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.