Sunday, April 28, 2013

Friday is the big day!

This Friday we will finally meet the newest member of our family.  She has made her presence known more and more dramatically in recent weeks.  She seems determined that we not forget she is with us.  Whenever Lily or Sarah is in my lap, she kicks.  When Daddy comes home, she kicks.  When I am hungry, she kicks.  I am excited to meet this little one.

She is still breech.  Naughty child.  The plan is to flip her over and induce right away.  That way we hope to avoid a cesarean and the surgery recovery time.

Lily understands, but is understandably a little worried.

Sarah is doing well.  She is still pretty sure she is the new baby everyone talks about.  I do not know how much she understands.  We have been telling her that she is going to be a big sister.  She will get it when the baby comes.

Both girls are more clingy than they were prior to our most recent hospitalization.  The longer we are home, the better it gets.  I can walk out of the room with Sarah watching me now, as I could not before.  But if there is another adult in the room and I leave, she cries.  I guess she knows I won't leave her alone, which is good.  Lily does pretty well during the day most days, but she wants to sleep in our room.  She says she is scared in her room.  She complains about nightmares.

She asks amazingly difficult questions, especially at night.  Last night she wanted to know how if Jesus was God, God could die on the cross.  She was confused, "because He is in Heaven.  He is everywhere."  The night before she asked me how God could make people well and how come some people get sick.  Earlier today she was asking why God made bad guys.  So in the past two days, I have fielded questions on the nature of the Trinity, miracles and evil from my four year old.  It wouldn't be so bad if she would a accept a short answer, but she keeps asking questions.  I should probably record some of these conversations because her questions are fantastic but challenging.  My answers..?

Lily takes care of Sarah.  She gives her her medicine and drives her around in the kidkart.  She makes sure Sarah is at the dinner table at dinner time, and she makes sure I can see Sarah's pulse ox.  She makes sure Sarah has toys.  And of course, Sarah loves her big sister.  They both get upset with me when I will not let Lily do everything for Sarah.  Sarah has to learn to ask for things.  Sarah has to learn to reach and play.  Lily does not think that Sarah should want for anything, and Sarah agrees.

Sarah has an evaluation this Thursday with the Infants and Toddlers program- which is the county program currently providing therapy.  We are going to reassess her needs.  We are also going to talk about school!  Apparently, Sarah is eligible for school.  We have to learn a little more about the classroom before getting too excited.  I think it could be really good, or maybe really not, depending on everything from the teacher to how it is decided to group children.  I have questions- a lot of questions.  In the best possible scenario, though, Sarah would be in a social atmosphere getting much needed therapy for a few hours every day.  She could thrive.  She is very smart, and was making daily progress when she had daily therapy.  She loves being around people.  But, she is young.  She will only have just turned two when she begins, if we go that route.  The alternative is to keep her home for another year, and make the best use we can of the infants and toddlers program.

Questions of nursing coverage and insurance remain unsolved.

Saturday, April 27, 2013

Today a beautiful couple got married.  I recently realized that I have gotten really grumpy about weddings.  Well, not the weddings themselves, which I love, but the months, weeks, then finally days leading up to the weddings.  It drives me crazy.  I remember it- it was not that long ago when I married my beloved.  There is all this pressure on the bride to focus on herself and all this pressure on the groom to get out of the way.  The details easily overshadow marriage prep.  In fact, sometimes the marriage prep is one of the trivial details, just another thing to check off on the long list of chores.  Not even dear hubby ranks as more than a particularly important detail on My Day.

This couple, whatever else they did, seemed to stay focused on each other and on God.  It has been fun, in recent months, reading their updates on preparations and growing excitement.  They talked about their upcoming wedding  as "the best day yet."  I like that.  Though not an end itself, it was exciting and wonderful.  It was important and life changing.  It was a new beginning.   I am excited for them.  I wanted to celebrate this wedding with them.  

The Gospel reading today (Sunday's reading, we went to the vigil Mass) was one of the familiar scriptures that might easily slip through without impact.
"My children, I will be with you only a little while longer.
I give you a new commandment: love one another.
As I have loved you, so you also should love one another."
The command is to love.  

The priest told us we are not called to like each other.  That sort of struck me.  We have to love but we do not have to like.  When we are young, we get the idea that love and like are similar, maybe different only in degree.  (I like chocolate.  I love dark chocolate.)  He differentiated.  Like is not something you can control.  It is an emotion.  Love is a decision.  That is why Jesus can command it.  Love, at least the love that He commands is a decision; it is not an emotion.  

The priest went on, how are we to love?  In the way that our Lord loves us.  His love is sacrificial.  He gave Himself wholly to us.  He died for us.  That is how He loved us.  He did not tell us to face our sin and death.  He broke their power by offering Himself, the Lamb, as an innocent sacrifice.  When He tells us to love one another as He loved us, it is not a flaky, cuddly, sentimentalism.  He is telling us to offer ourselves fully.  Love sacrificially.  Offer a love that is completely entrenched in the good of the beloved.  

There is always some tension over the scriptural call that wives be subordinate.  It is tempting to ignore it as an anachronistic command rooted in a sexist society, which we have long since left behind.  Tempting, but that is an uncomfortable precedent for scripture interpretation.  Also, it glosses over the complementary nature of the command.  

"Be subordinate to one another out of reverence for Christ.
Wives should be subordinate to their husbands as to the Lord.
For the husband is head of his wife just as Christ is head of the church, he himself the savior of the body.
As the church is subordinate to Christ, so wives should be subordinate to their husbands in everything.
Husbands, love your wives, even as Christ loved the church and handed himself over for her."

In the objection, we forget what love is.  Love is not about self.  Love doesn't always feel good.  Love is not a comfortable captivation.  Love is a decision to put someone else above yourself.  It is a decision to sacrifice.  It is the opposite of the reinforced selfishness of our culture's wedding infatuation.  

When Josh and I were married, the priest startled our collected family and friends.  In the middle of his homily, he pointed to the crucifix and told us that that was the call.  That is what love looks like.  Christ crucified.  

I went to an Orthodox Church for their celebration of Easter one year.  It was stunning, both in familiarity and in difference.  They sang, again and again, "Christ is risen from the grave!  Trampling down death by death!  And upon those in the tomb, bestowing life!"  His death was our sacrifice, and our example of what it means to love.  It is not easy, but it is joyful!  It is beautiful!  It is powerful!  

Love is not always hard.  No doubt, Christ laughed and had wonderful times with his friends.  We know he celebrated with at least one couple at their wedding.  He provided the wine when there was not enough.  We should celebrate weddings!  It is a joyful beginning, a union formed in love.  And besides, celebrations are fun!

I was sorry to miss the wedding today.  

I hope that the joy they have exhibited in the preparatory months leading up translates into a deeper joy in marital love.  I pray that their faith grows.  I expect that their unique challenges will be met with both love and faith.  I hope this was their best day yet, and that their mutual love brings joyfully met better days and I pray that they meet their bad days with the same exuberant faith and love.  

Thursday, April 18, 2013

The good news is that after a few bumpy days, Sarah is doing very well.  She is settling into a routine.  Now, all I have to do is start adding things like daily therapy into that routine so we can continue to make progress with her development.  

The bad news is that there is a chance that there will be a gap in coverage between our primary and out secondary insurance.  That is frustrating, because I asked many times and was reassured many times.  It is also a little scary.  A gap in coverage does not mean that she cannot go to the hospital or the doctor or anything like that- primary insurance still covers all of that.  It means that we will lose our nursing coverage.  I have been telling myself for about a week that life gets easier on the sixth, when because we lose our primary nursing coverage, we get our secondary nursing coverage- and that means we go from eight hours to sixteen hours.  If the secondary insurance does not kick in, it means we simply lose nursing altogether.  

I learned more about medicine than I ever wanted to know in the first few weeks of Sarah's life.  Since then, we have become comfortable with all kinds of things.  The truth is, there is a good chance that Lily knows more about trachs than most grown-ups.  Until this point, the most difficult things have been medical.  We have not had to battle (much) with insurance.  The coverage we have, through Josh's job, has been excellent.  And actually, that is the problem now.  Apparently if they had just denied our claim for nursing, instead of covering a few weeks, we would not be having these problems.  It turns out, if you have good insurance and make a salary, it is very difficult to get help even if there is clear need.  We are now learning how to navigate a system which is very complicated by design.  

I am following up with half a dozen people about half a dozen programs and waivers.  I am talking to three case managers, none of which are technically the right person to ask my questions, but all of whom know the system reasonably well.  It is all very confusing, but I am learning.  I am pretty sure we have nailed down the right waiver to get the right coverage in the long term.  

One of the people I spoke with today told me to, "call her and sound really desperate."  I have heard people getting all kinds of crazy advice to get coverage they need.  "Get a divorce.  You will qualify as a single parent."  "Only report your income."  Lie.  Just lie.  At least they didn't tell me to lie.  In fact, I am going to be desperate if coverage does not come through.  

Sarah's has a trach and is on a vent at night.  She has a little machine, called a pulse oximeter (pulse ox) which monitors her pulse and her o2 level.  The vent itself has a number of alarms for various problems.  There are a lot of alarms to let us know when things are going wrong.  But, because of the type of trach she has, we are told that it is possible that the trach could come out and no alarms would go off at all.  That is not a huge deal during the day.  She is always close to someone.  But at night, we need to sleep.  Without a night nurse, how will we sleep?  

Focus on the good.  Face the trouble, but focus on the good.  God will work this out in His own time.  I trust that He knows what he is doing.  I have placed her in his hands before.  He loves her.  He is in charge.  

So... the good.  Lily is very excited about Kindergarten this fall!  She hopes the that her teacher will teach about volcanoes and wells and dinosaurs and the planets.  I hope that her teacher has a good sense of humor.  

Sarah did have some drama the day after we got home.  Her O2 saturation was low and she had a slight fever.  Her primary care doctor sent us to to the emergency room.  We are still not sure what happened, but it resulted in a full day in the ER waiting for various specialists to discuss with each other whether or not Sarah could go home again.  She did.  She has been fine ever since.  

At home, I am primarily responsible for her therapy.  I am again grateful that I can be a stay-at-home mom. The county program is a "teaching" program.  They will come out once a week to show me what I should be doing with her every day.  They will reevaluate soon.  In the meantime, I am doing the best I can.  We are signing with her, and she has picked up a few signs- though at the moment I cannot tell the difference between Sarah calling me and Sarah blowing kisses.  She does both.  Lily is in on the fun of signing, so long as the fun includes "Baby Signing Time" movies.  It does.  Josh is very pleased because Sarah signs " Hi Daddy" and smiles at him, all the time.  She is also pretty consistent signing "more" and "all done."    

The new baby is healthy.  She is currently breech, but measurements today show that she still has room to flip.  We are hoping!  It is fun to watch her move.  And yes, we can watch not just feel it when she is moving.  Blessedly, she usually lets me alone at night.  Lily refuses to call her "new baby" anymore.  She is calling her Rebecca Grace, and corrects me if I call her anything else. We are reasonably confident that we have the best OB in the world.  He and his nurse are awesome.  I have said it before: if you have to pick between a good doctor and a good person for medical care, you know what you will pick- but it sure is nice to not have to pick!  

Elizabeth Cecilia, Sarah Katherine and Rebecca Grace.  I reserve the right to change my mind right up until the day she is baptized.  Especially if when I meet her she looks like a Julia. 

The world is full of wonderful people who have been offering help of all kinds.  I am beginning to meet more and more people in the community, which has been a great pleasure.  We expect to bring the whole family to Church together, in our parish, for the first time since January this weekend! 

Sunday, April 14, 2013

An uncomfortable post

We are home!  Home is wonderful!  The girls are happy to be with each other and I hope I never again take for granted the pleasure of sleeping in the same house with my husband and children.

Home has its own new set of challenges.  We are beginning to work out both the ups and the downs of having nurses in our home.  An extra set of hands is absolutely necessary sometimes, but when I don't need help, they are still there.  Some are warm and friendly and lovely, and their presence is comforting even when not necessary.  Some are focused on the job.  That sounds good, and it probably is, but it means that when nothing is going on they are looking for problems.  That is a very stressful energy, even when they bite back their criticisms of my care.  Some are just there.  They will do exactly what I tell them, and nothing more or less.  I hope they warm up as time goes on.  One has simply not done the job and she is not welcome back.

Then there is coverage.  Apparently, if our insurance had simply denied us, we would have 24 hour nursing for a few weeks and then 16 hours.  As is, we had a complicated calendar.  First, 16 hours for three days, then 12 hours for three days, then eight hours for a a few weeks.  Then our primary insurance runs out and secondary insurance picks up- with sixteen hours.

So, on May sixth we might have a nursing schedule in place, but not before.  On May eighth, baby #3 is due.  Baby #3 might be named.  I am still teetering.

A few weeks ago, I saw a note in a prayer group.  A mother I did not know was having a very difficult time.  She was very ill and needed help doing daily chores and caring for her kids.  I was sympathetic, of course, hers was a very sympathetic story.  But there was another emotion, and when I identified it, I was startled.  I was jealous!  I was not jealous of her plight.  I am not quite that crazy.  I was jealous of her ability to identify her needs, figure out what she could do, and ask for help with the rest.  She asked for specific things.

People are always asking me what I need.  To be perfectly honest, that is a very stressful question for me.  I know I need help, but what do I ask for and who do I ask?  I have promised at least a dozen people that if I need help, I will ask.  So, I am going to ask.

The problem keeping me awake at night is what will happen when I go into labor.  Who will I call?  Will I have to bring my kids with me to the hospital because no one is comfortable with Sarah's needs?  What if I go into labor when I am alone?  Josh only works three days a week, but on those days, he is gone from 8 a.m. until 11 p.m..

My hope is that I can line up a few people that can come and be with my girls if I go into labor.  It would not be for hours and hours, it would be until my parents could get here.  The difficulty is that they would have to be comfortable with Sarah's needs.  I can train anyone who is willing to learn- it is not hard, but I understand that it is intimidating.  The idea is not that it will take a lot of people, but that most people are busy and so I want half a dozen people I can call, because at any given time almost everyone will be busy.

Otherwise, needs are clear.

I cannot go very far, which means Lily is cooped up in the house more than she should be on these beautiful days when Josh is working.  A few play dates or babysitting hours, even just an hour at the park, could make pretty dramatic progress toward sanity in this house.

I am in the process of re-organizing my whole house.  Fortunately, my Aunts and mother cleaned my house while I was in the hospital.  Unfortunately, living out of suitcases and bags in four different places for almost three months and then coming home with tons of new and big equipment means that the house feels turned upside-down.  Since the mess was brought into a clean house, I think I can get to the bottom of it.  But I could definitely use help, especially if you should happen to be one of those mysterious organizing types who would enjoy the task.  Organization matters for more than the sanity of the residents.  Since we have multiple nurses coming in and out, I have to make sure that everyone can find what they need.

And we are (or should be and will once we get the most immediate task of childcare under control) looking for a bigger car.  I am still not sure what to do about this.  If you or someone you know has a reliable vehicle that is biggish (thinking minivan size?) and are looking to sell, please get in touch.  Sarah has a lot of equipment, and we will have three car seats.

Food is currently under control, thanks to the blessing of a good Church community.  We moved to the area a few years ago, and were still new to the area when we found out that I was pregnant with Sarah.  It has been a whirlwind, and between getting to doctor's appointments and hospital stays and making sure Lily was in good and consistent hands, we simply have not been home very much.  We have spent more time in DC (hospital) and MD (parents) than at home in VA.  So, the truth is, we do not know our Church community at all.  Nonetheless, when they became aware of our need, they filled it.  I am not sure how to feel.  Grateful, of course.  These are near strangers filling a need, but I don't want them to be strangers.  Asked three months ago what our biggest  physical need was I would have answered without hesitation: a local faith community.  When things settle a little bit, we are looking forward to going to some of the social events hosted by the Church and getting involved in the various ministries.  In the meantime, we are encouraged and delighted to note that the community is here.  And we are eating well, which is I can absolutely say would not be happening without help.

A number of you have expressed regret that all you can offer is prayer.  Please, please do not apologize for the single most valuable gift we have received.  Wherever my faith does fall short, I do not have even a smidgen of doubt that God has sustained us through prayer.  God has protected Sarah and Lily.  God has shown Josh and me a path forward, even if it is only one day at a time.  God has given us inexplicable peace through objectively difficult times.  He is listening to your prayers.
"The fervent prayer of a righteous person is very powerful." James 5:16

Thursday, April 4, 2013

Do you accept Jesus as your Lord?

When I was in high school I was in an interdenominational Christian youth group.  I learned some, but mostly it was just a weekly reminder to keep praying.  It was lead by a great leader who was open, honest, and a great listener.  He was just what teens need in a youth minister.  He knew what he was talking about, he was aware and honest about imperfection, and he was on a journey of faith which was dynamic.  He made you want to get on the path, and made it seem doable.

One year they went on a retreat.  Honestly, I cannot remember a lot about the retreat except that toward the end of the weekend there was an altar call.  I am a Catholic.  It was not familiar.

"If you feel God calling you, if you truly believe that Jesus is your Lord and Savior, if you want to spend the rest of your life following Christ, come on up now.  Dedicate your life to Christ.  Accept Him who is calling you and be His.  Invite Him to save you."

So up I went.  There were a lot of people who came to the altar that night.  But honestly, I was surprised to see that not everyone went.

A few months later, I had a similar experience while visiting a church with a friend.  It was not until I was in conversation with one of the adult leaders that it began to dawn on me that I was doing something different.

"I remember when you were saved."

While I was trying to recall what she could be referring to, she went on about how special it was to her to have shared the experience.

I am not sure how many times I was "saved" before I figured it out.  I did not know that this was a unique experience.  It was life changing, but this sinner needs her life changed pretty often.  Invite Him in.  Accept Him.  Decide to follow.  I thought the altar call thing, was pretty cool.  A little slow on the uptake, I could not figure out why everyone did not go up every time.  Why are we gathered in church if not to accept Him and commit to change?

Pressed, I can usually find words to talk about my faith.  Not always, but often.  But am I living my faith or just talking about it?

We spent all of Lent, and a few extra weeks on either end for good measure, in the hospital.  Briefly, for those not following, we came in for three surgeries which we expected to take six to seven hours total, including sedation time.  We expected to stay in the hospital recuperating for about a week.  Our expectations were dashed when they were unable to pull Sarah's breathing tube after surgery.  A few stressful weeks followed, with two failed extubation attempts and a code event resulting in twelve minutes of CPR, but no lasting brain injury.  Sarah self-extubated successfully.  (Yes.  That means what you think it means.  Two days after the failed attempt that resulted in a code, Sarah pulled the tube out herself, and breathed.)  But we were unable to wean her oxygen support, then being alternately given through a nasal cannula and a mask.  Her lung collapsed.  So, we got her on the surgery schedule for a tracheostomy.  Post surgery, we (again) thought it would be a week or two of healing, then home.  After a couple weeks, we transferred to a sub-acute hospital to recover slowly in her own time.

Meanwhile, we are supposed to be getting ready for baby number three.  So far, we have not even picked out a name.  Well, maybe we have.  I am not committed to the name yet, but Josh and Lily agree.

I have been thinking about how often I fall off the path and how long it takes me to notice.  Then, having noticed, how long it takes me to recommit and to invite God to be in charge again.  There are always reasons.  There are always stumbling blocks.  There is always an excuse.  I was in an argument recently about the nature of culpability.  But right from the beginning, we have our example.  Is it so hard to put yourself in Eve's shoes?  Who wouldn't want to eat that apple?  There was the snake lying to her.  But she was certainly culpable.  She ignored God.  It was easy.  It was understandable.  It was wrong.

I need another altar call.  This time around it was harder for all kinds of reasons, but the biggest difference between this hospitalization and every other hospitalization was that this time around I was battling for control.  Not just over medical decisions, but over the whole situation.  I did not want to be here.  It was easy to focus on all the things going badly, and to complain.  It was easy to feel sorry for myself.  It was easy to lose perspective.  It was easy because bad habits always are easy.

The same story, told another way, could have gone like this:

We came to the hospital with a child who had had pneumonia at least once a month since the fall.  She never quite had time to recuperate before she got sick again and needed to go back to the hospital for a few days. We knew she needed to see a Pulmonologist, but we decided it could wait until after the surgery which had already been delayed three times due to illness.

The surgery was successful!  It went well, except that she had a pneumonia which declared itself when they tried to extubate.  She was going to need more support.  So, we spent a few weeks in the hospital, followed closely by plastics, ENT, pulmonology, and even neurosurgery checked in on her.  Plastics were able to see her every day until she was well healed from the surgery- and the casts came off a little early because of that.   They were seeing her every day, so healing was on her schedule.  ENT and Pulmonology were specialists we needed on board, but did not have yet.  With those relationships in place, we got a lot of imaging and a lot of new information about Sarah's anatomy and needs.

When it became clear that Sarah needed a trach, it was a matter of days to get her on the surgery schedule.  it could not have happened that fast outpatient, unless it was an emergency.  So that need was also met.

Ever since recovering from that surgery, Sarah has been a stronger, happier child.  My Aunt Lucy was holding Sarah a few months ago, and she said that Sarah struck her as a happy little girl dreaming about pink ribbons.  The biggest change since the surgery is that what Aunt Lucy felt is not a secret anymore.  She lights up and smiles and communicates and plays.  Apparently, not working hard to breathe leaves you with more energy to do the things you want to do.

Since she was on a vent with a new trach, we had to figure out what her "new normal" breathing would look like.  How much support does she need?  Getting that answer matters, and it takes time.  So, we left our dear friends in the PICU at Children's and went to a hospital that does long term care in a sub-acute facility.  The new hospital specialized in therapy!  So, although we were there for the vent, we were able to begin to meet Sarah's therapy needs.  She got speech, physical, recreational, and occupational therapy each three times a week.  She tried out all kinds of cool equipment.  Under the care of some fantastic therapists, she has blossomed.  She is making daily progress on all fronts.  It is very exciting!  And, though it will take quite awhile to get Sarah's own equipment, we are going to borrow theirs until hers comes in.  Inpatient care meant that we could try these things out over weeks, not hours, and get the right one for her.  Inpatient care meant that we would not have to wait for months to begin to fill her needs.  Inpatient care meant much more intensive therapy than we will be able to do at home.

It is not terribly hard to find the silver linings here.

Pessimism clings.

What does it mean to call Jesus Lord?  The word lord implies power and authority.  When I again claim Jesus as my Lord, I am giving him the authority which he already has.  I am submitting.

Father, I ask once again that you direct my heart.  Take control, and show me your way.  Help me to hear the whispers of truth, truth which will not abide with pessimism and doubt.  Let your Spirit be my guide and my strength.  Show me how to be the parent you have asked me to be.  Occupy the space in my heart prone to selfishness, so that I can be the mother my children need.  

Jesus, I am asking you to be my Lord and Savior.  Amen.