My Miracle

I talk about my miracle children all the time.  They are miracles because we were able to conceive them with IVF, because they both survived in utero even with crazy heart conditions, and because they are both thriving and don't look like heart patients.   Every minute of every day is a miracle with them.  But, when I call Jellybean my miracle child, I am referring not just to those things, but to an amazing moment of grace--when I asked for a very specific miracle and got it.

Last November, when we were at CHM waiting for Jellybean's surgery to start, we were talking with our support people--Phil's mother and one of our very dear friends.  As we typed blog posts and Facebook updates, we talked about the frustrating OB I had had who kept insisting there was nothing wrong with Jellybean's heart and kept inferring that once he was born, we would see there was nothing wrong.  Obviously, that was not the case.  We also talked about the well-meaning people who had said similar things, not from the perspective of medicine, but that God might give us a miracle and heal Jellybean's heart.  And as we sat at the table waiting--I will never forget--I said to them:  My miracle would be if there is enough of his own tissue to reach between the left and right branch pulmonary arteries without having to use anything artifical or homograft.  If I could have a miracle, that would be it.

Fast-forward to our meeting with the surgeon hours later, once the procedure was over.  He said that when he went in to detach the LBPA from the truncus, he discovered that there was an extra pouch of tissue on the side of the truncus and that he was able to take a long flap of that to make a "tounge" that reached all the way across to the RBPA, which he then covered with Patrick's own pericardial tissue (the sack around the heart).  The benefit of this was twofold.  First, because it was all his own tissue, there was no chance of rejection.  Second, because it wasn't artificial, but live, growing tissue, there was a good chance that it would grow with him and, thus, wouldn't need to be perpetually replaced the way the artifical parts that will be used for his complete repair (whether truncus or HLHS) will need to be replaced.

There it was.  My miracle.  Not exactly as I had imagined--I was picturing a really long LBPA that would reach across--but it was still what I had asked for.  I was amazed.  Blown away.  For a brief moment, I had the thought, "Maybe my prayer was too small.  Should I have asked for more?"  "No," I answered myself.  Sometimes we get miracles because we what we ask for is the right size.  After all, there is no way the medical community, or the world at large, is ready for healing of that magnitude.  It would result in forever making Jellybean the subject of research.  No, what I asked for and received was a small way for Jellybean's life, and mine to some extent, to be easier.  A mini-miracle, if you will.

From the moment the doctor told us about the wonderful surprise he encountered that allowed him to do the PA fix without any artifical material, I knew Jellybean was being watched over and protected.  I sometimes imagine God sitting at a bench, like a judge, looking down on us, saying, "Asked and answered, counselor."  It makes me smile.  Phil and I have spoken about the fact that maybe all of the people who passed away just before and just after Jellybean's birth and surgery went when they did to help him from the other side.  I can believe that; that my grandmothers helped make my miracle happen; that Phil's mentor helped smooth Jellybean's recovery and is helping with his growth and development.  I can feel the truth of it deep down.  Loss and joy intertwined, creating my miracle.  Thanks be to God.

One of a Kind

Jellybean arrived on October 29 around 11:00 p.m.  He was 8 lbs even and 21 inches.  He had a few issues and was transferred to Children's Hospital that night.  After performing a four-hour echo on him and all of the cardiologists conferring with each other, they found that they were still confused by what they saw.  They sent him for a cardiac catheterization, which provided a few more answers, but they still needed more information.  After a cardiac MRI, they had exhausted all methods of looking at his heart structure and finally had enough to make a diagnosis and surgical plan.

What follows is going to be fairly technical and my best description/regurgitation of what we have been told.  The short version boils down to this:  Jellybean's heart structure is one of a kind.  The reason the doctors had such a hard time coming up with a diagnosis--either from the fetal echo or the recent testing--is because he doesn't have just one issue.  Instead, he has roughly three separate issues, none of them standard, which then combined to create a very complex and problematic heart.  His surgery today is not a complete fix and, until medicine progresses to a point that stents can grow, he will need additional open-heart surgeries throughout his entire life.  This information has been overwhelming, to say the least.  What normal approximation of life we have created to cope with Lil' Bit's medical issues will likely disappear as we learn to adjust to Jellybean's uncertain future.  And yet, we feel blessed to have Jellybean, for however long we get to have him.  We will do our best to enjoy every minute we have with him.  Other than that, all we can do is make sure we get Jellybean the best care we can and the rest is out of our hands.  A very hard lesson for this control freak, to be sure, but I'm working on it.

Without further delay, here's as much technical information as we have:

After our last fetal echo, the diagnosis was likely hypoplastic left heart but possible truncus arteriosus.  The official diagnosis is:  truncus arteriosus with discontinuous pulmonary arteries and mild to moderate hypooplasia of the left ventricle.  In other words, some of both, plus more.

Truncus arteriosus occurs when the truncal vessel fails to split into both the aorta and pulmonary artery during fetal development.  Truncus always appears with a VSD which allows the blood to mix between the two ventricles.  As a result, there is a single great vessel and both the body and the lungs receive mixed (i.e. both oxygenated and unoxygenated) blood.  Because the vessel was supposed to become two separate structures, the valve is usually problematic being stiff (stenosis), leaky (insufficient), or both.  Jellybean's valve is somewhat leaky, but generally good.  It will likely be the least of his issues.

Usually, this condition is repaired by closing the VSD in such a way as to isolate the truncus into the left ventricle and a new pulmonary artery is created and attached to the right ventricle.  The first shunt usually lasts 1-3 years before it needs to be replaced because the body has outgrown it.  Shunts are then replaced through open-heart surgery roughly 3-5 years later, again 5-10 years after that, and by adulthood, roughly every 10-15 years when they wear out.  This is called a "complete" repair.  

This is not an option for Jellybean, however, because his left ventricle is clinically smaller.  Thus, although he does not have a classic hypoplastic left heart, there is some question whether it is capable of pumping sufficiently well to get the oxygenated blood out to the body.  Instead, they will do a partial repair, which involves placing a shunt (a 4mm diameter goretex tube) between the pulmonary arteries and the subclavian or carteroid artery.  By doing only a partial repair, we give Jellybean time to grow to see if the left ventricle continues to increase in size to the point where it looks capable of functioning in a 2-ventricle system.  If so, subsequent surgery would complete the truncus repair.  If not, subsequent surgery would convert his heart into a univentricular system the way they would with a classic hypoplastic left heart condition.

The final complicating factor is the discontinuous pulmonary arteries.  Usually, truncus presents in a variety of types which are classified by the placement of where the pulmonary arteries attach to the truncus vessel.  Jellybean's left pulmonary artery comes off the truncus on one side, but his right pulmonary artery is connected to a ductus arteriosus--a fetal structure that usually disappears after birth.  This type of truncus is incredibly rare and, except for a single case from the 1970s, generally involves the left pulmonary artery coming off a ductus, not the right.  

Jellybean has been on medication, called prostoglandins, to keep this fetal structue intact while they figure out how to fix things.  However, once surgery is over, the medication will stop and the ductus will disappear.  The surgeon will remove the left pulmonary artery from the truncus and then utilize a patch--made of either homograft or pericardial tissue--to connect it to the right pulmonary artery.  This process is called unifocalization.  Unfortunately, because the right pulmonary artery comes off the ductus that will disappear, the distance between the two is fairly significant.  The hope is that the patch will allow the pulmonary arteries to continue to grow and feed the lungs, but the patch, like the stent, will not grow.  So, Jellybean will have a lifetime of heart catheterizations to fix any narrowing of the patch and open-heart surgeries to replace the patch as he grows or it wears out.

Much of the surgeon's work will be done "on the fly" because he has to wait and see what everything looks like when he gets in there.  For eample, he doesn't know how much pulmonary tissue there is on the right side after the end of the ductus and he doesn't know how much pulmonary tissue there is from the left side and how far it will stretch toward the right side.

Recovery from surgery will be roughly 3 weeks on the good side.  Approximately 10 days to recover from surgery and 10 days to learn how to feed (he hasn't ever eaten because, the way his blood flow works, his lower body doesn't get enough blood and feeding him would tax the intestines and kidneys which may not be getting adequate blood supply, thereby causing lots of problems).  He will then be followed closely, likely with weekly doctor visits, to check the status of both the shunt and the patch.  He may need oxygen when he gets home, but we won't know until close to the end of his recovery.  At around 4-6 months, he'll need a heart cath to see how he's doing.  If his growth (weight), echos showing pulmonary development, and blood saturations (sats) are all good, they will likely put off his next surgery until he is closer to one year.  If any or all of them are less than they would like, the second surgery will be closer to six months.  And, as noted above, what that surgery will entail will depend entirely on how the left ventricle has been functioning and whether it is sufficient to pump blood to the body.

If it turns out that the left ventricle cannot function in that capacity, but pulmonary growth has not been sufficient, it is possible that Jellybean will need a heart & lung transplant.  His anatomy is such that you could not place a healthy heart into it and have the system function.  Thus, only a full transplant of both would work.  Although this is certainly on the continuum of things that could happen, at this point, the doctors are feeling good about the chance of fixing things.

Things in Jellybean's favor:  his size.  Although he's lost some weight (just under .5 lbs as of this morning), he's still much larger than most kids who undergo this type of surgery.  We grew him big and it is to his benefit.  He also doesn't have any other health issues other than the heart, so they are only dealing with the heart stuff.  This gives him an excellent prognosis.

As I write this, Jellybean is in surgery.  It's going to be a long day followed by a long recovery, but we are hopeful.  The surgeon gave us a roughly 10% mortality risk with the surgery, but admitted that it was really just a guess because there simply aren't any cases of this condition.  Jellybean is unique, his required repair is unique, and there simply is no case to which he can be compared to guess at survival rates.  All we can do is wait and see.

One final note.  Many people have asked whether Jellybean's condition is similar to what Lil' Bit has.  The answer is sort of.  Jellybean's right pulmonary artery being attached to a ductus arteriosus is likely the same things Lil' Bit had with her left pulmonary artery.  However, because we didn't know she had the condition, she didn't get prostoglandins, and the dutus disappeared and the left pulmonary artery shriveled and was gone.  The surgeon indicated that these similarities are not likely coincidental and, therefore, are likely genetic.  As such, we are certain that we are done having children.  We have our hands more than full with the two we have.

Just Another Manic Monday

So what do we do?
Nothing. Strangely enough, it all turns out well.
How?
I don't know. It's a mystery.
-Shakespeare In Love

Today was our third fetal echocardiogram and, although we still don't have a firm diagnosis, in terms of what needs to happen, the official diagnosis doesn't much matter at this point.  What we know:  Jellybean's left ventricle is still significantly smaller than the right.  In fact, it is no longer growing like they had hoped, as it no longer reaches the apex.  In addition, the mitral valve which serves the left ventricle is also small.  This means that Jellybean has hypoplastic left heart syndrome.  In addition, he only has one great artery.  There should be 2--the aorta and the pulmonary artery.  He appears to have an aorta, given its shape, but it looks like it's attached to the right ventricle, which is where a pulmonary artery would be.  Thus, they aren't quite certain which one he has.  It could also still be truncus arteriosus, but that diagnosis requires certain features they aren't certain he has.

Ultimately, the result is the same for either diagnosis.  He needs a series of three surgeries, the first of which occurs at 7 to 10 days.  The second surgery generally occurs at 6-9 months, although it can be done as early as 3 months if necessary, or as late as 12 months if everything is going well.  The third surgery is done anywhere from 18 months to 3 years depending on how the child is doing.

Mortality is highest between the first and second surgery.  75 percent of children who get through all three surgeries survive.  15 percent of those who survive go on to have serious complications.  They have only been doing this for roughly 30 years, so they have no idea about long-term survival.  They can say that they have lots of patients in their 30s, which is good news.  The cardiologist indicated that she has some patients who have had these procedures done who are competing in college-level athletics, so there can be some degree of normalcy.  There's no way to say up front which category Jellybean will fall into.  We'll just have to wait and see.

So, what does all of this mean for us?  Well, Jellybean will need to have an ultrasound and be placed on prostaglandins and an IV shortly after birth, so they want me to deliver in Detroit.  We are in the process of scheduling an appointment with an OB recommended by the cardiologist.  However, the more problematic issue is that they want me to have a spontaneous, vaginal delivery as close to 40 weeks as possible.  Because the surgery will require him to be on by-pass, they need his lungs in the best condition they can be, which means letting him cook as long as possible.  In addition, because vaginal delivery helps squeeze fluid from the lungs better, they don't want a c-section.  At the same time, they don't want him in there too long, so induction may be necessary if we go too far past 40 weeks.  Ideally, I would be somewhere closer than 2 hours away from Detroit when I went into labor.  As of yet, we haven't quite figured out how to make this happen.

Assuming delivery goes as needed, he will be in the NICU at the women's hospital for roughly 4 days before being transferred to the NICU at the children's hospital where they will then ultimately do surgery #1.  We don't yet know how long to expect him to be in the hospital post-surgery, but upon discharge, we can expect to go to the doctor weekly until surgery #2.  We are hoping we will be able to see the local cardiologist for these visits and not have weekly trips to Detroit, but we don't yet know about this.  We also don't know if/when Jellybean is allowed to go to daycare, which makes my ability to return to work a huge issue.

We are continuing down what appears to be an extremely long and stressful road, with no real end in sight.  We certainly have our work cut out for us figuring out the logistics of how to make all of this work in the best way possible.  Sadly, this diagnosis means we will not be going anywhere for Thanksgiving, Christmas, or New Year's and it means we can't have the celebration come to us because too many visitors would place Jellybean at increased risk of infection.  Given the likely timing of the second surgery, we also likely won't be able to attend family reunions and our favorite gaming convention next summer.

When we moved forward with having a second child, it never occurred to me that he might require more medical care than Lil' Bit.  But, it is what it is.  All we can do now is research, plan, and prepare as best we are able and know that things will work out, even if it seems like a huge mystery at this point.

More Questions, Some Answers, Lots of Heartache

Today we went to Detroit for Jellybean's second fetal echocardiogram.  Three things tipped us off that it was going to be a rough visit.  First, the doctor came in after the ultrasound tech to take more pictures, and she took a while.  Second, as she finished up, she said, "I have lots of questions."  Third, she entered the consult room carrying a brochure titled "If Your Child Has a Congenital Heart Defect."  She started the consultation by indicating, again, that she had more questions than answers, in part because of things she couldn't see, and she apologized because she couldn't give us a firm answer as to what "official condition" Jellybean has.  She did indicate that she believes Jellybean has "a significant heart issue," and provided more detail and a somewhat smaller range of things to consider.

So, what we know:

1)  Jellybean has a large VSD.  Even if what they discover in the future is all fine, he will need surgery at some point.  So, there is no non-surgical option in all of this, just a question of what, when, and how many, really.
2)  Jellybean has a large right ventricle and a small, narrow left ventricle.  The ventricle "goes all the way down" which means that it is likely usable once the VSD is repaired and also rules out hypoplastic left heart syndrome.  (Note--my last post may have indicated the right ventricle was smaller than the left.  That was a mis-remembering on our part.  It was the left)
3)  There were three structures she could not see:  the ductal arch, the branch pulmonary artery, and the second outflow.  At this point, she can't say with certainty whether she simply cannot see them, or if any of them don't exist.  So, we're headed back somewhere around 30-31 weeks gestation in the hopes that a bigger baby will provide a better view.  However, as with all things ultrasound, baby's position and cooperation are key and it's possible they still won't know anything for certain.  She said that if she still couldn't see something at that point, they would likely err on the side of assuming it wasn't present.
4)  There are two main diagnoses we are looking at depending on what, if anything, is missing:  Truncus Arteriosus (rare)--where there is only 1 great vessel; and Double Outlet Right Ventricle (very rare)--where two great arteries both come off the right ventricle.  Both of these conditions would require surgery, but only one (I think the first, but I'm not certain) would require Jellybean to be in the NICU and have surgery before ever going home.  Thus, one diagnosis would require a Detroit OB and delivery and the other would likely permit local delivery and a later trip to Detroit for surgery.  Either of these conditions could be fixed with a single surgery, or could take multiple surgeries and still require a transplant down the road.  It will all be dependent on what the specific facts are for Jellybean.  If it turns out nothing is missing, see point 1.

On the plus side, the cardiologist was super nice.  She indicated that all of the other pediatric cardiologists were currently looking at the images of Jellybean so that whichever one of them saw us again would be familiar with him.  She also thought we were doing a very nice job keeping it together and thanked us for not screaming and yelling at her.  We talked about the fact that my OB's office kept talking about doing genetic testing and amniocentesis and how, because Jellybean was an IVF baby, we thought any risk of miscarriage was too big a risk.  She agreed and asked why they were pushing.  I indicated that the OB's office told me that the surgeons would want a full genetic test done before surgery.  She admitted that they would, but said, "We'll take a few cells after he's born.  You protect that baby.  If you're not going to do anything differently because of the results, there's no reason to have it done."  That was the point at which we both got a little weepy.  She also told us we asked really good questions, so that made us feel better.

We are both still processing all of this information.  Some moments are overwhelming.  Other moments I feel fine, which makes me think I'm just in denial.  But some of it still feels like familiar territory, and I know that coping with Lil' Bit's heart issues really has paved the way for me to handle this better than I would have otherwise.  Still, it's frustrating that the only thing we know for sure is that Jellybean has some type of heart issue that, at some point or another, will need surgery.  Oh, and we know we'll get at least two more trips to Detroit.  I'm just glad we opted to take a peek in the first place.

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.

So Far, So Good

I went for my best test Monday with much trepidation.  Fortunately, my results arrived a mere one hour after the blood was taken, which was a relief because waiting until 4:00 in the afternoon is always torture.  My HCG level was 90.  The nurse reported that this was a "strong" number.  Yay!  Honestly, if you had asked me what kind of number I needed to feel relieved, I couldn't have told you.  But, apparently, 90 fell within that zone.  I was cautiously optimistic once again.  Still, even a "strong" initial number wasn't going to soothe my frayed nerves unless it doubled by this morning.

In the world of infertility, the two days between beta tests feels longer than the two-week wait.  So, we do the only thing we can--try and find solace and comfort on the internet.  In that vein, yesterday evening, I spent some time Googling about miscarriages and betas and all types of things.  I learned that my numbers don't rule anything out--we could have one, two, or three babies in there; I learned that my chance of another miscarriage was not a large as I believed; and I learned (again) that there is a limit to the utility of internet.  Having exhausted what it had to offer, I hung up my searching shoes and went to bed.  Nothing to do but wait.

Woke up this morning to roughly 6 inches of snow.  Blerg.  I diligently headed out in the crappy weather to attempt to get my blood drawn at roughly the same time it was taken on Monday.  Since we wanted actual doubling--nothing less would sooth my soul since Oliver had only increased 80%--the magic number we needed this morning was 180.  I said a little prayer on my way in, got my blood drawn, and then went about my day.  Shockingly, I promptly forgot that I was waiting on a phone call until the phone rang.  I immediately had a giant lump in my throat.  My results were in--quite early again, thank goodness.  The nurse chatted with me for a bit and then we got down to business.  And the answer was.....194!!!!  We had slightly more than doubled!  Woo freaking Hoo!  I did a dance of joy and immediately texted Phil.

At this point, I am feeling very good.  I know that things can still go wonky, but all indicators are that we're going to be fine.  Sometime between now and the ultrasound appointment in two weeks I might get a little nervous.  Indeed, until we see a/those tiny blinking heart(s) on the monitor, I'm not sure anything will really relax me.  But, I am definitely feeling good.  The news I got is the best I could get at this point, so I will take comfort in that.  Besides, every step we make it this time is one step further than the last FET where we didn't get anything at all, and that's something worth celebrating all by itself.

So.  In sum.  "Strong" initial HCG levels that are doubling like they are supposed to.  Whew!  Now I can quit worrying about that and get geared up for Lil' Bit's surgery next week!  Ah, the life of a parent.  Never a dull moment!  And I wouldn't change that for anything.

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...

Beginnings and Endings

Dear Readers,

This has been a rough year.  It began with my one-year-old healing from open heart surgery and us learning how to function giving her meds six times a day.  It continued with a miscarriage, a second failed FET, two trips to the ER while out of state, and a stomach bug that made Lil' Bit quit taking her heart meds for several days.  Needless to say, I am ready for this year to be over.  In fact, I don't remember ever being so ready for a year to end.

On the plus side, this year saw Lil' Bit have her first birthday party not in a hospital, and we finally got her off the sinus infection/antibiotic treadmill.  I also got to see my brother and his family for the first time in a year-and-a-half, and Lil' Bit got to play with her cousin.

Sadly, the year ahead starts with major outpatient surgery for me.  Not exactly something to make me want to run into the new year with open arms.  But--January is also the start of our next FET.  Shots begin again on the 18th!  I'm excited and hopeful, and yet, some piece of me feels it's folly.  After all, the definition of insanity is doing the same thing over and over and expecting different results.  Nevertheless, we try again because, in truth, it's not the same thing every time.  Besides, my heart simply cannot take anymore pregnancy announcements.  For cripes sake Kim Kardashian and Kanye West are having a kid!  I want it to be my turn.  Need it to be my turn.  I want to crawl out of this emotional black hole triumphant and expectant.  Hopefully, 2013 is my year.

But, regardless of whether I end up with anther child, it will be my last year of fertility treatments.  We only have enough embryos for two tries, and I'm too old (and, quite honestly, unwilling) to do another fresh cycle.  So, if the February FET isn't successful, my plan is to turn around and do the last one and be done.  Then, I can close the chapter on this part of my life, get my surgery, and get on with raising Lil' Bit and whomever else shows up.

So, regardless of outcome, 2013 is going to be a big year for me.  I'm hopeful for a great year, but I will settle for one that's better than 2012.  For now, I will savor the last day of this year and all the hopes for the year ahead.  And, if you want, you can join me in the new year on my next trip down the rabbit hole.  18 days and counting!

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.

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.

What's In a Costume

When I was little, I loved to dress up. I went through more outfits in a day than most people went through in a week. They were my kots-tooms. And, who am I kidding, I still love to dress up. I loved having formal dances in law school to attend. Or dressing up for Christmas Eve. Even dressing up for an interview was fun. I would put on my power suit and feel invincible. I loved that special clothes could make me feel like a different person. So, it should really come as no surprise that one of my favorite things about having a daughter is getting to dress her up. This love of dress-up makes it all the more surprising that I forgot the one holiday of the year that dressing up is practically mandatory. As some of you know, this Thursday we will meet with Lil' Bit's heart surgeon to talk about her surgery and get it scheduled. I was talking with a friend of mine about when we were hoping to schedule it, and I said that I was hoping for some time in early November. The response was something like, "That's perfect, because then you get Halloween." Halloween! How on earth had I forgotten Halloween?! Getting to dress my baby up and haul her around to hear oohs and aaahs and get free candy. Somehow, in all of the scheduling and trying hard not to freak out about her surgery, I had forgotten that there were fun moments on the horizon. Still, I didn't want to buy her a costume. Afterall, we still don't know when the surgery will be. She could be in the hospital for Halloween. So, that was where I had left things until last Friday. During our weekly Meijer trip last Friday, I noticed that the Halloween costumes were out. There, sitting in the middle of the isle was the perfect costume for my daughter--a ladybug! We call ladybugs "doodlebugs" and we call her our doodlebug, so it seemed exactly right. We considered a different costume, only to discover it didn't come in her size. The ladybug did! Still, in the back of my mind, I wasn't sure I wanted to purchase a costume yet. My mind was full of what-ifs. Suddenly, a sense a calm came over me and I knew I had to buy it. Buying it was a leap of faith. Faith that she will get to celebrate Halloween regardless of whether she is in the hospital. Faith that she will be fine. Faith that life will go on post-surgery. It was and is more than a costume. It's a reminder of normal life. A reminder to treat Lil' Bit as though there is nothing wrong. A reminder to plan for the future. A timely reminder to be sure, as Lil' Bit's first birthday is swiftly approaching and I'll need to get cracking on planning in case the first two weeks of November are used up caring for her post-surgery. What a wild first year it has been, and continues to be. There's no way to know what will happen in the next two months and no way to be fully prepared for everything even if I could know. All I can do is the same thing I've been doing the last 10 months--spend every day winging it, trying not to make the same mistakes more than twice, and remembering to enjoy the ride. Oh, and living vicariouly through Lil' Bit's wardrobe. ;). Come on Halloween!

A Broken Heart

We encounter risk everyday.  Every single choice we make or action we take involves risk.  There's risk of injury, emotional pain, embarrassment, and failure, to name a few.  Still, we get up each day and walk, eat, drive, work, and put ourselves out there.  We take and accept these risks for ourselves often without conscious thought.  Other risks we only take after careful thought.  The risk inherent in medical care is one such risk.  Generally, however, so long as you trust your healthcare provider, this level of risk is generally acceptable.  So it was with some surprise that I found that the same is not true when it comes to my child.

Lil' Bit's cardiologist recommended that she have a heart catheterization to measure the pressures in her heart to determine if her VSD needed to be closed.  He also indicated that during the test they could look to see whether she had any segment of left pulmonary artery that they could work with to try and attach a stent, get blood flow to the left lung, and see if it would grow.  Now, if my doctor told me I needed a heart cath, I would, without reservation, recognize that it is a common procedure and that the risks were outweighed by the benefits and have the test done.  Having to agree that doctors could perform the test on my daughter was not as simple.  It had the same risks and benefits--indeed, perhaps greater benefits in her case given her situation--and yet the risks seemed too high.  As a parent, there are times that any risk seems too high.  Fortunately, I recognized the irrationality and emotional basis of this position and overcame my reluctance to have her get the procedure.

And so it was that earlier this week, we took Lil' Bit to the "big city" to have a heart cath done.  It was scary, but we managed to get through it.  She did great and came out of the test none the worse for wear.  However, the results weren't what we had hoped.  The pressures in her heart need to be taken care of, so they want to schedule her for open heart surgery sometime before Thanksgiving.  In addition, there is nothing left of the left pulmonary artery to work with. Her right lung is doing all of the oxygenation at this point--in fact it is larger than normal, where the left one is smaller than normal.  The left lung isn't doing anything, which means that sometime down the road she will likely have to have it removed.  More surgery.  My heart breaks each time I have to think about Lil' Bit having to go under the knife at such a young age.  I know that she is unlikely to remember any of this, which also means that she likely has no stress or anxiety leading up to the procedures (unlike her parents).  It doesn't make things any easier.

It reminds me of my own fragility and makes me wonder whether I can put myself out there and risk heartbreak with another child.  My only consolation is that we elected to wait to go through another round of IVF until we learned what Lil' Bit's prognosis was.  Don't get me wrong, she has a great prognosis.  They feel confident in the surgery and, given her body's shown ability to adapt and compensate, see no long term issues related to her missing left pulmonary artery except the chance that she won't have as much "reserve" as those two-lunged folks.  Even with the good prognosis, however, I am fairly certain that I would not be handling all of this information nearly as well if I were hyped up on fertility or pregnancy hormones.

Ultimately, this week boils down to two simple facts.  The surgeon should be able to fix Lil' Bit's broken heart, but mine will break in the process.  Such is the nature and sacrifice of parenthood, I suppose, but I was wholly unprepared for it all the same.