Saturday, February 15, 2014

Hearts

We're snowed in for Valentines' Day!  And I don't mind a bit.  Lighting a fire, baking lots of goodies, snuggling close ... we're feeling the love!  The only downfall is the boys' Valentines' party at school was postponed.  So we'll have to wait a few more days to trade preschooler love notes.

Free printable from http://www.craftinessisnotoptional.com/2013/01/glowstick-valentines-and-more.html + leftover glow sticks from trick-or-treating.
Hearts are everywhere this week.  We had heart egg-in-a-nest, heart toast for our tea party, and I never realized how many of my girls' clothes have hearts on them as well.

Heart egg in a nest.

Tea and heart toast.
Heart scavenger hunting courtesy of Marmie and Poppa's mail package!
Yes, hearts are especially on our mind this week because on Tuesday Joci was introduced to her cardiologist.  At her 6 month check-up in January, the pediatrician detected a heart murmur and referred us out for further investigation.  I wasn't too concerned.  I had Julia with me and she was running around, touching the computer, playing with the blood pressure cuff ... so I just said, yup, okay, we'll get that checked out.  She's healthy and growing and it's probably just her heart trying to catch up.  Plus Uncle Micah has had a heart murmur all his life, and it's not a big deal.

I had to bribe them to stand still a minute after church before rushing off to put on their "comfy clothes."
So we scheduled the appointment for a late afternoon in February when Jon would be able to stay with the other kids and Joci and I could get a little time to ourselves.  A lot of time actually--the appointment ended up being over two hours.  I mean, picture trying to get the blood pressure of a 6-month-old who is in to grabbing everything.  Thankfully, we had a cheerful nurse who obviously enjoyed kids and was absolutely smitten with our girl.  We were able to keep her distracted with tongue depressors for the EKG.  We went through a lot of tongue depressors that day.  And then next was the ultrasound.  Another great tech, who happened to have a child herself so she had the room all set up with a Baby Einstein video for Joci to watch during the sonogram.

Julia wanted in the picture.
Jocelyn wanted Julia out of the picture!
Joci was a rockstar. Thirty minutes of lying naked on an exam table with a stranger running a wand over your heart, neck, and belly.  Thirty minutes of being next to Mommy but not being held by her.  Thirty minutes of tongue depressors, playing with cords, and smearing fingers in jelly.  And only about 5 minutes of crying.


It all brought back vivid memories of my many meetings with an ultrasound.  The dark room, the smell of that jelly, and the "whoosh, whoosh, whoosh" of a baby's heartbeat.

Finally, the tech finished, I scooped my baby back up in my arms, and she did what she always does when she desperately wants to be held and Mama finally responds -- wraps her left hand around my arm, circles her right arm around my neck, grabbing a handful of skin with her nails, and buries her head in my shoulder.  And then we hung out in the examination room, went through every toy in my bag, a few more tongue depressors, nursed, and waited.  I could hear the tech talking to the doctor next door, but not what they were saying.  But it was certainly a lot.


Finally, the doctor came in to discuss Joci's  history.  How often she eats, does she take a bottle, has she ever had any other medical problems, what about other members of the family ... Then she started  talking about heart murmurs.  How many are "innocent" but others are the symptom of a more serious condition.  And that's when I started to realize the latter part of that statement was referring to my baby.

Joci has a hole in her heart.

The medical term for this is atrial septal defect. It means that the "wall" between the left and right atria of her heart did not completely close after birth as it should have done.  There are many different kinds of "holes-in-the-heart" but in Joci's case, as she grew and more blood started pumping through her body, the hole got bigger (there are small, moderate, and large holes and Joci's is "large.")  As the hole got bigger, more blood from the left atrium flowed into the right atrium, which increased the amount of blood flowing toward her lungs, which in turn caused the heart murmur.  In addition, this put more pressure on the right side of her heart, causing it to dilate.

[For visual learners, you can see a full diagram here.]

Watching the snow fall in wide-eyed wonder.
At this point, I'm still tracking with the cardiologist.  We have a few friends who were born with small holes in their hearts that closed on their own eventually.  This isn't anything I haven't heard of before.  But then the cardiologist says that Joci's condition will not improve on its own and that we will have to do something to close the hole off before it gets worse.  Thanks to modern medicine, there are two ways to do this:

(1) insert a catheter into her thigh through which to transfer a small clamp to her heart, shutting off the hole.  (I don't fully understand it, but it amazes me nonetheless!)  Or

(2) open-heart surgery.

Although both would require her going under anesthesia and staying overnight at the hospital, the first would be much less invasive.  We would certainly prefer the catheter but the cardiologist wasn't sure if she'd be a good candidate because of not having enough "tissue" on the left side of her heart.

I was doing okay up until this point.  Joci was pulling my hair, grabbing my face, and trying to give me kisses.  Meanwhile, I'm nodding my head, filing it all away to tell Jon later.  I didn't want to think about it.  I just wanted the facts and then to get home and process it all in peace and quiet.  But when the cardiologist started talked about anesthesia, and overnight hospital stays, and that I wouldn't be able to hold her for a little while afterwards, much less breastfeed for a day or two ... well, that's when it started to hit me.

So that cardiologist stopped talking, patted my knee, and said look Jocelyn.  She's still a healthy and happy baby. And she's right, despite being long overdue for a nap, Joci was her smiling, giggling self.  Nothing had changed, but everything was different.


We made it home, though I barely remember the drive.  She passed out before we even pulled out of the parking lot.   Naturally, Jon wanted to know how the appointment went as soon as I walked in the door.  But the other three kids were extra-excited to see me because it meant they could finally open their Valentine treats that Marmie and Poppa had sent.  So I shared bits and pieces of what the doctor had said in between screaming children and flying paper.  Because that's just the way our lives are right now.

The doctor would be meeting with the whole cardiology team on Friday and they would discuss Joci's case then.  We were to find out Friday night just when to expect the surgery to take place and whether or not she'd be a candidate for the catheter procedure.  It was a torturous 72 hours.


Overall, we're doing okay.  Joci was up most of the night on Tuesday with a fever and stuffy nose.  So she slept in our bed.  She hasn't been sleeping well all week actually.  It's starting to take its toll.  And I'm stuck in the middle of "don't want to create bad habits" and "I just got hit with such a heavy dose of reality that I never want to stop holding my baby."  While she has been symptom-free up to this point, one of the things they said to watch for was respiratory distress or difficulty breathing while nursing/doing strenuous tasks.  So, of course, I now think that any weird noise she makes means she's  not breathing.

On the plus side, it's easy to be distracted in this house.  Hours can go by without me even thinking about it.  But then we slip into the nursery to settle into the glider together and I'll start mulling it all over, trying to picture just what exactly it feels like to put your daughter's life in the hands of a surgeon.  It's hard.  I mean, when it comes to my babies I work so hard to stay out of hospitals, avoid medical interventions, to let them thrive off of breastmilk, never have to take a drop of medicine ... And to say that's going to change is quite the understatement.  But the worst, the absolute worst, thing in my mind is letting her go.  Sending her off to go through one of the most significant ordeals of her life and not even being there to hold her.  It absolutely crushes my mama-heart.  So we've had a few low moments over the past three days, and by "we" I really mean "me" because Joci hasn't a clue what's going on.  She just knows that all of a sudden Mommy and Daddy are hugging and kissing her just a wee bit more.  Eventually, instead of dwelling on my fears, I began using our nursing time to make a list of everything we're thankful for in the midst of all this:

  • We caught it early.  Many children don't find out they have ASD until they are older, some are even in their teens.  We're thankful for a good pediatrician that heard the murmur and had it looked in to.
  • That it's completely curable!  Heart defects are scary, and open-heart surgery is serious, but once the hole is patched she's considered "cured" and we won't have to worry about this ever again!  It also won't impact her life in any way, so she's free to play as many sports as she likes. :)
  • Joci's a healthy baby.  She's strong, the fact that her heart is working harder hasn't yet affected her growth, and we're not dealing with any other issues or diseases.  She should have a complete and fast recovery after surgery.
  • We currently live close to a great hospital.  Right now, we're working with the Johns Hopkins Pediatric Cardiology team.  I'm not sure it gets much better than that!  Furthermore, our military healthcare covers 100% of our medical costs.  I just can't imagine going through something like this with the added burden of finances.


Friday came and the cardiologist called earlier than expected, right at the same time that Joci was crying, Julia was whining for a snack, Jack was beating up on his brother, and Jude was not happy about it.  So I ran upstairs, through my room, to the bathroom, and locked two doors behind me.  Thankfully, it was a short conversation.  The team decided that Joci did not need surgery right away and that we should wait until she's a little older and bigger.  So we're to bring her back in this August to have her heart checked again to make sure the hole is not getting worse.  I suppose we'll find out what's next at that time, but for now, we're not looking at surgery for at least another year or so.  Also, the catheter interventionist thought that Joci may be able to have that procedure (rather than the open-heart surgery) which is excellent news!

I confess, I'm a mix of emotions.  On one hand, I'm grateful that she'll be a little older and being separated for hours on end won't be as big of a deal.  But on the other hand, she'll be much more aware as a toddler.  Also, I really just wanted to have this over and done with so we could move on.  I'm not looking forward to spending the next year or so with my daughter's health constantly in the back of my mind.  But I trust that the doctors know what's best.


All that said, we do have a few prayer requests for our sweet, little girl:

  • Complete healing.  I believe that God is the Great Physician.  He formed Joci in my womb and he can continue to form her out of it.  I'm praying that when she has her next appointment in six months that the hole will be completely gone!
  • I also know that God can work miracles through people.  The first infant heart surgery took place in 1944.  If we were living more than 70 years ago, there would have been no cure for my girl.  So I'm thankful for the miracles of modern medicine.  If it is God's plan that we walk through this, I'm praying for wisdom for the doctors--especially for decisions regarding the type of procedure and when it should take place.
  • That Joci, and the rest of our family, would be a blessing to the doctors and other hospital staff and a testimony of God's love and grace.
  • For peace for our home.  That there would be no fear or anxiety during these next few months of waiting.
  • And finally, for our upcoming orders.  We are literally in the "we should hear any minute now" phase of transfer season.  We want what's best for Jon's job, what's best for our family, and what's best for Joci.  We're considered "special needs" at this time, but we have no idea just how exactly that will impact our next move (or "not move").  I would say the waiting is tough, but as long as I don't know I can pretend it's not going to happen. :)

I'll close now.  Thank you for indulging me.  And thank you, in advance, for your prayers and support.  Valentines' Day 2014 will certainly hold new significance now for our family and our little heart baby!

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