We're In For a Long and Wild Ride or, What I Know So Far

We've pretty well established at this point that I like to research and plan.  These are the things that calm me when I'm freaked out.  Plus, I'd rather learn this stuff while I have the time and energy to process it, rather than when I am recovering physically and emotionally from birth, let alone the wringer of open-heart surgery on my child.  So, it should come as no surprise that I've spent a lot of time this last week researching Jellybean's condition.  Obviously, any of the information I've found is subject to change based on Jellybean's specific situation, official diagnosis, and the protocols of CHM, but it's helpful to have some sense of the breadth of the challenge we're facing.  That said, here's what I've found so far.

The CDC reports that, each year, only 960 babies in the US are born with hypoplastic left heart syndrome (HLHS), or 1 in 4,344.  According to Boston Children's Hospital, HLHS "is one of the most challenging congenital heart defects to care for."  Everything I have found certainly supports this statement.

The first surgery--the one done at 7-10 days of life--lasts approximately 6 hours.  After it's completed, they wait several days before closing the chest to prevent the compression of the heart by the rib cage until the heart has had a chance to adjust to the new circulation.  After surgery, kids remain in the hospital about a month.  The good news is that the success rate of this surgery is high, with 90% or more of the kids making it home.  However, of those that make it home, another 10-15% are lost before the second surgery.

The care at home between the two surgeries looks pretty intense.  In addition to the weekly check-ups with the cardiologist, and likely lots of meds, Jellybean will probably be on oxygen and an apnea monitor.  Weight must be checked daily to make sure he's eating enough, and a pulse-ox monitor has to be used twice a day to check his oxygen saturation.  He may be on a feeding tube, depending on whether he's strong enough to feed himself; the low oxygenination caused by the mixed blood flowing through the body can make children suffering from HLHS too tired to feed well, so they often need supplements to make sure they get more calories per swallow.  Sometimes, because they had an intubation tube in so early, they associate having something in their mouth with that sensation, resulting in difficulty taking a bottle or breastfeeding.

Although I've found descriptions of the second and third surgeries, I haven't found much on recovery or mortality stats or care afterwards.  But, quite honestly, that's about a year away, and based on what I've already learned, I will have so much on my plate between now and then, I'm not sure I need to know more just yet.  The goal, for now, is to be ready, rested, and as prepared as possible for whenever Jellybean arrives, because once that happens, the roller coaster is gonna take a sudden, turn down a high, steep curve that will take my breath away, and I don't want to fall out.

Got Stress?

One of the things a fertility clinic will tell you when you are trying to get (and stay) pregnant is to avoid stress.  This is certainly a lovely theory, but the whole infertility gig does not lend itself to being stress-free.  Add in a toddler having surgery, a non-private room at the hospital, dental issues, and dehydration-induced bleeding and--VOILA!--you have my ridiculously stressful life.

So, let's go back to Sunday.  I had taken Lil' Bit to church as usual.  Somehow, during coffee hour, I broke a crown.  I called my dentist at home (one of the benefits of small town living!), and got an appointment to see him the next day to put on a temporary one.  Once I got slightly calmed down from that snafu, we worked on getting our ducks in a row to head for Detroit to take Lil' Bit in for her surgery.  My zen had not even returned when I discovered I was bleeding again.  After getting Lil' Bit to bed, I drank lots of water and put my feet up.  My mantra was--I can't control this; there is a plan to which I am not privy; but if I get a say, please stick around.  And, by morning, things seemed a little better.  Still, I called the fertility center to seek reassurance.  They told me there was nothing that could be done at this point and that they weren't worried, but I could call if I needed further reassurance.  I did my best to feel reassured by this, pulled up my big-girl pants, and headed out to Detroit.

Surgery on Tuesday morning went well and everything was copacetic.  Then, we discovered there were no rooms available for Lil' Bit, so we waited in the recovery area for several hours for a room to come open.  We were relieved when we got word she had been assigned to one, but it was another hour or two before we were sent up because they had to clean it.  We discovered we were sharing the room with another two-year-old who had just had the same surgery.  What we soon discovered, however, was that this child could scream and did not want to see any nurse, doctor, or anything of the sort and mom had no intention of holding said child to provide comfort--she just kept talking on her phone.  I mean, I know screaming.  I was a willful child who would scream to the high-heavens, but I had nothing on this toddler.  In fact, the non-stop, high-pitched screams and other activities by the child were such that the nursing staff finally came and "helped" mom take the child to another location because Lil' Bit (and likely the whole freakin' floor) was clearly being affected.  The charge nurse actually came in and apologized and, when I said the standard, "It's okay," her response was, "No, it's not."

Things got marginally better upon the return, although we heard overheard conversations that would make Teen Mom plot lines seem like Leave It To Beaver episodes (Phil tells me that the conversations overnight were even more "entertaining").  Needless to say, I forgot to take care of myself as I was working hard to console my child and *bam* significant bleeding and cramping.  I was certain I was miscarrying, wigged out, and started crying, all of which freaked out Lil' Bit even more.  Seeing her response, I worked hard to push down all that anxiety and sadness and pull myself together and then worked to console her and get her calm.  We finally got me back to the hotel where I drank tons of water and laid down with my feet up.  Again, by morning, things seemed okay.

After a rough morning at the hospital, Lil' Bit finally got discharged.  On the drive home, my temporary crown popped off.  The only good thing about this was that I was scheduled to get my new permanent one the next day.  On the downside, we were back up to 14 meds per day with Lil' Bit, most of which could not be combined and seven of which were liquid doses (her least favorite).  Needless to say, every day involves tons of screaming as we try and "do what's best for her," while I watch her be a little more traumatized each time.  Her regular med-taking has suffered to the point that, even once she's better, we have a long haul to get her back to where we were before all this.

Thursday arrived and I got my new crown.  It was unpleasant, but at least I got a little time away from the house such as it was.  By last night, things seems to be on the upswing.  I was feeling pretty good about the rest of Lil' Bit's recovery.  Thinking the day might end on a good note, I was disheartened, but no longer surprised, to discover I was bleeding *again*.  Worse, Lil' Bit didn't want to sleep alone (who could blame her), so I spent the night on the floor of her room.  Although I didn't get much sleep, I did manage to drink more water and get my feet up and got things stopped again.

That brings us to this morning.  After an okay morning, things went downhill fast.  I swear, it was like she was worse than right after her surgery. Now, I remember with my recent surgical recovery feeling like I was backsliding.  I don't know why I assumed that wouldn't happen with her, but I did.  Seeing her misery today hit me really hard.  And, even though Phil and his parents have worked very hard to try and provide me some downtime, my little girl just wants her mommy and my heart just can't say no.  However, I have managed to not be too far from water and have stayed well-hydrated, thus preventing the now diagnosed dehydration-induced uterine contractions/bleeding.

I know my previous goal was just to make it to the ultrasound this Thursday, but now, I am living hour by hour, minute by minute, just trying to make Lil' Bit as comfortable as possible and to get through this emotionally and physically intact.  There is no freakin' way I can stay stress free through all this.  Life is what it is.  But, I just keep telling myself:  I can't control this; there is a plan to which I am not privy; but if I get a say, please stick around.  All I can do now is wait.  And drink lots of water.

Now What?

Eleven days past surgery and, although things have improved, I'm not nearly where I expected to be in terms of recovery.  Some days feel like two steps forward and one step back, but more recently it feels like one step forward and two steps back.  All of which leads to a conundrum--do I start shots on Friday or push things out?  Do I think I will feel recovered enough to put my body through transfer in a month?  I just wish that my doctor's appointment was sooner than Thursday, so I could ask the surgeon how he would evaluate my progress and what he thought.  Still, I'm leaning toward yes.  The truth is, things will always pop up and get in the way.  There is no perfect time to do anything and, goodness knows, if we're successful, we don't really get to plan anything at that point.  So, might as well just roll with the punches.

On top of everything else, we recently learned that Lil' Bit has mild sleep apnea.  It's possible that this has been exacerbating her pulmonary hypertension and that getting it taken care of would help her arterial pressures.  It should also allow her to get more/better rest which makes everyone happier.  It's easily taken care of with the removal of her tonsils and adenoids, but nothing is ever really easy with her.  She has to have special anesthesia because of her condition, so we'll have to have the surgery done where she had her heart surgery.  Further, she probably won't be able to do outpatient surgery because, what with her having to take meds six times a day, we have to make sure she is adequately swallowing and taking her meds before she can be released.  We're hoping it can wait until April so it's after both Easter and RSV season, but we have to wait and see what her cardiologist recommends.  So, lots of fun ahead.

Assuming everything goes as currently planned, 4 days and counting...

Things Can Only Get Better

***Warning--the following includes what some may consider over-sharing***

Hello, 2013.  We are not off to a great start, but that is not entirely unexpected.  I previously mentioned that I was starting the year with major outpatient surgery.  More specifically, I had major hemorrhoid surgery.  Thus, the very slow, very painful, recovery I am currently experiencing is a literal pain in the ass.  I badly needed this surgery.  When I went to the doctor for my surgical evaluation after a visit to the urgent care for two very thrombosed hemorrhoids, he indicated that although their policy is to avoid a hemorrhoidectomy at all costs, that was not an option for me.  After the surgery was done, the doctor reiterated to Phil that the surgery had definitely been necessary.  So here I sit, er lay, trying to recover.  I am having to be patient and sit (lay) still and it's driving me bonkers!  Phil is doing an amazing job taking care of Lil' Bit, but I feel like I'm falling down on the job.  That's right.  I am feeling guilty because I am recovering from surgery!  Cognitively, I know that's twisted, but it doesn't stop me from having those feelings.  Although I haven't figured out how to stop them, I do have a better understanding of how parents forget self-care.  Thus, one of the things I am trying to do while I recover is make sure I am taking care of myself.  After all, had I taken better care of myself earlier in life, I likely would not have needed the surgery.  So, I am trying to use the painful recovery as an object lesson in making sure I do a better job at self-care.  Here's hoping!

Also approaching is the date I start my shots for our next FET.  Honestly, this date will not come soon enough.  I have at least eight friends and relatives who are all pregnant.  Add in all the celebrities--Duchess Kate, Kim Kardashian, Jessica Simpson--and I am an emotional puddle.  On the plus side, I am no longer angry at those who are pregnant.  I am joyful that they are happy and, at least as far as I know, were easily successful in their endeavor.  Still, I am tired of being happy for everyone else.  My joy for them seems to only compound my anger and frustration at being stuck in a holding pattern.  When is it my turn?  Why am I forced to pay thousands of dollars to do what reality stars on MTV do by accident?  While friends and bloggers I follow are all closing down their baby-making factories and having surgery to prevent any more kids, I am angrily fighting against time to get one more in before the clock stops.

So, what has my angry, pitying self done during this recovery period (when not working from home, that is)?  Tortured myself with episodes of TLC's A Baby Story, that's what.  So, let's recap.  I'm in pain and feeling guilty for taking the time necessary to recover from surgery while feeling totally inadequate because my infertility is keeping me from that which I desperately want and my only solution keeps failing.  So, come on January 18.  Get here so I can get started; so I can hope and dream again; so I can feel like I'm doing something productive--something, hopefully, REproductive.  Save me from myself.  Let's make this a year to remember--hopefully for the better.


9 days and counting...

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.