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."

Got Stress?

One of the things a fertility clinic will tell you when you are trying to get (and stay) pregnant is to avoid stress.  This is certainly a lovely theory, but the whole infertility gig does not lend itself to being stress-free.  Add in a toddler having surgery, a non-private room at the hospital, dental issues, and dehydration-induced bleeding and--VOILA!--you have my ridiculously stressful life.

So, let's go back to Sunday.  I had taken Lil' Bit to church as usual.  Somehow, during coffee hour, I broke a crown.  I called my dentist at home (one of the benefits of small town living!), and got an appointment to see him the next day to put on a temporary one.  Once I got slightly calmed down from that snafu, we worked on getting our ducks in a row to head for Detroit to take Lil' Bit in for her surgery.  My zen had not even returned when I discovered I was bleeding again.  After getting Lil' Bit to bed, I drank lots of water and put my feet up.  My mantra was--I can't control this; there is a plan to which I am not privy; but if I get a say, please stick around.  And, by morning, things seemed a little better.  Still, I called the fertility center to seek reassurance.  They told me there was nothing that could be done at this point and that they weren't worried, but I could call if I needed further reassurance.  I did my best to feel reassured by this, pulled up my big-girl pants, and headed out to Detroit.

Surgery on Tuesday morning went well and everything was copacetic.  Then, we discovered there were no rooms available for Lil' Bit, so we waited in the recovery area for several hours for a room to come open.  We were relieved when we got word she had been assigned to one, but it was another hour or two before we were sent up because they had to clean it.  We discovered we were sharing the room with another two-year-old who had just had the same surgery.  What we soon discovered, however, was that this child could scream and did not want to see any nurse, doctor, or anything of the sort and mom had no intention of holding said child to provide comfort--she just kept talking on her phone.  I mean, I know screaming.  I was a willful child who would scream to the high-heavens, but I had nothing on this toddler.  In fact, the non-stop, high-pitched screams and other activities by the child were such that the nursing staff finally came and "helped" mom take the child to another location because Lil' Bit (and likely the whole freakin' floor) was clearly being affected.  The charge nurse actually came in and apologized and, when I said the standard, "It's okay," her response was, "No, it's not."

Things got marginally better upon the return, although we heard overheard conversations that would make Teen Mom plot lines seem like Leave It To Beaver episodes (Phil tells me that the conversations overnight were even more "entertaining").  Needless to say, I forgot to take care of myself as I was working hard to console my child and *bam* significant bleeding and cramping.  I was certain I was miscarrying, wigged out, and started crying, all of which freaked out Lil' Bit even more.  Seeing her response, I worked hard to push down all that anxiety and sadness and pull myself together and then worked to console her and get her calm.  We finally got me back to the hotel where I drank tons of water and laid down with my feet up.  Again, by morning, things seemed okay.

After a rough morning at the hospital, Lil' Bit finally got discharged.  On the drive home, my temporary crown popped off.  The only good thing about this was that I was scheduled to get my new permanent one the next day.  On the downside, we were back up to 14 meds per day with Lil' Bit, most of which could not be combined and seven of which were liquid doses (her least favorite).  Needless to say, every day involves tons of screaming as we try and "do what's best for her," while I watch her be a little more traumatized each time.  Her regular med-taking has suffered to the point that, even once she's better, we have a long haul to get her back to where we were before all this.

Thursday arrived and I got my new crown.  It was unpleasant, but at least I got a little time away from the house such as it was.  By last night, things seems to be on the upswing.  I was feeling pretty good about the rest of Lil' Bit's recovery.  Thinking the day might end on a good note, I was disheartened, but no longer surprised, to discover I was bleeding *again*.  Worse, Lil' Bit didn't want to sleep alone (who could blame her), so I spent the night on the floor of her room.  Although I didn't get much sleep, I did manage to drink more water and get my feet up and got things stopped again.

That brings us to this morning.  After an okay morning, things went downhill fast.  I swear, it was like she was worse than right after her surgery. Now, I remember with my recent surgical recovery feeling like I was backsliding.  I don't know why I assumed that wouldn't happen with her, but I did.  Seeing her misery today hit me really hard.  And, even though Phil and his parents have worked very hard to try and provide me some downtime, my little girl just wants her mommy and my heart just can't say no.  However, I have managed to not be too far from water and have stayed well-hydrated, thus preventing the now diagnosed dehydration-induced uterine contractions/bleeding.

I know my previous goal was just to make it to the ultrasound this Thursday, but now, I am living hour by hour, minute by minute, just trying to make Lil' Bit as comfortable as possible and to get through this emotionally and physically intact.  There is no freakin' way I can stay stress free through all this.  Life is what it is.  But, I just keep telling myself:  I can't control this; there is a plan to which I am not privy; but if I get a say, please stick around.  All I can do now is wait.  And drink lots of water.