Assumptions

I have started several posts about our time at the hospital for Lil' Bit's surgery, and may or may not get around to finishing and posting them.  For now, we'll talk about today.  Today was to be our triumphant return.  Discharge day.  And it was.  Sort of.  We are all home and, although totally exhausted, we are doing fairly well.  But I relearned a few lessons today. 

First, I relearned not to make assumptions.  This lesson came upon the discovery that I had, in fact, made a giant assumption.  I did not realize I had, but I did.  I had assumed that surgery would "fix" my child.  Sure, it would be difficult and emotionally taxing and recovery would be hard.  But, in the end, surgery would either fix my child, or it wouldn't.  I never considered what would be involved during the waiting to find out period.  You know, the period where you get to bring them home, but you still have to give them meds.  That's right meds.  It never occurred to me that when I brought my child home she would be on medication, let alone three different meds multiple times per day.  Oh, and did I mention that they all tend to make her vomit?  We have learned a few tricks and most of the time they work.  But today we had 5 administrations for 3 doses, and lots of "clean up on isle mommy."  I hate holding my screaming child and trying to get her to take medication I know she needs.  I really hate having to do it 6 times per day.  I'm freaked out that I will have to start doing it 8 times a day once the third med finally arrives.  Yeah.  About that third med.  It's one of those black box medicines that I will need gloves to handle because I've signed up for another round of IVF and we will have to use separate syringes and pill crushers for.  *sigh*

As I sat on the floor, trying to be calm (but probably failing miserably) during the last medicine administration, I got angry and couldn't quite figure out why.  Until, thud, it finally hit me that I had made this giant assumption that once we brought her home, even if she wasn't fixed, we would be done for now.  I don't know why I never considered ongoing treatment such as meds, I just didn't.  And, quite honestly, I'm just thrilled that she didn't have to come home with an NG tube (and even more thrilled that I didn't have to be trained how to put one in and take one out)! 

This leads me to my second assumption.  I assumed that I was prepared to have her home.  I expected the return home to be a great relief.  Instead, I felt the same panic as last year when I brought home a newborn and wondered what the heck I was supposed to do with her.  The panic is the same, but the specifics are different:  What happens if she still won't drink whole milk or Pediasure?  (This issue is the subject of a post in progress about poor planning on my part).  What happens when she vomits up the meds at home?  How do we get her to take them when all the tricks we learned failed?  How long after taking the meds does vomiting count as not having gotten the dose?  (Apparently, the answer to this for our purposes is 20 minutes).

All of these are difficult things to handle by themselves.  Doing them on little sleep, after a long day of travel, with nerves and emotions still raw from 2 1/2 weeks of adrenaline and anxiety, is damn near impossible.  And yet, we managed to get her meds in her, give her a bath, and get her to bed.  We have overnight meds we have to set an alarm for and lots of other challenges ahead of us.  We're creating a chart so we can track and make sure we have given her all her meds-- a necessity, since we're lucky to remember our own names these days. 

But we're home.  And she's doing amazing.  And we're taking things one day at a time.  Which is, in fact, the only way anything can be done.  We live life, whatever challenges, joys, successes, and sorrows come our way, the only way we can.  One day at a time.  One minute at a time.  One moment at a time.  Sometimes, though, it takes a giant 2x4 upside the head to remember that lesson.  And man, do I have quite a headache.

Mixed Emotions

It's been a strange few weeks here at the hospital.  As previously mentioned in other posts, Phil and I have been discussing having another baby, but we were waiting to hear the outcome of Lil' Bit's surgery to make any final decision.  Well, since everything was looking so good for her to go home on the 14th, we called the fertility center on the 12th and paid our deposit for an FET (frozen embryo transfer).  Of course, it was over the weekend, after we did that, the world went sideways.  Lil' Bit stopped holding down food and her discharge got delayed.  Then came the second-guessing.  Should we have waited longer to decide?  Ultimately, it doesn't really matter.  The decision is just as over as the Peloponnesian War.

So, this week I called the center and made an appointment for some tests I have to have this month.  If all goes well, I start meds around December 6 for a January procedure and September baby.  As excited as I am, there is some piece of me that keeps screaming in the background: "Are you crazy?!  You're not ready to do this again!"  And yet, even with all I have seen here and everything we have gone through with Lil' Bit, I want another baby.  I want Lil' Bit to have a sibling.  I want another child to help keep me from being over-protective of Lil' Bit--someone that will help me treat her like a normal kid.

At the same time, however, I have to temper all these wants and hopes with the fact that nothing is certain.  Just because it only took one round of IVF for Lil' Bit is no guarantee that things will work this time.  It certainly improves our odds, and I definitely feel more positive than I did last time that things will work.  Nevertheless, I have to remember that just because we have signed up to do another procedure is no guarantee of another child.  On the flip side, even if it works, there's no guarantee we'll only get one.  My dear friend keep threatening that we'll have triplets --a pair and a spare as she likes to say.  We'll cross that bridge when we get to it.  For now, all we can do is move ahead with our decision, knowing it's what we want to do.  Whether we get none, one, or multiples, we'll get what we get, and we'll deal with it when we get to that point.  For now, it's nice to have a little bit of excitement and hope growing in my heart as I (ever so impatiently) wait for Lil' Bit to get out of the ICU.

Lessons From the ICU

Tom Petty said it best--the waiting is the hardest part.

Here I sit, a full week after Lil' Bit's open-heart surgery, and we still don't know when we'll go home. With her first birthday coming this weekend, and Thanksgiving next week, I am more than ready to be home. But, as with most things related to Lil' Bit, I am not the one in control; she is. Surgery went extremely well and she was on track to go home yesterday. However, over the weekend she couldn't keep anything down, including the meds she needed to keep her heart pressures in line. So, she's still in ICU, while they try and get those pressures in line.

 Making matters worse is that Lil' Bit isn't drinking much of anything (she is a great eater though). This is, ironically, a problem of my own making. She never took to drinking juice or water, and I never saw much reason to force her since she ate well and drank lots of milk. I had managed to pump enough to almost make it to her first birthday. Sadly, I didn't quite make it; we ran out--just before surgery. So, Lil' Bit wakes up at the hospital and all there is to drink is stuff she's never had before. It never occurred to me that my pumping & freezing plan would have such a major flaw. On the plus side, she's making progress with whole milk, and today she drank strawberry Pediasure, so they won't have to stuff it down a feeding tube. Still, if we ever needed more evidence that's she a stubborn one, this is it.

Not surprisingly, I can't control the doctors, or Lil' Bit's response to the meds, or make her eat, or make her nap.  So, I am really struggling. Xanax has become my new best friend. It really helps keep the edge off. Text and Facebook support, calls from my mom, and my in-laws' continued presence all help too. Still, there are days I am ready to cry, scream, or both, at the drop of a hat.

The waiting isn't fruitless, though. In waiting and learning the stories of other families, I am grateful that Lil' Bit is otherwise healthy. So far, she has had 6 roommates. Among them, an asthamatic; another cardiac patient who had surgery the day after, but has already been released; and two neuro patients--one 7 years old, and one 5 months old who has already had 4 surgeries. Elsewhere in the ICU are cardiac patients only months old, babies with RSV and whooping cough, a baby with double pneumonia and MRSA, and myriad other conditions. But, severity and longevity in ICU don't matter. What I discovered is that I am now a member of the club. Because all of these parents get it. Whether their child is in for a day, a month, or longer, they have all felt the tedium of waiting. They have all gotten tired of doctors and labs and tubes attached to their children. They all know that they cannot bear to eat another bite of Subway, Wendy's, Quiznos, or Biggby. And yet, we all cheer when someone graduates to go home. And we all grieve when a child is lost. And we all support one another as we wait. This support is sometimes all it takes to get through one minute, and then another, and another, until you look up and, finally, it's your turn to go home. It is an amazing experience of grace and love and community, and I am humbled to be a part of it.

 But, in case you were wondering, it doesn't make waiting any easier.

Doing the Job

Last week, Lil' Bit got sick.  We took her to the doctor who said she had (yet another) ear infection.  He put her on antibiotics and we raced against the clock to get her better because if she's sick within 2 weeks of her surgery, they could move or cancel it.  We took her back in to her doctor today, and he gave us the all clear.  Phew!  I breathed a sigh of relief that we didn't have to rearrange all the plans we had made, but put in a call to the surgeon to let him know what was going on.  I spoke with one of the nurses and she assured me everything was fine and they would just make sure to give her a good once-over when she came in for the pre-op testing.  All was copacetic.  Sure, Phil and I got put on antibiotics (because we got whatever Lil' Bit had), but otherwise, everything was fine.  Or so I thought.

Part way through my day of napping and recovery, I discovered that I was super hungry and my stomach was upset.  I found this odd, particularly since it was last week that I was on the steroids that generally cause increased appetite.  But no.  The hunger came today. Not helpful.  Why?  Because I started Weight Watchers about 2 1/2 weeks ago.  It's been going very well; I've already released 10 pounds.  (In my family, we try not to say that we "lost" them, because generally you try and find things you have lost).  Anyway, I was surprised to discover that I had nom, nom, nommed my way through my points for the day by 2:30!  What the heck was going on?! And what about dinner?!

It took me a while to realize that the hunger and the upset stomach were my body's way of telling me my stress level is out of control.  I didn't think I was stressed.  After all, I spent the day recuperating and being told all my plans were still in good order.  It wasn't until dinner that I finally figured it out.  I was washing dishes while Phil fed Lil' Bit her dinner.  She was doing really well, but had some fussy moments.  And in those fussy moments, I knew I was "done."  "Done" is a magic word in our house.  It means that it is time for the other parent to come to the rescue because whoever is "done" has run out of energy/patience reserves.  The thing was, I wasn't the parent on duty.  Phil was taking care of Lil' Bit.  Why was her fussiness driving me crazy to the point I was "done"?  It hit me.  I was done because I had run out of minutiae to worry about and plan.  There's nothing left to do but wait.  In calling the surgeon's office, I had to acknowledge that Lil' Bit's surgery is less than 2 weeks away.  The hunger (my long-term coping mechanism of eating when stressed), the stomach ache (putting all my stress in my stomach), and being done; they were all signs that I'm finally having to accept that Lil' Bit's surgery is going to happen, and soon.

I can cry.  I can scream.  I can shout n't fair!  None of it will change the fact that I have to take my daughter to the hospital and let them cut her open and operate on her heart if I want her to be healthy.  I feel like Dr. Seuss's Grinch--it doesn't matter how much I hate it or try to avoid it, I can't stop this surgery thing from coming.  And it doesn't matter that it's the right thing to do.  And it doesn't matter that she'll be okay.  There is nothing reasonable or rational about how I feel.  I am a mother.  It is my job to protect my daughter, but I can't.  I can't protect her from this.  I can't keep it from happening.  I can't control it.  I can't fix it.  I want to rage at the world.  I want to rage at God.  I want to hold my daughter tight and never let go.  I want this not to be happening.

But it is happening.  And my world is out of control.  So, I want comfort.  I want to eat a pint of pumpkin cheesecake ice cream.  I want an entire bag of barbecue potato chips.  I want a dozen Tim Horton's doughnuts.  These are the patterns that have always brought me comfort (hence, the need for Weight Watchers).  But I won't.  And do you want to know the crazy reason why?  Because I can control that.  I can control what I eat.  I can control not letting my weight loss goals get sabotaged by old patterns.  I can control me.  And I'll do it.  Not just for me, but for Lil' Bit.  Because she needs me to be strong enough to get through this, so I can help her get through this.  She needs me to "be the mommy."  And I remember that I signed up for this job.  I fought for this job.  I paid good money for this job!  So, it's time to pull up my big girl pants and do this job.

Insane Hopefulness

It is often said, though unknown who first said it, that the definition of insanity is doing the same thing over and over and expecting different results. By this definition, I am insane. Hopeful, but insane. Why? Because month after month I hold out hope that I can conceive a child the old fashioned way. That Lil' Bit can have a sibling without me having to get shots and be poked and prodded for three months before all the poking and prodding that comes from being pregnant. But, each month, I am heartbroken when I discover nothing has changed. Not surprised, mind you. Just heartbroken. And yet, I still hold out hope. Because, although it's improbable, it's not impossible. I personally know couples who had the same issue I did and managed to conceive. I know other couples who, once they used IVF, were then able to conceive on their own. I also know, however, thay my issues are somewhat different. Usually, those who successfully conceive after IVF are those who had unexplained infertility or miscarriages and whose bodies suddenly realized they knew how to work and did. When physical blockage is the issue, that's not something that usually changes. It can, it just usually doesn't. So, my logical, practical side knows that I am unlikely to conceieve without another round of IVF. And, if that's what we decide to do, we will. But the hopeful, whimsical, insane side of me thinks that maybe this time, we'll get a different result. For this month, there is no miracle baby. Who knows, though. Maybe next month. I just can't help myself. I'm suffering from hopeful insanity. Still, I think insane hopefulness is better than no hopefulness at all. And, don't forget, there's an equally prolific saying in my favor: if at first you don't succeed, try, try again. So, here I go.

Gender Roles

I grew up watching Free To Be You and Me.  For those who aren't familiar, it was a bunch of vignettes, most of which were about gender roles, with a very clear message that men and women, boys and girls, can all do any and everything equally.  It had all kinds of stars, including Mel Brooks and Michael Jackson.  There is a song sung by former football player Rosey Grier telling girls and boys that "It's Alright to Cry."  There are bits where moms and dads both do every kind of job.  There's even "William Wants a Doll," sung by Alan Alda, all about a boy who is great at sports and loves them, but what he really wants is a doll, and what happens when his grandmother gets him one. 

Now, whether it was strictly based on this, or, more likely, in addition to lots of other influences, I never really cared much about gender stereotypes growing up.  I played with with My Little Ponies and Strawberry Shortcake dolls, but I would just as likely go out and help my brother dig pits and blow up his GI Joe figurines with firecrackers (likely the beginning of my love of fire, but that's a different story).  I would climb trees wearing pantyhose and make-up.  I was good at math and science and was encouraged to become an engineer.  Even though I chose a different path, it's still a male-dominated field.  I asked many a guy out rather than waiting on him.  I even broke the big taboo and asked Phil to marry me--he wasn't getting around to it fast enough.  Needless to say, I have never felt terribly boxed in by gender roles.

As a result, I'm a big fan of letting kids be kids, regardless of what the gender stereotypes tell me they "should" be doing.  If little boys want their toenails painted because mom and sister are doing it, that's perfectly fine.  If girls want to play with blocks or tear things up or just play in the dirt, that's fine too.
  
Given that background, I figured I would have no difficulty sharing these values with my daughter.  I dressed her in all kinds of colors and patterns, not caring whether they were "girl" or "boy" colors.  I even got indignant that "neutral" colors only seemed available up to 3-6 month clothes.  It seemed as though people might buy clothes up to that size without knowing the gender, but after that, surely you knew the gender and wanted all pink for your daughter.  Even when I could find other colors, they were still frilly.  Now, don't get me wrong.  I love frilly and I love dressing my daughter up in frilly.  But I also love to put her in a pair of jeans and a polo shirt.  She's also adorable dressed in plain bib overalls and a white onesie underneath.  She's so active and rough and tumble (quite a surprise given her condition, but again, I digress).  I just wish I didn't have to go to the "boys" section to get these items.


Imagine my surprise, then, when I went to purchase a new toy for my daughter and found myself thinking that something was too boyish.  Too boyish?  After letting her play with the construction trucks and plastic toolset in the church nursery?  After buying her books about dragons?  After spending hours wondering what her first Lego set will be?  I think I experienced a case of mental whiplash just by having the thought.  But there is was.  Even as open as I am to breaking gender stereotypes, I am not immune.  I can only imagine how much more difficult it is for those who have only had the roles reinforced, rather than challenged.  On the bright side, I noticed that I had the thought.  And I only had it on the inside!  Still, because I had the thought, I am going to try and be more careful in the future.  This is not to say that I feel the need to overcompensate by buying every "boy" toy I can think of.  I buy toys I think Lil' Bit will like playing with based on what she currently likes.  One of her current favorites is a bright orange flashlight.  (She loves it so much, we discussed dressing her up like a Jedi for Halloween, but I still want to go with the ladybug).  She also loves her toy stroller, though.  She loves blocks and animals and books, but you can see her eyes light up when I show her cute clothes.  All in all, I guess we're doing pretty good on the letting her pick what she likes thing.  Whew!

And, if I need a refresher, I have the Free To Be . . . DVD handy.  I've already played it for Lil' Bit once.  Turns out, she's a big fan of Rosie!  Who knew?

Being the Mommy

I never really thought much about all of the things I would be required to do for my child before I decided to become a parent.  Such things as, oh, making major medical decisions for my child's care just didn't cross my mind.  But more than that, there are the smaller, daily or weekly things you have to do, for their own good, that make them cry.  And you don't want to, but you have to.  Whether it's taking away a dangerous object, setting boundaries and moving them away from something after they have been told "no," or sucking snot from their nose when they have a cold.  All of these things make Lil' Bit cry and scream.  And I hate doing it, but I have to.  That's what being the mommy is all about--being the responsible person and doing the responsible thing, as opposed to the easier, more expedient, causes less trouble, thing.  So, when there's something that has to be done, like giving Lil' Bit medicine, or putting her to bed when she doesn't want to go, we look at each other and say, "Be the mommy"; "Be the daddy", and prepare ourselves to survive the screaming that is to come.
However, being the mommy also has an upside.  There is nothing as wonderful as coming downstairs and seeing my daughter's face light up as she sees me and watching her hold her arms out to be picked up.  Or when she wraps her arms around me and give me a big snuggle and cuddles her head into my neck.  Or, when someone else is holding her and I come up and she gets this huge toothy grin and moves as if to jump into my arms.  These are the rewarding parts of being a mommy that make the difficult ones worth it.
Recently, I've noticed that, as we get closer to Lil' Bit's surgery, I spend more time playing with her and hugging her and snuggling with her.  It's not that I think she's not going to make it, or that anything bad is going to happen.  But I also know that things do happen; sometimes when we least expect it.  So, I want to make sure that I'm taking as much time as I can to enjoy my little girl.  And, honestly, there's no downside to doing it.  It's not as though there's something "better" I ought to be doing with my time.
So, here's to being the mommy.  Whether it's difficult responsibilities, or wonderful rewards, for me, it's totally worth it.