Our Story

*I would just like to interject (in my own story) that this post is woefully out of date.  We now have FOUR kids.  Someday I’ll get around to updating this.  Someday.

I never thought that this would be my story.

I always figured that I’d have a relatively uneventful life.  A husband, a couple kids.  Maybe even a goldfish.

Don’t get me wrong.  I got it good.

Real good.

But, my story is just that: my story.

My husband and I had our son Henry the day after our 5 year wedding anniversary.  He was born 3 weeks early and weighed a paltry 5 lb. 9 oz.  (Despite my 45 pound weight gain!)  Soon after birth, they detected a heart murmur, but we didn’t worry.  After all, 30% of babies are born with murmurs…that go away on their own within 2 weeks.

As I’m sure you’ve guessed by now, his didn’t.  Turns out he had Pulmonary Stenosis.  We visited a Pediatric Cardiologist 60+ miles away, about every 3 months.  Each visit was torture.  We were told early on that our little boy would need heart surgery…and that it was all just a big, fat waiting game.  They wanted to wait as long as possible for him to get bigger, but not so long that it caused him trouble.  Every visit I was sure we would be scheduling surgery.  Visits came and went, and we kept being told to just come back again in a few months.  Tor. ture.  In the meantime, I couldn’t find much of anything on the web about any of this.  The good news was that Pulmonary Stenosis was the “best” of the heart problems to have…and the procedure he would undergo was the “easiest” of the surgeries he could face.  The bad news was that none of that did anything to calm this mama’s heart.  I didn’t know what to expect, I didn’t know how to prepare, I didn’t know anyone going through this.  Even online discussion groups didn’t welcome me very much because my son had a “simple” heart defect.  I didn’t fit in with the mama’s whose babies had major, crazy multi-syllabic conditions.  While I was thankful in many ways that I didn’t “fit in” with these groups, I still felt really alone.

When Henry was 15 months old, we got pregnant again.  We were jazzed.  And even though I had no reason on the planet to think so, I couldn’t get the idea that I was having twins out of my mind.  My husband poo-poohed my hunches and told me I was crazy.  Must be the hormones.  (Wanna make a pregnant woman turn into a raving lunatic?  Blame her moods/thoughts/actions on hormones.  Try it.  Works every time.)

At our 12 week ultrasound, we saw two wiggling dancing little babies.

Much cussing and crying ensued.

Who does that???  I am *not* the twin mom.  That is just. not. me.  Twin moms are supposed to be chill and calm and collected.  SO not me.

Apparently I didn’t get the memo that it didn’t matter what *I* thought about the whole thing.  Weird.

Fast forward to May 21, 2009.  Henry’s heart surgery.  It was here.  I was 33 weeks pregnant with twins.  My doctors freaked out.  They had me pack my hospital bag to have in the car.  They printed all of my medical records to take with me.  They were concerned that the stress of my 23 month old son’s heart surgery would put me into labor and I’d be having my babes prematurely at UCLA Medical Center…a few hallways over from my baby boy.  200 miles from home.

Luckily for me, that didn’t happen.  In fact, Henry’s surgery was about as easy as any surgery could be.  His recovery was almost non-existent, the babies stayed baking, all was well.

And the girls kept baking…and baking…and baking.

And before I knew it I was doing jumping jacks, drinking raspberry leaf tea, and even having sex to try and get them out.  ::Shudder::

Finally, at 38 weeks 6 days…3 weeks after Henry’s second birthday…I gave birth to two beautiful girls.  Lucy was 6 lbs. 6 oz.  Jill was 6 lb. 9 oz.  My 5’2″ frame somehow managed to carry 13 pounds of baby.

My stomach muscles will never forgive me.

My girls were full term, beautiful…and no signs of any heart troubles.  Woop woop!

And then Jilly, my chubby one…my perfect little nursing champ…quit nursing…

…and then she started shivering…and shaking…and basically looking like she was altogether having little seizures.

Transferred to the NICU, she spent 4 of the longest days of my life there.  While I was home recovering from an infected and oozing c-section wound with Lucy.  My twinless twin.

After being seen by a Pediatric Neurologist and who knows how many other specialists, the doctors deduced that Jill had suffered oxygen deprivation at some point during the pregnancy or labor.

Her liver enzymes were crazy high, her blood acid levels were through the roof…and she shivered and shuddered through a tightly swaddled blanket.

Constantly.  As in, pretty much non-stop.  Break. your. heart.

Slowly her liver and blood numbers returned to normal, and her shivering…slowly…slowly…stopped.

So far, Jill is doing pretty good.  She’s a happy baby.  Her eyes will bore a hole straight through to your soul.  But coordinated movement is hard for her.  Her muscles are weak.  She still has trouble holding her head steady, and sitting, walking, crawling…those will be a while.

Jill continues to have twice weekly therapy appointments.  She is being seen by a neurologist and orthopedic surgeons and a whole team of specialists I never imagined I would ever meet.

We don’t have a formal diagnosis yet, but everyone seems to point to Cerebral PalsyIt’s still hard to see those words. We are holding out for a mild case…but ultimately praying for a full recovery and NO diagnosis.

For now, it is all just one big, fat waiting game (sound familiar?).

No mama ever wants to be an expert.  I have no desire to know so much about the workings of a human heart or the details of infant development and brain synapsis.  Some days I am tempted to be bitter.  Others I cry in overwhelming thankfulness.  It’s a roller coaster for sure.

Our life is crazy with three kids within 25 months.

A life with specialists, a million appointments, therapy sessions, and medical bills is not what I ever dreamed of.

But it is still such a precious, amazing life.

It’s just been rearranged a little.

{And if you really want to kill more time on the internet today, you can read Parts 1, 2, & 3 of how I met my husband…oh, and the Proposal too.}

jeannett
I'm a mom to four. A wife to one. I believe in story. I love telling you about mine and would love to hear yours. There's really no sense in wasting our suffering and not sharing in each other's joy. We're all in this together...even if it doesn't always feel like it.
jeannett