Normal?

As I’ve returned to life and my daily routine, I’ve retold your recovery story countless times.  And invariably, it always ends with something along the lines of “so, was this the last surgery?”  And I reply, depending on how much I want that individual to pity us, with an answer that ranges between, “until she is school aged” or with a long description of the potential surgeries you might have to undergo.  Regardless of whether we have that extra surgery when you are 3 or 4 to either extend your palate, should you have speech problems (happens about 20% of the time) or a revision to make your lip or nose look more “normal” before you start elementary school, we should be surgery free for at least 3 years.

What are we going to do with all of that time (besides follow up doctor’s appointments, physical therapy and speech therapy)?  Enjoy our family.  That’s what I want to do.

Our second year with you will be so entirely different than our first.  It’s astonishing some days to look back on it, to realize you were in the hospital over 25 nights, had 3 surgeries, and somehow life carried on.  Work continued – I just finished up an annual progress report, to prove that fact.  You and your brother grew – I’ve started working on your 1st year baby photo album, and as expected you have grown and look much older now, but your brother does too.  I’m looking forward to our experiences maturing and becoming a distant part of the past.

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From the brink of being overwhelmed

Well.  We made it.  Miss M’s palate surgery is over (17 days in the past at this point, to be precise).  Recovery was hard, oh so hard.  At some point, mid-recovery, I wrote this:

Miss M simply will not eat.  No syringe, nor cup, nor spoon, filled with juice, pedialyte, milk, melted ice cream, nor sugar water, darest pass her lips (or flailing arms and kicking feet, as the case may be).  No matter how many interfering relatives suggest we should try another cup, another liquid (we’ve tried them all, trust me).

And the hospital, omfg, the hospital.  Could those people care any less?  Could they manage to sanitize anything so our dear little Miss M won’t get sick, on top of her surgeries? Would it kill them to turn off an alarm or two overnight so Miss M (and parents) could get some much needed sleep? Who designed these hospitals anyway, why is the bed a 18″ wide gym mat, and why are there so many windows letting in the hallway light at night?

Miss M has been in the hospital three times, a total of 7 nights, since her palate repair. She came down with some sort of enterovirus which produced painful lesions in her mouth and a high fever.  Two days after her palate repair.  She’s 10 days out, and has yet to drink enough to stay hydrated on her own.  She was listless and in pain for 9 solid days.  We came home from the hospital, hopefully for the last time, late last night.  All she has done today is sleep.  She didn’t sleep more than 90 minutes in a stretch at the hospital, she slept 12 hours straight last night.  Still struggling to get her to eat.  We’re at 8 oz of pediasure for the daily total (it’s 4pm).

 

Luckily, we did stay out of the hospital that time.  It’s been a week since our last hospital stay.  She’s finally eating a normal amount, and has almost gained back the entire pound she had lost off her 18.5 lb petite little body.  She’s lost some spunk, though.  Still waiting for that to return in its entirety.

Rocky waters

We are a little over 24 hours away from your appointment in the OR, Miss M.  And, the family stress level went from “medium” to “out of control” this morning.  Your brother acts up, because of changes in the household – Nana flew in last night to stay for the next week and a half, and he probably senses that there is going to be a change in his routine. When your dad is stressed, his limited patience becomes even shorter.  Those two things feed off each other and your brother was in “time out” three times within an hour, the last time with a lot of yelling on your dad’s part.  Which makes me freak out.  I hate yelling, I think it has no role in discipline.  So then I argue with your dad about it in the car on our way to work.  Because he is making Nana, your brother, and my own stress even worse.  I’m sure I have some role in this whole dysfunctional mess as well, but I, of course, think I react appropriately and perfectly – no yelling, just calm criticism.  But your dad gets even angrier with the criticism, and gets even more resentful and angry at your brother and me.

I wish I could figure out how to stop this cycle.  I try so hard to do so.  But I can only change my own behavior, and I’m too close to the situation to figure out what I can possibly change about my own behavior to help the situation.  If I knew, I would do it.  I wish there was some magical thing I could do or say to make your brother stop whining and your dad stop yelling.

But maybe I just need to let it go.  Let it go, my guilt over Nana and Grandma having to deal with our family stress too, not just helping with your recovery and playing with your brother.  Let it go, that they see our family at our worst.  Let it go, that it shouldn’t be this way, that we should all support each other and focus on you, Miss M.  Let it go, that your brother may have some emotional challenges to deal with because of the extra stresses during these times.  He’s a smart, strong, kid, and overall he still has so many advantages in this world, he’ll figure it all out and be ok.

One year ago today

Today is Miss M’s first birthday.  Last year at this time, I was sitting in a cold movie theater on a hot day, watching some forgettable action flick with your dad.  Your brother was at school, and your grandma was at our house.  We were due at the hospital at 3pm (me without food all day – hence the daytime movie date for distraction) for our 5pm scheduled c-section.

I’d really wanted a VBAC – well, sort of.  I felt like a VBAC was the right thing to do, but honestly I was scared of laboring after the experience I had with your brother.  I do not think, without modern medicine, your brother would have made it out alive.  We found out after his delivery that he was growth restricted and my placenta was 1/3 average size.  He was also almost 2 weeks overdue.  The attempted induction, followed by a dramatic emergency c-section with a nurse holding the monitor against my belly as I was unhooked from the walls and wheeled to the OR and prepped, waiting for his heart beat to recover after a contraction, with the anesthesiologist literally running down the hall -yeah, I didn’t want to repeat that.

So, when we found out about your clefting at our 20 week ultrasound, at first, we thought this wouldn’t change our labor plans.  But at the end, as I neared 40 weeks, we’d had one or two lower than normal growth scans, and one not so great non-stress test, and my doctor was getting nervous about my going overdue again.  So, we talked, and I agreed to a scheduled c-section the first business day after your due date, when I was 40 weeks and 3 days.  We did everything possible to get you out the week before – walking, stripping membranes – you didn’t budge.  I remember the voices in my head just screaming as I was being prepped for the surgery that afternoon – NO.  Wait.  I want to try an induction.  This isn’t right!  But at that point, it felt like I’d past the point of no return, multiple doctors and a whole staff of nurses was preparing to do the surgery and bring our baby into the world.

And, as it turns out, that was the best decision we could have possibly made.  I’m assuming other KFS babies have been delivered “naturally”, since c-sections haven’t been around forever, but I’m also certain that it leads to a long, hard, risky labor.  Your cervical spine and shoulders simply can’t move the way they would have needed to during delivery.  I’m sure we would have gotten you out, some how, but given I’d had a previous c-section and recovered fine, I’m now certain this was the way to go.  It’s strange, b/c that was the only moment during the last year when my instincts have been wrong.