Sunday, November 19, 2017

Baby Beth - RSV

As you may remember, the week before Miss Beth was born, all of our children were able to join us in Houston.  Three days before the scheduled C-section, Elle and Ana had both come down with very nasty coughs.  I took Elle to an Urgent Care in Houston just to make sure it wasn't the flu or strep or anything contagious.

 The doctor assured me it was just allergies.

  I bought some Claritin.

On Beth's birthday, Elle and Ana were not allowed into the NICU to visit because of that cough.

When we returned home a week later, all the kids were coughing.  I tried to keep them at a distance, but you just can't keep a three year old who has missed her mamma on the other side of the room for very long.  And I was still hoping it was just allergies.

When Beth developed a stuffy nose and cough a week and a half later,  I took her to our pediatrician immediately.   She thought it likely just a cold, but cautioned me to keep a close eye on her throughout the weekend and not to hesitate to bring her to the Emergency Room.  She said, and I quote, "Never trust a newborn.  If she looks at you funny, take her to the ER."

I watched her anxiously through the rest of the afternoon.  By that evening I was worried that she was retracting when she breathed, so I took her in to the Emergency Room.  I explained her doctor's concern.  I explained the crazy AVM going on in her head.  I explained my worry that her struggle to breathe would be too much for her already stressed heart.

They told me she just had a cold and sent us home.

I spent the night watching YouTube videos on how to diagnose respiratory distress in rural India.

All day Saturday I counted her breaths and measured the retractions.  She could barely eat and would vomit up the thick mucus that was clogging her nose.  I was practically hyperventilating as I struggled to employ The Nosefrida (a mouth powered suction device) to clear her airways. By that evening I was certain she was in distress and we returned to the Emergency Room.  This time they ran labs and diagnosed her with RSV, Respiratory Syncytial Virus.  I was relieved to have my gut instinct validated.  Truly, this was no harmless cold.  But discouraged when they once again sent us home.  The doctor du jour told me that she was well oxygenated, even if retracting *slightly*, that there wasn't much they could do but keep her suctioned and I could do that at home.  Even though it could be fatal for preemies, she was a "healthy full term baby".  If I was still worried, I could always try Urgent Care.

Sunday morning found me pinching her fingers and toes as I Googled "capillary refill".  Her hands and feet were ice cold.  I was dreadfully uncomfortable as she refused to feed.   After her second episode of turning grey around her mouth I had had enough.  I skipped the Emergency Room and went straight to the Pediatric Urgent Care.  They had her on oxygen in two minutes and within the hour she was finally in a room at our local Children's Hospital and being cared for by a team of doctors.  By this point she was too sick to be fed, even with a bottle and severely dehydrated.  She spent four days on oxygen, much sicker than she ever was in Houston.  I was ridiculously happy when a full team of doctors marched into the room and gathered around her bed.  Besides the obvious and immediate needs of clearing the superthick sludge from her nose, they also ordered ultrasounds for her head and an echocardiogram for her heart.  The poor little dear was so dehydrated that they couldn't place an IV in her arm.  It had to be inserted in her head.

She looks so sad and sick in this picture.  The nurses upstairs couldn't believe the ER staff downstairs sent a baby less than a month old home with RSV.  They explained that typically such a diagnosis in a baby that young meant automatic admittance.

As much as I was sad that my poor little lamb was so sick, the six days that I spent with Beth were such a blessing.  I was forced to just rest.  There was nothing to do but sit and snuggle and let someone bring my meals on a tray three times a day.  It was blissfully quiet and peaceful.  I badly needed to quiet my heart and prepare for the next three months as we waited for our second trip back to Houston.  When we left the hospital not only was she a healthier baby, I was a healthier mom.

With the dreadful RSV behind us, we settled in to a sort of normal.  Baby Beth was holding steady.  Her heart was large, in the upper limits of normal, but normal nonetheless.  Dr.  Chen's advice still held true, treat her like a normal baby.  And so September melted into October.  When we returned for her 8 week checkup, we were given a surgery date.  Wednesday, November 29th.  The week after Thanksgiving.

Baby Beth - Headed Home

"Treat her like a normal baby."

I drew a deep breath.  Like a normal baby?

 It seemed impossible.

 After six tense weeks of living in exile, with close monitoring, weekly echo cardiograms, daily kick counts and hourly prayers, Elsabeth was here.

The time spent in the acute care unit was very peaceful

After a C-section, four nights in the NICU, two in the PACU, and one in the Ronald McDonald House, we were free to go home.

Weighing in at a healthy 8lb 7oz, my warrior princess looked just like her older sister, Ana.  Pink skin, lots of dark hair, bright and curious eyes.  She's strong, able to pick her head up and give me hungry little kisses on my chin.  She's serene and peaceful.  It's as if a mantel of prayers and a company of angels are surrounding her.  I believe that they are.

But could I treat her like a normal infant?

Dr. Chen continued, "She looks wonderful.  Her heart is functioning well.  The aneurysm is unlikely to rupture at this time.  All of her vital signs have been right on target since birth.  These are all hopeful signs that she's stable and able to travel home.  Let her grow.  In several months she will be larger and better able to handle the first surgery.  In the meantime, have a cardiologist in Tulsa follow her.  You have other children.  You know what normal looks like.  Anything out of the normal, let me know.  I'll see you back here when she is 8 weeks old."

I couldn't believe that just like that we were free to go home.  It was scary to think of traveling so far with someone so little.  We weren't sure if we were ready to be so far away from our doctors and treating hospital.  We had even considered staying in town for a few more days.  There was just one little problem . . .

 "One more question, Doc." Robert spoke up.

"We were thinking about staying in town this weekend.  But there is this storm coming in today, Hurricane Harvey.  Should we leave?  We don't want to get stuck in evacuation traffic in a hurricane with a newborn.  What do you think?"

"Get out.  You need to leave immediately, while you still can.  I have seen what happens when this city floods.  You don't want to be here."

And so we did. 

I find it more than a little ironic that I began this series about the birth of our daughter comparing it to a storm, a hurricane with God at the center.  And now here was the Storm of the Century bearing down on the Houston area in a matter of hours.  We were blessed to be able to gather our things back at the Ronald McDonald House and were on the road home by early that afternoon.  It was surreal to see people boarding up windows and toting truck beds full of water.  This was the real deal.  Surprisingly, traffic was not any worse than usual. (Which is bad enough!)  We stopped every two hours to feed and change Beth.  After resting overnight in Oklahoma City and spending the day visiting with a few family members it was time to finally and truly head home.

My Grandma Kimball

  We bumped our way up the driveway.  The twosome that had driven down it was returning as three.  Praise God!

"Welcome home, little one."

And then came the tears.  All the pent up emotions, the fear, the pain, the joy, finally overflowed the sturdy floodgates I had constructed.  The deluge continued for two weeks.

I cried in the backseat as I unbuckled her.
I cried as I entered the house.
I cried when the kids woke up one by one the next morning to discover a complete and altogether new family.
I cried when Ana brought me The Story of Ferdinand to read to her as it summoned the memory of a NICU father reading this very story to his critically ill infant.
I cried as the grim news from Houston relentlessly rolled in.

I cried for two weeks, until another crisis jolted me back to sanity.  Yes, Baby Beth is by the grace of God a healthy and miraculously normal baby.  If it wasn't for the sharp eyes of my obstetrician, we would never know anything was different about her.

 It was a completely unrelated turn of events that landed her in the hospital at the age of 3 weeks.

It was RSV.

Saturday, September 30, 2017

Baby Beth - Delivered

Six weeks.

It's been six weeks this morning since I first held my little girl.  This evening we are going to get family pictures taken.  Such a normal thing to do.  But, as you know, this has been anything but a normal journey over the past three months.  I still look back at events that happened in late June and early July and shake my head in disbelief.  "That took place before Houston.  Before we knew . . ."  Our life will ever be divided into Before and After this point.

I have spent the last six weeks trying to capture my thoughts and feelings in a blog post.  As a result, I have three posts begun and none of them finished.  Coherent thoughts are very slippery things in the postpartum period.  Even more elusive are my ever shifting feelings.  Elation, exhaustion, a drive to keep going, the wish to give up and just sleep for a month, fear and faith, anticipation and anxiety.  A rainbow of peace after a thunderstorm of tears.  But this is all part of the healing process.  Healing as I recover from birth.  Healing as I snuggle the little miracle that is gazing deeply into my eyes.  Healing as I minister to a family that has been separated and stretched.  Healing as I look into an unknown future. 

Six weeks. 

Thank you, Father for your overwhelming faithfulness, compassion and mercy.  You have provided for us every step of the way.  I know that You will guide the future as You have the past.

Our beautiful home for several weeks
"Have you ever had any complications from anesthesia?"
The Anesthesiologist seemed to tower over me as he checked off the questions on his clipboard.

"Well, out of three epidurals only one of them was completely effective.  The other two only worked on one side.  Quite the ripoff, if you ask me!"

The Dr. jotted a quick note and explained what he would do to make sure that this epidural worked completely . . . on both sides.

It was very comforting to see the care that each member of my medical team was taking to make sure that all the bases were covered and that Robert and I felt comfortable with each step.  Debbie from the Fetal Center dropped by the prep room to chat.  She said that she had arranged to be in the OR with us and would be glad to take pictures with Robert's phone.  That simple offer meant so much to both of us!  Mom and Sam came in with the kids to give hugs and kisses.  After shooing the younger three away from stumbling over my IV cord for five minutes, their time was up.  Time for Miss Beth to make her big debut!

Dr. Patel was present and discussed the two units of blood in the room she had ready for me as well as the two downstairs, just in case it was needed.  She had an extra IV port placed.  Debbie described how Dr. Moise had awakened from a bad dream and had given extra instructions to make sure everything went well with the baby.  My anesthesiologist conferred with his attending instructor about the epidural catheters and they decided to place one more large bore IV for a grand total of three.  The curtain was raised, the lights were blazing . . . Action!

The super duper epidural must have worked like a champ.  I could barely feel them pushing and tugging as they worked closer to delivery of our little girl.  The energy in the room surged when Dr. Patel announced she was ready to make the uterine incision.  Someone called out the time as 12:41.

"Baby!  12:42."

I held my breath, waiting for the little cry.

They were suctioning her lungs  . . .

There it was!  A brief little gurgle at first, building up to a genuine cry at last.  Robert was standing on tiptoe, to see over the curtain.  Debbie called him over.  I could hear the weight, 8 lbs, 7 oz.  They were marveling over how pink she was.  She had the APGAR scores of a very healthy baby.  I breathed a prayer of thanksgiving.   Her heart was handling the transition very well.  Finally they brought her over for me to see.

Oh my!  All that dark hair!  And that little scrunched up nose!  And so pink and plump!  A more healthy looking baby I had never seen.  I wanted to hold her, inhale her fresh scent, give her a chance to nuzzle around but already it was time for them to take her up to the NICU.  And like that, she and Robert were both gone.

So much for the "Golden Hour" of bonding.  I was disappointed that was the way it had to be.  But so very thankful that this was expected and planned.  How terrifying it would be for an unsuspecting family to be rushed through an emergency c section, not know what was happening or what was wrong, for the baby to be suddenly rushed up to the NICU and the mom left on an operating table to be sewn up, utterly unable to do anything for her fragile and helpless baby.  

I was feeling rather fragile and helpless myself.  I had no idea that I would be stuck in bed until the next morning.  Nor that I would be so exhausted and loopy that I would be unable to stay awake long enough to kiss my kids goodbye.  As I drifted in and out of sleep, I wondered how the baby was being fed and if she would know how to nurse if and when I ever got up there to see her.

Robert got to feed her first!

The next day dawned way before dawn.  Nurses were in and out, taking my vitals and pushing all over my belly.  Ouch!  That hurts so much more when you've been cut open!  It was time for me to get up and out of bed so that I could get upstairs and see my baby.  I was eager to do everything I could to get moving.  But, wow!  It was three times more difficult than I had imagined it was going to be.  And I have a very active imagination.

At last I was mobile enough to hobble over to a wheelchair.  Robert and my mom wheeled me through the halls and into the elevator.  My mind was churning.  What would she look like?  Would she be hooked up to wires and machines?  Would she be in any pain?  Would she know her mamma?

At last, I bent over her warming crib and so very gently lifted her into my arms.

"Hi there, sweetie.  Mamma's here."

She turned her head towards me and opened her mouth. 

She knew me and she needed me.  And I needed her.

Friday, August 18, 2017

Baby Beth - Blessed

It's hard to believe it's been a month since I had this conversation with Robert.

"I just spoke with our nurse in Houston, Debbie.  She said for us to come right down and they will get us in on Monday."

"So, we'll see the doctor on Monday?"

"No.  We're having the baby on Monday."

I blinked a few times.

"Okay . . . So, I guess I need to get home and pack then."

The next two hours were some of the most intense I've ever experienced.  I didn't have time to panic.  Just do the next thing.  That meant taking Cy to get his monthly allergy shot.  Picking up glasses at the optometrist.  Dropping off library books.  It was insanely calm, but intensely focused.  Kind of like the eye of a hurricane.

I called our violin teacher and canceled lessons until future notice.  I met my best friend as previously arranged and explained I wasn't going to need the maternity clothes she had brought.  I started cancelling the slew of doctor's appointments I had set up for the kids before the next school year.

I arrived home, ready to start packing for myself and Robert.  But what should I bring for the baby?  I hadn't had a baby shower yet.  I wasn't sure what sort of clothes she was going to need.  Preemie?  Newborn?  I hoped the NICU would provide something until I could get to Wal-Mart.

That's when my phone rang.

It was Debbie, from Houston.

There were no available appointments for Monday.  But she could get me in for an MRI on Wednesday with further tests at the Fetal Center on Thursday.  Then I could meet some of the specialists the following Monday.

"Wait, I'm not delivering this Monday?"

"Oh, no sweetie.  We need to do lots of tests and get your medical team together.  We'll know more next week."

I blinked a few more times.  Well, alrighty then!  I'm still not exactly sure where the Monday delivery information came from.  But I was really thankful that wasn't the case.  At least I could breathe for the evening.

My mom, sister and brother in law brought dinner and spent the night strategizing with Robert.  They were working out the details of how to take care of the kids in our absence.  I didn't know what to expect or what was going to happen next, but it was so comforting to have my family surround me.  I knew it was going to be okay.  We were going to make it through this, together.

The next day, Saturday, my mom took the boys to Oklahoma City while my sister took the girls home with her.  It was so hard to hug them goodby.  I didn't know when I would see them again or under what circumstances.  Would we be a family of 7 or 8 next time we gathered together?

Saturday night found me in the Emergency Room.  Whereas I would have written off the regular contractions as harmless Braxton Hicks a week before, now we had to make sure they weren't a real indication of labor.  We were planning on leaving for Houston in the morning.  It would be a 7 hour drive.  I sure didn't want to deliver on the side of the road.  It was false labor, as expected.  The doctor gave me a prescription to take with us as insurance against further contractions.

It was hard to walk past the bassinet as we prepared to load the car.  I wasn't sure under what circumstances I would see it again.  It felt very surreal to drive down the hill, just the two of us, knowing that there should be three of us coming back up in an unknown number of days. 

It was the beginning of a journey.  One we cannot see the end of.  Truly this is one of those watershed moments from which there is no return.  Our lives will never be quite the same again.  But in which ways, it is impossible to fathom.

When we arrived in Houston, Monday afternoon we knew no one.  The city was huge and the traffic terrifying.  We spent Monday night in a hotel, uncertain of how we were going to afford staying long term if necessary.  Robert found an AirBNB closer to downtown for Tuesday night.  We needed to be nearby for our early MRI appointment.  Since I was still expecting that we would be delivering sometime within the week, I went on a nesting binge at Wal-Mart.  Sleepers that snapped (to accommodate NICU wires and leads) burp cloths, muslin swaddling blankets, a bottle of Dreft, and a little plush lamb.

Isaiah 40:11 has always been a special verse to me.  But in the chaotic calm of that weekend, I knew this was going to be our verse.  Mine and Beth's.

 He shall feed his flock like a shepherd: he shall gather the lambs with his arm, and carry them in his bosom, and shall gently lead those that are with young.

This little lamb was something I could snuggle while we waited.  Then it would go into her bassinet.  

As we prepared to haul our suitcases into the Bed and Breakfast, my phone rang.  It was a lady I had never met before, offering us a place to stay in her home.
A friend of a friend had a friend who knew two other friends who both were offering us places to stay.  Only God could do that!

And so it came about that for the next four and a half weeks, God has provided us with three different host families, several churches to visit and many new friends.

God used our precious friends from our home church, Mike and Lori who reached out to their former pastor in Texas City, Bro.  Williams.  Bro. Williams was out of state on vacation, but he took the time to contact a pastor friend in Pearland.  Pearland First Baptist had two families that offered to reach out to us, Todd and Karen, and Howard and Tammy.  So for three and a half weeks we got to know the area south of Houston.  Both Pioneer Baptist and Pearland FBC were extremely hospitable and gracious to us.  I am so thankful for the chance to get to know these kind and loving brethren.

During this time, we had many important Dr.'s appointments.  The MRI was absolute torture.  I had to channel my inner Pacific lifeboat survivor to make it through two and a half hours of lying absolutely still with a 40 pound bowling ball that jumped and wriggled about my midsection.  My arms were strapped to my sides and every now and then the plank that I was laying on would suddenly thrust me deeper into this giant powdered donut hole.  I just knew my belly was going to get stuck.  And then I got hot.  And then I couldn't breath.  I was white knuckling it from the two hour mark on.  I had a panic button I could hit.  But it would interrupt the series of images they were taking.  I might have to repeat the whole thing.  So I gritted my teeth and focused on breathing while sneakily moving my toes.  But God was very merciful.  He reminded me that this was one life I could fight for.  That's not always the case.  So often loved ones are gone without warning.  No chance to fight.  No opportunity to say goodbye.  I thought of the little ones we had lost.  At least this time I had the chance to make a difference and if that meant lying still in a Powdered Donut Hole of Doom for two and half hours, then by God's Grace, that was what I was going to do.

What began as a whirlwind sprint to Houston turned into a marathon of endurance.  After the initial consultations with the Maternal Fetal Specialist and Cardiologist we still needed to meet with the Pediatric Neurosurgeon and the Neurologist.  And the Geneticist.  And the Neonatologist.  And the Obstetrician.  It quickly became apparent that the baby was stable enough that immediate delivery was neither necessary nor advisable.  That was good.  But it was also apparent that we were going to have to spend a month away from our family with nothing to do in between doctor's appointments but laundry.  That was terrifying. 

Somehow, someway, that month has ticked by.  The days have been spent at Taco Bell, working at the computer, business trips for Robert, meeting friends for lunch and a pedicure for me, and yes, some quality time at the laundromat.  The past week has been absolute beat-my-head-against-the-wall-because-I'm-so-tired bliss.  Our family is together again, all seven of us.

This not-so-small miracle began with us showing up on the doorstep of some old friends.  On a whim we decided to look up a family that had moved to the Houston area some 15+ years before.  Just to say howdy.  Mrs. Wilson peered around the curtain at Robert in his white dress shirt and black slacks, looking for all the world like a Jehovah's Witness. 

"Do I know you?"  We could hear the suspicion in her voice.  Not another door to door missionary!

Robert laughed and told her our names.  Before we knew it we had been whisked into her living room, hugged soundly and she was already begging us to stay with them.  We were quite overcome with the gracious welcome. We hadn't come to seek a place to stay, but the truth was our hosts in Pearland needed their guest cottage back.  We did need to find a new home.

"What about your children?  We have a bunch of empty rooms upstairs.  Bring them down here with you!  Really!  We mean it.  Make this your home for as long as you need."

What could we say at this gracious provision but Thank You?  Once again, God was loving us through His people.  We felt incredibly humbled and blessed.  And so, my sister in law, Sam, drove five kids over seven hours so that they could spend the next ten days with us.  It has been wonderful!  The first day, I just sat and watched the kids play in the spacious loft.  And then we picked up where I had left off reading a book to them over the phone.  We celebrated Cy's birthday and saw a few local sights.  We have cooked together and washed dishes together.  We've spent countless hours at doctor's appointments together.  We all needed this time to just be normal together.  Yes, I'm tired.  But it has been so worth it.

Today is our last normal day.  Robert is taking the kids to give some peace and quiet while I take Ana to get her cast checked (yes, she broke her arm while I was away.  Her aunt took her to the doctor and kept me updated.  That was another reason why I needed to see my babies!  My first child to need a cast and I couldn't be there for her...)  I will be doing nesting type things around the house...laundry, packing, tidying up.  My mom and Sam will be flying in late tonight and I'll be getting up early in the morning.  A last minute c section sounds scary, but having a month to wait and contemplate it is absolute torture!  I'm so glad we have finally arrived at go time.  We've done our best, it is as always in God's hands now.  He has lead us this far.  He has provided in so many unexpected and delightful ways.  He has used family, friends and complete strangers.  Within minutes of Robert sharing the situation on Facebook, way back in July, prayers and well wishes began rolling in.  Before we had even left town, my friend, Amanda had put together a Go Fund Me account and others were sending donations to our pastor.  Church family has rallied to mow our lawn and help my sister, Joanna with meals while she cared for our children.  Grandparents, aunts and uncles have been there to provide childcare, transportation, shopping and special birthday excursions.

Most of all, I have felt supported in a cocoon of prayers.  In those first uncertain weeks I didn't even know how to pray.  It was such a blessing to read the comments on Facebook of all the friends who were holding us up in prayer.  Praying for things I hadn't even thought of.  It was one of those moments when you realize how weak you are, but how strong the love of Christ is and you can tangibly feel it through His people.  Intercessory prayer is such a ministry!

The final week has been marked by strong spiritual warfare.  I have struggled with discouragement and fear.  But in the last few days peace has returned.  I know I am being gently led by my Shepherd.  I don't know what this weekend is going to look like.  I'll confess to being terrified by the thought of recovering from a C section while trying to care for my baby who will likely be in the NICU.  But the words to this hymn are just as true in the difficult days as they are in the sunny ones.

All the way my Savior leads me
What have I to ask beside?
Can I doubt His faithful mercies?
Who through life has been my guide
Heavenly peace, divinest comfort
Ere by faith in Him to dwell
For I know whate'er fall me
Jesus doeth all things well

Tuesday, August 8, 2017

Baby Beth - Diagnosed

The ultrasound screen flickered to life.  This was my next to last bi-weekly appointment.  One more milestone, practically in my rear view mirror.

Dr. Silver was taking his time with the measurements today.

"Her head looks big."

Great.  At least I was already planning on the epidural.  I might as well turn in my crunchy hippy, natural childbirth card.  A few weeks before Elle was born, I was miserable with a terrible cough.  At an appointment much like this one, Dr. Silver heard me coughing from out in the hall.  He stuck his head in the door and offered to prescribe me an antibiotic.

"Oh no, it's just a cold.  I don't want an antibiotic.  I'll get over it on my own."

He shrugged and walked out.

Guess who coughed herself silly through an un-medicated labor of a 9 lb baby?

It sure wasn't the woman in the next room.

After a traumatic delivery, I had a hard time recovering and eventually decided maybe I needed antibiotics after all.  The cough instantly went away.


I guess sometimes the doctors actually do know something.

That's why when Dr. Silver suggested that Ana be delivered a week early, and that I go ahead with the dreaded epidural, I acquiesced.  Not without great mental effort and gnashing of teeth.  But it was part of the healing process.  Learning to trust and not lean on my own understanding.  And everything turned out great.

A few weeks before this particular appointment, Dr. Silver had a frank conversation about my delivery options.  He was uncharacteristically uncomfortable with my plan to deliver at St Francis South.  I have always given birth there.  It's a small ancillary hospital in the larger St Francis system.  You can park right outside the front door.  The nurses are friendly and unhurried.  It's as close to home as you are going to get and still be in a hospital.  I couldn't understand his hesitation.  He made it clear that it was my choice and he would still be glad to deliver at the smaller location.  But "just in case" something weird happened, he would prefer to be at the region's largest and best facility.

I took a deep breath, and agreed to switch locations.  Maybe God was giving him a nudge.  I was going to listen this time.

So, Miss Beth has a large head. She's on track to be 9 lbs.  So far this was a pretty routine scan.  The doctor paused and took a closer look at the screen.

"I don't know what this is.  I've not seen this before."

I craned my neck to the right as he swiveled the screen towards me.  It very clearly looked like a hole in the center of my little girl's brain.

"This dark spot might be fluid.  Here, let's switch views.  There's blood flow-hmm."  He abruptly toggled away from the image and hastily scanned the rest of her body.

"I really have no idea what this. But I'm going to show this to my partner, Meagan.  It might not be anything, but it certainly was not what I was expecting to see.  Don't worry and don't Google!  We might want you to see a high risk doctor.  But don't worry!"

And he was gone.

As I left the exam room, I could see him studying the image on his computer.

"See you later, Doc.  Don't worry about me worrying because I'm not going to worry!"

Uh, yeah.  I was worried. 

As soon as I reached my car I called Robert and told him the little that I knew.  Then I hastened home for a good old fashioned Google search.  The one thing that stuck in my mind was fluid.  Water on the brain.  Hydrocephalus. 

The Google results were mixed.  It can be a big deal.  It might be minor.  Lots of people have it.  It can accompany Down's Syndrome.  And then I found the documentary made by TLC: "My Child's Head Won't Stop Growing!"


This was the first inkling Robert and I had of what might lie ahead.  We waited the weekend out, rather impatiently.  Rather than waiting for the MFM office to call us, we called the Maternal Fetal specialist ourselves on Monday.  The nurse said that the Doctor Himself had our file on his desk and would determine how quickly he wanted to see us.  Well!  We called Dr. Silver's office for help.  The nurses sounded worried and pledged to pester the specialist until we got our appointment.  We got a call the next day: Thursday at 7:30 - Be there.  You can bet we were!

This ultrasound tech was professionally uncommunicative as she did the scan.  She was happy to converse and make small talk.  She would tell us which body part she was looking at.  But not a clue as to what it all meant.  Robert and I did our best to be relaxed and keep the mood light.  She would banter back.  But at the end of the scan she casually remarked that sometimes her job was difficult.  She saw a lot of sad diagnoses.  It broke her heart to know that often the parents were going to receive devastating news.  But there was no time for me to ponder that and whether she was giving us a hint.  It was time to meet the doctor.

Dr. Smith began with an apology.  "I misread the report sent in from your OB.  I thought you were here for a maternal AVM.  I see now that this is a fetal AVM.  I've done some research last minute and I will have some pages copied off for you."

Robert and I looked at each other in bewilderment.  What in the world was an AVM?  What did it have to do with hydrocephalus?

"So, this spot on the brain, it's not filled with fluid?"

"No, it's blood.  This is a fetal arteriovenous malformation.  The arteries deliver blood at high pressure from the heart.  This high pressure blood flow is supposed to be diffused to the surrounding tissue through a system of capillaries.  Veins should join the capillaries to take the lower pressure blood back to the heart.  In this malformation, there are no capillaries.  Arteries are joined to the veins, creating a mass of tangled connections and high pressure blood flow through veins that are not designed for that.  This has caused an aneurysm, or ballooning in the veins.  The blood rushes back down to the heart too forcefully.  Because the brain is not getting properly oxygenated, the Co2 sensors signal the heart to beat harder and faster.  This is a vicious cycle that fatigues the heart and can eventually lead to heart failure.  The aneurysm can rupture, which would be fatal.  You are going to need a c-section.  We can't risk the pressure on her head in a vaginal delivery.  Honestly, I've only seen this once in my thirty years of practice.  Your baby is going to need a pediatric neurosurgeon.  The only one here in Tulsa left last month.  There is one in Oklahoma City, but I recommend you travel down to Houston.  They have the best doctors in the region there.  I know a few of them personally.  This is where these cases are usually sent."

Robert and I just sat there, trying to wrap our minds around the swirl of new words, new thoughts, new risks, new options.  Nothing really made sense.  I had somehow neglected to bring my purple notebook where I write down everything that is important.  I fished out a business card and a pen and hand them to Robert.  He tried taking abbreviated notes on the back of it.  AVM.  Aneurysm.  Houston.

"Oh, and one other thing.  There is a small hole in the baby's heart.  It can be a marker of Down's.  You can get a blood test today to find out if that is the case."

Really, Down's was the least of our worries at present.  Our entire world had just been turned upside down.

Dazed and confused, we walked out of the building holding hands.  We would go get the blood test, then grab some breakfast and talk about what had just happened.

The waitress gushed over us.  "Aw, your baby belly is so cute!  You look just radiant!  Boy or girl?  When are you due?  Is this your first?  Six!  My goodness!  Are you going to stop after this one?"

I fielded the questions as best I could.  But my head was in a whirl.  When would she be born?  Where would she be born?  I looked down at the papers from the doctor.  This wasn't Dr. Google.  These were photocopied pages from his personal encyclopedia.  It said things like: "if the fetus survives to birth".  I looked up at the pictures covering the wall of the cafe.  There was one of a little girl releasing a heart shaped balloon.  I remembered myself as a little girl, releasing red balloons at the NICU reunion picnic with my little brother.  Balloons of hope, balloons of remembrance.  Which one was this little girl setting free?  Was I going to have to let my little girl go?

Dr. Smith had promised to look into both OKC and Houston medical centers.  We expected a phone call sometime on Monday.  We had a followup appointment scheduled with him for a week later, on Thursday.  The very next day, my phone rang.  It was Dr. Smith.

"I have you all set up in Houston.  The coordinating nurse will be contacting you.  Good bye and good luck."

I set the phone down in my cup holder with a sigh.  I wasn't sure what the future held.  But right now I needed to finish running my errands.  An hour later Robert called. 

"I just spoke with our nurse in Houston, Debbie.  She said for us to come right down and they will get us in on Monday."

"So, we'll see the doctor on Monday?"

"No.  We're having the baby on Monday."


Saturday, August 5, 2017

Baby Beth- Protected

My partner in crime

The cicadas buzzed and whirred in a heady late June cacophony.  I grinned from atop my perch, the roof of Robert's silver Elantra.  Ana scampered up beside me like a sassy brown chipmunk.  Just like her mamma, she thought the forbidden heights of the car top a grand adventure.  I was just thankful that I could climb up a car at 31 weeks.  And I was thankful that Ana was safe beside me.  The guys were making me nervous.  

It was a classic male bonding moment.  A grandfather, a dad and Three Stooges three young men  coming together to achieve the ultimate test of manhood . . . loading a long dead, rusty red pickup onto a flatbed trailer.  I will spare you the gory details that led up to this moment.  Suffice it to say, I was more than a little nervous to watch my 11 year old wrangle the battered Chevy into submission as his father towed him across the yard with an equally antiquated Suburban.  Yes, Ana should definitely stay with me, up out of the reach of danger.

Eventually, 'Ol Red was winched up the shaky ramps and lay panting on the bed of the trailer.  He didn't look quite conquered to me.  There seemed to be a sinister glint in those cracked headlights that I just didn't trust.  Ana and I hopped down for a closer look.  Dee had been feeling left out of the action, being relegated to shotgun whilst Cy got the glory of the pilot's seat.  Now was his chance.  He asked for permission to push the ramps back up into the well beneath the trailer.

He crawled underneath the truck to set about the task.  As I sat feet away on the grass, with my chipmunk companion in my lap, a terrible thought crossed my mind.  What if that treacherous truck started to roll backwards?!  I pushed the thought away with a shudder.  It was just those pregnancy hormones at work.  I refused to be held captive by fear.  What were the odds of something like that happening anyways?  The truck was  secured by the winching chains.  But still, those back tires were awfully close to the edge.  And Dee's head was right there, below the overhanging truck bed . . .


I didn't take the time to plan or execute a graceful ascent from my grassy tuffet.  No sir!  I hurled my heavily pregnant self from a leisurely lounge to a sprinting lunge in less than a second.  


And that really was the end of it.  Dee scooted out, Cy jammed the parking brake and the men tightened up the chains.  Crisis averted.

Except I suddenly couldn't stand up straight.

I knew immediately what had happened.  The medical name is a little awkward, but it's basically a wrenching separation  of bone and cartilage.  It had been the bane of the later months of pregnancy with my last three children.  I had dreaded and feared this moment would come and that it would keep me from my beloved karate.  And here it was, on steroids.  The sassy girl that had glibly clambered up a car and sat comfortably in  the grass, hobbled back into the house, gripping the walls for support.

Things haven't been the same since.

It's true, I no longer have to hold on to the walls to be able to ambulate.  So that has improved.  But every step hurts.  Getting dressed hurts.  Getting out of the car hurts.  Getting out of bed hurts!  And yes, karate is absolutely out of the question.  I did fudge for a week.  I came and sat on a punching bag and timed sparring.  I had no idea that would be my last night at class.  I'm really glad I didn't know, because I would have been sad and maybe cried.  And let's face it, karate dudes aren't into crying quite so much.  It was better this way.

I have to admit, I was relieved that at least I was benched due to injury, rather than sheer exhaustion.  Because I was almost to that point.  It would have helped if I had acted like I was pregnant.  But nope!  I kept trying to keep the pace I had set the year before.  To be honest, I was still in utter denial.  This injury changed everything.

I had to slow down.  Way down.  Okay, life didn't slow down, just me.  I walked like a sloth.  It took forever to get anything done.  I was suddenly much more aware of the tiny person that I was carrying around.  I started counting down the weeks instead of up.  Miss Beth was going to be here soon and I needed to get ready!

  But I now know that God was getting me prepared for the next step.   He was keeping me from doing anything that could harm the baby.  It turns out hobbling around because of separated cartilage is very effective at keeping one out of trouble.  For instance, I wasn't tempted to climb the Tower of Doom at Bounce U.  Couldn't say that during my last pregnancy . . .   I didn't even want to swim, much less jump off the diving board or give water taxi rides.  No more nature hikes.  I was benched in every sense of the word.   It would still be several weeks before I could appreciate how truly gracious God was in forcing me to slow down.  I absolutely believe God injured me, on purpose!  And praise Him for it.

   July 5th was my next routine appointment with my OB.  Dr Silver and I go way back.  I tried to escape his practice by going to a midwife, he saved my life.  I sent him about 15 new patients.  We have kind of a cool relationship now.  I suspect his excitement at finding out I was with child was second only to Robert's.  One thing I really like about him is his relaxed demeanor.  I know that he will tell me the truth, let me do pretty much anything I feel like and not get too excited unless there is really cause to be.  Hence me feeling perfectly comfortable in being as active as I could get away with.  He usually backed me up.  I have always said that if Dr. Silver acted concerned, I would take him seriously.  

That's why his comment that Wednesday morning really got my attention.

"I don't know what this spot here in the brain is.  I'm really not sure what I'm looking at.  It looks like fluid."