Month and months and months...

Sarah is amazing.  In the day to day course of life a lot of amazing things slip by.  Every once and awhile it is nice to be astounded, not by the newness but by the surprising sameness.

Every morning and evening there is a light show.  Sometimes it is spectacular.  Sometimes it is soft and gentle.  It is never boring.  How often are we paying attention?  Every flower is intricately patterned.  Every child is extraordinary; a moment to moment series of incredible adventures.  Every relationship is unique.  We experience, but rarely dwell on, the fascinating reality of communication, not just with each other and our surroundings, but with our Creator, if we so choose.

I was watching my own little miracle today.  Sarah was babbling away to her sister.  "La-la-la-la-la-ya-ya-ya-ya"  (Lily!)  I was astounded.  How far she has come!  How well she is doing!  How cheerful she is, even though she is sick!

And yes.  She is sick.  Again.  It is cold season, and Sarah has a cold.  Nothing too awful, just the kind of nasty bug that makes you feel miserable and tired.  Coughing and not sleeping.

I should write more often.  As I am writing, my fears are losing their grip on my sanity.  Which is good, because I was beginning to lose my grip in the tug-of-war.

In the past few months, Sarah has been to the hospital a number of times for unplanned stays.  We took her to the the ER because she was having trouble breathing.  As when she was three months old, it went from bad cold to terrifying-middle-of-the-night-event altogether to quickly.  We were pretty sure it was RSV revisiting.  The ER staff remembered us.  Two familiar doctors, many familiar nurse and techs.  It is difficult to get an IV in, because her veins "roll."  Mine do too.  That is one gene I will try to keep to myself in the future.  In any event, they remembered the difficulty, and sent for the best guy they have to get the IV in.  We knew him too.  I have mixed feelings about familiarity in the ER.

She was diagnosed with pneumonia.  Right lower lung.  The doctor in charge compared the x-rays to the images from her last stay- some months earlier.  Pneumonia.  Right lower lung.  In fact, it looked just the same.

When pneumonia is diagnosed by x-ray, what they are looking at is shadows.  Lines are fuzzy where they ought to be clear.  If you get pneumonia more than once, the x-ray should look different.  It is a different infection.  So the doctor wants us to follow up with pulmonology to discover if indeed it is pneumonia, or if it is something else.  She suspects some chronic underlying issue.

We were educated about asthma.  It not a diagnosis they are giving yet, but one they think we should be prepared for.

We will follow up with pulmonology, but we have not yet.  Since that discovery, we have been back to ER with breathing issues.  It was right before Sandy hit.  She had a bad cold getting worse, and I was worried that the power would go out and she would need a nebulizer treatment.  Her breathing was getting worse, the wind was picking up and I was nervous.  After two back to back neb treatments, I called her doctor expecting to be put back on oral steroids (she had not finished the course of antibiotics from her last pneumonia yet.)  The doctor told me in no uncertain terms to take her to the ER.  I was much more surprised than I should have been, given everything.  We got a pneumonia diagnosis and different antibiotics. We were only in the ER for a few hours, but the trip was not useless since I came home with an adapted inhaler, in case the power went out and she needed her breathing treatment.

This is a longish history to arrive at today.

Sarah was scheduled to get a surgery on December third.  It is a surgery we have scheduled and rescheduled.  First it was delayed because she needed a shunt in the late summer, then it was cancelled because she was sick in October. It is actually three surgeries rolled into one, so it is hard to schedule since we need three surgeons.  It is a developmentally important surgery which was supposed to happen before she turned one- in September.  She will have the first of three hand surgeries to give separate her fingers- this one would give her a thumb and pinky!  She will have tubes placed in her ears to drain some fluid which is causing some hearing loss.  She will have her cleft palate repaired.  This is such a big deal developmentally!  Hands!  Hearing!  Speech!  Eating!

Sarah is sick.  The surgery was cancelled today.  Is it OK to admit I am discouraged?  I am discouraged.

"May the God of hope fill you with all joy and peace in believing, so that you may abound in hope by the power of the holy Spirit."  Romans 15:13

Sarah is sick.  But she is cheerful during the day.  She is chatty, playful and a pleasure to watch.  This morning I woke late to find Sarah (brought into my bed in the early morning) snuggling with her older sister who sneaked in quietly.  Lily had brought in a pile of baby books, and she was reading them to Sarah.  These are my amazing, brave little girls.

Advent begins on Sunday.  Advent is the time of preparation for Christmas.  It is a time to contemplate the coming of our Lord, and to prepare for his second coming.  Waiting and preparing.  It is also the beginning of the new liturgical year.  It is a great time to renew.  How better to prepare for our Lord than to newly commit to Him.

Come, long-expected Jesus. Excite in me the joy and love and peace it is right to bring to the manger of my Lord. Raise in me, too, sober reverence for the God who acted there, hearty gratitude for the life begun there, and spirited resolution to serve the Father and Son.

I would love to pretend that I have been so busy that I have not had time to write.  It is not true.  It has been a delightful summer thus far.

We did take that vacation that I was concerned we would have to cancel.  It was shortened, but only by a few days.  We spent a few wonderful days in the mountains in New Hampshire and a few wonderful days on Cape Cod.  Sarah loved the damp, cool, mountain air.  Lily loved "Aunt Louise's beach" because "it has better water than the other beach."  Lily does not like big waves.  We caught newts, splashed in a spring, picked flowers, read books, rode on a ferry, hunted for beautiful seashells, went to an aquarium, rode on a carousel, ate well and slept in almost every day.  I should figure out how to add pictures.

And at home we have survived DC heat as well as anyone else.  Our air conditioner works well and we have access to a pool.  We cannot complain.  Sarah does not like the heat.  Lily does not like to be cooped up inside.  Sympathetic plights both.  I do the best I can to accommodate them.

Lily turned four.  (!!)  She is such a cool kid.  In honor of her birthday, which I missed in blog, a few Lilyism:

Stopping at a red light
Lily: Why did you stop?
Mom: There is a red light.
Lily: No it isn't.  I can't see it.
Mom: Just because you cannot see something does not mean it isn't there.
Lily: Yes it does.  Of it does.
Mom:  Are you a philosopher?
Lily: No.  You are.
Mom: Are you a sophist?
Lily: No.  You are.
Mom: I cannot be both!
Lily: You are.  And a Kangaroo like me.

Driving on the toll road, under large platforms suspended from long poles.  (Scanners, I think, looking for your EZ Pass.)  "Mom, where are the giants who play on those big swings?"

On late night cookies:
Lily: Can I have some cookies?
Mom:  No, it is past bedtime.
Lily: Argh, Matey! But I am a pirate!  And pirates have cookies past bedtime!  Argh!

I walked into the living room to discover my daughter staring in apparent wonder out the window.
Mom:  What are you looking at?
Lily:  I am just looking at the world.
A beautiful quiet moment passes.  Then,
Lily: I wonder what is going on out there.  Can you turn on the news so we can find out?
Obedience and curiosity.  A brief moment of news-watching, then,
Lily: Oh.  Well now I know.  Can you switch it to Dora?
I was played!

Amusing child.  I do not lose all the arguments.  Honest.

Forgive me reader, for I have sinned.  It has been many weeks since my last posting.  Since then I have done many things worth exploring.

Writing does kind of feel like confession.  I love writing, but in the moments or hours leading up to it there is an inexplicably debilitating terror which dissipates rapidly as I get into it.  I generally learn something about myself and I feel better when I am through.  I think of it as an obligation, but really it is for me.

With that thought in mind, I read through a bit of my blog.  I should probably do that more often.

I do not spend most days dodging chaotic uproar or facing painful or difficult decisions, as the blog seems to suggest.  I am not heroically happy, as was once suggested to me.  I am completely un-heroic, and not always happy.

The deception is accidental.  I use my writing to work through difficulties.  I use it to find hope and joy and courage when I need it.  I use it to beg for prayer.  It does not occur to me to write when life is predictable, or even when it is unpredictably awesome.  I do not think to use it to count my blessings.  I do not often think to count blessings.

Tonight I will.  Tonight, a deliciously, delightfully mundane list:
 
1.  My girls are happy, healthy and asleep.
2.  The air conditioner works.
3.  That quinnoa recipe was amazing.
4.  The lawn is mowed.
5.  We have more tomatoes than we can eat.
6.  Beer.
7.  Enough milk stored for Sarah that I do not feel guilty consuming grown up beverages.

I could go on, but one of tonight's blessings is that I have no further obligations tonight.  Seize the hour!  I am going to bed.

Sarah is scheduled to get a helmet on Thursday.  After a few weeks of complicated logistics, we were very excited to finally get that date nailed down.  The sooner it is done, the more good it can do.


Last week some of the hardware from Sarah's most recent surgery had come loose.  We saw a few little pointy bits poking out from her head.  So, we called her plastic surgeon and her neurosurgeon.  


On Friday she saw her plastic surgeon.  From his perspective, she is good to go.  


The neurosurgeon was concerned about pressure.  The neurosurgeon has always been concerned about pressure.  Between her larger than average brain and extra fluid, there has always been a question of how much pressure there is, and how much is too much.  He ordered regular CT scans to monitor changes, but especially pressure.  Today we heard what we have been hoping for months not to hear: Sarah needs a shunt.  


It is not the end of the world.  It is just another thing with another set of complications and issues.  


A shunt is a tube that drains excess fluid.  It drains out of her head and into somewhere else in the body.  The internal design protects Sarah from infection.  It is relatively simple.  There are complications. They fail pretty often.  I forget the exact numbers, but something like a quarter of them fail in the first year, and a quarter of the remaining fail in the second year.  A new set of complications and issues.  


This also means that the helmet is off the table, at least for now.  I do not know whether we will revisit the idea later.  The older she gets, the less good a helmet can do.  I am very disappointed.  Obviously, protecting her brain trumps other concerns, even when the other concerns are too many surgeries.  It is hard to argue.

I was at a family party over the weekend and granddad looked at Sarah and asked if her forehead was tighter.  I did not even hesitate before saying no.  As it turns out, he was right.  Her head circumference has grown between three and four centimeters in the past three weeks.  That is pretty dramatic.  Not dramatic enough for someone who looks at her every day, apparently.

The screws could also be a clue that there is too much pressure.  It is possible that they were displaced by the internal pressure.  One of the plates is pushing out as well.   (Doctor said he had never seen that before.  Do you want to talk about things a Momma can tire of hearing?)

The CT showed less room and thinner bone.  Both red flags.

He said that a few months ago her had two or three reasons to get a shunt, and seven or eight reasons not to,  and the opposite is true now.

Instead of a helmet, this Thursday Sarah will get a shunt.

For months and months, Josh and I have been afraid to schedule anything in the future more distant than a week.  The summer looked wide open though.  Sarah was not supposed to have another surgery until the fall.  So, we went ahead and scheduled a trip.  It had been confirmed about forty-eight hours before we got the news that Sarah needs a shunt and she needs it now.  We are optimistically refusing to cancel, even though it was supposed to start this Saturday.

Things like this are discouraging.  We were discouraged.

Last night we lay in bed chatting with little Sarah.  Her huge eyes looking brightly up at us.  She was not tired, though it was very, very late.  She is a pretty quiet baby and she was quietly listening to us worry and try to sort out practical details.  (Where do we take Lily?  Should Josh take off work?  What about the vacation days?  Who should stay with Sarah in the hospital?)  Sarah listened.  Then she spoke.

"Da da."

We cheered and smiled and laughed and wondered if it was a fluke baby babble.  Sarah put her hand on her forehead and signed, as she spoke again.

"Hi Da da."

She closed her mouth, and looked at me.  "Mom" did not come out, but she formed her mouth correctly and tried, as she tapped her hand on her chin to sign Mom.  Then she looked at the empty doorway and tapped the tip of her tongue at the front of the roof of her mouth twice.  Lily.  She was looking for Lily.

Amazing little wonder.  To chase away any remaining doubt, when she saw Dad this morning, she looked right at him and asked, "Da da?"

We still have some practical considerations to work out, but we are far to delighted to be discouraged.  Alleluia!  God is good.

What is going on in the wonderful world of Sarah?

Sarah's surgery in early May went well, and has mostly healed.  She had follow-up visits with both surgeons involved in the surgery. 

The bone that they had to work with was "paper thin."  That made the reconstruction work difficult.  It is thin because it the bone has been pressed from the inside.  I discussed it a bit when she had her first surgery in September.  Normally the plates in your skull are free floating at first.  The brain grows, the plates come apart, the bone grows and around again until you are done growing.  If the plates fuse to early, the brain still grows, and it grows where it can.  The growth can cause dangerous pressure concerns.  The pressure pushes the bone which sort of molds around the brain.  The bones can be thinner than normal and not as smooth. 

So, that is what the surgeons are up against.  They have to make sure that Sarah's brain is out of danger.  They want to minimize surgeries.  They want growth to be as normal as possible, both cosmetically and developmentally. 

This surgery was a big one.  And it seems to have gone very well.  About a week after the surgery we noticed something pointy pressing from underneath the skin on the top of her head.  We had already scheduled our follow up visits, and we were glad.  We showed both surgeons and neither seemed particularly worried that one (or a few) of the screws would have come loose. 

Side note: Before I was a mom I was a preschool teacher.  Once, a four year old boy climbed into my lap with a tool box and a look of consternation.  He picked through his tools very carefully, and chose a bright orange screwdriver. 
"What's wrong?"
"You have a few loose screws," and he set to work fixing them, just above my temple.  Maybe loose screws are genetic. 

In any event, we were told to be sure to call if the screws actually poked through the skin, in which case it would be a simple matter to remove them.  Otherwise, we were not to worry. 

In the follow-up visits, we also discussed the next step for Sarah.  Both surgeons have worked on many children with Sarah's syndrome, and other craniofacial issues as well.  Sarah's case is, apparently, unique and difficult.  One suspects that all cases are unique and difficult. 

The next step for Sarah is not typical for children with Apert syndrome.  The next step is a helmet. 

The helmet is custom made.  You have seen the kind of helmet she will get.  When children sleep only on one side and they develop flat spots, this is the helmet that is used to help correct the problem.  The helmet does not push and shove the head into shape, as say braces on teeth work.  Instead, it is molded very precisely to the shape of the head.  It is form fitting, without pressure.  Then they carve out the interior of the helmet where they want the bones to grow.  The head grows into the helmet.  Then they carve out more.  The idea is to train the growth of the bone, not to remold what has already grown.  So it only works when the kids are babies, because that is when the most significant growth happens. 

For Sarah, there is hope that this helmet will help to reduce the necessity of future surgeries.  Also, if it works well, it will help her head to grow in a more normal, round shape.  So, win-win.  Cosmetically useful, medically a good choice. 

There is risk though.  And I think this is why it is not typical for kids with Apert syndrome.  These kids have larger than average brains and typically more fluid in the brain.  Pressure is already a concern.  Add a helmet, and you can add pressure.  That is obviously not insignificant.  Pressure can damage her brain, as it did before she was born. 

Furthermore, the actual molding is more art than science.  This might be true for most of Sarah's interventions. 

For the next few months, after she gets her helmet, we will follow-up once a month with the orthopedist who is making and reshaping the helmet.  We will follow-up once a month with the plastic surgeon, who wants to keep a very close eye on the work, because it is atypical, and typical is already not simple.  We will follow up once a month, with a CT and a visit with he neurosurgeon to make sure we are monitoring intracranial (in the head) pressure very closely.  We will watch closely at home for any neurological symptoms.   It is a little intimidating, the number of doctor visits that will be required over the next few months. 

We are excited, and confident that it is the right thing for Sarah. 

Why has it been so long since I posted?  Well, there are excuses.  Sarah got sick, then the surgery then home then sick again.  Three hospitalizations.  The Lily got sick, awfully sick, twice.  The second time she was sick with both a nasty virus and Lyme's disease.  Then Sarah got sick.  It has been a rough couple of months. 

But the truth is, there are wonderful excuses too.  We have been out sightseeing and picnicing.  We have been playing and cooking and gardening.  I should learn to add pictures, because there are some wonderful pictures. 

We are all well now. 

I have decided that rather than blogging when I get around to it, I'll write every day.  Unscheduled things never happen when even the scheduled things are falling aside.  So, I am going to keep two blogs.

Wonderfully made

I will never forget when I first met my first daughter.  For months I had been losing sleep, changing my diet, scheduling my life around this little person.  For months, I had thought of myself as a parent, and I had enjoyed being Mom.  But there was something unique and beautiful in that first moment when I saw her.  I think it was the first time I had any real sense of the word 'awe.'  (Awe, like awesome, not Aw, like awww... how cute.  Well, maybe both.)

My world simultaneously grew and shrank.  Nothing seemed to matter outside of the little hospital room, and yet somehow that was bigger than anything I had ever known.  She was just beautiful.  Perfect. 

So this, I thought, is what it feels like to think that your child is incomparable.  I swore I was not going to be that parent.  You know, the one who cannot see any fault with their child.  But there she was, and she was perfect. 

And then an awful thought crept quietly into my head.  Would I love her less if she was not classically beautiful?  Would I love her less if she was not so perfect?  I did not want to dwell on the thoughts.  I did not allow the thought to formulate in words; it felt like treacherous anxiety.

In the years since then, I never thought about it again. 

These thoughts have been mulling in my mind for a few months.  Can I be honest?  Should I be honest?  How can I tell people this?  I have settled on Chronology for the 'how', and I am still not sure about the other two. 

There is a lot of contradiction in parenting (life?).  For instance, we often regret how fast time flies.  We are told we must hang on to every moment because the time will go by so quickly and we will miss it.  The truth is, things happen fast because so many things are happening.  If you ever had time to ponder the reality of the challenges and scope of parenting, would you do it?  Carpe diem!  Are you kidding me?  From day one challenges confront your sleep-deprived self.  How can one tiny person who sleeps all day require so much of me? 

Every step of the way the masses remind you to treasure this time because what is coming is harder.  This starts during pregnancy, and from what I can tell, it never ends. "Just wait until she is born, you'll never sleep again."  "Just wait until she speaks, you'll miss the days when she couldn't."  Just wait until she's walking, screaming, tantruming, borrowing your car and stealing your clothes.  Just wait.  Also, Carpe diem, or you'll regret it. 

Still, the set up is generally pretty good.  By the time I get around to wondering if I can handle it, it is generally over.  Because I am not living in every moment.  Some moments, I just survive.  And those quiet or sunshiny moments?  I seize those.  Forget the rest.  I don't want to exhaust myself seizing. 

I spent as much time as any other parent, I suppose, beating myself up because I did not want to cling to every minute of every precious day. There were enough wonderful days and pieces of days to fill hundreds of memory books, which I will never get around to filling because that would not be appropriate time seizing.  There are joys enough in the day; there is no need to invent them.  It took a second child for me to allow myself to moderate that common bit of wisdom guilt-free. 

When Sarah was born, I did not have time to think about much at the beginning.  There were so many things that needed urgent attention.  This surgery or that?  Surgery at all?  What about her heart, her lungs, her kidneys, her fingernails?  Can I hold her?

The first time I held Sarah, my heart filled in a very familiar way.  The world grew and shrank, inexplicably.  In utter amazement I saw my daughter.  "My God!" I thought, "Have you ever seen anything so beautiful?  So perfect?" 

Sarah, my tiny love, lifted my heart.  Her tiny hands would need surgery.  Her face showed tightness from pressure inside.  She was lovely.  Amazing.  Beautiful.  Perfect.  It is another moment I will never forget. 

"You formed my inmost being;

you knit me in my mother’s womb.

I praise you, because I am wonderfully made;

wonderful are your works!

My very self you know.

My bones are not hidden from you,

When I was being made in secret,

fashioned in the depths of the earth.

Your eyes saw me unformed;

in your book all are written down;

my days were shaped, before one came to be. 

How precious to me are your designs, O God;

how vast the sum of them!"  Psalm 139: 13-17