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.

 

Getting by with a little help from your friends

The date is picked, and the (e-mail) invites are sent.  I can’t wait for your 1st birthday party.

As we finish your first year, I’m in a place of gratitude.  It was most important to me that the individuals who really supported us this year be recognized in some way.  So, I’ve tried to invite everyone to your party who made a significant impact on either your day to day life or the lives of your Dad and I.  Your daycare teachers, who took care of you and your unique needs without making you (or us) feel different in any way.  They see beyond your challenges and see the lovable little baby that you are, while still showing a huge interest in your medical conditions.  Your physical therapist, who has come weekly, and shares in our joy as we see you reach each milestone.  Our friends and co-workers who brought food after your birth, who visited us at the hospital, who listened when we needed to talk.  A local mom whose daughter is 11 months older than you with a similar cleft, who shared information and friendship as we traversed your first cleft surgeries.  The nurse coordinator for the cleft team who helped us learn how to feed you in the NICU, and has guided and been there with us through every step in this process.

It ended up being a larger guest list than planned, but there were so many people to thank.  But this is YOUR party, baby girl, for YOUR friends.  We didn’t invite friends and acquaintances we know through your brother, or who are very likable friends of our own but somehow never connected to you and your challenges.  This is YOUR party.  We are having a pretty cake, but ice cream is the main event – I think you’d choke on cake and it wouldn’t be fun for you.  Ice cream – you can still get your 1st birthday sugar fix.  I’m so excited for you, Miss M!

Determined

There have been many heartbreaking moments in your first year, sweetie.  And I know I write mostly about those moments here, and that is because I use this space to process those thoughts and emotions.

But, I also want to document your incredible progress.  You learn new things so fast and so early for your age.

A month ago, you started waving and giving “high fives”.  Now, at age eleven months, you are signing two word sentences.  Earlier this week at dinner, with you in your highchair, me stealing bites of my own food in between offering spoonfuls of puree to you and cutting up your brother’s food, your Dad and I both saw you make the signs for “more” and then “food“.  We looked at each other with our mouths wide open.  We couldn’t believe it.  No.  Really?  Did Miss M really just sign “more food”?  Dad said, no…I think that was a hand clap and then a finger in her mouth…  So then I looked at you, and asked, “Miss M, did you want more food”?  And you did it three more times and then ate an entire jar of peaches and mango.  Alright, then!  Communication has begun!

I suspect walking is going to be just as fast of a transition.  A month ago you had just started scooting around on your butt.  Now, you are pulling up on anything that is under shoulder height and want to constantly be standing.  We walk you around, holding your hands, and every week you require less and less support.  At this rate, I really think you could be walking by 1 year old.  The doctors and physical therapists will be astonished.  It’s hard to describe what an amazing accomplishment this is.  Your cervical vertebrae are fused in multiple locations, you have a slight Sprengel’s deformity on your right side, and both of these things combined cause you to have a significant imbalance in your shoulders and hips, and a visible sideways curvature in your spine which may or may not improve as you get older.  Oh, and you had a tethered cord release in January.  Really.  Walking by age 1?  That would be incredible.

You are an extremely determined little girl, everyone around you has seen that in you from the very beginning.  After all, you performed your first medical procedure when you were about two weeks old.  You’d been on a feeding tube while they tested and monitored to ensure aspiration had not caused your pneumonia, and we had started feeding you with a bottle again and were debating when to remove your feeding tube.  By morning, you’d managed to get that tape off your nose and pulled all 12 inches of tubing out, from your nose to your stomach.  At two weeks old.  Crazy baby.  But we absolutely adore your determination and your strength, sweet girl.

Four weeks

Four weeks from tomorrow, you will be having your third surgery.  It’s hard to explain, when you have such a visible issue that so obviously needs to be “fixed”, how incredibly hard it is to watch you go through these surgeries.  Logically, it “has” to be done.  But logic has no bearing on the extreme emotions that I feel when I hand over my baby to strange medical staff, to be taken into an operating room, under anesthesia, separated from the caretakers she knows and loves, to be cut apart and painstakingly pieced back together, and then to see you awake in recovery, hurting, confused, groggy, unrecognizing.  The beneficial outcome doesn’t diminish the pain and fear of the surgery in the slightest when you are in the moment, facing your child.  And having been through this twice, I know this now.  I know how incredibly hard this is going to be, how it feels like my heart is breaking in two to see you in pain and frustrated and upset and struggling.

A symbol of your strength

I thought long and hard after your first surgery about what I could do to “commemorate” the event, knowing there would be many more in your future.  Commemorate, not really the event, but celebrate that we made it through, that YOU made it through, and remind you of your strength as a child, for when you have to face difficult challenges as an adult.  I finally decided on a charm bracelet.  I’m following my usual method to ensure that a material purchase made now will still be “fashionable” to be worn 20 years from now – go with the most expensive brand.*  Seriously.  Think of Tiffany’s.  Works, right?  I didn’t go with Tiffany’s, because after all of the surgeries you will likely have, that bracelet would be too expensive to ever wear out of the house!  But, I’m hoping my second choice, Pandora, stays stylish for almost as long.  And, it works for me as retail therapy – time to start picking out your next charm.

*your dad would argue that is always my modus operandi – not true, not true, I know we are on a budget here.

Do you remember?

At least you are having these surgeries at a young age so you don’t remember them.  Right?  Isn’t that what people say?

This is probably true for the most part – as an adult, I don’t remember my cleft lip surgery when I was 6 months old.  I do remember a surgery when I was 3 or 4 – it was for placement of ear tubes, so I probably had no pain afterwards, but I do remember the anethesia, and the feeling of the loss of control.  I can still vividly picture all of the people in the surgery room dressed in blue – doctors, nurses, all towering over me in my operating bed – turning into black monsters as the anethesia took affect.  Actually, this vision was my main recurring nightmare when I was a child.

And then there is the general perception that a 10 month old baby, certainly can’t remember things from when they were 5 months old.  Right?  It’s not like they remember being in the womb before being born.  Right?  But then you hear those stories, about twins complaining about how the other used to kick them when they were in the warm, dark, place.  So maybe they might remember something of it.

So, what does this mean for your surgeries?  Do you remember your lip surgery, at 5 months old?  At ten months old, you have now developed some significant length of memory – you remember me, obviously, even if I have to travel away from you for a couple of days. So your memory lasts somewhere between a couple of weeks and ten months.

As you get older and have more control over your movements, it’s become very obvious that you dislike anything (other than a spoon or bottle) being forced to touch your mouth.  Serious protests, kicks, and arms pushing away things, like washcloths when we try to wipe your mouth, or a toothbrush for your two little bottom teeth.  I think your brother did this a little bit.  But you do it every time.  So, I think you do remember the pain from your surgeries.  I wonder how long it hurt for.  I’ve got to imagine it hurt pretty badly for at least 2 or 3 weeks, possibly longer.  And my poor little baby had to figure out how to eat through that pain.  It must have hurt longer than this, though.  We didn’t start touching or massaging the scars until about a month after the surgery.  So I wonder if this hurt you, too?  And I wonder how long it will take you to forget the pain?  As we come up on your palate surgery, fast, I’m hoping we can keep your pain managed and under control after the surgery so that you don’t have to worry your sweet little head over your hurting mouth.  Reason #1548 why I am grateful for modern medicine.

Miss M = 1, Sippy Cup = 0

I honestly don’t know why this is, exactly, but you are supposed to be off of your bottle and drinking everything from a sippy by the time you have your palate surgery (about 5 weeks from now).  I bought a sippy cup a while ago, one with a squishy, flat nipple that toddlers generally chew on and suck on concurrently to get liquid out of (a bite valve type of thing).  I used these with your brother at first, too, and then he chewed through them all so we switched to sippies with a hard spout.

Over the last couple of weeks, it was reiterated to us about four times that we need to transition you to drinking from a sippy – first at the follow up appointment with the surgeon, then when we took you to their specialist dentist, then when we talked to the speech therapist, then when I ran into the nurse coordinator for the team when we were in the building visiting another specialist.  Yes, I know.  We need to start the sippy.  We’ve kind of started (meaning I had one sitting in the cabinet at home).

So, this past weekend, I decided it was time to start.  We’re no longer worried about your weight being sufficient for surgery, you have gotten the all clear, and the surgery is scheduled and coming up fast.  So.  I managed to get it in your mouth the first few times.  You’d chew, the milk would spill out in a way that was very different from your current bottle, and then you’d get mad and start screaming.

You are currently fed with a standard fast flow nipple on a bottle that is shaped like an oval, instead of a circle, and made of a more flexible plastic so that the person feeding can squeeze the bottle gently and the milk comes out in a semi-controlled stream.  We have used this bottle since your birth, starting with slow flow nipples, gradually increasing the flow of the nipple (just the size of the hole at the tip) whenever it seemed like you could handle swallowing a bit more volume at a time.  Each nipple change was a new learning process – a new pressure for the adult to squeeze, a new angle to tilt, a new rate of pausing, to figure out how to calibrate the flow with the amount you could handle swallowing.  Gradually, over time, we’d squeeze the bottle a little more, as you became more competent at swallowing the milk.  I don’t remember there being a whole lot of fighting the nipple changes, or resistance on your part to each change.  The shape/size/texture remained similar, the bottle was the same, so maybe you just didn’t even notice the difference (and you were younger – we’ve had you on the fastest flow nipples for about 4 months now).

I figured it would take time, so I’d continue just offering the sippy, then feeding you with a bottle, until you gradually started drinking more and more from the sippy.  You, apparently, have other plans Miss M.  At this point, you are kicking the sippy away and screaming when I pick it up and attempt to bring it towards your face.  You are NOT letting that thing even get close to you.  Like it’s offended you in some way.

I have a couple other recommended types on order -hopefully the different shapes and colors will confuse you into letting us try to feed you with them again.  But I’m begining to think we might end up having to go cold turkey, if this continues.  It seems easy – just let you cry until you finally eat, you won’t starve yourself, right?

We did the cold turkey method to toilet train your brother – took off the diapers, put on the underwear, congrats, you are a big boy now.  I had never seen a two year old look like he was just melting from stress and pressure, until that weekend.  It did work, eventually.  Sure wasn’t the easiest transition.  Survival of the fittest.

You are definitely a survivor, Miss M, so I know in the end it would be ok if we went this route.  But I sure hate to put you through yet another traumatic experience.  Time to buy every single sippy I can get my hands on.