Holiday Frustrations and Discernments

Traveling over the holidays this year has been more difficult than usual. On the plus side, Lil' Bit met her namesake again and the unseasonably warm weather made driving less treacherous.  We also got a chance to go to the movies while Nana watched Lil' Bit; something we haven't done in a while.  Still, this has to be one of the most difficult holiday travels:

-We spent 30 minutes in a gas station bathroom changing and washing Lil' Bit and the car seat after she turned into a volcano of vomit.  We then purchased an air freshner to prevent me, a sympathetic barfer, from making it worse, but the combo of the two smells gave me a massive headache which caused severe nausea.

-My contacts tore, my back-up glasses broke, and the lenses my doctor's office sent by mail to Tennessee did not arrive before we left.  Complete vision fail!

-We got stuck for 2 hours on the Interstate behind an 8-car pile-up with car fire, with a screaming toddler who refused to nap or be placated with her toys, making us late to our destination and requiring us to keep said screaming, tired toddler awake even longer to get her last two med doses in because we missed them due to the whole lateness thing and the two meds have to be given an hour apart.

Had you asked me last year, I would never have said that traveling with a 1-month-old would be easier than a 13-month-old, but it was.  It also occurred to me that if we have another child, I won't be abe to sit in back and feed and play with the kids; we'll have to stop a lot more frequently.  Needless to say, most of this trip fell heavily into the "only child" side of the baby equation.  And yet, I can't help myself.  I still want another one.  I cannot explain or rationalize it.  I have moments when I'm uncertain I can handle the one I have, but it doesn't change how I feel.  However, because it is not just my decision, we are still discussing.  And, in case you wondered what else might fall in the mix, I present you with two such thoughts:

1). Why are we having additional children? It needs to be because we want that child, not because we want a sibling for Lil' Bit, or a child to take attention away from Lil' Bit's issues.  So, can we honestly say it's about wanting another child for that child's sake?

2). If we don't do a February procedure, we likely won't do it before May (March means a due date around Lil' Bit's birthday and April means an Easter procedure and Christmas delivery, which is a definite no).  If we do a February procedure, we are setting ourselves up to deal with all of Lil' Bit's 1-year surgical follow-up visits and procedures with a newborn in tow.  Is that really a good idea?

The most difficult thing about this decision is that every day I have experiences that land heavily on one side or the other.  Very few days are neutral.  It's almost never a good idea to make decisions when under stress, but once you are a parent, ALL decisions are made that way.  If I pick a rough day to decide, Lil' Bit will be an only child.  If I pick a good day, I might believe my coping skills are better than they really are.  What if decision day is a good day for one of us, but not the other?   Ultimately, how can I trust the final decision we make, no matter which way we decide? 

And yet, anything less than a complete "yes" really has to be treated as a "no."  Otherwise, we're short-changing ourselves, our marriage, Lil' Bit, and the children-to-be-named-later.  It's not the answer I want, but it's the only one that seems to make any sense.   So, we continue to talk, to wait, and to discern.  And if we miss February, then we miss it.  And that hurts.  Just typing those words hurts, so deep is my emotional ache for another pregnancy; another child.   I want it now.  I want it already.  I want it yesterday.  But, I must remember the wisdom of the Rolling Stones.  I may not get what I want, but hopefully, I'll get what I need.  I just wish I knew what that was.

The Power of Routine

Last week, one of my friends at work noted that we must be getting into the groove with Lil' Bit's meds because I seemed much calmer.  I suppose that's true, although I don't feel particularly calm most days.  Glad I can still fake it :)  Anyway, her statement made me think.  There is something to the power of routine.  It's how we sleep-train kids-Bath, Jammies, Book, Bedtime.  Each night, once the routine occurs, they learn to expect what happens next--lights out, door closed, sleep time.  So, even though interrupting our day 6 times for mediation still is frustrating, as is waiting the additional 20 minutes each time to make sure the dose takes, we're much better at it.  We have something that resembles a routine and it has made life simpler.  That is not to say life has been anything close to simple.  All of this craziness on top of Advent was bound to be problematic--and it has been.  But we have managed to stay married and not to kill each other or lose any fingers or toes.  All in all, I think we're doing well.

In the process of working on things, we had a fascinating discussion last night as we were contemplating whether we were going to go forward with another IVF cycle.  Yes, dear readers, the lack of posts about shots and prep is not because we're being quiet this time around.  It's because we postponed it.  Knowing that stress is such a huge factor in whether a cycle is successful, and both of us feeling that we were in way over our heads, we called the center and pushed our cycle out one month, with the option to push it back further, if necessary.  We are now figuring out whether we are willing to go ahead this month, or wait a while longer, or do it at all.  In that vein, we wanted to wait until Lil' Bit had her follow-up appointment with her pulmonary hypertension specialist yesterday.

Before we get back to the fascinating baby conversation, take another quick detour with me as I summarize where we stand with Lil' Bit's treatment:

1)  We can finally stop one of her three meds (after weaning for 1 week).  Hooray!  Happy dance!  *Insert other related excitement responses here*

2)  Her two other meds are still 2 and 4 times a day, respectively, and can't be within an hour of each other.  So, meds still 6X per day.  Boo!

3)  Her pressures did not go down, but they also did not go up.  *Insert neutral response here*

4)  Her condition is likely chronic, but that doesn't mean she won't get off the meds.  There are generally no concerns for children with pressures where hers are currently, but they want to keep her on the meds for about a year to see if the pressures will go down further.  *Neutral response, maybe slightly positive*

5)  She doesn't need to go back to the doctor for 3 months and won't have to have a heart cath for probably a year!  Yay!!!! *repeat*

6)  She still has to have monthly blood tests for one of her meds.  Boo!!  *repeat*

7)  She can go back to daycare in January!  Woo freakin' who!!!  [This is, truly, what will save our lives!  As a brief aside--a giant thank-you to those ladies who have come to watch Lil' Bit at our house so I could go back to work!!!]

In sum, still lots to do, but generally good news.  Lil' Bit it doing great.  In fact, you would think she's on speed with all the extra energy she now has, which is, apparently, fairly common in children who undergo heart surgery.

We return, now, to last night's baby conversation.  *Spoiler alert*  We still haven't decided where we are.  But in the process of talking about it, something interesting came up.  Phil was talking about how difficult it had been to interrupt his day to have to come home and give Lil' Bit meds at various times.  We discovered that he was experiencing something akin to the frustration I had felt when I had to do all the pumping.  Before I moved to a 4 or even 3-a-day schedule, I had been pumping 6 times a day, roughly every 4 hours.  Count 45 minutes for prep and pumping and another 15 for clean up, and it honestly felt like all I did was pump.  I would just get started on something else when I would have to go back and pump.  Likewise, Phil would get started on a project and suddenly discover that he had to run home and medicate Lil' Bit.  5 minutes of driving, 10 minutes of prep, 5 minutes of feeding meds (if lucky), 20 minutes of waiting to see if they took, 5 minutes driving back and *poof* he was losing multiple hours each day.  In the midst of this discussion, we both became more cognizant of the toll things were taking on us.  He had a better understanding of how difficult pumping had been, and I had a better understanding of how coming home to give meds was affecting him.  And we both became aware that it was the disruption to our routine that was causing so much stress.  As we talked about what it would mean to have Lil' Bit back in daycare so that much of our routine could return, we began to see a light at the end of the tunnel.  Routine, it turns out, is important for more than getting babies to sleep.

Ultimately, it was a good and important moment in the conversation because we were both reminded that stress, frustration, and lack of sleep are mutual enemies, against which we must present a united front.  By recognizing that we are both "done," we are much better out being less snippy and not taking our stress out on the other person.  Don't get me wrong, we're far from perfect, but I think we're doing a pretty good job.

In any event, here we are.  No decisions on a second child and still somewhat stressed by the first.  But things are improving, and time is passing, and we're getting settled into a routine.  Which begs the question--do we really want to wreck our new routine when we're just figuring it out?  Stay tuned, dear readers, to find out if we're crazy enough to attempt it.

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.