A Little Levity

When life gets heavy, it is important to find time and ways to laugh.  In our house, we tend to make up songs.  I present to you our latest composition:  

The Feeding Dance (sung to the tune of The Hokey Pokey)

We put the tube in.

He pulls the tube out.

We put the tube in.

And it makes him scream and shout.

We put gloves on his hands and pray he doesn't pull it out.

That's what it's all about.

We put the bottle in.

He spits the bottle out.

We put the bottle in.

And it makes him scream and shout.

If only he would drink some more we could take the tube out.

That's what it's all about.

Running on Empty

When last we left our intrepid protagonists, they were struggling with a series of high-stress events and hoping for calmer times.  Alas, it was not to be...

We were fooled into thinking life was improving when Jellybean was released from the hospital the day before Thanksgiving.  We even managed to have a lovely Thanksgiving meal with both families here at the house.  Unfortunately, the universe went right back to piling on the stress.

Episode 9:  The NG Tube
Jellybean was released from the hospital with an NG tube and a feeding pump, with instructions that he be fed precise amounts of milk fortified with precise amounts of formula every three hours, like clockwork.  So, no sleep for us.  Trying to coordinate these 8 feedings (two of which include giving medications), with pumping, sleeping, and taking care of a toddler is not easy.  Between getting everything ready for the feeding (warming and fortifying the milk, priming the pump, getting flush syringes, preparing for a bottle-feeding with gavage of the remainder) and cleaning everything up after (rinsing the feed bag; washing bottles and syringes, etc), feed take 45 minutes to an hour.  By the time we're done, we're less than 2 hours away from doing it all over again.  Needless to say, getting anything done is hard.  Very, very hard.  In addition, we have to change the tube weekly at the latest--more frequently if there are issues or he pulls it out.  I hope you never have to experience shoving a tube through the nose and down into the stomach of your screaming 1-month old.  Just sayin'.

Episode 10:  Miss Kitty
In the midst of getting Jellybean home and trying to negotiate a new schedule while sleeping in tiny increments, my 16-year-old cat, who I got in college when she was 10 weeks old, died.  It was peaceful (thankfully), but traumatic and unexpected.

Episode 11:  The Toddler
One Sunday evening, after the local urgent care was closed, my three-year-old begins shrieking in pain every time she went to the bathroom.  Nothing for it but to head to the ER.  A relatively easy fix with a single prescription, but definitely an added stressor.

Episode 12:  The Car
Phil was off in Tennessee officiating his mentor's funeral while his car was stuck in the garage because the battery was dead.  A friend was kind enough to send her husband over to jump the car--problem solved.  Or not.  A mere two days later, the car was dead again.  So, after returning his rental car from the trip to Tennessee, we jumped the car again and took it to the dealer where we got to purchase a new battery because, you know, we needed more unexpected expenses on top of everything else.

Episode 13:  Advent
So, here we are in the bright, cheerful run-up to Christmas.  Not.  Honestly, the holidays can bite my bohiney.  This is one of the church's two busy seasons and Phil has to get back to work in earnest.  I have another month until I'm supposed to return to work (how, I haven't quite figured out yet--we haven't found someone to watch Jellybean and he can't go to daycare--maybe this should be it's own episode), but with Phil back at work, I'm going to spend my days taking care of Jellybean and not getting much else done.  What else needs to get done?  Fighting with the insurance companies and drug companies.

Episode 14:  Insurance
First, there was the long involved fight to get Jellybean added to my insurance.  I turned in the paperwork to the employee benefits department in plenty of time, but for some reason, the insurance company only added him to the vision plan and not the health insurance.  Once I discovered this, I called my HR person who confirmed with employee benefits that Jellybean was indeed on the insurance.  Insurance continued telling the providers he wasn't.  After more calls by me to both the insurance company and employee benefits, employee benefits finally called the insurance company and got things straightened out.  Now we just have to wait for all the claims to get reprocessed.  Then I get to do the regular monthly fight with the secondary insurer.  Good times.

Episode 15:  Specialty Meds
Lil' Bit is on two specialty medications.  Today in the mail, I received a notice that her doctor must call the mail-order pharmacy and explain why she needs the medications or they will no longer be covered as of the first of the year.  Nice of them to give me so much notice--with the holidays coming up and all.  Then, I got home from a doctor's appointment for Jellybean to a telephone message from said mail-order pharmacy that Lil' Bit's specialty medication delivery has been delayed (it was supposed to ARRIVE today). I called them back and they told me that the delivery had not yet been sent and would likely not go out until tomorrow for (they hope) delivery on Wednesday, but it could be next week.  Say what?!  I was told that I could call back anytime (going through their automated menu only to then wait for a person every time, of course) to see if there was an update in the system regarding when the meds might arrive.  I was also cheerfully informed that Lil' Bit's doctor had been notified that the meds would be late.  I wanted to ask the customer service person what good that was supposed to do, but decided not to yell at her seeing as how she was simply the bearer of the craptacular news.  *sigh*  This is the second time that we have had trouble getting these meds and I specifically started requesting that they get shipped a week earlier than usual so that we didn't run out like last time.  Alas, even scheduling them to be delivered early does not seem to get them here in time.

So, here's the thing.  I am tapped out.  I am sleep-deprived (although not as badly as I could be thanks to some very wonderful, helpful, generous people).  I am behind on getting *important things* taken care of--like getting Jellybean enrolled in a special children's healthcare program, doing the monthly dance with the secondary insurer, or, say, balancing my checkbook for the last two months.  I am running on empty.  I don't know how everything is going to get done.  I no longer feel like things are going to get better.  I want to crawl under the covers and sleep for two days, emerge and do two days of nothing but problem solving, and then sleep for another two days.  Then, maybe, I could face the world.  Sadly, that's not an option.  As my husband so eloquently said in his sermon last week:

Life does not line up neatly, events taking a number and waiting their turn, each crisis followed by enough recovery time. . . .  [E]ach one of us has had times when too many things come all together, out of order, with no thought to our state of mental health or our levels of doneness.  As if life had moments of trying to see just how much water our boats can take on before we founder or capsize.

I know I previously said that God may have given me more than I could handle, but not more than my community could handle.  Sadly, it feels as though God took that as a challenge rather than as a compliment to the wonderful community in which God placed me.  So far I have managed to tread water, getting by with a lot of help, but it feels like every day there are bigger waves and more sharks in the water and I am weaker and less capable than I was the day before.  I hate this feeling of powerlessness, of weakness.  I need some light.  Some good.  Some breathing space to give me hope.  Before my cup runneth out.

Enough

To say that the last two months have been rough is something of an understatement.  Every time I think I have reached my limit on the amount of stress I can handle, something else got dropped onto our plates, and we had to make room for more.  Fortunately, we have been well provided for, and each of these episodes* has been resolved positively.  Still, it would be nice if we didn't have to keep figuring out how to solve more problems.

*My brother and sister have decided that we are experiencing a saga.  As such, I have come to refer to the stressor events as episodes, a la Star Wars.

Episode 1:  The Grandmothers

On September 27, one of my grandmothers passed away on her 96th brthday.  Six days later, her funeral was held.  Because of my pregnancy, I could not attend.  That evening, we received word that my other grandmother, who was 97, had passed away.  Again, I could not make the funeral.  Everyone understood, but I was crushed not just by the double loss, but by my inability to join my family in mourning.

Episode 2:  The Bathroom

Our bathroom needed fixing for close to two years now, but it finally reached the point where it was unusuable, between the non-working tub drain and tiles falling off the shower wall.  So, we finaly made arrangments to get it redone.  The original plan was for it to be finished before Jellybean arrived.  However, the day after work started, we found out that the subcontractor who was scheduled to start the next day had just been rescued after a week lost in the wilderness and was in the hospital close to death.  This put things a week behind as we got a new subcontractor.  Several other hiccups came along, as they always do in remodel projects, and it finally got finished this week.  It looks amazing, and we are totally thrilled with it and the people who did it.  However, next time, I will not schedule remodel work for when I am 9 months pregnant or about to have a child undergo heart surgery.

Episode 3:  Jellybean

So, we knew Jellybean was going to have issues and expected the heart surgery, but just because we knew about it didn't make it any less stressful.  He did so well with his recovery the first few days after surgery that we got our hopes up that he was going to beat the curve.  However, progress slowed and then things went backwards for a time as he lost weight, got congested, and refused to be weaned off the oxygen.  Progress has started again, but it is slow-going and the waiting is sometimes tedious.  This is, by far, the biggest stressor, and the unknowns don't help.  Still, we know we're getting amazing care and we are in the very best place for him.  We just hope we get to bring Jellybean home soon.

Episode 4:  The Mentor

On November 11, we learned that Phil's mentor, Rev. Dr. C, was going into hospice.  Just as we were starting to process the news, we found out that he passed away.  This was a huge hit not just for Phil, but also his parents, who are busy watching Lil' Bit for us in absentia, because Rev. Dr. C was their pastor and friend for so many years.  Because, you know, what we really needed was more death and grief stress while our son is fighting for his life.

Episode 5:  The Emergency Appendectomy

Yesterday, we got a call that Phil's mother was in the hospital with what was ultimately determined to be appendecitis.  They called the surgical team in last night so that they could take care of it before it ruptured.  Still, we had to figure out arrangements for Lil' Bit for the afternoon and evening since Phil's folks were out of service.  Fortunately, her godparents stepped up and Lil' Bit got to spend her birthday with four of her favorite people.  Chuch members also stepped up and started planning meals to bring to the house.  So, everything turned out well, but again, lots of extra stress.

Episode 6:  The Furnace

While my mother-in-law was convelescing in the hospital overnight, our furnace quit working and my father-in-law woke up to a cold house.  Phil headed home to oversee repair stuff and also to visit his mom and see Lil' Bit, while I held down the fort at the hospital.  Fortunately, the furnace problem was just a pilot light issue, so it was an easy and relatively cheap fix.  Even so, it was one more d*** thing.

So, here's the deal.  I am done.  I have had enough.  I know better than to ask if anything else could go wrong; there's always something more that could happen.  So, instead, I would like to kindly request the universe to give us a break.  Let us get through the rest of Jellybean's hospitalization without additional episodes.  I'm glad we've been amazing and handled all kinds of stuff so well (so far), but I am tired of having to be amazing.  I'd like a little quiet, please.  But, if that's not in the cards, then I'll just ask that we continue to find positive resolutions for whatever comes; that we have enough emotional and physical energy left to do whatever needs to be done; that we have enough love, prayers, and support to see us through.  My simple prayer is for "enough."

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.

More Than I Can Handle

I am now three days away from my induction.  Assuming it’s true that second labors are faster than first ones, I am a mere four days away from meeting the little dude who has been camped out under my ribcage lo these many months.  But, as excited as I am to finally meet this little guy, I am also quite terrified.  There is no question that, no matter how uncomfortable I have been, Jellybean is much easier to take care of inside than he will be once he arrives.  I am terrified that I won’t get to hold my baby or have any pictures with him before he is whisked away to the NICU and attached to tubes and wires of various sorts.  Terrified that the official diagnosis after he’s born will be worse than we know.  Terrified of the upcoming surgeries and all that they will entail.  Terrified that he may not survive.  But I’m also terrified of leaving my daughter behind.  Terrified of how all of this will impact her.  Terrified that I am not up to the task of taking care of two special needs children.

 

And worse, there’s nothing I can do about any of this.  I have done my part.  I have read and prepared emotionally as much as I can for whatever is ahead.  Everything that’s left is all outside of my control, which only makes a control-freak like me even more terrified.  People have been telling me how well I am handling things, and maybe I am.  I don’t really know.  But I haven’t spoken much about the terror before now because it usually elicits a well-intentioned response to which I do not subscribe.  Namely, “God doesn’t give you more than you can handle.” 

In my experience, God often gives people more than they can handle.  There are children in protective services because their parents got more than they could handle.  Addicts get high because reality is too much for them to handle.  People maim and kill themselves in an effort to escape life because they feel unequipped to handle a situation or circumstance in which they find themselves.  As my sister recently wrote so eloquently on Facebook:

Whence this crazy belief that God doesn't give us more than we can handle?  Cain got more jealousy and anger than he could handle.  Noah got more stress than he (and his son) could handle without abusing alcohol.  Moses got more power than he could handle and for on the "ineligible" list for the promised land.  David got more temptation than he could handle.  Absalom got more power over his sister and more consequences from his father than he could handle.  St. Peter got more temptation to violence and denial than he could handle.  Judas got more temptation for betrayal than he could handle.  The list goes on... and on... and on...  Every last one of us is given more than we can handle.  If we're lucky, we have communities who extend the mercy, support, and love necessary to get us through, and we pay that favor forward by supporting rather than judging others when they fail to handle everything in their own lives.  If nobody got more than they could handle, there's be no need for grace.  Fortunately, in addition to too much of everything else, God gives more grace than any of us can possibly use up.

If my sister’s right, and I think she is, then grace and community are what will get me through.  And, lucky for me, I find myself in the midst of an amazing community made up of friends, family, congregants, neighbors, and even people I have never met.  We have been the beneficiaries of some amazingly generous and unexpected acts of kindness over the last few months.  We are being constantly prayed for, cared for, and provided for.  Thus, even though God has given me more than I can handle, He didn’t give me more than my community can handle.  But, when I’m in the middle of the fire, it’s easy to feel overwhelmed and alone.  So, my plan is to take some tangible reminders of the love and prayers of my community—a prayer shawl, pictures, notes, etc..  That way, when things get hard, I need only look at them to know that that I am not alone in this; that there are all kinds of people who have my back and will help make it possible for me to get through whatever is coming.  And when I remember that, I remember the truth—that even with all that is to come, I am so very blessed.  And for that, I am so very grateful.  

T-minus 3 days and counting...

A Trial Run

Last night, we received a reminder that we are not in control.  Around 6:30 p.m., my stomach started feeling really hard and uncomfortable.  I wasn't really sure if it was contractions because it was just an uncomfortable tightness that slowly came and went; I couldn't really count or time what was going on.  Per the instructions from my doctor's office's website, I drank water and laid down on my left side to see if the feeling would go away.  It didn't.  After about an hour, we made plans to drop off Lil' Bit with her godmother and headed out to the hospital to get me checked out.  The sensations became more distinct to the point where I was able to identify two separate "contractions" in the 20 minute drive to the hospital.

When we got there, all the triage rooms were full, so they put me in a labor and delivery room.  This turned out to be a real perk because those rooms are way more comfortable than triage--more private, too!  They put me on the monitors and checked me for dilation.  I was roughly 1-2 cm dilated, which surprised me, but is apparently totally normal at this point for a second child.  Jellybean looked great on the monitor, an ultrasound determined he had plenty of fluid, and they didn't find any evidence of an infection or dehydration that might be causing the contractions.  However, the monitor made clear that I was having contractions, and the longer we were there, the more regular they became.  They didn't hurt, although they were uncomfortable, and they never got above 40.  By the time they discharged me, they were very regular, coming three minutes apart and roughly all the same strength.  I didn't know you could have regular contractions only three minutes apart and not be in labor.  Turns out you can.  They aren't considered Braxton Hicks because they were too regular and don't go away with rest, but because they didn't seem to be causing labor to progress, they were deemed "preterm contractions." 

We were at the hospital until about 11:30 or so.  They checked my dilation again before discharging me to see if the contractions had caused any further dilation in the 2-3 hours I had been there.  Because I wasn't any further dilated, they were sending me home.  I was surprised that they weren't going to do anything to stop the contractions, but given Jellybean's gestational age (34 1/2 weeks) and the fact that any meds they gave me to stop the contractions could cause issues for him, they explained that their preference was not to stop any contractions.  Generally, when the body goes into labor at this point, babies generally do just fine and most don't need ventilators or any special care and there's usually a reason for the labor, so they prefer to trust the body that it's time.

It was certainly odd to be discharged while still contracting.  My orders were to come back if they got worse and they gave me a method to attempt to gauge that.  At the same time, they didn't want me to wait too long if I thought they were getting worse because they hoped to be able to transfer me to Detroit if I was, in fact, progressing, but they couldn't do it if I was in labor.  So, we were left with this grey, fuzzy area to decide when and if we thought we needed to come back.  Fun!  On the plus side, I was already scheduled to see my doctor today, so the on-call doctor from last night left word to have them check my cervix again today and make there hasn't been any further dilation.

We picked up Lil' Bit and got her home, but getting her back to bed was extremely difficult--particularly given that it was 12:30 a.m. at that point and all three of us were very tired from being up way past bedtime.  By this morning, the contractions seemed to have stopped--yay!  Outside of two doctor visits (and writing this post), my goals for the day are sleeping and drinking water.  Ah, what a glamorous life!

What surprised me most about this whole incident was how calm I was.  On the way to the hospital and as they were hooking me up, I was more worried that they were going to put me on the monitor and tell me I was crazy because nothing was going on than I was that it would turn out I was actually in labor.  Once it was clear I was contracting, I was so relieved I'm not sure I ever processed what it would mean if I was really in labor.  Fortunately, I didn't need to.  And, we got the opportunity to test out our contingency plan for Lil' Bit and local delivery in the event we don't make it to the induction, which makes me feel a little calmer about that, too.

Still, it was a very real reminder that Jellybean is going to come when he wants, and all I can do is try to be prepared for whenever that is.  Even so, I spend a few minutes every hour or two singing the "Just Keep Swimming" tune from Finding Nemo to Jellybean, except the words I use are "Just keep cooking."

T-minus 4 and 1/2 weeks and counting...

A Transfer of Power

Today we met with the high-risk OB in Detroit--Dr. P.  The ultimate determination of the meeting was that we need to transfer my care to her practice.  I will still go to my local OB's office to do my twice-a-week non-stress tests (NSTs or antenatal testing as the doc called it), but all of my weekly visits, ultrasounds, blood sugar regulation, etc., will now be done by the Detroit practice.  Personally, this seems pretty reasonable to me.  If I were a doctor about to take on a high-risk patient with delivery of a newborn who needs surgery, I would want to be the one primarily responsible for her care.  However, she will not necessarily--in fact is unlikely to be--my delivering doc.  So, because I will have weekly visits, they will do their best to introduce me to as many of the people in the practice as possible so that hopefully I will know whomever ends up being on call when I deliver.

We reached agreement that we should schedule me for an induction for just after 39 weeks so that if I haven't delivered before then, that's when we'll get this party started.  Dr. P indicated that there are almost no "wet lung" issues after 39 weeks, so that Jellybean should be sufficiently grown for the cardiologists' purposes, but that because of my gestational diabetes and the increased risk of still birth after 39 weeks for gestational diabetics on insulin, we don't want to go much beyond that.

I'm a little scared, as we are now only 6 weeks away from my scheduled induction.  In fact, as I calculate things, by the time I start seeing the doctor in Detroit in two weeks, I will be only 4 weeks away.  Thus, I will probably only being making 4 additional trips to Detroit in addition to the one we were already anticipating.  I guess that isn't too terribly horrible.  At the same time, it doesn't give us much time to meet the other docs.  It also means I now have to freak out about all the things I need to accomplish in the next 6 weeks.

We also reached an agreement that if I went into labor while still at home, I should go to the local hospital and let them determine whether to medically transport me to Detroit or just deliver Jellybean locally.  If I deliver there, the local hospital will transport Jellybean to Children's Hospital and I will do my best to get the heck out of there asap to follow.  Although being stuck in a different city than Jellybean will be difficult, it is far better--for him especially--than ending up delivering him by the side of the road without any of the interventions we know he needs.  To that end, we have started talking with friends about contingent plans so that we can have someone with Lil' Bit, someone with me at the hospital, and someone with the hubster following baby to Detroit in the event this occurs.  Hopefully we won't need to use this contingency and we can just head over to Detroit for the planned induction.  But, we all know babies come when they want to, so we just have to wait and see if Jellybean is willing to go along with our plans.

I'm pleased to have a plan.  I'm pleased to have some answers.  I'm frumpy that I have to go to Detroit weekly, but pleased I can still do my NSTs locally rather than driving 2 hours to Detroit for a 30 min test and then driving 2 hours home.  I am sad I won't be seeing my regular OB.  I was supposed to have two more visits with her, but both of them have been switched to other docs in the practice, so now I won't see her before the official transfer to the new practice.

I am both excited and terrified about the end of this pregnancy.  It has been less than a glowing good time, but Jellybean is much easier to take care of and doesn't need surgery as long as he's inside.  Labor will bring me my beautiful baby boy, but it will also bring a whole new host of challenges--and not just the usual newborn ones.  It's starting to sink in and it's pretty scary stuff.  Don't get me wrong.  I know when the time comes, I will be up to the challenge.  I will put my head down, thrust my metaphorical horns forward, and charge full-throttle into whatever is to be--that's just who I am.  It doesn't make it any less scary, though, which makes me extremely thankful for the support of my friends, family, and community.

T-minus 6 weeks and counting...

Dear Doodlebug - 2 years, 10 months

Dear Doodlebug,

We're about 2 months away from your third birthday and I wanted to take some time out from the whirlwind of dealing with your brother's pending arrival to celebrate how wonderful and amazing you are.  I want you to know how much you make your parents smile and how much you heal our hearts.

Where once we were worried that you weren't talking enough, now you are quite the conversationalist.  You can make long, fairly complicated sentences which positively amaze us, like, "When I go to H-y's and play in the sand and take my shoes off, my feet get sandy."  When you parrot us, it's fun to see ourselves reflected in you--like when you got up from the game and held up your index finger, and told daddy "I'll be back in 1 minute" while you went to eat a bite of cereal; or when you go upstairs and say, "I'll be right back"; when you put your Pooh bear to bed, tuck him in and tell him, "Good night.  I love you.  I see you in the morning."; or when the kitty runs away and you look at me and say, "That happens sometimes."  We love how when daddy calls us his "ladies," you giggle and say, "I not a lady.  I a big girl."

You are so polite with your automatic "Thank yous" and your "pleases" are coming along nicely.  You've even begun asking to be excused from the table--you obviously didn't get that from us.  You are working well at picking toys up after you play with them and I am working on letting that happen more on your schedule rather than making you clean up each item when something new catches your fancy.  You are doing a much better job at taking turns while playing games, although sometimes TAD (toddler attention deficit) kicks in and you forget it's your turn.

You can do puzzles well beyond your age-rated abilities, practically make your own coffee from the Keurig (if you could but reach it and if you actually drank coffee), and pick out and play your own DVDs.  Your ability to memorize books and songs is so impressive.  It's fun to hear you tell us stories or "read" us books-- how every page starts, "One day," and then you attempt to describe what you see in the pictures.

You seem to be adjusting to the idea of a brother/usurper fairly well.  You always take his "C pillow" (a Boppy) back to his room if we use it for nap time.  You point to my tummy and tell me I have a "baby brother" in there and then, sticking out your belly as far as you can, you proudly announce that you have a baby in your tummy--although you have declared that yours is a girl.  You announce happily that you will help him learn his letters and numbers as he gets "big and big."

You still love to jump--whether on your bouncy (trampoline) or across the floor from blanket to blanket (thereby avoiding the floor/lava), or down off the couch in full flight.  We have harnessed some of that into gymnastics class which you seem to adore.  I love how you show me what you learned and then say, "I do dat in dymnastics."  It's very clear you are proud of what you can do and you have every right to be.  I love the joy you have when you run back and forth across the room, shouting, "watch me, Mommy."  I love the twinkle in your eye when you grab my arm or leg and say, "I got you.  You can't get away."

You can be amazingly clear about what you want at times and other times you will regress and simply point at your mouth, or point at a desired item and refuse to use your "big girl words."  Still, your big girl moments far outweigh those times.   You are working on being so independent whether getting your clothes and shoes on and off by yourself; working to figure out the whole potty thing; or getting your own yogurt from the fridge, spoon from the drawer, and getting the lid off without any help.

I am amazed every day at the differences in you that have come in less than a year.  When you watch the DVD of your birthday from last year, I can't believe how much you have grown and matured in just 10 months.  In some ways, these differences feel bigger than those between your birth and 10 months.  But, the best part--or at least my favorite part--is when you give spontaneous hugs or say "I love you too, Mommy.  You're my best friend."  Those times help me feel healed and I think I can make it through just about anything.

So, thank you for being my doodlebug.  Thank you for being so amazing.  I can't wait to watch you continue to grow into the person you are becoming.  I am so proud of you.

Love,
Mommy

Remembering Gratitude

Today at church, a friend gave a powerful testimony about a lesson she had learned this week.  Her lesson was best summed up in her last sentence--you can't be pitiful and grateful at the same time.  It was a timely reminder to me that, in the midst of preparing for the whirlwind to come, I have much to be grateful for.  So, I wanted to take a moment and give thanks.

I am thankful for:

1) Being a parent.  As hard as all this surgery and medical stuff is, I am blessed that my journey with infertility ended with my having children.  Not everyone is successful, and I am grateful that I was one of the lucky ones who was.

2) My marriage and my husband.  Marriage is hard enough.  Ours has survived law school, infertility, and high needs children.  I am so lucky and so grateful that he has my back and that we're in this together.

3) My family--both by birth and by marriage.  They have been so supportive in all of the difficult moments.  Just feeling loved and supported can do so much to get me through the day.

4) My job and my co-workers.  I am lucky to have a job I love and to work with people whose company I enjoy and whose opinions I value.  They have also been a great support to me, finding ways to help and reminding me it's okay to cry, even if I am at work.

5) Health insurance.  I am grateful to have good health insurance. I am also grateful that there are no longer pre-existing conditions or lifetime maximums, so I don't have to worry about my children being uninsurable before they are even 5.

6) Reliable transportation.  With all of the trips to the doctor, including lots of trips to Detroit, I am grateful that my car is in good condition and I don't worry about whether I can make it all of the places I need to be.

7) Our medical providers.  I am grateful for such an amazing group of doctors--both for me and for my children.  Having confidence in their care makes things so much easier on me.

8) My special people.  I am lucky to have friends, near and far, who do amazing things for me.  Whether sending prayers, providing pick-me-ups, giving hugs, standing beside me when times are tough, coordinating care for my family, providing food and clothing, babysitting, messaging to make sure I'm okay, or any of the other myriad ways they show their love, I am blessed by and grateful for each and every one of my friends.

I know that the next few months, maybe even years, are going to test me.  I am so grateful for all of the blessings I have that will help me not merely survive the times to come, but find the joy and love present there as well.  And, hopefully, even in the dark times yet to come, I will remember to be grateful for all I have.

Letting it Out

One day last week, a friend of mine posted a song in her Facebook feed for a number of her friends that she had been praying for.  I had never heard the song before, but I owned other songs by the artist, so I clicked on it for a listen--after all, I was fairly certain I was one of those friends for whom it was intended.  Needless to say, it made me cry.  Not a little sniffle cry, but a runny nose, big tears falling without any help from me cry.  And as I sat there listening (and crying), I realized that I needed to cry.  I have been working so hard to cope and deal with what is going on by researching and looking at things logically that I have been shoving the emotional stuff down.  Way down.  I know I do it, in part, because I feel like I need to hold it together if I'm going to get through the day.  I'm afraid that, if I let it out, then I won't be functional anymore, and I need to be functional to take care of Lil' Bit; to work; to get the house ready; to remember all my meds and doctors appointments; to survive.

But, in that moment of grace, when the sadness leaked out, I remembered that I cannot truly cope unless I allow myself to feel--sad, angry, overwhelmed.  If I don't let those feelings out, they are just going to fester inside of me until I can't keep them down anymore--and then my functionality will really decrease.  When another friend did something nice for me later in the week, the tears came again--fast and unexpected.  It would appear that I can take heavy and sad, but anything nice sneaks past all my defenses and renders me vulnerable.  As a result, I have set a new project for myself.  At least once a week, I need to listen to music or do something similar that can eek past my defenses and let me really feel my frustration and grief.  Still, even knowing it needs to happen--even knowing that I usually feel better after I have done the work of letting it go--it's extremely hard.  I pride myself on my ability to cope; to get through the day; to be strong.  Crying feels weak, out of control, counter-productive.  My logical mind rages against the loss of (the illusion) of control.  My rational mind argues that I shouldn't bother because I don't need anything else on my to do list.  I'm hopeful that it will feel less like a burden and more like a spiritual gift but, even if it remains difficult, it's still worth doing.  Most important things are.

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.

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.

Frustration and the "Practice" of Medicine

Earlier this week, I had another visit with my high-risk ob for a growth ultrasound of Jellybean to make sure he's growing enough, but not too much.  Having conceived through IVF, I get monthly growth ultrasounds to make sure Jellybean is big enough because IVF babies are statistically smaller. At the same time, because I have gestational diabetes, I get monthly growth ultrasounds to make sure Jellybean isn't getting too big from the excess blood sugar.  Now, with his CHD, the growth ultrasounds also check to make sure he's growing appropriately in utero and not being hampered by his condition.  So far, so good.  He came in at an estimated 2 lbs 8 oz.  His belly measurement was his biggest measurement, but it was within 2 weeks of his gestational age, which is within normal limits.  During the ultrasound, we could see him open and close his mouth, open his eyes, and practice breathing.  He was relaxing and not moving too much.  He actually gave them a great view of the heart--a view we can only hope he'll give us at the next fetal echo.  So, the news was good.

It was, however, a deeply frustrating visit.  The tech noted that she had seen my file, but hadn't had a chance to review all the fetal echos.  I told her what I knew.  She talked about how she was planning to take a fetal echo class in the future and that she must need it because she couldn't see the VSD.  I told her that the cardiologist had told us it was hard to see because of its location, so it didn't mean she was necessarily bad at it.  I didn't really think anything else about it until the doc came in and the first thing she started with was how she just didn't see anything wrong with the heart.  She indicated that the docs at the hospital would be able to have a better look once they could do an echo directly on Jellybean after he was born, heavily implying that she thought there was nothing wrong and it would show that.  This made me really mad.  We've now had two different cardiologists do painstakingly long and involved echocardiograms on Jellybean and they both saw things that concerned them, but here is the high risk ob--who has some knowledge, but it isn't her specialty--heavily implying they are wrong and we're getting worked up about nothing.  I get that medicine isn't always precise and that the very nature of a fetal echocardiogram increases the inability to provide a precise diagnosis right now.  But, honestly, it doesn't help to keep getting pulled in every direction.  Maybe she thinks she's helping, but she's not.  Just when I think I might have a handle on my stress and my emotions, it feels like the world gets yanked out from under me.

My gp has adjusted my anti-depressant and it seems to be helping, but, at the same time, my baseline keeps moving.  Fortunately, I have another visit with him coming up to talk about how I'm doing with the new meds, and I hope to get a little help about whether I'm handling things appropriately and what to do with all this conflicting information.  I also have a visit with my regular ob in 2 weeks, a few days before the next fetal echo.  I have more confidence in her than the high risk ob--and a better relationship--so I'm hopeful she will be able to help me sort through this stuff.

Ultimately, I won't know anything until the next fetal echo, so it's mostly just an issue of keeping my head above water and trying to stay functional until then.  Usually, I would do this by planning and researching, but now that only seems to bring more anxiety because I'm not sure if I'm doing it needlessly.  I had just started researching the hospital in Detroit where I would deliver if it comes to that and, suddenly, I'm overreacting in the eyes of one of my docs.  I'm trying to get a handle on what having a c-section versus natural delivery would mean, not just in terms of recovery, but what it means for disability leave and medical bills and being able to be present to help with the kid to come and the kid I have, and I keep being told that there's no reason for a c-section because, even if there is something wrong, Jellybean can probably tolerate natural delivery and that's really what's best.  Really?  How can we even say what's best when we don't even know all the parameters yet?  My guideposts keep getting moved, my whole foundation is unstable, and all I can do is flounder.  I hate feeling stuck.  I hate feeling powerless.  I hate having knowledgeable professionals tell me vastly diverging beliefs about the health of my child.  Medicine is great and the advances it provides for are amazing.  But right now, all I want is a definitive answer or, barring that, a little consensus.  Is that really too much to ask?

Don't Know Why

As we have shared the news of Jellybean's heart issues with people, we've have two main questions:

1)  Is it the same thing Lil' Bit has?  No.  If it was, doctors would be writing this up in medical journals right now.

2)  Do they know why both your kids have heart issues?  No.  There are lots of factors that can play a role in children getting congenital heart defects (CHD).  Below is our best understanding of some of those risks and why don't seem to be applicable.

Family History
This is generally the biggest factor, hence the big jump in probability of Jellybean having a heart defect once we discovered Lil' Bit had one.  However, to the best of our knowledge, there are no cases of a CHD anywhere in either my or Phil's family.  So, although Lil' Bit's having one increased the chance Jellybean would also have one, Lil' Bit had no increased risks.

Anti-depressant Use
First, an interesting fact:  The fetal heart is fully formed by roughly 7 or 8 weeks gestation, which is generally long before most people know they are pregnant.  Thus, things that occur later in pregnancy have no bearing on whether there are CHDs.  However, because I was taking my anti-depressant prior to and during that time period, and there is a link between the anti-depressant I have been taking and babies having CHDs, we were concerned about this.  However, the drug I took (my doctor just switched me to something new) is linked to a very specific type of defect which Jellybean doesn't have, and I didn't take any anti-depressants during my pregnancy with Lil' Bit.  I have had at least seven different doctors reassure me that this was not the cause.

Uncontrolled Diabetes
Children born to women whose diabetes was not well-controlled are statistically more likely to have a CHD.  However, because my diabetes is gestational, it is less-likely to be the cause of any issues.  My doctors reassured me this is generally applicable to women who are diabetic pre-pregnancy.  In addition, my A1C test at 3 months gestation revealed a nice low average blood sugar level of like 5.5 (well in the normal range).  Because this test provides an average blood sugar level for the prior 3 months, to the extent that there was any chance I had diabetes prior to pregnancy, it could not even remotely be considered out of control.  This was not the cause of either child's CHD.

Chromosomal Abnormalities
There are lots of chromosomal abnormalities that are associated with CHDs and, because I was 34 at the time the embryos were created, my kids were at a slightly higher risk of such abnormalities than if I had been younger.  Because we are unwilling to risk a miscarriage to have an amniocentesis done, we won't know until after Jellybean is born whether he has any such abnormalities.  We do know, however, that Lil' Bit doesn't have any and, because her embryo and Jellybean's were created at the same time, there is no additional risk for him based on my increased age during his pregnancy--the risk is calculated based on the age of the egg, which was the same for both kids.

IVF
This is the biggy, and it's somewhat controversial.  Initially, there was a fair amount of research that indicated a link between IVF, particularly with the use of ICSI, and CHD.  Subsequent research indicated that the increased correlation could be because of the increase in multiples (twins, triplets, etc).  Other research has shown that although there is an increased incidence of CHD among IVF users, it is because there is an increased incidence for couples who suffer infertility, regardless of the fertility method used to conceive.  Thus, whether Clomid, IUI, IVF, or natural conception after years of infertility, the incidence rate appeared correlated with infertility, not IVF.  We had seen this research and thought that since our infertility issues were largely structural--the result of blocked tubes from a ruptured appendix--rather than genetic or hormonal, we had a lower risk.  Guess not.  In any event, the current understanding is that children conceived using IVF do not have an increased risk of developing a CHD.

So, there you have it.  The only risk factors for CHD that might have some application in our case appear not to be the cause.  And, in truth, I'm not sure it really matters what caused it.  If it turns out I did something to cause it, would being able to beat myself up about it change anything?  No.  Would pointing the finger at IVF help?  No.  I think we would have made the same choices because the odds of any child having a CHD are just so darn small.  So, to the best of our ability, we're setting aside the need to know why it happened and just focusing on what we do from here.  It seems like a much better use of our limited physical and emotional resources right now.

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.

On Power, Acceptance, and Investment

It's been a rough few days since the news from the fetal echocardiogram.  We have been struggling to regain our bearings; find our footing.  We have spent a lot of time thinking and talking.  As we did, one of the seemingly unrelated thoughts that came to me in the quiet hours was that I had caused my miscarriage with Oliver.  I remember clearly being in the shower one morning after discovering we were pregnant and thinking, "I am excited you're here, but I'm not capable of dealing with another child with a heart problem."  Shortly thereafter, we lost him.  I remember having a similar thought when we were trying again last October.  "I can't deal with any more problems, so if you're going to have issues, please don't come."  Did my thoughts cause the miscarriage and the failure in October?  As a friend of mine said, "You are not that powerful."  She's probably right.  But the amazing part about the thought of me having caused those disappointments was that I didn't feel guilty.  Let's assume I did cause them.  I honestly meant the thoughts when I had them.  I was in no position to deal with another child with heart issues either of those times.  When we went forward this time, we were both clear that we were willing to take whatever we got--problems and all.  Remembering that has made coping a little easier.  But more amazing was that, as I processed these thoughts, I finally felt at peace with my miscarriage.  I'm fairly certain that I did not expect the news that Jellybean has a heart defect to bring acceptance of Oliver's miscarriage.  Then again, we often don't know what form blessings will come in.  And, right now, I'll take any blessings I can get.

At the same time, we are still struggling with the news.  In one conversation, I indicated that I was having trouble investing.  The statement was nieve.  I was already invested.  Still, my brain was trying to protect me.  As we talked, we realized that we needed to be invested.  The only way to fight for Jellybean was to be invested.  And the best way to be more invested, was to give Jellybean a name.  So, that's where we are.  Figuring out Jellybean's name.  Getting invested.

Our next fetal echocardiogram is scheduled for next month.  They are waiting for Jellybean to get bigger because it will be easier to see the heart.  It's hard to wait that long, but it gives us some time.   Time to choose a name for Jellybean.  Time to grieve the loss of the perfect child we hoped for.  Time to accept the perfect child that Jellybean is.

A Not Entirely Unexpected Complication

Today we went in for a fetal echocardiogram to check out Jellybean's heart.  Turns out it was a good thing we did.  Looks like he (it's a boy!) has some issues, including a VSD.  What the doc saw could be any number of things, so we don't have an official diagnosis.  Instead, I have to go to Detroit for more tests sometime in the next few weeks.  They will get more and better pictures (not sure how), and come up with an official diagnosis.  The doc today did say that she thinks Jellybean will need surgery shortly after birth--not with hours, but within the first week.  Because of that, she thought it might be better for me to birth at the Detroit hospital.  Obviously, we have lots more testing and follow-up before we reach this point, but this adds way more degrees of difficulty to the delivery.  On the plus side, she didn't think it was anything that would require early delivery or a C-section.  That is, she thinks Jellybean can tolerate labor and delivery.  So, that's good news.

The doc today is contacting Lil' Bit's pediatric cardiologist, in part because that's who Jellybean will see after birth, but also because Dr. S is affiliated with Detroit.  The doc today is affiliated with UofM, but we are more comfortable dealing with Detroit since we already know the folks there.  Dr. S is going to work on the fetal referral process to get me on the schedule for the additional testing.  As we go along, I will likely have OB visits with my regular OB, my high-risk OB, and a new OB in Detroit so I will be familiar with them before delivery.

All of this news is frightening, frustrating, and overwhelming.  However, I have some small semblance of calm in that I know how some of this works because of Lil Bit's surgery.  This time, we know the surgeons, we know the hospital, we know the area, etc.  We also have the benefit of knowing early, rather than finding out 6 months in, so we can prepare (Read--plan!!!  Always look on the brightside, right?)  Still, I had been hoping and praying the Jellybean would be "normal."  Instead, it looks like he is already trying to outdo his sister.  This sibling rivalry thing sure starts early!

So, to sum up:  We know there's something wrong, but we're not sure what.  We should find out soon, but we don't know when.  There will be lots of planning required, but nothing I can do yet.  And I'm not supposed to stress.  Yeah.  Good luck with that.

Facing Infertility in a Facebook World

I had hoped to post this during National Infertility Awareness Week (April 21-27, 2013), but life got in the way.  Still, as many of my friends are giving birth and populating my Facebook newsfeed with adorable newborn pictures, and with me headed for the big anatomy ultrasound, I wanted to talk a little about what it was like for me on the other side of the feed.

When I got pregnant with Lil' Bit, I was so excited.  As did many of my friends, I changed my profile picture to an ultrasound image and was generally obnoxious as only pregnant women (particularly those of us who worked so darn hard to get that way) can be.  I justified it because I had EARNED it.  I don't know that I thought much about those on the receiving end of my posts--those who were happy for me, but for whom each of my posts was a reminder of what they had not yet been able to achieve.

Fast-forward to the past year, where I was faced once again with my infertility as I struggled with miscarriage and a failed FET.  As I chronicled here and here, I struggled as my newsfeed filled with friends' news of pregnancy and ultrasound pictures.  It hurt to see others getting what I wanted while I was being denied what I worked so hard and paid so much to achieve.  Even after I got the positive result from this pregnancy, the pain was still fresh.  And with that pain in mind, I began to wonder how best to move forward.  How could I balance sharing my good news with making it less painful for those who I knew were still struggling?  I ultimately determined that there wasn't much I could do because I can't anticipate what will hurt any particular person, given that they all have unique struggles.  But, there was one thing I could do.  I could refrain from changing my profile picture to an ultrasound image.  I don't know how it affects others, but for me, it was a constant stab.  It was one thing to see the pictures in my feed and know I wouldn't have to see them soon as they got bumped by more recent stuff.  But, once it was a profile pic, I saw it every single time I interacted with the person or they did anything that showed up in my feed.  So, knowing how difficult it was for me to be on the receiving end, I decided that I would not inflict that on anyone else who had similar feelings.

This is not to say that those who did or do it have done something wrong.  They had and have every right to proclaim their joy in any way that they want to anyone that they want.  I even did it last time with Lil' Bit.  This time around, though, I want to be a good steward to those who are still struggling and those who have yet to discover their struggle ahead.  I won't stop sharing my joy, but I can try not to make it unavoidable.  And please know, even as I struggle with my pregnancy and get frustrated with my shots, I know how lucky I am.  I know how many people deeply want a pregnancy, any pregnancy, and would take a high-risk one over none at all.  I know that pain.  Even as I carry my second child, I remember and feel that pain.  I have not forgotten.  To those of you who share the struggle, you are on my mind, in my heart, and in my prayers.

Pregnancy Comparisons

I knew going into this process that pregnancies can be very different.  But, much like when people tell you parenting will be hard, you have no real concept of what that truly means until it actually happens.  So, here I am, wallowing in the midst of a very different pregnancy, struggling to try and enjoy it.  In all honesty, I am glad we decided it would be my last.  Even if we hadn't, my experiences this time probably would have sent me to that decision anyway.  Between periods of bedrest, bleeding, round ligament pain (OMG! I did not have this at all last time and it is horrible--imagine a charlie-horse in your groin every time you stand up or roll over in bed), weekly doctor's appointments, extra ultrasounds and a fetal echocardiogram, and being older with less energy to boot, this pregnancy is anything but a cake walk.  Don't get me wrong.  I am well-aware that it could be much worse.  Still, I just never anticipated quite how different from my first pregnancy this one would be.

What's more, the things that are the same as last time aren't terribly great.  For example:  I once again have a low-lying, anterior (up front) placenta.  Now, the ultrasound tech informed me that pretty much everyone's placenta appears to be low-lying at this point, so she's not worried about that, particularly given that it moved well last time.  There's also nothing horrible about the anterior position of the placenta, except it means I likely won't feel Jellybean moving around until 22 weeks.  That's a bummer because I was really looking forward to feeling baby sooner this time.  I also wish the nurses would stop asking every visit if I can feel baby move--it makes me panic even though I know why I can't feel any movements yet.  Hopefully, things will look better at our ultrasound this week.

What else is the same?  Having gestational diabetes.  Although this time around it's so much more complicated.  Between drawing blood four times a day to test my sugars, and three shots a day of both long and short-acting insulin, I have already had my fill of needles.  I have managed to lump my 8 pills and 3 shots per day into only 6 medication administrations, but add in Lil' Bit's 5 medication administrations and it gets really complicated.  So far, I have missed or slept through multiple blood-sugar tests, two or three fast-acting insulin shots, and two long-lasting insulin shots.  This, even though I set timers on my phone for the two meds I was having the most trouble remembering to take.  I suppose that, on average, this is not a bad record, but it is frustrating all the same.  My doc said that if we can get me to the point where my sugars seem pretty well-regulated, I may not have to test four times a day.  On the other hand, given that my insulin resistance is expected to increase as we go along, I'm not convinced that there will really come a time when my sugars are well-regulated.  Still, I have managed to keep from having to have a fast-acting insulin shot at breakfast, so that's something.

I have been doing pretty well on eating appropriately and have managed to get in a decent amount of exercise by doing nesting/cleaning activities.  Still, I find myself drawn to the things that have less nutritive value.  One day, I caved and exchanged 31 carbs for 15 gummy bears.  Even so, I must be doing pretty good since I've managed to only gain two pounds since February when we started IVF.  I just find it difficult to focus on the good things when I am perpetually watching the clock to determine if it's time again to eat or test and then calculating how many carbs I should be eating at that particular time.

Still, I am doing my best to look on the bright side.  Having an ultrasound roughly every four weeks means lots of chances to see the Jellybean and weekly appointments let me hear the heartbeat.  I'm hopeful that as things progress, I will find it easier to take pleasure in this pregnancy instead of just wanting to get it over with.  Until then, I'll just trying to keep doing what I'm told and follow Dory's advice from Finding Nemo: "Just keep swimming, swimming, swimming, swimming..."

Dear Jellybean - 13 weeks 2 days

Dear Jellybean,

I want to apologize for not talking to you more before now.  To be honest, I was protecting myself.  It was hard to hope that you were really in there and doing well.  But today, you showed me.  You not only flipped around and waved your arms, but you showed the ultrasound tech a little attitude.  When they tried to go back for more views, you laid on your tummy and took a snooze, refusing to move.  When she did finally get you to move, you laid on you side, refusing to budge so she could see what she needed.  You are so like your sister!  Not surprisingly, you are tall, already blowing the curve at 13 cm (5+ inches) when pregnancy charts tell me you should only be 3 inches.

Seeing you today was amazing.  Don't get me wrong, seeing your heartbeat at the 6 and 8 week ultrasounds was incredible, as was hearing your heartbeat earlier this week.  But seeing you, looking like a little person, with a cute nose in profile and little limbs waving around, showing so much personality already, it made you real.  Really real.  I know you're in there.  Listening.  Learning the voices of your world--me, daddy, and Lil' Bit.  So, here's my promise to you--I'm going to try to remember to talk with you at least once a day.  Tell you what's going on out here as we get ready for you.  Tell you stories about me, daddy, and Lil' Bit.

This pregnancy has been harder on me than your sister's was, but that isn't your fault.  I need to remember to take joy in our time together.  All too soon, I will have to share you with the world.  Until then, I will do my best to make the most of our time.  I will do what I can to make us both healthy.  And, hey, the upside of the high risk pregnancy is an ultrasound roughly every 4 weeks, so we'll see you again soon.  Until then, I love you, my jellybean.  Whoever you are.  I can't wait to see who that is.

Love,
Mommy

My Reckoning

I have had a life-long love affair with sugar.  When I was younger, I ate 1 lb bags of skittles like they were a single serve and could down a dozen donuts in a single sitting.  It never occurred to me that eating that much sugar could cause problems down the road.  I simply assumed that you either had diabetes, or you didn't.  And, since I didn't, I was fine.  Now, I'm not saying that I would have changed my habits had I known the finer points of Type II diabetes, but it certainly would have left me a little more prepared for now.

So, I did the 1-hour glucose tolerance test and failed by a single point--needed 133 and got 134.  During my visit with the doctor about adjusting my meds, I discussed the additional anxiety I had over having to take the three-hour test.  We discussed my last pregnancy and I indicated that I had had gestational diabetes and been insulin-dependent.  She advised me that chances were strong that I would be again.  This made me sad, but at least she didn't pull any punches.  I took the 3-hour test last Friday and the results came back today.  They were less than stellar.  Whereas with Lil' Bit, I had only failed 2 of the 4 readings, which was sufficient for the diagnosis, I failed ALL 4 this time around.  For fasting, I needed 95, I had 96.  For the 1-hour I needed 172, I had 188.  For the 2-hour I needed 150, I had 154.  For the 3-hour I needed 135 and I had 146.  With the exception of my fasting number, these were not even close.  Ironically, it was my fasting number we had real issues with last time, so maybe this bodes well for being able to control it with diet and exercise this time rather than insulin.  Who knows.  But, since it's been 3 years since I had the diabetes class, I have to go again because "some things have changed."  I still have my meter, so I may be able to just use it rather than having to get a new one.  We'll see.

In any event, what is clear to me is that I need to make major dietary changes.  How I do this I'm not entirely sure.  I am not a huge fan of vegetables and those I like are the starchy ones.  I love fruits, but they are high in the sugar index.  I have already removed soda and french fries.  Although I indulged in a few candy bars yesterday in fear of the results today, I had mostly kicked those out of my diet, too, along with cake, cookies, and the like.  What I'm getting at is that all of the easy changes are done.  There are no more simple solutions.  I have to do the hard work now.  It's even more difficult because last time, since I wasn't diagnosed until 28 weeks, I ignored calorie counts and simply went with anything that didn't raise my sugar too far.  Thus, I figured out that I could have 2 McDonald's Sausage McMuffins with egg for breakfast as long as I took the top muffin off of both of them.  That would keep my numbers in range, which was all I cared about, never mind the huge calorie and fat content.  And then, I proceeded to eat that for many, many mornings.  This time, I'm only supposed to gain 15 pounds the whole pregnancy.  If you know anything about pregnancy weight gain, this essentially means I am losing weight during the pregnancy.  Not gonna happen if I focus solely on how food affects my blood sugar without regard for calories and fat.  

So, I have to do things differently this time.  I don't really have any choice.  I can't even console myself by saying I can stop after 7 months.  Given that this is my second time to have gestational diabetes, and this time I will have it for much longer, my chances of type II diabetes are increasing all the time.  I need to make changes now before it's too late and the diabetes doesn't go away when I'm not pregnant.  This sucks.  I hate it.  But hating it won't change it, and ignoring it won't make it not true.  This is my warning.  It's now up to me to listen and do something about it.  It's time to dig in and figure out how to do things right while I have a chance to protect my pancreas and stave off any more long-term damage.

Hello, Mr. Hole. We Meet Again.

These past few weeks I have been struggling, physically and emotionally, to get my life in order.  It hasn't really been working.  I tried catching up on sleep, taking time off work to get caught up, being good to myself, all of the usual things, but each day I have felt a little more in the hole.  Today, I was determined to make it a good day.  I got up, showered, got Lil' Bit to daycare, and headed off to work.  I never got there.  I got too overwhelmed just thinking about driving in.  I started crying too much for driving to be safe.  I headed home.  The worst part was, heading home made me feel worse.  I have always been capable.  People could (and did) say mean things about be, but I knew deep down that nothing they did could stop me from being capable and people would be able to see my ability.  My capability was my safety net, and now it was gone.

As I pulled into my driveway, I was racked with sobs as the negative thoughts flew through my head--"You weren't capable.  You couldn't make it to work.  You're useless.  How do you expect to take care of the kid you have, let alone the one on the way?!"  It was too much.  My mind looked up at the huge walls of the hole I had fallen into, curled up into a ball, and shut down.  It was frustrating and scary, but I am grateful that I was not so far gone that I could not see that this was a big problem.  It was my wake-up call.  I needed help.  I needed to up my meds.  Yet, even as I knew the truth of those statements, I railed against them.

"You're pregnant!"  I shouted at myself.  "You don't want to expose the baby to all that!"
"True," I answered myself, calmly and quietly, hoping to make myself listen to reason.  "You have done the best you could with that, but the time has come to say when."
"I don't want to!" I wailed petulantly.
"I know.  But you don't want to feel miserable and worthless either.  And you don't have to."
"I do want to be functional again.  Enjoy the life I have, the family and job I love..." I sniffled.
"Exactly.  You want to be you again."
I nodded, much like my toddler, hanging my head, knowing I was beat, but not wanting to concede just yet.
"It's okay," I comforted myself.  "This is not a moral failing."
"I know."
"Yes, but you don't believe me.  Yet.  But you will.  Once you're out of the hole, you'll look back and wonder why you fought so hard for so long, just like last time."
"But I feel like I'm taking the easy way out."
"You think this has been easy?  You did all you could.  You are a fighter.  But you can't out-think a chemical imbalance.  It doesn't work that way."

We sat quietly for a while--me, myself, and I.  And then I physically got up and contacted my doctor's office and left a message about getting my meds adjusted.  I hate feeling weak.  I hate feeling incapable.  But, I would hate myself more if I let things get worse instead of heeding the call and getting help.

And now I write.  I write so I can remember for next time, in case there is one.  I write so that maybe someone else can see their hole before it gets as deep as mine.  I write to remind others that they are not alone.  And, to be perfectly honest, I write to convince myself of the rightness of my choice--because I argue better in writing than out loud.  It's time to begin again, and find my way out of this hole.  And maybe, just maybe, now that I've seen this hole a few times, I don't have to fall in it again.  Here's hoping.