the clotting disorder is genetic, you will have higher risk of blood clots forming on the back of the placenta causing organ growth retardation in baby.

There is no way of checking if it is genetic until after you are off blood thinners.

You can't have a homebirth anymore.

You will need continuous fetal monitoring for birth.

If baby is born early, you will have to deliver at a hospital that has not been accredited as baby friendly to be at the level 3 NICU.

If you go into labor before 36 weeks, you will be on blood thinners that have no reversal drug and you may hemorrhage.

You may need a cesarean.

If you need a cesarean, you will not be able to have an epidural because if possible spinal cord hemorrhage, so you will have general anesthesia.

You need to get to the hospital as soon as you think you are in labor.

You may need to be induced early.

If the blood clot in you pelvis remains, you will require surgery after the birth to place stents.

If your antibodies continue to rise, the baby will need a transfusion.

The blood for the baby will be hard to locate because you have two antigens.

If you start to have an abruption, you may not have any symptoms in time to save the baby.

 

 

Pile #2 - What you will have to do from now on

 

 Check blood sugar every day four to 6 times

Stay hydrated to reduce contractions

Give yourself shots twice a day

Check thyroid every 2 months

Check RH titers once a month

Check baby's organ growth every 4 weeks by ultrasound

Check blood clot in pelvis every 2 weeks by ultrasound

Check baby's brain blood flow every two weeks by ultrasound

Do kick counts every day to make sure baby is still alive.

 

***** 

 

Chantal, Sweet Chantal, came by this morning after I wrote these lists.

 

"I have a present for you," she said, presenting me with a tiny old suitcase.

 "This is a "God Box".  This is a place for you to put all your worries." 

She handed me a pack of index cards, with a promise to keep me supplied with as many as I could need for as long as I will need them.

 

You know, in the old Greek myth, Pandora opened a box that contained all of the grief, pain, and suffering in the world.  I have always loved the story of Pandora because after she let out all of the sorrow and pain, she had faith enough to answer the call of a little voice remaining in the box,

 that of hope.

 

I plan to fill my box with all my heartaches and worries,

 but I am going to add my hopes as well.

 

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.

 

The Days After the Day After

 Jonah sidles up close to me.  His face is pink, and so angelic.  His eyes sparkle with little flecks of gold and sky blue, and there is a comical spray of chocolate freckles across his nose and cheek from a stolen "hi-bar" (granola bar) that he somehow managed to sneak.  I smile at him and he tells me he loves me, and all feels well with the world. 

After we were released from  "the procedure that never happened" Friday, Guy took me upstairs in a wheelchair to visit my sweet nurses and tell them the good news.  They were overjoyed.  They hugged me and smiled and hugged me again.  Nurses nearby who didn't even know what was going on had smiles on their faces.  We hugged goodbye and said we would see each other in a few months when I gave birth. 

We spent the rest of that day glowing with smiles and sharing the good news.  Hours of phone calls and emails occupied our day, and that night that Guy helped me into bed and we gratefully fell asleep in each other's arms.

The next morning before my eyes were even open, a crushing feeling settled on my heart.  I was disoriented and confused, and couldn't understand what we had been through the day before.  My heart was racing, my blood sugars soaring.  I spent the day mostly immobilized on the couch.  Threads of doubt wove their way into my thoughts.  Could there have been a mistake?  Could they have been looking at the wrong vein?  Of course not, I reasoned, there is only one vein that large in my leg.  What if they had scanned the artery rather than the vein?  No, the contrast dye would have headed down, not up, if they had been in an artery. The same doctor that diagnosed me gave me the scan.  There was no mistake: my vein was proclaimed clear.  I felt like an Israelite lagging behind at the side of the Red Sea, already questioning if I had really come across it.  Am I a doubting Thomas even after having seen the evidence for myself?

As evening drew to a close, my thoughts began to clear.  I realized that the Prednisone had been playing with my mind throughout most of the day, as well as my heart rate and blood sugar.  I settled into a peaceful place somewhere in my heart, and calmed down.  Not much later I began to realize that my leg was beginning to swell and hurt.  They had warned me that a clot could return, that we weren't out of the woods entirely.  I began to panic.  If you doubt in the miracle, does it go away?

It dawned on me then, that I had been sitting motionless for hours and that the weight of the baby was pressing on my vein, causing it to be even more restricted than it already is.  I went to bed and stayed there all day yesterday.  As the swelling went down, I began to understand what a very long process this is going to be.  I will need to be careful how I even sit so that I don't make things worse or cause a new blood clot.  Today I woke up feeling even better, knowing that I have the support of my family and the comfort of loving friends. We can do this.

Today the high risk OB called...

Without skipping a beat he unfurled a laundry list of all of the things that could possibly go wrong with this pregnancy over the next three months.  At any point in time the placenta could detach from the uterus, necessitating an emergency delivery to save our baby's life.  "10% chance, very high," he said.  I may have inherited this disorder from my mother who had a history of blood clots.  My aunt had blood clots in pregnancy too, lending more evidence supporting his genetic theory.  Because I am on blood thinners they won't be able to test me to see if I am lacking that clotting factor genetically until after the baby is born.  If it is genetic, my body may be trying to create blood clots that will cling to the back of the placenta and inhibit the baby's growth.  I will need to receive ultrasounds every four weeks to check to see if the baby is growing, checking its kidneys and liver and heart to make sure that they are still developing.  If baby is not growing right, it will be safer outside of my body than in, and I will have to have a very early delivery.  The goal is to make it to 35 weeks, the doctor said. My goal is still to make it to 40 weeks, I thought. The doctor is still very concerned about a pulmonary embolism and reviewed with me all the symptoms.  We realized I have had symptoms of small fragments of blood clots entering my lungs over the past week.  If the symptoms persist for more than 10 minutes next time he wants me to go to the hospital. 

Like a cherry on top, the doctor ended the phone call with one last word of caution;  if I get a uterine infection during labor, a "balloon of bacteria" could enter my bloodstream as the placenta detaches and infect the blood clot in my pelvis, putting me at risk for a massive blood infection.  You know, just in case I didn't have enough on my mind.

A few minutes after hanging up the phone with the OB, Mary, a sweet nurse I have only met over the phone, called me.  I started to cry when I heard her voice and told her everything that I had just learned.  She had called to tell me that the midwife was not comfortable seeing me as a patient because of all of my risks.  We talked for over an hour.  By the end of it I was in better spirits and Mary was excited to help me.  She would talk to the midwife about following my care.  I need someone who sees me as a pregnant woman, not a woman ready to give birth to a blood clot, I told her.  I am being followed by every other doctor on the planet for my leg, for the blood clot, and for the high risk nature of this pregnancy.  But I need someone who will still tend to my mama heart.  I need someone who will still listen to the little details that are important to a woman who is getting ready to welcome a baby into the world.  Mary said she would do whatever she could to help me find that safe place in all this chaos.

 

There is literally nothing I can do. 

 I can't eat better, I can't exercise, and I can't take more vitamins. 

This is completely in God's hands. 

At some point in time over the past two weeks, a nurse said to me,

 "God hasn't gotten you this far to leave you alone now". 

 I cling to those words every day.

 

 

Miracles

 

We have witnessed a miracle. 

We went in this morning for the procedure.  Sweet Dr. F. who many of you have been praying for, was warm and kind.  He prepped me, opened my leg, inserted the catheter and injected the dye into the vein that would illuminate the clot so that he could work on it, then took an ex ray to see where to begin.  

In a few minutes he said, “Well, Laine, um, the clot has disappeared.”  He took several images all the way up my leg to where the lead blanket was protecting the baby, and every particle of the clot is completely gone.  There is no evidence in the vein of it ever having been there.  To put this into perspective, we were told it would be three to six WEEKS before there would be any detectable difference in the clot to know if my body would eventually dissolve part or all of the clot.  The whole process at best was expected to take many months, if it happened at all.  The vein, he said, looks like the vein of a healthy person, and he anticipates no valvular damage and possibly a full recovery.

 To protect the baby from the radiation, we did not get an image of the pelvis area, so we won’t know if there is any clot above the groin until next week with a follow up ultrasound, but scans show that the blood flow is reduced, so it could just be the weight of my uterus/baby pressing on the main vein (which is what caused the clot), or I could still have clot up there.  That is totally fine, because except for limiting my mobility for now, it won’t cause damage.

He said that he can only hypothesize two scenarios; that the clot was so fresh that it responded to the blood thinners (but he doubts that because I had extreme fatigue in the leg for two days before the diagnosis, indicating that the clot started days before), or that it “slid up” and merged with the section of the clot in my pelvis.  “There is one other scenario, Doctor,”  I said.  .  “Yes, I was thinking of that…” he said shyly, knowing exactly what I meant. I have been very open with him about all of you and your prayers, about our faith that this was going to be ok, and that we believed God was watching over this whole thing.

I was monitored for half an hour since there was nothing done, and am now home resting.  We will have regular ultrasounds of the leg because recurrence is a possibility, and I will remain on blood thinners till the birth, but otherwise, WE ARE GREAT!!!

I want to testify to you that this was God’s doing.  And I believe it was meant as a testimony of his strength, love and power, not for me (ok, a little!) but for every soul who prayed, fasted and asked for prayers on our behalf.  Each of you have been witness to and participated in a miracle.  Heaven has been lit up by your prayers.  Our gratitude cannot be measured, and we feel so blessed to have been the channel that has brought this testimony of God’s love to each person that has been with us through this process.  

I testify that God knows and loves you, and that he hears your prayers.   

Our hearts are full today.

(next post here)

A Thousand times a bunch...

Jonah is snuggled at my hip.

 

"Miss you, mama.  Dove you, mama."

 

"I love you too, sweetie."

 

He says this a lot now.  Every day since I came home from the hospital.  That first day he said "miss you" about 25 times.  I missed him, too.

 

*****

If you are beginning this story today, go down to read the previous post first.  You definitely need to get caught up.

 

I was given a shot.  It was to stop my blood from clotting and to keep the clot from growing.  Donna said I would learn to give myself this shot and would do so every 12 hours from now on (later told it would be for 10 months,  but by the time we were clear on details, we learned it would be only till the baby comes, then I will go on pills.).

 

We were taken to Postpartum, where we were settled in a room right out in front of the nurse's station.  Over the next several hours many doctors came in.  The first, we call him Dr. Roto-Rooter, came in like a whirlwind.  He stood at the doorway and told us that the clot was very dangerous.  It could break off and go to my lung, causing a pulmonary embolism, which could be fatal.  The treatment for a PE was very dangerous for baby.  He said a surgery could be done, right away if we wanted it, where they would use an ex ray for 2-3 hours to insert a catheter up into the length of the blood clot while I lay on my belly.  They would then place me in ICU over night while they sprayed a chemical called TPA into the clot for 10 hours.  Next morning they would remove the cath and suction out the blood clot.  If I didn't do it, the damage to my leg would be permanent.  The blood clot, we were told, was not affected by the blood thinner, and may or may not go away on its own, but not for months and not in time to save me from damage.  If we wanted to do the procedure, it would only be effective if done in the first 14 days. 

 

 Oh, and by the way the clot extends from mid calf all the way up to the area in the pelvis behind the baby.

"What about the risk to the baby?" I asked.

 

Yes, he stated rather nonchalantly, the risks of ex ray include cancer and tissue damage, and the risk of the medicine to the baby and to me was internal bleeding.  I told him that all sounded out of the question.  I pictured the baby, it's tiny brain happily developing, with a sudden uncontrolled bleed, damaging it forever.  And cancer?  In our little child, all so that my leg wouldn't be damaged?  We asked questions that the doctor kept deferring, "This isn't really my area of specialty.  You'll have to ask the Radiologist"

 

He left.  I told Guy that I felt like he had just come in and dumped a wheelbarrow full of barn-droppings at the foot of the bed and left.

 

15 minutes later, Dr. P reappeared to explain that I needed a filter put into the vein below my heart to keep chunks of the blood clot from going to my heart and lungs.  There were risks, 10 minutes or so of direct radiation to the baby.  We had questions, he said he would find out the answers from the radiologist.

 

Our nurses came and went, tending to us carefully and sweetly.  Lori, who stayed and listened to what the docs were saying, tried to comfort us.  They had seen blood clots before, "but like this," Nurse Kim said, holding up her fingers like she was holding a bean.  "None of us can even remember hearing about one this big back in nursing school."

 

A while, a century later, a new doctor came in.  He was the Interventional Radiologist.  He let us know he had trained at Stanford under the "Guru of this field of medicine".  He re-explained both the filter and clot procedures, and fielded our very concerned questions.  He understood that I wouldn't expose the baby to such extreme risks.  He said that, looking at my leg, he felt like there was a good chance my leg could fair pretty well if we just left the clot and hoped for the best.  But if the leg didn't respond to the blood thinner he said I could loose it, and the surgery would save it.  "Are you a praying man?" I teased.  "If you two are, then I don't have to be."  He said.

"Oh, even more so!" I smiled

 

He stayed a while and answered more questions.  The filter, he felt, was redundant with the blood thinners now started.  He said it was old school to do both.  It was a comfort to know that he heard my concerns and was not pushing the procedures.

 

That day is a blur.  Sweet angel nurses focused heavily on my lungs, making sure I didn't have a pulmonary embolism.  They each brought some new comfort and kindness that was needed at each moment.   Guy had to leave to tend to the kids who had been alone all day.  I cried as I watched him step behind the curtain, allowing myself to think for just a moment about what could happen while he was gone.   Kathy came with flowers and listening ears.  Calls came.  I learned to deal with mother nature's calls without moving my leg. 

 

Later that night, the Stake President (the person in charge of the group of eight local congregations of our church), his counselor and our bishop came to administer to me.  President Fisher uttered a sweet blessing on my behalf, calling on miracles, and blessing my doctors and nurses.  The room was filled with peace and beautiful warmth, and tears, of course.

 

We knew that something huge and potentially life threatening was happening, but something even bigger was happening in the four walls of that little room. 

There was a peace that said, "all is well".

 

Guy and I sat in the alone in the dark that night and spoke words of gratitude and held each other.  This is the biggest thing that has ever happened to us.  I am so glad God is the one in charge.  This is way too big for tiny mortals like us.

 

I went to sleep.

 

*****

 

We would learn a lot more about the risks of not addressing the clot in the next few days.  For that reason (as many of you already know) this story comes a little out of order here.  Tomorrow morning (March 1st at 7:30 AM)  I am going in for a procedure on my vein.  It is a "mini" version of the first one offered.  There will be no ex ray near the baby.  It will be 1 1/2 hours as opposed to 14 hours.  They will only do the thigh, and leave the clot in the pelvis till after baby is born.  They will use a teeny dose of the medication only in the clot, which does not cross the placenta, and then manually remove the clot.  If you pray, pray for us tomorrow.  If you don't pray, go ahead and send one up anyway, for me, please :)