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.

Pre-op check list

We’ve been to see the ENT (yes, they are going to replace your ear tubes, the left has fallen out and the right is on it’s way, as expected), the cardiologist (VSD is 2 mm and PFO is apparently covered with a thin layer of tissue, so things are improving in that respect), we’ve arranged for labwork papers from the geneticist, and yesterday we had your official pre-op appointment with the craniofacial surgeon’s office.

We’ve visited this particular office  many times, so we “know” all of the receptionists, med techs, the nurse coordinator, and the PAs.  The office is shared with the orthodontist who fitted and adjusted your nasal-alveolar molding appliance (NAM) weekly, which you had from about 5 weeks until your lip repair surgery at almost 5 months old.  And then we’ve been in for evaluations, pre-ops, and post-ops for your lip repair.  So, we know the routine.  A pre-op appointment basically consists of a general physical for you (weight, height, temperature, blood pressure, blood oxygen, listen to heart, lungs and stomach sounds, look in ears and mouth), and an opportunity for us to ask questions.

Right now your palate surgery is scheduled for 11am on June 8th, though the exact time could change.  The routine is that the hospital calls the day before to give us the official check in time and all of the stages when we have to stop various foods/liquids, but I know all of the rules by heart and the phone call is just a formality.  We arrive 2 hours before your scheduled surgery time, 4 hours before arrival we have to cut off all liquids, 6 hours before arrival we have to cut off formula, 8 hours before arrival we have to cut off all solids.  With a morning appointment, though not a first surgery appointment, the only one that really matters is the cut off time for formula – and yes, we will wake you at 2:30 am and give you your formula so that you aren’t starving when we arrive at the hospital at 9am.  We take care of you that way, and you will likely be too distracted by the change in routine to even notice that you’ve missed your morning drink.  They are anticipating that you will be in the hospital 1 night, though it is not uncommon to need to stay 2.  You’ll be in the IMC after surgery (intermediate care – we know ALL of the lingo now, the nurse starts to explain what the IMC is and your Dad says “oh, we know, we’ve spent several nights there, it used to be our favorite until they almost overdosed her there” – your Dad is nothing if not blunt).  The IMC has the ability to resuscitate children – we know from experience that they’ll have a 8 1/2×11 sheet of paper taped to the wall above your crib listing all of the doses for your weight for an emergency resuscitation.  Unlikely, but due to the swelling of your mouth/throat after palate surgery, it’s a standard precaution.  You’ll have a stitch through your tongue for the first day, which lets them pull your tongue out of the way easily in case you have any breathing problems due to the swelling in your mouth.  You’ll be on IV morphine until about the next morning (we’ve requested dilaudid, since you tend to get itchy from morphine), and you’ll be on the standard T3, antibiotics, and a few doses of steroids to keep the swelling down.  You’ll have to wear arm restraints for 2 weeks, until they have seen you at a post-op appointment, to check the sutures before removing them.  Feedings will be similar to your previous surgeries, and for you basically there are no restrictions since you still only eat purees (anything that can pour is ok)!  So, now we hope that you don’t get this stomach flu that has been ravaging all of the kids/parents at daycare (your brother had it last week, I had it this week), but if so we’ll call them and let them know.

Your pre-op is over.  At this moment, the next “milestone” is your birthday party on Sunday.  So now we get to have fun.  I cannot wait to dress you in your adorable pink and white seersucker dress with the embroidered cupcake with a “1” on the front, which I asked your Grandma to sew for you (Grandma loves to sew, and you are her favorite model), decorate the house with all of the adorable things I’ve been collecting and making over the last few weeks, and have a lovely ice cream party to celebrate your first year.  You are a survivor, and a fighter, little Miss M, and we are going to celebrate!

Feeling selfish

So, I totally understand that people who haven’t had children going through major surgeries can’t really understand what it is like.  I get that.  But, I hate that some make me feel selfish when I fuss over Miss M (not all, just a few, who really just don’t get it).  When I dropped the kiddos off at daycare this morning, I heard that there is a baby in her room who was throwing up, and there might be a stomach flu going around.  I said “Oh, poor baby D (sick baby).  I really hope Miss M doesn’t get it, her surgery is two weeks from tomorrow.” And the teacher said “we hope that none of the babies get sick”.  I held my tongue, but I really wanted to go into a ten minute explanation about why it would be particularly terrible for Miss M to get a stomach flu at some point within the next 2 weeks.  And now I just want to cry b/c I am thinking of all of those reasons, but I know to say them all out loud doesn’t help me *not* look selfish.

I don’t know how I’m going to make it through the next 2 weeks.  This is Maddie’s 3rd surgery, and will be her 18 and 19th nights at the hospital in her first year, (assuming she doesn’t get a stomach flu immediately before and we have to postpone), we are old pros at this, but we haven’t had great pre-op/hospital/post-op experiences.  And I’m just feeling like I’m going to lose it.

The grief pit

Some days I still feel like I can’t climb out of the pit of grief.  Instead, I dive into it, using blogs, facebook, scifinder (yes, I am a scientist!), other internet resources to seek out more information about Klippel-Feil syndrome, about parenting children with special needs, about how to do this.  And I find amazing things on some days.  Today, I found another mom to toddler baby girl with an even rarer genetic condition which caused congenital structural deformities.  I glanced around her blog, surprised to see some of the same topics I’ve posted on here.  Wow.  We’ve had some of the same experiences.  Fantastic!  Ok, not fantastic, but you know what I mean.  I also did some looking into the genetic tests that are being ordered at your next surgery.

But somehow, after indulging myself, letting myself do a little “mom of a child with extra medical needs”, I just feel sick afterwards.  Like I’ve had 3 too many glasses of wine.  Too much, too fast.   It sure was “fun” while I was doing it, but where did those two potentially productive hours go?  I shouldn’t even have those two hours to spare – web surfing while my kids are at daycare.  Let’s not even talk about the work I’m supposed to be doing.  So I get this lovely combination of emotional overload, due to the nature of what I am browsing, and guilt, due to feeling like I have so many more important things I need to be doing.

This happens often on days when I spend part of my normal working hours with Miss M at a medical appointment.  Today it was Early Intervention.  Two hours of discussion of your milestones, your goals – should be every mother of young baby’s goal and dream in life!  Instead, even though you are doing great, it just ends up leaving me drained, with the subprocess running in overdrive.

 

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