Thursday, March 8, 2018

A Day in the Life: Special Needs Edition with 12, 10, 8, 6, 4 and 6 months - Part 2

"Oooh, ooooh, sunny days, clouds away . . ."  

Ana (4) is crooning her own rendition of the Sesame Street song.

It brings a smile to my heart.

I can't control the clouds, but I can remember the sun.

My last post was mostly overcast, with just a glimmer of hope peeking from behind the clouds.

I hope this post will be full of sun, even if it's the watery and uncertain warmth that comes with early March.

"We are troubled on every side, yet not distressed; we are perplexed, but not in despair;
Persecuted, but not forsaken; cast down, but not destroyed." 
2 Corinthians 4:8-9

I might be done, but I'm not finished.  

Maybe I stopped, but I haven't quit.

I'm still on the battlefield, I just changed tactics.

Joshua 1:9 caught my attention yesterday in my Bible reading.  Today it was quite literally a sign.

At the chiropractor for his first treatment!
God has set so many confirmations before me in the past 24 hours.  A friend sent a most timely reminder that maybe therapy should take the place of school for a while.  The lady at the local homeschool book store advised we should focus on wellness first, I mused over the possibilities of Unschooling and God provided a generous gift from a dear friend so that we could go to the upcoming homeschool convention where Special Needs is going to be a major focus.

I know what I need to do now.

It's scary, but I'm letting go.

Letting go of the preconceived notions about what education should or should not look like.

Letting go of the pressure I have put on myself.

Letting go of the fear that I might disappoint others.

Letting go of the fear that I might fail.

And hopefully letting go of the pride.  I was leaning very heavily on my own brute strength (stop laughing!) to power through.  And that self reliance is not what God had in mind when He said,
". . . Not by might, nor by power but by my spirit, saith the LORD of hosts." Zechariah 4:6

I don't know how the next several months are going to play out.  But I do have a direction to head in.  I have some principles to guide me.  None of it is very radical.  Just a shuffling of priorities.

 Today was a different day from yesterday.

I slept in.

Because we had to be at the chiropractor first thing, I didn't even try to have a Morning Meeting.  We did a little school in the waiting room and then we went to the park.  And then we came home.  I've been writing, the kids have watched Myth Busters and done a few chores.  I dealt with multiple major meltdowns from my sensory kid.

But there is more happening here than meets the eye.  Things have been happening under the surface, I just couldn't see them because of all the clutter in my mind.  Even though I have felt like I was making no headway whatsoever this week, that's not true.

Without my killing myself, here are the top learning achievements of our week:

Chore cards.  Duggar style.  Morning chores, kitchen chores, afternoon household chores and evening chores, one step at a time.  They hang around the neck so that you can't lose them or forget that you are in the middle of chores.

Who am I kidding?

Of course they lose them and forget they are supposed to be doing chores!  Still, it works better than anything else I have ever tried.  If we can just be consistent, we might survive this season.

Turn them loose in the kitchen.  Alvin brought me these lovely rust colored scrambled eggs.  When I asked him what he seasoned them with he replied, "That stuff that no one likes to have on their tongue."
Say what?!
Turns out to be sriracha and slightly slimy green onions.

Habit Training.  Good ol' Charlotte Mason.  Pictured alongside the rusty, slimy eggs is the Laying Down the Rails handbook of awesomeness.  This term (defined by me as six weeks) we are studying the Habit of Truthfulness.  It goes so much farther than avoiding bald faced lies, y'all!  This study is stepping on my toes!  We are maintaining last term's habit of Obedience.  Attention is on deck for the next term.  Just one thing at a time.

Reading.  Books are my love language.  This is how I connect with my children.  Unless I lose the power of speech, I have no plans to discontinue reading daily with the gang.  I am enjoying the Simply Charlotte Mason history program.  It's easy to take on the road and read in waiting rooms.  It fills me with delight.  The kids retain what we are reading and don't even notice that it's "school".

Waiting Room Science

Delight Led Learning.  I did not, repeat DID NOT assign Cy the project of searching for a tea that tastes just like coffee, research the options, determine the best price and source to purchase that beverage, research the ingredients and write a report on the medicinal properties of chicory.  

He just did that for fun.

Alvin took apart a toy car and a toy gun, taped some wires to a battery and made a moving motor.  He explained that the positive and negative sides of the battery pushed and pulled to make the motor move.  He demoed this for me in the chiropractor's waiting room.  I did not turn this into a science project.  I just said, "Cool!"  Turning fun ideas into a "learning experience" ruins it for everyone. They learn so much more when you just turn them loose! 

Documentaries, drawing, reading, games are all ways the kids have managed to learn on their own terms during this hectic week.

Fitness.  Cy is required to look up and participate with a yoga video every morning.  He hated it at first.  Now I see him strike stretching poses throughout the day as his muscles tighten.  We have been to the park to play as well as hike twice this week.  I plan on kicking the kids outdoors as often as I can this spring.  Cy has a Vitamin D deficiency, so that's just one more reason why fitness needs to take priority over books.  He is also participating in an online class about healthy eating habits as well as helping me keep up with cooking healthy Paleo meals.

Therapy.  Be there.  On time.  That's all there is to say about that.  It is an education in and of itself and takes priority over everything else.

Opportunity.  There is a reason why this blog is called Chores of Opportunity.  You have to fit them in the corners of the day, whenever there is opportunity.  And it's not just chores.  It's anything that is truly important to you.  You can make it happen, just by looking for an opportunity and availing yourself of the spare moments that present themselves.

You fit it in, whatever "it" is.

 Just a few minutes here and there throughout the day add up.

This is how we are going to get the other subjects accomplished during this time of survival.

We will fit them in.  Not stressing, not rushing, not worrying.  Just steady, as we are able.  A reading session here, a math work sheet there.  A spelling page in the waiting room.  An audio book in the car.  And lots and lots of interesting conversations complete with impromptu Google searches.

Life Unfiltered
My children are not broken.  I don't have to heal them.  They are who God has made them to be and I am who God has appointed to love and enjoy them.

I was made for this.

"For we are His workmanship, created in Christ Jesus unto good works, which God hath before ordained that we should walk in them."
Ephesians 2:10

A Day in the Life: Special Needs Edition with 12, 10, 8, 6, 4 and 6 months - Part 1

So teach us to number our days...otherwise you might double book yourself

It's five in the morning, it's dark, and I'm scared.

Reluctant to start the day.

Afraid that I don't have what it takes.

Terrified that I might have to change.

Pulling myself together, I resolve to give it one last try.  Today would be a day of decision.  What is important?  What can I still do?  What should I give up?  What is my next step?

Perhaps most important question of all, would I continue to let that voice camp out in my head.  Sure, the actual words came from someone else, over a year ago.  But the voice is mine.

"You can't do it.
Other people can do it if . . .
. . . they had fewer kids . . .
 . . . they had more help around the house . . .
 . . . they had more money or resources . . . 
 . . . they had a higher level of education . . .
. . . they had more willpower . . .
But not you.  You shouldn't even try."

I have spent the last 13 months trying to prove that those words were false.


I will.

You just watch me.

I can honestly say that I gave it everything I had.  I pulled out all the stops.  And for awhile, it worked.

We hired a lovely lady who became our friend.  She came three days a week.  We held a strict and predictable routine.  Get up, get dressed, clean the kitchen, be ready to begin with the Morning Meeting at 9:30 sharp.  Check off the list, drag the reluctant through their paces, finish by 2.  Don't forget violin and karate practice.

Until the day it all fell apart.  My regular readers know the story.  For the newcomers, my unborn baby was diagnosed with a brain aneurysm.  Summer school came to a halt.  We temporarily relocated to Houston, leaving my five children behind.  The baby came, along with a cascade of mercy that you can read about here .  We hadn't even made it home from Houston before we received the news that we would no longer be able to employ our dear friend.  I had been counting on her to get us started in the new school year.  Now I was on my own.  The voice that I thought I had silenced returned.

"Here it is, what I predicted.  The baby would be born in August, just when school should start back and you aren't going to be able to handle it."

I dug in, against the advice of all my family and friends.  I was not going to give up.

The 8 and 10 year olds were diagnosed with ADHD, dyslexia, sensory processing disorder, and executive function delays.  Alvin and Dee share many of the same root issues, but the symptoms are opposite of each other.  I get both sides of the coin.  One is clumsy with weak muscles, the other exquisitely coordinated with rippling muscles on a slender frame.  One is incredibly mild and compliant, the other is prone to rage.  They both struggle with reading.  But one is obviously dyslexic and the other just can't focus.  They both struggle to recall the words that are just on the tip of their tongue.  My volatile one will explode when someone tries to "help" by saying the word already.  The gentle one is more likely to crumple in a heap.

As I became more desperate to provide some sense of order and control over what becoming an ever more chaotic environment, I turned to tweaking our diet.  We restarted our Paleo lifestyle, I started taking supplements and bought a workout video.

Cy, (12) did his best to pick up the workload.  As his brothers goofed off without a care in the world struggled to maintain their focus, he dug in, determined to protect me against the added stress.

I was taking Alvin to Occupational Therapy three times a week, Dee once a week and once every two weeks to counseling.

Then Cy had an asthma attack that landed him in the hospital.  He had a freak accident that jarred his spine and gave him a concussion.  He developed myoclonic tics and muscle spasms.  Just looking at his Saxon math book would bring them on to the point of incapacitation.

His brain was injured and mine was fried.

We had come to a dead end, but I refused to acknowledge that I had hit a wall.

Until five a.m. on a Wednesday morning.

And that's when I pulled out my metaphorical grappling gun to scale that wall.


I had the kids up by 7:30, four of them were bathed, most of them were fed (except for Dee who balked and wound up being hangry all day) the baby was put down for her morning nap and we sat down to do school.

We sang for Hymn Study.

We discussed our new Habit for the Term:Truthfulness.

We read about Gutenberg for History.

I wrestled the computer into submission so I could load our new Teaching Textbook CD.  Cy can't write because of a spasming dominant arm?  Fine.  We'll type.

I set up for Geography.

I take a shower, quickly, between invasions of pooping toddlers and eager first graders who want to tell me about how they know where Finland is located.

I read with Alvin.  First I read the page, pointing to every word, then he reads it.  We get through the entire chapter this way.  We also work with alphabet flashcards, sequencing and naming the sounds as rapidly as possible.

I read with Elle (6).  She does not seem to have the struggles of her older brothers.  Reading is a fun break for both of us.

I do a math workbook page with Elle and one with Alvin.  Ana (4) keeps herself occupied with puzzles and coloring books.

Elle, Alvin and Dee all work through their Spelling You See workbooks.  One of them is not like the others and rages through his task.

We eat lunch.  Except for one, who can't stomach the leftovers and packs his own snacks.

We leave the house at 1 p.m. precisely.

That's a win, right?  I'm totally crushing this Mission Impossible.  Just call me Tom Cruise.

Not quite.  I thought I was on time, but I wasn't.  I tried to be patient, and failed.  I was ever bit as hangry as my son.  The house was a mess and the kids were all in  Don't Make Mom Mad mode.

And that was just the easy part of the day.  We still had therapy sessions, a few lessons to complete in the waiting rooms and errands to run before church that night.

Looming large in my mind was the fact that our therapy load was about to double.  Cy was also going to require three days a week for the next month or two to address these tics.  If you are keeping count; that's six kids, five days, eight appointments. Every single week.


Stick a fork in me.

I'm so done.

I'm done listening to that voice.

I'm finished with failing to live up to my standards or anyone else.

As of today I. QUIT.

I am not my own woman.

I have been bought with a price.  I belong to another.  He is a kind and gentle Master.  He does not heap heavy burdens on us, too grievous to be borne.  This is not an arbitrary circumstance that I am unlucky enough to find myself in.

I was made for this.

This is my Mission and I am not a lone operative.

Have not I commanded thee? 
Be strong and of a good courage; 
Be not dismayed:
 For the LORD thy God is with thee whithersoever thou goest. 
Joshua 1:9

So, what is the next step?
Join me here for Part 2

Tuesday, March 6, 2018

Meanwhile, Back at the Ranch

Someone was having fun with my phone!

Would you believe it if I said that Elsabeth has been the easiest child to take care of this winter?

This time last year, I was so worried about child #6 on the way.  How was I going to care for and educate SIX children?!

All of that melted away as we focused on getting her the lifesaving treatments she needed.  As things stabilized for her, my other five children needed me more than ever.

Because we had met all of our out of pocket deductible expenses last year, I did my best to maximize our coverage by having the kids tested for every single thing I could think of.  I knew that Alvin had some learning issues that was affecting his reading.  So I pursued Speech and Occupational Therapy assessments.  I was suspicious that Dee had either/or ADHD and Sensory Processing issues.  This required both boys to get in depth vision and auditory screenings as well as meeting with various therapists.

Alvin is indeed dyslexic with executive function delays.  He is in therapy three times a week.  He is using the Integrated Listening System along with a speech and occupational therapist.  I have real hope that by the end of the summer he will be miles ahead in his reading comprehension as well as improved balance and coordination, executive function and speech.

Dee has surprised me in so many ways.  His hearing and vision are both excellent.  Too excellent, I believe.  He has "supersonic" hearing, to quote the audiologist.  Yet his auditory processing is at the low end of normal.  He is gifted in Visual Perception.  Not only is he testing like an adult in visual spatial skills, he revealed to me last week that he can see what ever he imagines in his mind and build on it.  He calls it "photoshopping".  His therapist said she had never heard of anyone doing that before.  I'm sure there are people who can imagine building blocks and manipulate them in their mind.  But maybe that is a more unusual trait.  The problem that Dee is facing is that he is too sensitive to his environment on the one hand, yet he seeks stimulation on the other.  That means he craves movement, input in his joints and muscles and fills that need by spinning, jumping, rolling, falling.  He is an adrenaline junkie.  Thankfully he is very coordinated and strong, so he is usually safe even if risky.  He also seeks noise and visual stimulation.  He creates his own chaos by drumming, humming, singing, loud and rowdy play, staring at lights because of the "weird" patterns it causes.  At the same time, he gets overwhelmed very quickly.  He can't handle hunger, itchy clothes, someone bumping into him or any sort of uncomfortable sensation.  He is very sensitive to temperature changes as well as strong emotions.  He is seeing the same occupational therapist as Alvin, once a week.  He is also seeing a counselor every few weeks to talk about how to deal with the strong emotions that come with this sensory barrage.

Cy has long been a puzzle to me.  I have exhausted our brilliant and patient pediatrician's resources.  Yes, he has a long list of food and environmental allergies.  He has asthma.  This landed him in the hospital about a month ago.  He seems to have systemic inflammation throughout his body.  He hurts all over, in his joints and muscles.  On Super Bowl Sunday he jarred his spine and the very next day started myoclonic spasms.  This set off a whirlwind month of doctor's appointments, tests, ER visits and general panic.  Are they seizures?  Is it MS?  It's getting worse.  Is it a spinal injury?  Why can't we see the neurologist any sooner?  MRIs and EEGs.  The diagnosis:Tic Disorder.  Maybe it will go away.  Maybe it will develop into Tourette's.  I had one last doctor to try, a neurological chiropractor.  The only one in the state of Oklahoma is providentially located in my hometown.  He believes that Cy's asthma attack was in response to a virus that was also attacking his brain.  When he zoomed off the end of a slide, jarring his tailbone, it triggered a response in his brainstem which has set off this chain reaction of spasms, tics and muscle soreness.  He is going to need rehab three times a week.

Add in regular doctor's appointments, check ups with the pulmonologist, cardiologist, ophthalmologist (Dee has calcium deposits along his optic nerve, I am monitored for retinal detachment and Cy was having blurred vision and sensitivity to light from this brain injury) and allergy shots, not to mention general Urgent Care visits for various and sundry weird stuff, and I'm just plain tired.

This has been one of the most challenging seasons I have ever gone through.  It has been incredibly long.  New things keep popping up.  I don't know what to expect next.  I don't know how to plan for any given day.  I don't know which direction to take for school.

So, I pray.  I Google.  I listen to audiobooks with the kids in the car as we drive hundreds of miles and dozens of hours every week to and from appointments.  Somehow, some way, it all works out by the end of the day.

 By God's grace we survive.

Join me Thursday for a peek into our lives as I participate in the Homeschooling Day in the Life series from Simple Homeschool


Bring Your Own Coffee

We are both going to need it!

Thursday, March 1, 2018

Baby Beth - The Miracle

"When the LORD turned again the captivity of Zion, we were like them that dream.  Then was our mouth filled with laughter, and our tongue with singing: then said they among the heathen, The LORD hath done great things for them.  The  LORD hath done great things for us; whereof we are glad." Psalm 126:1-3

The slender lady across the table adjusted her hajib.  

"Our daughter had open heart surgery a few weeks ago.  We will see her doctor on Wednesday.  Maybe we can go home then.  We will see."

It had taken several days of residence at the Ronald McDonald House Houston before I had the opportunity to visit with this Muslim family.  The mother had caught my eye the very first morning after we had arrived.  She was always in motion, it seemed.  Cooking in the common kitchen area, chasing her rambunctious toddler, trying to keep her young family entertained in the midst of a topsy turvy construction zone.  She looked exhausted and wary.  We became united of a Monday morning when tragedy struck.  Earlier that morning the kitchen had been walled off for demolition, with our groceries still inside!  Like most of my other interactions with families at RMH Houston, a shared woe sparked kinship.  As we commiserated over the lost victuals a wall of a different sort started to come down.  We continued to chat over a breakfast of leftover pizza gleaned from the community fridge - mine pepperoni, her family ate strictly cheese, because, you know, pork. 

One of the first questions you ask when getting to know someone at RMH Houston is, why are you here?  Sometimes the answer is heartrendingly obvious.  Little bald heads perched above spindly limbs and you know that cancer is the family's waking nightmare.  The blossoming mothers of warriors yet to born spend months receiving life saving treatments in utero.  Some of these ladies will have "twice born" children.  They celebrate their Butt Day as the day they were pulled out derriere first, the opening in their spine closed and then put back into the womb to await their Birth Day.  Elsabeth always garners a lot of interest because she is so young yet in apparently good health.  It can be a challenge to explain her rare condition and treatments, especially if there is already a language barrier.

"She was born with a brain aneurysm.  It is kind of like a water balloon, filled up with blood that swishes and swirls around.  She had her first surgery when she was three months old, the week after Thanksgiving.  Dr. Chen ran a catheter through the carotid artery in the groin up into the brain. He placed two coils in the smaller aneurysm and feeding artery.  This reduced the blood flow to the giant aneurysm by half.  He had to be really careful to not overdo it.  It is absolutely critical that a clot form in a very controlled manner.  If the clot propagates throughout the arteries, it would be fatal.  That's why we had to stay in the Pediatric Intensive Care for several days.  They had to keep a close eye on her.  She has been on aspirin therapy ever since.  

"She handled the first surgery really well.  I wasn't sure what to expect at first.  When the doctor came in to see her the morning afterwards, he waved his hand in front of her eyes and exclaimed, "Good, she can see!"  That startled me!  I knew the surgery was risky, but his declaration brought a whole new level of reality to the situation.  We were thankful she was doing so well, but she wasn't out of the woods yet.  Her aspirin regimen would be absolutely critical.  So was staying hydrated.  I must check her range of vision every day as well as monitor her head size.  If she was unable to raise her eyes, it could mean her brain stem was compressed.  A dramatic change in the size or shape of her head would signal the onset of hydrocephalus, water on the brain.  A detailed MRI would be necessary before the end of the year.  The next surgery would be right after New Year's.  It would be much more dangerous.  We should expect a PICU stay of at least five days. 

"So, we came home, celebrated Christmas and tried our best to get the MRI accomplished before it was time to head back south.  God moved heaven and earth to clear the way to get the test done in Tulsa on the last weekday of the year.  But the little booger wouldn't hold still!  They couldn't get the images the doctor needed.  We had to come back to Houston early to get the MRI done here.  I'm still puzzled as to why God made a miraculous opening for us at the local radiology department, but did not allow the actual test to take place.  Truth be told, I was kind of mad about it.  We were hoping that maybe the aneurysm had sealed itself off and surgery wouldn't be necessary.  But that must not be God's will.  Her second surgery is set for the day after tomorrow.  I don't know how long we will be here.  I'm prepared for this to be a much more difficult stay."

My companion nodded sympathetically.  No one really knows how long the RMH Houston will be their home.  Some stay only a few weeks, many stay for months.  Most will return repeatedly.  She missed her home in New Mexico.  So much was riding on that doctor's appointment on Wednesday.

It was just at this point that Robert walked into the dining room, cellphone to his ear.  His eyes were wide as he caught my attention and silently mouthed, "D.R. C.H.E.N."

"That is absolutely incredible!  What good news!  Dr. Chen, do you believe in God?  Yes, we do.  There have been hundreds of people praying for her.  God is so good!  Here's Mary.  You can explain it to her."

He handed me the phone.

"Yes, Mrs. Hudson.  I was looking at Elsabeth's MRI results from Friday.  The giant aneurysm is gone.  I can not see it at all.  There is no more compression in the brain.  As far as I can tell with the distortion from the coils, there is no blood flow either.  The only way to be sure is to do an angiogram like we had scheduled for this Wednesday.  But that has its' risks.  It is very reasonable to wait several years before doing another angiogram.  We can do another MRI in April to compare with this one.  I don't think she is going to need another surgery."

I handed the phone back to Robert stunned.

God had just handed us a miracle.

I met the eyes of my new friend from across the table.  I couldn't help but feel a sharp stab of guilt.  In a matter of moments I went from describing the difficult situation to being delivered, right in front of her eyes.  She still had several days of anxiety ahead of her.  Her adorable little girl was heavy on my heart.

I spent the rest of the day in a daze.  We were free to leave, but elected to wait until the next morning so Robert could finish working remotely.  I kept replaying the events of the last few months in my head:

 Beth's birth, so perfect yet fraught with anxious watching.

The sweet spirit of serenity that surrounded her.

The hasty exodus from Houston, just hours ahead of historic Hurricane Harvey.

The frantic trips to the Emergency Room as RSV overtook her airways. 

The respite of four days in the hospital as she recovered. 

As the season progressed, so did her reflux.  The day before her surgery she soaked through several blankets as she spit up much of what I had fed her.  I feared there was increasing compression of her brain.
Then there was the recovery from the surgery.  The reflux disappeared.  Dr. Chen pronounced it a result of the changing pressure in her brain.  The aneurysm was much larger than I had realized.  It hit me once again how very serious her condition was.

Then came the inconsolable crying.  This was not like my calm angel baby.  Something was wrong.  I sent a text to Dr Chen's protege, Dr Jones.  He asked us to come in to the ER immediately.  A second brain scan, overnight stay.

 The relief that all was well.


The tears continued. 

My baby was in pain.

 For two weeks I could do little but hold her.

 And then, like a rainbow after the storm, she smiled!

Now came the holidays, breathless and relentless.  My heart was divided between celebration and preparation.  We were leaving just days into the new year, not knowing for how long or what would be the result.  What would this year bring?

And now . . .
Today . . .

What a strange sensation.

Yes, God answers prayers.

I believe in miraculous healing.

Or I thought I did.  But when it happens to you, sometimes it's too much.  You need time to let it soak in.  You have to marinate in it a bit before you can begin to taste it.

"O taste and see that the LORD is good: blessed is the man that trusteth in him. 

 O fear the LORD, ye his saints: for there is no want to them that fear him." 
Psalm 34:8-9

We were prepared for the Lord to say no.  After all, He had not allowed us to get the MRI in Tulsa which would have spared us the trip to Houston.  So He must want the surgery to take place.  Whatever He does is good and right.  So we will trust Him.  

But can I believe Him when He says yes?

Lord, I believe!  Help my unbelief . . .

Supper that evening was a jubilant affair.  Dinner was catered, which is always cause for celebration.  Since the ability to store and cook your own food had just been walled off that morning, everyone was keenly aware of the blessings of a hot meal.  The volunteers led a game with special prizes calculated to bring a smile to weary families. 

 Robert and I visit with our friends one last time.  Tito, from Nigeria.  Her smile lights up the room.  Her two year old has never met her father or known a home other than the hospitality houses that they move in and out of, month after weary month.  Immigration laws and medical necessity have converged to keep this family apart and in constant limbo.  It breaks my heart.  Sergei from Russia.  His son is so weak from the chemo, he rarely makes an appearance in the dining room.  Robert and Sergei chat for hours about the New Birth.  Andrea, a warrior mother, awaiting the arrival of her twice born baby.  She is inspired to tell others her story of God's grace in her life.  We give her the name of a local church that has been a blessing to us.  She promises to look it up.

At last, the morning of our departure.  I go down to the dining room to see if there are any cold leftovers I can commandeer for breakfast.  There's pizza again.  I'll take it!  And there is my new friend in the sweeping green dress, covered from head to wrists to ankles.  I tell her how pretty it is.  She looks very dignified.  Again, I eat the pepperoni, her children grab the cheese.  I silently pray over my meal.  She wishes us a happy journey.  My heart catches.  I know what I need to do.  But do I dare?  Will her husband allow it?  I can only ask and leave it in God's hands.

"Before I leave, may I pray with your daughter, Ella?  Do you mind if I pray for God to heal her?"

She smiles at me and nods her head.

I place my hands on 8 year old Ella's shoulders.  She looks up at me with wide, shining eyes.  Maybe she doesn't understand, but I am certain she senses that this is an occasion.  Her father looks up, startled from his breakfast.  Her mother speaks to him rapidly, and reassuringly in their own language. 

"Lord Jesus, thank you for your love.  I pray for this sweet girl and her family.  I pray that you place your hands on her heart and heal her.  May they receive good news at the doctor tomorrow.  And may they know that You are the one who did this.  In JESUS name, Amen!"

Her parents both smile and I exchange hugs with Ella and her mother.  It is likely I will never see them again.  I will probably never know the outcome of that doctor's appointment or her life.  But God knows her.  I pray that He will place other people in her path to water the seed.  

So, if you see a young Muslim family, pray for them. 

 Smile at them. 

 Maybe it's Ella.  Maybe you are the second answer to my prayer.

Maybe that is why God sent us to Houston.

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.