Natalie's Birth Story (part 3)

Getting to know you, 15 hours old.

 

Little Natalie,

I went to sleep.

And while I was sleeping you were born.

 

I wish it could have been some other way.  There is a place in my heart that feels empty for not having heard your first cry, not knowing what happened in those first minutes, that first hour of your life.  Instead, I have a different kind of memory of meeting you for the first time.

 

I remember a woman's voice reaching through the fog. 

She said, "Has she seen her yet?"

and your daddy said, "No, she's still asleep."

It was then that I knew you were a girl.

 

The fog lifted a little and though I don't remember the first moment I saw you, soon you were in my arms.  I remember you looked so small.  I remember I wished I had known your name right away so that I could call you by it.  I put you to my breast and you nursed as though you had been doing it for weeks.  I was so glad you knew what to do.  I laid there in awe and you nursed away.

 

The time we had together was so short, though daddy tells me it was over a half-hour.  They came and took you away to the NICU, and Daddy went with you.

 

I was taken to a room, and there were blood tests and ice packs and pills. 

All I wanted was you. 

I pumped milk for you and was told that the 11 mls I made for you was pretty impressive for a first time.  Daddy took the milk to you and fed you through a tube attached to his finger.  He told me that you were under bili-lights and that it was hard to look at you because of the glare.  As the day wore on, daddy took you more of my milk, and I tried very hard to come and see you, but my nurse wouldn't let me go to you.  She was afraid I would faint, and made me get back in bed.  The doctor wanted to protect you from needing formula because the lights can be very dehydrating, and told us he wanted to give you an IV.  I didn't want you to have it, but I didn't want you to have to deal with formula either.  Some decisions seem so simple until you are the one who has to make them.

 

In a while we got a call from the doctor in the NICU.  He said that they had gotten your blood test results back and as a surprise to us all, your blood type was a match to mine.  You even had the most dangerous antigen, the one they were worried could be destroying your red blood cells, and by having it you were kept safe while inside of me.  He told us that they still needed to check a few more things in your blood, but that if all went well, you could probably leave the NICU and come and be with us.

 

It was yet another little miracle in this amazing journey. 

 

I was very motivated to come and see you, but my nurse still didn't want me to go.  She told me that I couldn't go without a nurse, and she was not willing to take me.  I was determined to see my baby!  I said, "I appreciate your concern, but I disagree, and I want to talk to a nurse manager."  She left to get one, and I turned to your dad and said, "I don't think they're going to let me go, it's up to you."  He went down to the NICU to talk to the doctor.

 

When daddy got there, he found that your IV had blown the vein, and they had been forced to remove it.  Knowing the results of your blood tests were good, they had taken you out of the bili-lights, and not started a new IV yet.  Daddy saw you and told that doctor that because you were not receiving any treatment anymore, he didn't see any reason for you to be kept from your mama.  He told the doctor, "She needs her mother and her mother needs her!" 

 

When Daddy came back from the NICU, he had you with him!  I was so grateful and so happy to finally see you.  While I don't remember much from the first moments I saw you in the recovery room, I remember so much about having you with me at last.  We stripped you down so that I could see every little bit of you.  Your downy hair stood off your head in every direction.  Your poor little hand was swollen all the way up past your elbow from when the IV blew, and your fingers were blanched white and couldn't even bend.

 

 

You stared into my eyes, and never fussed. 

You knew my voice and seemed to almost know my face.

I kissed you all over.  I rubbed arnica on your sore little hand. 

I nursed you and kissed you some more.

 

They told me they would be testing your bilirubin at 4AM, and that they may have to take you back to the NICU if you didn't do well.  I'd like to have seen them try to pry you from my arms!

You were finally with me, and my world had found a new axis.

 

The days that followed were, have been, very hard, but I remind myself each day of how grateful I am that you are here, safe and sound.  We stayed in the hospital for 3 days, and they let you come home on Sunday.  I think my favorite part of that day was sitting beside you in the car on our way home as you took everything in.  You didn't cry, you just reached your hands and feet out into space, with such dark, knowing eyes, like you were exploring the universe already.  I was so glad that you were finally ours, and that there would be no more interruptions, voices, machines, or scary tests with scary answers.  Just us, our family, and no one else.

 

 

So much more happened in those days, but since this is your birth story, you don't need to know about any of that.  You just need to know how loved and wanted you are, and have been, from the beginning.  I am so amazed that God decided to send you to us the way he did.  How could I begin to imagine our life without you in it?  We thought we were too old. 

We thought everyone in our family was already here. 

We were so wrong.

 

If you ever doubt for a moment in your life that you are special, that you are cherished and wanted and loved, I hope you will come back to this place and read about the journey we all took to bring you here.  I hope you will read of all the prayers and kindnesses of the hundreds of people
who petitioned the angels for you. 

 

It was like the earth cried out to heaven and said,

"Let her come, let her stay!"

 and heaven listened.

 

Welcome, my little one.

I'm so glad you came.

                                                          

                                                                Love, Mom



 

Towards the Light

My first jug of used needles.  Working on my second. 

 

There is an old 80's movie

called Poltergeist where a little girl named Carol Anne gets sucked into an after-life spirit limbo.  At one point in the movie she sees a light.   Her mother calls out to her, "Stay away from the light!" because she will end up in the after-life, never to return.  Later in the movie, a wacky munchkin-medium tells the mother she must instruct Carol Anne to go toward the light, as it becomes her only way out.

 

Often Guy and I call to each other, "Go toward the light!" and the other responds, "No, Carol Anne, stay away from the light!"  We think we are so funny when we misquote old movies.

 

But this has been in my head today.  Going toward the light.  I have become so sensitive to every tone of voice, statement and expression of other people.  If someone responds sadly to something I say, I feel their sadness.  If I think about or linger too long on things, I get pretty far away from the light.  I don't know why this is a lesson I must learn over and over again, but it is.

 

Tonight I went to see Stephanie.  It might be the last time for a while.  She was tired and so drained from the chemo.  I brought her a silk scarf I made to cover her head now that she is shaved, and showed her how to tie it pretty (thank you youtube cancer survivors and devout jewish women for your tutorials!).  We visited for a bit.  I wanted so badly to hug her and take away her fear and pain.  I wanted to wash away her memories of the past three months and fast forward her to a time when all this will be fading memories.

 

As we talked, I heard in my head the words I tell so many laboring mamas, "Don't think about the past contractions and how hard they were and how many, and don't project forward to the next one.  If you do, you give away the peace of this moment."  I have been telling myself this over and over in the past few days as I find myself fretting about the birth, perhaps another cesarean, and the procedures waiting after that. 

 Just be here now; and if something makes you feel dark,

 go toward the light.

 

The dark tells me to count my troubles since February; (31 doctors appointments, 70+ blood tests, 184 shots, hundreds of blood sugar tests... oh yeah baby, suddenly I'm a math rock star!).  It tells me to worry the baby won't latch, that the NICU stay will be much longer than expected because baby will be very sick, that I won't be able to hold the baby at all or get to the NICU if I have surgery, that I will be in one hospital getting my procedures while my baby is in another. 

It whispers discouragement and fear

and interminable trials.

 

But when I try really hard to see the light, I can see that there are only about a dozen shots left.  Only about as many days till I am able to really hold my baby in my arms as there would have been if I had gone up to my real due date (or later, like I usually do).  Only a few more of the terrible what-ifs left on my list to move past, instead of all of them.  I see that it all could have been so much worse, that I have made it to 38 weeks, 5 days, and that the past 7 of them have not been with a preemie in the NICU.  I did get a blood clot twice, but not three times.  No abruption.  No fetal distress.  I have been carried in the arms of loving friends and devoted family who have picked up the pieces of my life, loved my children, and been true instruments in God's hands.

 

This quote bears repeating here:

 

"Don't you quit. You keep walking, you keep trying. There is help and happiness ahead. Some blessings come soon, some come late, and some don't come till heaven, but for those who embrace the gospel of Jesus Christ, they come.
  It will be alright in the end. Trust in God,

 and believe in good things to come."
- Jeffery R. Holland

 

We can get through this.

God is in charge.

 

Ethan joined many of our friends and shaved his head
to support Stephanie in her battle-future-win with cancer.
Proud of this boy.

 Oh, and no, we have no idea about when this baby is going to come.  Contractions last night for 3 hours that stopped.  No word from any of our millions of doctors; total radio silence (likely the holiday weekend didn't help that).  I imagine sometime this week.  A month ago it was all they could talk about to get this baby out, now nothing.

Weird.  Feel like I am in limbo, too.  Carol Anne, help!!!

 

 

 

 

Plan B....

 

Let me start by saying that,

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

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

and are currently going though, someone chirps up with

"What matters is a healthy baby." 

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

 

And I also disagree.

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

The experience matters.  The memories matter. 

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

Feelings matter, too.

 

*****

 

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

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

This is my attempt to explain it.

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

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

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

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

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

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

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

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

 

******



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

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

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

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

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

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

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

*****

 

I know God has a plan.

I have no idea how it will play out.

Knowing that doesn't make it much easier.

I pray a lot.

I am exhausted and hurting and not sleeping much.

I am waiting.

I am trying to stay positive.

 

Updates and Lists

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


Update at bottom of post

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*******

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

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

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

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

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

 

Hospi~talotics and Hoops

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

So I will go.

 

A few more hoops to jump through yet.

 

 

 

 

No, I'm not kidding.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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 :)

One in a Thousand

It is with immense gratitude that I lay here in my bed at home writing on my blog once more. 

Last Tuesday I noticed while exercising that one of my legs was really tired.  I sat down several times to rest, got back up to continue, and finally teased Kathy that I would just watch her jump around and benefit vicariously.

Later that night I sat on the couch writing the last post.  I got up for dinner and felt a strange sensation.  My thigh, my whole leg even, felt like it was wrapped in a band or a cast.  It was like my muscles were seized up and it was hard to bend my knee.  I figured I had some how strained a muscle, or many of them, but strangely, there was no muscle pain.

A call to Guru Ellen, expert masseuse, for muscle advice led me to actually look at my leg.  It was swollen, a little purple and blotchy.  "Call" she said, so I did.  My midwife asked lots of questions about lumps, hot spots, pain, vericose veins - but I had none.  She said some women have cirulation problems in pregnancy, to gently stretch and elevate, and call if needed. 

I went online... there were references to blood clots, with a long list of symptoms, but I had none of them besides the swelling.  Anyway, the info said that the chances of a blood clot in pregnancy were one in a thousand.  One in a thousand.  Certainly not me.  I elevated my leg and wrote a post on my blog.  The theme of it now seems ironic in retrospect.  I went to bed.

At about 4AM I woke moaning.  My back was killing me.  I was feeling strong cervical pain, and then I had a contraction.  I headed to the bathroom, and upon standing a small but sharp twinge of pain shot through my leg.  I woke Guy, "You need to take me to the hospital.  Something is wrong"

We got in the car and he asked where to go.  Roseville was the newer, more modern hospital, but South was 10 minutes closer.  I figured closer was better, so I said South.  It would come to make all the difference.

When we arrived at the hospital I had Guy take me to Labor and Delivery (L&D).  "We can skip the ER," I said.  I knew that at 25 weeks I was finally to the point in my pregnancy where they would try to save my baby. 

In triage I was checked by nurses and then an OB, all with smiles and calm voices.  My pulses in both feet matched, and I turned to Guy and said, "Well, looks like we're going home".  The OB came back and said she was just going to send me over for an ultrasound of my leg "to be on the safe side". 

The radiologist, Jane, was sweet and careful.  Soon I was realizing that this scan was taking a long time.  After having had four miscarriages, one learns the body language of a radiolgist, and I could tell she was finding something.  She called in a woman in a white coat.  Jane asked her vague and carefully worded questions.  A finger point to the screen and a nod.  Back to the calf, back to the thigh, back to the groin, now to the lungs... something was clearly not right.

The specialist left.  "I know you can't tell me anything, but I think you found something." I said with the lilt of a question.  Jane smiled gently and said, "You're right, I can't.  Let's just say there is a reason you are here.  It was a good thing you came in tonight."

I was glad she said it.  I guess it echoed in my mama heart that somehow I had listened to a voice from somewhere deep within; one I had always wondered if I would hear in the time of a "real emergency".  But honestly, this didn't feel like one.

Back in L&D they tucked me into a bed.  One sure sign you ain't goin' anywhere is when they tuck you into clean sheets... if you are going home, you stay on paper. 

I don't really remember what happened next.  Guy says Dr. P came in and told us that I had an "extensive blood clot".  I remember trying to ask what that meant, but not getting a clear answer.  My nurse, Donna, was sweet and kind and smiled at me.  She retold me about the medication I would be given soon, but I don't know how much I understood at the moment.  It was confusing, and it was about to get worse.

(continued here)