E-mails I have sent

Dear Nurse Coordinator for the Surgeon,

Of course after our appointment with the team on Monday, I thought of something.  I know we have mentioned before that Miss M’s ears are very asymmetrical (her whole jaw line is, but the ears are the obvious part).  First, is a corrective surgery an option, and second, if so, at what age would we likely be thinking of a surgery to improve her ear appearance.  Personally, I’ve grown to appreciate her asymmetrical-ness, but as an adult with a cleft lip, I also realize that at some point she’s not going to be so thrilled with them.  If there is something we could do while she’s young, we of course would want to explore that option.


Miss M’s Momma


(6-7 years of age was the answer, btw)


It’s hard on a marriage

I’ve heard all of the cliche’s about how hard having a child is on your marriage.  And, they are true.  Somewhere, I probably also heard that going through major medical issues with one of those children is even harder.  That’s true too.  And, now I realize why and want to explain to you, Miss M, should your dad and I not make it “til death do us part”.

It struck me today, as I was leaving a doctor’s appointment, frustrated by your father’s way interacting with the medical staff, and him frustrated with me, why this is so hard.  Most married couples aren’t put into these situations.  Most married couples don’t have to sit in a doctor’s office, have a ten minute conversation with a highly trained individual who is going to cut apart your child, and hopefully sew them back together again in the right way, hoping that we thought up all of the right questions to get all of the answers we need to get our baby through this ordeal.  Most married couples don’t have to leave the office, suppressing their fears, their emotions, their worries, not talking to each other about them, because quite honestly, the other person can’t take it either, and the other person doesn’t have any answers, just frustration of their own which might boil over with just the slightest little addition of your own emotions.  So it begins to feel like there is this whole part of you that you are not acknowledging, because you aren’t able to talk about these things, and you can’t rely upon the other person to help you – they are in their own pain, dealing with it in their own way.  It takes the utmost care and consideration and devotion to truly understand how another individual deals with their pain.  When you are in a position of grief, fear and pain of your own, it’s hard to take on another being’s pain as well.

All of this makes it sound like your fault, my sweet Miss M.  And that would only be true if you somehow chose to be the way you are; clearly you didn’t, you had no say or responsibility in the matter. At the same time, nothing you do or don’t do could affect our general discontent with the cards that you have been dealt in this life.  So never worry your sweet little head, never think of our discontent as your fault.

Baby, you’ve come a long way!

Today was your 9 month check up, Miss M.  You are 27″ long (25th percentile) and 16.5 lbs (above the 10th percentile)!  Way to grow, baby girl!  In a week we have an appointment with the craniofacial surgeon – hopefully he’ll think this is enough progress that we can schedule your palate surgery for May (fingers crossed).

And for today, some thoughts on beauty.  I do think you are beautiful, Miss M.  Your almond shaped hazel eyes are such a beautiful color, not as dark as my own brown eyes.  And they just shine when you laugh, which is often.  I love the area between your shoulders and your ears because that is where you are the most ticklish.  I love your upper lip, with it’s little attempts to move in the right direction – slowly, with time, it looks less like it is paralyzed, and more like the nerves and muscles are beginning to connect and move in the right ways, and I love seeing this change take place there. I love your long hair which lets me dress you up with a little bow.  I could go on and on about all of the things I think are beautiful about you.

I know you won’t believe me when you are older.  I wish I could shelter you from the pain of your teens and early twenties, when you will feel like such an outsider and completely unlovable.  But you will come to see, when you are in your 30s, how little all of the external stuff matters – it doesn’t matter AT ALL, Miss M.  Not one little bit.  Eventually, your yearn to be conventionally pretty will fade, and you will wonder why you spent so much time worrying about it when you could have just gone about your life with confidence since you are smart and capable.  I hate that society bombards little girls with images of beauty, and makes us feel like being pretty is the only thing that matters.  I hope if I teach you only one thing, it is that you are LOVABLE as you are.


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.


Instant Gratification

So far, your surgeries have been almost instant gratification.  At least, as close to “instant” as you can get when we’re talking about surgery.  Your tethered cord surgery was on January 9th, and less than 1 month later, it is like you are a different baby.  A list of the changes so far:

  • you are more flexible
  • you can sit with your legs bent to the sides, instead of almost straight out in front of you
  • you can sit for a very long period of time since you are so much more stable
  • the scoliosis in your mid/upper back looks visibly straighter
  • I think you have less pain and discomfort

The last one I’m really not sure about.  I think you were having some pain, and it hurts me so much to realize that.  You’d become very fussy during the 2 months before your surgery.  It makes me second guess why we didn’t postpone your lip surgery to do the back surgery first.  I don’t think any of the doctors even suggested this.  But I know it *was* a possibility, had we asked, and my instincts were freaking out a bit about postponing the tethered cord surgery for so long.

How do I do it all?

So I get asked that question alot.  ALOT.  How do I do it all?  The answer is, I don’t do any of it very well.  At least, not in my view of things.  The fact is, I still have so many emotions that simply remain bottled up, for fear if one escapes, they all will, and all hell will break loose.  Few days go by when the trauma of what you, Miss M (and me as your mom, and your brother, and your dad, by extension) have gone through so far doesn’t bubble to the surface, I let a single tear or two escape, and then I push it aside – too much to be done to wallow.  But once in a while, I’m reminded of it a bit more strongly.  Usually when I get that question – how do you do it all?  How do you keep such a calm attitude when your baby is going through so much?  How do you balance work and family (and this last from people who don’t even have a clue what I’m dealing with at home) – I really have to fight to keep down the tears.  How do I do it all?  Not very well.  But what I can do is be your ROCK.  That is what I can do.  And that is what I will continue to do for you, sweet Miss M.

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