Cleaning My Way Calm

When I was younger, I had a very messy room.  If I was forced to clean it, things got shoved under the bed, or into the closet, or into drawers.  I know it drove my mother crazy.  As I got older, I began to keep a tidier room--much easier to find things that way.  Still, I was not the most organized person.  Somehow, as I grew older, my need for order increased, and I began to do crazy things like organize books, tapes, CDs, and videos, alphabetically within specific categories.  I became something of a neat freak, but only in certain areas.  Clothes could still pile up, and mail might make a big pile on my desk before I got around to looking at it.

When Phil and I were dating, it became clear that he didn't care much for organization.  His apartment and office at work looked pretty cluttered.  I figured I could live with it, and we figured out how to share space fairly well over the last 15 years.  Initially, we managed it by having separate offices and making his side of the bedroom the one away from the door.  As children arrived in our lives, I spent the first year of Lil' Bit's life trying to maintain order.  It was very hard not to undo all of her "work," which just looked like destruction and disorder to me.  Still, I read that kids get frustrated and stop trying when you keep cleaning stuff up, so I curbed my tendencies.  And, honestly, the addition of a second high-needs child has really allowed my cleaning and organization to slide immensely.  

Over time, I have gotten more accostomed to the clutter.  Still, there always comes a time, sometimes sooner, sometimes later, when I *must* clean.  I've never really understood the trigger for when it must occur--until today.  As Lil' Bit was bouncing on the exercise ball and Jellybean was screaming through another tube feed, I had suddenly had enough and began tidying the room a little.  Lil' Bit asked what I was doing and, in a frustrated voice (although I managed not to yell), I said "Cleaning up because I can't take it any more."  In true three-year-old manner, she asked, "Why?"  I took a deep breath and tried to think of something to say.  Phil managed to fill in, "Because we can only take so much chaos."

And there it was.  The answer to when I can't take it anymore.  If I am calm and having a reasonably easy time, I can handle more clutter.  Once I get stressed, I *must* have order and the only thing I can control and bring out of chaos (at least to some degree) is my house.  And, once things are cleaner, I feel calmer.  You should have seen how zen I was--for weeks--after my kitchen and refrigerator got cleaned.  I don't know if my mom feels this kind of zen when her house is clean, but, if so, I totally get why she was always doing it.  I knew my organization was tied to my need for control, but I never thought my cleaning was.  But, it is.  Cleaning is my way to stave off some of the chaos in my life and bring some needed order in to usher in some calm.  Now that I know that, I think I will try and find more time to keep the house clean.  It's hard to find the time, but given how much better I feel after it's done, it's probably one of the better uses of my time I can invest in.

Now I just have to work on not losing the zen when Lil' Bit wants to "help." :)

A Letter of Complaint

Dear Mr. Snow Miser,

I have never made any secret of my disdain for your specialties--snow, cold, ice, etc.  The only ice and cold I like are contained in beverages during summer.  Neverthelss, I am aware that I moved squarely into your territory a decade ago and, therefore, have been (not so quietly) tolerating your antics lo these many years.  However, this year is really testing my patience.  Whatever fight you and your brother, Mr. Heat Miser, have going on, it needs to stop.  It's not just the huge amont of snow, ice storms, and bitter cold that have me irritated (although, they are certainly high on my list of things I could do without).  Rather, it's these hugely radical shifts in temperature.  You two need to come to some kind of understanding.  I would put you on notice, but the truth is you would call my bluff.  I love my job, Phil loves his job, we love our community, and we have amazing care providers for two small children with unique medical issues.  Thus, the chances of us leaving, even if you don't stop, are minute.  Even so, I wish to register my complaint.  After all, if enough of us get upset, we might just get Santa to call your mother again!  Please, enough is enough.

Sincerely,

-One tired midwesterner

A Little Levity

When life gets heavy, it is important to find time and ways to laugh.  In our house, we tend to make up songs.  I present to you our latest composition:  

The Feeding Dance (sung to the tune of The Hokey Pokey)

We put the tube in.

He pulls the tube out.

We put the tube in.

And it makes him scream and shout.

We put gloves on his hands and pray he doesn't pull it out.

That's what it's all about.

We put the bottle in.

He spits the bottle out.

We put the bottle in.

And it makes him scream and shout.

If only he would drink some more we could take the tube out.

That's what it's all about.

Running on Empty

When last we left our intrepid protagonists, they were struggling with a series of high-stress events and hoping for calmer times.  Alas, it was not to be...

We were fooled into thinking life was improving when Jellybean was released from the hospital the day before Thanksgiving.  We even managed to have a lovely Thanksgiving meal with both families here at the house.  Unfortunately, the universe went right back to piling on the stress.

Episode 9:  The NG Tube
Jellybean was released from the hospital with an NG tube and a feeding pump, with instructions that he be fed precise amounts of milk fortified with precise amounts of formula every three hours, like clockwork.  So, no sleep for us.  Trying to coordinate these 8 feedings (two of which include giving medications), with pumping, sleeping, and taking care of a toddler is not easy.  Between getting everything ready for the feeding (warming and fortifying the milk, priming the pump, getting flush syringes, preparing for a bottle-feeding with gavage of the remainder) and cleaning everything up after (rinsing the feed bag; washing bottles and syringes, etc), feed take 45 minutes to an hour.  By the time we're done, we're less than 2 hours away from doing it all over again.  Needless to say, getting anything done is hard.  Very, very hard.  In addition, we have to change the tube weekly at the latest--more frequently if there are issues or he pulls it out.  I hope you never have to experience shoving a tube through the nose and down into the stomach of your screaming 1-month old.  Just sayin'.

Episode 10:  Miss Kitty
In the midst of getting Jellybean home and trying to negotiate a new schedule while sleeping in tiny increments, my 16-year-old cat, who I got in college when she was 10 weeks old, died.  It was peaceful (thankfully), but traumatic and unexpected.

Episode 11:  The Toddler
One Sunday evening, after the local urgent care was closed, my three-year-old begins shrieking in pain every time she went to the bathroom.  Nothing for it but to head to the ER.  A relatively easy fix with a single prescription, but definitely an added stressor.

Episode 12:  The Car
Phil was off in Tennessee officiating his mentor's funeral while his car was stuck in the garage because the battery was dead.  A friend was kind enough to send her husband over to jump the car--problem solved.  Or not.  A mere two days later, the car was dead again.  So, after returning his rental car from the trip to Tennessee, we jumped the car again and took it to the dealer where we got to purchase a new battery because, you know, we needed more unexpected expenses on top of everything else.

Episode 13:  Advent
So, here we are in the bright, cheerful run-up to Christmas.  Not.  Honestly, the holidays can bite my bohiney.  This is one of the church's two busy seasons and Phil has to get back to work in earnest.  I have another month until I'm supposed to return to work (how, I haven't quite figured out yet--we haven't found someone to watch Jellybean and he can't go to daycare--maybe this should be it's own episode), but with Phil back at work, I'm going to spend my days taking care of Jellybean and not getting much else done.  What else needs to get done?  Fighting with the insurance companies and drug companies.

Episode 14:  Insurance
First, there was the long involved fight to get Jellybean added to my insurance.  I turned in the paperwork to the employee benefits department in plenty of time, but for some reason, the insurance company only added him to the vision plan and not the health insurance.  Once I discovered this, I called my HR person who confirmed with employee benefits that Jellybean was indeed on the insurance.  Insurance continued telling the providers he wasn't.  After more calls by me to both the insurance company and employee benefits, employee benefits finally called the insurance company and got things straightened out.  Now we just have to wait for all the claims to get reprocessed.  Then I get to do the regular monthly fight with the secondary insurer.  Good times.

Episode 15:  Specialty Meds
Lil' Bit is on two specialty medications.  Today in the mail, I received a notice that her doctor must call the mail-order pharmacy and explain why she needs the medications or they will no longer be covered as of the first of the year.  Nice of them to give me so much notice--with the holidays coming up and all.  Then, I got home from a doctor's appointment for Jellybean to a telephone message from said mail-order pharmacy that Lil' Bit's specialty medication delivery has been delayed (it was supposed to ARRIVE today). I called them back and they told me that the delivery had not yet been sent and would likely not go out until tomorrow for (they hope) delivery on Wednesday, but it could be next week.  Say what?!  I was told that I could call back anytime (going through their automated menu only to then wait for a person every time, of course) to see if there was an update in the system regarding when the meds might arrive.  I was also cheerfully informed that Lil' Bit's doctor had been notified that the meds would be late.  I wanted to ask the customer service person what good that was supposed to do, but decided not to yell at her seeing as how she was simply the bearer of the craptacular news.  *sigh*  This is the second time that we have had trouble getting these meds and I specifically started requesting that they get shipped a week earlier than usual so that we didn't run out like last time.  Alas, even scheduling them to be delivered early does not seem to get them here in time.

So, here's the thing.  I am tapped out.  I am sleep-deprived (although not as badly as I could be thanks to some very wonderful, helpful, generous people).  I am behind on getting *important things* taken care of--like getting Jellybean enrolled in a special children's healthcare program, doing the monthly dance with the secondary insurer, or, say, balancing my checkbook for the last two months.  I am running on empty.  I don't know how everything is going to get done.  I no longer feel like things are going to get better.  I want to crawl under the covers and sleep for two days, emerge and do two days of nothing but problem solving, and then sleep for another two days.  Then, maybe, I could face the world.  Sadly, that's not an option.  As my husband so eloquently said in his sermon last week:

Life does not line up neatly, events taking a number and waiting their turn, each crisis followed by enough recovery time. . . .  [E]ach one of us has had times when too many things come all together, out of order, with no thought to our state of mental health or our levels of doneness.  As if life had moments of trying to see just how much water our boats can take on before we founder or capsize.

I know I previously said that God may have given me more than I could handle, but not more than my community could handle.  Sadly, it feels as though God took that as a challenge rather than as a compliment to the wonderful community in which God placed me.  So far I have managed to tread water, getting by with a lot of help, but it feels like every day there are bigger waves and more sharks in the water and I am weaker and less capable than I was the day before.  I hate this feeling of powerlessness, of weakness.  I need some light.  Some good.  Some breathing space to give me hope.  Before my cup runneth out.

Enough

To say that the last two months have been rough is something of an understatement.  Every time I think I have reached my limit on the amount of stress I can handle, something else got dropped onto our plates, and we had to make room for more.  Fortunately, we have been well provided for, and each of these episodes* has been resolved positively.  Still, it would be nice if we didn't have to keep figuring out how to solve more problems.

*My brother and sister have decided that we are experiencing a saga.  As such, I have come to refer to the stressor events as episodes, a la Star Wars.

Episode 1:  The Grandmothers

On September 27, one of my grandmothers passed away on her 96th brthday.  Six days later, her funeral was held.  Because of my pregnancy, I could not attend.  That evening, we received word that my other grandmother, who was 97, had passed away.  Again, I could not make the funeral.  Everyone understood, but I was crushed not just by the double loss, but by my inability to join my family in mourning.

Episode 2:  The Bathroom

Our bathroom needed fixing for close to two years now, but it finally reached the point where it was unusuable, between the non-working tub drain and tiles falling off the shower wall.  So, we finaly made arrangments to get it redone.  The original plan was for it to be finished before Jellybean arrived.  However, the day after work started, we found out that the subcontractor who was scheduled to start the next day had just been rescued after a week lost in the wilderness and was in the hospital close to death.  This put things a week behind as we got a new subcontractor.  Several other hiccups came along, as they always do in remodel projects, and it finally got finished this week.  It looks amazing, and we are totally thrilled with it and the people who did it.  However, next time, I will not schedule remodel work for when I am 9 months pregnant or about to have a child undergo heart surgery.

Episode 3:  Jellybean

So, we knew Jellybean was going to have issues and expected the heart surgery, but just because we knew about it didn't make it any less stressful.  He did so well with his recovery the first few days after surgery that we got our hopes up that he was going to beat the curve.  However, progress slowed and then things went backwards for a time as he lost weight, got congested, and refused to be weaned off the oxygen.  Progress has started again, but it is slow-going and the waiting is sometimes tedious.  This is, by far, the biggest stressor, and the unknowns don't help.  Still, we know we're getting amazing care and we are in the very best place for him.  We just hope we get to bring Jellybean home soon.

Episode 4:  The Mentor

On November 11, we learned that Phil's mentor, Rev. Dr. C, was going into hospice.  Just as we were starting to process the news, we found out that he passed away.  This was a huge hit not just for Phil, but also his parents, who are busy watching Lil' Bit for us in absentia, because Rev. Dr. C was their pastor and friend for so many years.  Because, you know, what we really needed was more death and grief stress while our son is fighting for his life.

Episode 5:  The Emergency Appendectomy

Yesterday, we got a call that Phil's mother was in the hospital with what was ultimately determined to be appendecitis.  They called the surgical team in last night so that they could take care of it before it ruptured.  Still, we had to figure out arrangements for Lil' Bit for the afternoon and evening since Phil's folks were out of service.  Fortunately, her godparents stepped up and Lil' Bit got to spend her birthday with four of her favorite people.  Chuch members also stepped up and started planning meals to bring to the house.  So, everything turned out well, but again, lots of extra stress.

Episode 6:  The Furnace

While my mother-in-law was convelescing in the hospital overnight, our furnace quit working and my father-in-law woke up to a cold house.  Phil headed home to oversee repair stuff and also to visit his mom and see Lil' Bit, while I held down the fort at the hospital.  Fortunately, the furnace problem was just a pilot light issue, so it was an easy and relatively cheap fix.  Even so, it was one more d*** thing.

So, here's the deal.  I am done.  I have had enough.  I know better than to ask if anything else could go wrong; there's always something more that could happen.  So, instead, I would like to kindly request the universe to give us a break.  Let us get through the rest of Jellybean's hospitalization without additional episodes.  I'm glad we've been amazing and handled all kinds of stuff so well (so far), but I am tired of having to be amazing.  I'd like a little quiet, please.  But, if that's not in the cards, then I'll just ask that we continue to find positive resolutions for whatever comes; that we have enough emotional and physical energy left to do whatever needs to be done; that we have enough love, prayers, and support to see us through.  My simple prayer is for "enough."

One of a Kind

Jellybean arrived on October 29 around 11:00 p.m.  He was 8 lbs even and 21 inches.  He had a few issues and was transferred to Children's Hospital that night.  After performing a four-hour echo on him and all of the cardiologists conferring with each other, they found that they were still confused by what they saw.  They sent him for a cardiac catheterization, which provided a few more answers, but they still needed more information.  After a cardiac MRI, they had exhausted all methods of looking at his heart structure and finally had enough to make a diagnosis and surgical plan.

What follows is going to be fairly technical and my best description/regurgitation of what we have been told.  The short version boils down to this:  Jellybean's heart structure is one of a kind.  The reason the doctors had such a hard time coming up with a diagnosis--either from the fetal echo or the recent testing--is because he doesn't have just one issue.  Instead, he has roughly three separate issues, none of them standard, which then combined to create a very complex and problematic heart.  His surgery today is not a complete fix and, until medicine progresses to a point that stents can grow, he will need additional open-heart surgeries throughout his entire life.  This information has been overwhelming, to say the least.  What normal approximation of life we have created to cope with Lil' Bit's medical issues will likely disappear as we learn to adjust to Jellybean's uncertain future.  And yet, we feel blessed to have Jellybean, for however long we get to have him.  We will do our best to enjoy every minute we have with him.  Other than that, all we can do is make sure we get Jellybean the best care we can and the rest is out of our hands.  A very hard lesson for this control freak, to be sure, but I'm working on it.

Without further delay, here's as much technical information as we have:

After our last fetal echo, the diagnosis was likely hypoplastic left heart but possible truncus arteriosus.  The official diagnosis is:  truncus arteriosus with discontinuous pulmonary arteries and mild to moderate hypooplasia of the left ventricle.  In other words, some of both, plus more.

Truncus arteriosus occurs when the truncal vessel fails to split into both the aorta and pulmonary artery during fetal development.  Truncus always appears with a VSD which allows the blood to mix between the two ventricles.  As a result, there is a single great vessel and both the body and the lungs receive mixed (i.e. both oxygenated and unoxygenated) blood.  Because the vessel was supposed to become two separate structures, the valve is usually problematic being stiff (stenosis), leaky (insufficient), or both.  Jellybean's valve is somewhat leaky, but generally good.  It will likely be the least of his issues.

Usually, this condition is repaired by closing the VSD in such a way as to isolate the truncus into the left ventricle and a new pulmonary artery is created and attached to the right ventricle.  The first shunt usually lasts 1-3 years before it needs to be replaced because the body has outgrown it.  Shunts are then replaced through open-heart surgery roughly 3-5 years later, again 5-10 years after that, and by adulthood, roughly every 10-15 years when they wear out.  This is called a "complete" repair.  

This is not an option for Jellybean, however, because his left ventricle is clinically smaller.  Thus, although he does not have a classic hypoplastic left heart, there is some question whether it is capable of pumping sufficiently well to get the oxygenated blood out to the body.  Instead, they will do a partial repair, which involves placing a shunt (a 4mm diameter goretex tube) between the pulmonary arteries and the subclavian or carteroid artery.  By doing only a partial repair, we give Jellybean time to grow to see if the left ventricle continues to increase in size to the point where it looks capable of functioning in a 2-ventricle system.  If so, subsequent surgery would complete the truncus repair.  If not, subsequent surgery would convert his heart into a univentricular system the way they would with a classic hypoplastic left heart condition.

The final complicating factor is the discontinuous pulmonary arteries.  Usually, truncus presents in a variety of types which are classified by the placement of where the pulmonary arteries attach to the truncus vessel.  Jellybean's left pulmonary artery comes off the truncus on one side, but his right pulmonary artery is connected to a ductus arteriosus--a fetal structure that usually disappears after birth.  This type of truncus is incredibly rare and, except for a single case from the 1970s, generally involves the left pulmonary artery coming off a ductus, not the right.  

Jellybean has been on medication, called prostoglandins, to keep this fetal structue intact while they figure out how to fix things.  However, once surgery is over, the medication will stop and the ductus will disappear.  The surgeon will remove the left pulmonary artery from the truncus and then utilize a patch--made of either homograft or pericardial tissue--to connect it to the right pulmonary artery.  This process is called unifocalization.  Unfortunately, because the right pulmonary artery comes off the ductus that will disappear, the distance between the two is fairly significant.  The hope is that the patch will allow the pulmonary arteries to continue to grow and feed the lungs, but the patch, like the stent, will not grow.  So, Jellybean will have a lifetime of heart catheterizations to fix any narrowing of the patch and open-heart surgeries to replace the patch as he grows or it wears out.

Much of the surgeon's work will be done "on the fly" because he has to wait and see what everything looks like when he gets in there.  For eample, he doesn't know how much pulmonary tissue there is on the right side after the end of the ductus and he doesn't know how much pulmonary tissue there is from the left side and how far it will stretch toward the right side.

Recovery from surgery will be roughly 3 weeks on the good side.  Approximately 10 days to recover from surgery and 10 days to learn how to feed (he hasn't ever eaten because, the way his blood flow works, his lower body doesn't get enough blood and feeding him would tax the intestines and kidneys which may not be getting adequate blood supply, thereby causing lots of problems).  He will then be followed closely, likely with weekly doctor visits, to check the status of both the shunt and the patch.  He may need oxygen when he gets home, but we won't know until close to the end of his recovery.  At around 4-6 months, he'll need a heart cath to see how he's doing.  If his growth (weight), echos showing pulmonary development, and blood saturations (sats) are all good, they will likely put off his next surgery until he is closer to one year.  If any or all of them are less than they would like, the second surgery will be closer to six months.  And, as noted above, what that surgery will entail will depend entirely on how the left ventricle has been functioning and whether it is sufficient to pump blood to the body.

If it turns out that the left ventricle cannot function in that capacity, but pulmonary growth has not been sufficient, it is possible that Jellybean will need a heart & lung transplant.  His anatomy is such that you could not place a healthy heart into it and have the system function.  Thus, only a full transplant of both would work.  Although this is certainly on the continuum of things that could happen, at this point, the doctors are feeling good about the chance of fixing things.

Things in Jellybean's favor:  his size.  Although he's lost some weight (just under .5 lbs as of this morning), he's still much larger than most kids who undergo this type of surgery.  We grew him big and it is to his benefit.  He also doesn't have any other health issues other than the heart, so they are only dealing with the heart stuff.  This gives him an excellent prognosis.

As I write this, Jellybean is in surgery.  It's going to be a long day followed by a long recovery, but we are hopeful.  The surgeon gave us a roughly 10% mortality risk with the surgery, but admitted that it was really just a guess because there simply aren't any cases of this condition.  Jellybean is unique, his required repair is unique, and there simply is no case to which he can be compared to guess at survival rates.  All we can do is wait and see.

One final note.  Many people have asked whether Jellybean's condition is similar to what Lil' Bit has.  The answer is sort of.  Jellybean's right pulmonary artery being attached to a ductus arteriosus is likely the same things Lil' Bit had with her left pulmonary artery.  However, because we didn't know she had the condition, she didn't get prostoglandins, and the dutus disappeared and the left pulmonary artery shriveled and was gone.  The surgeon indicated that these similarities are not likely coincidental and, therefore, are likely genetic.  As such, we are certain that we are done having children.  We have our hands more than full with the two we have.

More Than I Can Handle

I am now three days away from my induction.  Assuming it’s true that second labors are faster than first ones, I am a mere four days away from meeting the little dude who has been camped out under my ribcage lo these many months.  But, as excited as I am to finally meet this little guy, I am also quite terrified.  There is no question that, no matter how uncomfortable I have been, Jellybean is much easier to take care of inside than he will be once he arrives.  I am terrified that I won’t get to hold my baby or have any pictures with him before he is whisked away to the NICU and attached to tubes and wires of various sorts.  Terrified that the official diagnosis after he’s born will be worse than we know.  Terrified of the upcoming surgeries and all that they will entail.  Terrified that he may not survive.  But I’m also terrified of leaving my daughter behind.  Terrified of how all of this will impact her.  Terrified that I am not up to the task of taking care of two special needs children.

 

And worse, there’s nothing I can do about any of this.  I have done my part.  I have read and prepared emotionally as much as I can for whatever is ahead.  Everything that’s left is all outside of my control, which only makes a control-freak like me even more terrified.  People have been telling me how well I am handling things, and maybe I am.  I don’t really know.  But I haven’t spoken much about the terror before now because it usually elicits a well-intentioned response to which I do not subscribe.  Namely, “God doesn’t give you more than you can handle.” 

In my experience, God often gives people more than they can handle.  There are children in protective services because their parents got more than they could handle.  Addicts get high because reality is too much for them to handle.  People maim and kill themselves in an effort to escape life because they feel unequipped to handle a situation or circumstance in which they find themselves.  As my sister recently wrote so eloquently on Facebook:

Whence this crazy belief that God doesn't give us more than we can handle?  Cain got more jealousy and anger than he could handle.  Noah got more stress than he (and his son) could handle without abusing alcohol.  Moses got more power than he could handle and for on the "ineligible" list for the promised land.  David got more temptation than he could handle.  Absalom got more power over his sister and more consequences from his father than he could handle.  St. Peter got more temptation to violence and denial than he could handle.  Judas got more temptation for betrayal than he could handle.  The list goes on... and on... and on...  Every last one of us is given more than we can handle.  If we're lucky, we have communities who extend the mercy, support, and love necessary to get us through, and we pay that favor forward by supporting rather than judging others when they fail to handle everything in their own lives.  If nobody got more than they could handle, there's be no need for grace.  Fortunately, in addition to too much of everything else, God gives more grace than any of us can possibly use up.

If my sister’s right, and I think she is, then grace and community are what will get me through.  And, lucky for me, I find myself in the midst of an amazing community made up of friends, family, congregants, neighbors, and even people I have never met.  We have been the beneficiaries of some amazingly generous and unexpected acts of kindness over the last few months.  We are being constantly prayed for, cared for, and provided for.  Thus, even though God has given me more than I can handle, He didn’t give me more than my community can handle.  But, when I’m in the middle of the fire, it’s easy to feel overwhelmed and alone.  So, my plan is to take some tangible reminders of the love and prayers of my community—a prayer shawl, pictures, notes, etc..  That way, when things get hard, I need only look at them to know that that I am not alone in this; that there are all kinds of people who have my back and will help make it possible for me to get through whatever is coming.  And when I remember that, I remember the truth—that even with all that is to come, I am so very blessed.  And for that, I am so very grateful.  

T-minus 3 days and counting...