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.

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.

Ask Me, Please

I’m not ashamed of my little girl.  I know she looks different.  I see it very clearly.  But I don’t know if I see it so clearly because I know, or because it is so clear?  Do strangers notice, or not?  Do they notice that she doesn’t look like everyone else?  I guess the answer is that sometimes they do, sometimes they don’t.  But when they notice, I wish they’d ask, so I’d know that they noticed, and so that I could tell them just how amazing you are, Miss M.  Just ask me – why does she have two scars on her upper lip, what are those from?  Why does she hold her head at a funny angle?  I won’t be offended, I see those scars, that tilt, every day.  If you ask me, then I can tell you how incredibly special my little girl is.  I’m proud of her toughness, her resiliency, her shear willpower and determination.  But you won’t know about that, and I won’t have the opportunity to tell you that, unless you ask.  So, please, ask me.  I want you to know.

On my island

One thing that I have realized about parenting, is that you have NO idea what is is like to be a parent until you are one.

Likewise I have found it is really hard for other moms of young kids to relate to what we’ve gone through with you, Miss M.  Recently, I saw someone I hadn’t seen in a while.  She and I have sons who are close in age, and she had a daughter about 5 months after I had you.  We hadn’t caught up in a long time so I went through a couple of the more dramatic moments in your history (normally I don’t go for the most dramatic moments, I tend to talk more about the mundane moments, but the conversation just went there).  So, after telling her about how you were almost killed at the hospital – twice – we’ve spent a lot of time there and given them plenty of opportunities to mess up, apparently – she then tells me that her daughter has been having some medical issues as well.  First there was a respiratory virus that she had a cough forever with, and then at 11 weeks they figured out she was tongue tied and they had to clip it.  At the pediatricians office, no stitches, it took about 5 seconds.  But it was terrible having to hold down her baby while they clipped it.

And, I’m sure it was terrible.  And I don’t think she was trying to one up me in any way.  She really was just trying to relate to our experiences, and I really am grateful to have friends who are caring enough to share their own challenges with me.  But as I was walking away, I couldn’t help but think what a huge gulf exists between our experiences.  It stings a little bit to see someone on facebook asking for prayers for their baby who has to have ear tubes.  Trust me, mom friend, those outpatient ear tubes aren’t going to hurt one bit.  Nor are they in the slightest bit risky or life-threatening.  Your little baby is going to be just fine, prayers or no prayers.*

I’ve also seen articles passed around my mommy circles about how crying it out is dangerous to babies’ brains.  I can’t help but realize that the major medical procedures you have been through, beginning with your stay in the NICU at birth, all of which have involved a lot of crying, must have caused MAJOR damage to your brain and emotional state, if what these articles say is true.   So when mommy friends get all worked up about “cry it out” it just makes me cringe – do you have any idea what my daughter has been subjected too?  We’ve both been traumatized.

I used to think that tough times taught you empathy.  Now I realize that really tough times teach you that you know very little about the world.  I can’t pretend to understand what it is like to be a parent of a child with cancer, for example.  I can’t pretend to understand what it is like to not have enough food to feed your children.  I haven’t had those experiences (thankfully), so I wouldn’t know what it is like.

Having a child with medical challenges makes you realize how powerful and powerless you are, at the same time.

*I should note that I am atheist, so I don’t actually pray to anyone.

The Surgery Hill

The time between surgeries is kind of like a hill.  Or maybe the opposite of a hill.  A dip?

I’ve been thinking about your next surgery a lot, Miss M.  But, we’re still at least 2 months away.  Why am I thinking about it now?  Well, I realized today that we’re at the peak of the between surgery hill – 2 months since the last, 2 months to go to the next one (give or take since it’s not technically scheduled yet).  So we’ve exited “post-op” and are entering a new “pre-op” cycle.  In fact, I just got a letter from your cardiologist, reminding us that we need to make an appointment, which I need to schedule so that the cardiologist can give clearance for your next surgery.  So the pre-op cycle has begun.

Since I have some catching up to do, and this isn’t the kind of stuff that makes it into the baby book, let’s talk about the pre-op from your cleft lip repair and your spinal cord de-tethering. The cleft lip repair pre-op was relatively easy.  3 specialists – ENT for ear tubes, audiologist for a follow up ABR, and the craniofacial surgeon.  The team did a good job getting everyone coordinated on the surgery day.  The only thing we had to handle was getting cardiac clearance in advance.  But then we had the unlucky timing of finding out about your tethered cord the week before your lip repair, so unfortunately this threw things off a bit.  Are we still doing the lip repair next week or not?  Is the craniofacial surgeon comfortable operating on her with a tethered cord?  How soon after the lip repair can she be scheduled for another surgery? So many questions, so difficult to get answers.  And then the neurosurgeon decided the craniofacial surgeon really needed an x-ray of your neck flexion and extension before your lip surgery, so that was added to the pre-op plans at the last minute.  Adding another worry – is the craniofacial surgeon going to look at her x-rays and decide it was too risky to operate on her lip (the problem is the anesthesia – under anesthesia, there is no muscle reflex to stop movement if it is painful/causing harm, so the surgeon could have tweaked her neck and broken something, if her range of motion was bad enough, for example)?  But we made it, and your surgery happened on schedule.

The pre-op for your tethered cord was absolutely one of the most difficult and emotional experiences of my life – third only to the birth of your brother and yourself, Miss M.  We’d been told that you had to lie flat on your back for 48 hours after the surgery.  Piece of cake – oh wait, you have a cleft palate and can’t suck like a typical baby and might just choke on everything and be unable to eat for 48 hours?  Hmm.  This could be a problem.  So I started about 2 months before the surgery, calling the nurse line at the neurosurgeon’s office, always speaking to someone different, getting responses varying between “I’ll call you back” (and obviously never getting a call back) and “the neurosurgeon will answer your questions at the pre-op appointment”.  When I found out a couple of days before the pre-op appointment that we’d be meeting with a nurse practitioner,  not the surgeon, I realized that ALL of the answers I’d been given were crap (not just some of them!).  So, the question persisted after the pre-op appointment, but at least I had spoken to a someone in person who seemed totally on the ball and I expected a clear answer from her (vis a vis the surgeon) within a couple of days.  Instead, what I got was a phone call from a random nurse from the nurse call line saying the surgeon is willing to postpone the surgery if you still have unanswered questions and want to meet with him again.  THREE DAYS before the surgery.  TWO DAYS before your Grandma flew in from 1000 miles away.  TWO MONTHS after we had originally scheduled the surgery.  I completely freaked out.  NO, we are not CANCELING the surgery.  Then I got a call from the hospital, saying “we heard you are canceling the surgery?”.  NO, we are not CANCELING the surgery, how did the hospital even get that message so quickly??  It was a mess.  I got to know the neurosurgeon’s scheduler on a first-name basis.  And then, less than ONE DAY before the surgery – the hospital calls again – so, we don’t have pre-approval from your insurance.  Through pure persistence and will power I GOT that pre-approval APPROVED – ten phone calls later, after being told it wasn’t going to happen that quickly multiple times.  DAMN STRAIGHT.  We are having that surgery on SCHEDULE.  And the surgeon finally agreed that we could roll you onto your side for feedings, so at least we had a plan for how to try to feed you.  So, you can understand why I might be a little anxious about entering another pre-op cycle.  Palate surgery, here we come!

I think what people who have not had a child with congenital birth defects requiring surgery do not realize is that it is NOT all laid out.  The surgeons are flying by the seat of their pants, if you will.  You are incredibly unique, Miss M.  You are not a routine surgery, in any way.  Repairing you is an art, not a craft.