We are facing our worst nightmare.  My cousin, Jennifer, summed up Mae’s coming procedure well in an email to family. Since I’m emotionally shot and somewhat of a zombie, I’ll let her words speak for me now. This is the email she sent yesterday…

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I’m pretty sure the entire world heard my sigh of relief yesterday. Perhaps you misconstrued it as a gusty afternoon breeze, but I assure you, that was ME!

The baby is fine! FINE. They checked for neural tube and cleft palate defects first and everything looked totally normal (upon which yours truly got all verklempt) and then measured out legs and arms and heads and hearts. Okay, just one head, one heart. You know what I mean.

Funny enough, the only possible problems discovered weren’t with the baby but with me, though it’s nothing serious. The placenta’s lying very close to my cervix, about 1 cm off to the side, so we’ll be keeping an eye on that as I get huger just to make sure it slides away over time. No biggie.

The other problem? You really want me to share? REALLY? Okay, you asked for it. (Actually, I think I just heard a resounding chorus of, “No, no, PLEASE DON’T SAY!”, but I figure if I can share all my drama, trauma and day to day wackiness with the whole internet, why not go just a little… lower?)

Turns out an annoying ache I’ve had is actually a varicose vein that’s popped out in a VERY UNPLEASANT LOCATION. I’ll leave that to your imaginations (you’re welcome!), but I have to share the doctor’s thrilling news upon this diagnosis.

“Well,” he chirped gleefully, “The good news is it’ll disappear as soon as you give birth. Other than that, you can expect it to get MUCH BIGGER AND MORE PAINFUL until then.” Then he SMILED at me. Like it was, you know, FUNNY.

Come a little closer, sir. I’ll show you funny. Let’s see what it takes for me to leave you with a nasty throbbing ache in your unmentionables. ha. ha. HA.

Twenty weeks this week, halfway there. Today is my big ultrasound, the one to which most moms look forward eagerly. It’s a chance to see your little one “in person”, so to speak, and many families learn the color of the tiny baby clothes they’ll be buying soon. Pink or blue?

For me, though, there won’t be any color revelations. We’re not finding out the boy or girl surprise until this little person slips out into fresh air and its father’s strong hands. Hopefully, that is.  Not unless there’s something wrong. And there lies my guilt and anxiety.

Because, small though the chance may be, there actually couldbe something wrong. If so, it’s because of me. I made a decision when I first found out I was pregnant, knowing the risks, to continue taking my mood stabilizing medication. It’s not approved for pregnancy (it’s actually an anti-epileptic, of all things) and is linked to an increased incidence of a few different, some very serious, birth defects. The increase, as the doctors keep telling me, is only a few percentage points above that of the general population. My midwife, God bless her, told me she’s had several women on my medication go on to have perfect pregnancies and perfect babies. It’s not the worst medication I could have been taking. Hell, if this had happened a year ago when we were still experimenting with pills left and right, things would have been much worse.

The chance is small. But it’s there and it haunts me. We, Kurt and I together, decided that the balance of risk was more to me than to the baby. If I stopped taking my medication, my psychiatrist warned me, I could become very sick, very quickly. I’d be no use to a baby, much less my other children or my husband. Finding a balance in life is sometimes the hardest thing anyone ever seems to seek. I had to balance my health over the small risk to my child’s health.

We’ve obsessed over every medical study, interrogated my doctors to the point of exhaustion. We chose for me. I have continued my meds every day and truth be told, I will continue them through breastfeeding, as well.  It wasn’t a choice I wanted to make, but then again, no one really gets to pick and choose their conflicts, right?

Everyone says, “Don’t worry, it’s fine, of course everything’s fine, you’ll see.” But really, what parent doesn’t worry when there is a risk? From sleeping safely those first months of life to stumbling with those first steps, falling off the jungle gym to getting behind the wheel for the first time on their own– any risk to your child is nerve-wracking (in the least!). A risk you could have possibly prevented? Well… that’s even harder.

So there you have it. My ultrasound is today. We aren’t looking for girl parts or boy parts, we’re looking for a whole person. Whole and healthy and well-formed. I’m perfectly happy to settle for green and yellow onesies as long as everything is ok.

If it’s not, well… I want to know. Eventually, there are enough unknowns to last a lifetime.

How I wish that title had to do with my heart being so full of joy that it hurt… but the title actually has to do with Mae’s heart.  It’s not quite right.

In a nutshell, here is what happened last week and also some information about what we’re dealing with.

Last Tuesday, I decided to take Mae to the doctor because she seemed to be having trouble breathing when she ate.  She made a lot of honking noises. Dave and I thought she had a cold. When I got to the doc, they put her on an oxygen monitor, which is standard. Well, they quickly discovered that her oxygen saturation levels were very low. So low that they called an ambulance and loaded both of us into it and sent us to Children’s Hospital.  Needless to say, Dave and I were shocked and terrified.

We got to Children’s and were immediately taken to the NICU. My brother, Jason,  is a perfusionist in the cardiac unit there so he had a team of people ready to see Mae. Over the course of the next four to five hours, Dave and I cried and prayed at her bedside as specialist after specialist came to look at Mae.

Suffice it to say that the next few days were some of the worst of our lives.  After many tests, we now have a better idea of what we’re dealing with, though really no definitive answers on how to handle it. I’ll start with the simple issues and get to the bigger ones.

Mae has a “floppy voicebox.” (There is a medical term for it but I can’t spell it.)  This is a rather common problem and should be able to heal itself but Mae also has reflux which irritates the voice box making it harder to heal. So, she is on reflux meds. This is the reason she honked when she ate and, actually, the reason we took her to the doctor. If she hadn’t had the honking,  I wonder how long it would have taken us to discover the fact that her oxygen was low. The voice box issue doesn’t affect her oxygen levels.

So, docs began looking at her heart and lungs. While her heart is structurally fine (hallelujah!) she has a couple of issues. First, there is a hole between the two top chambers.  This alone would not be good but it MIGHT heal itself with time.  The bigger issue is that she also has a long piece of tissue in her heart that is “shunting” blood through that hole, forcing blood to go in the wrong direction through her heart and keeping it away from the lungs where it would get oxygenated. With the blood constantly being shunted through that other hole, it has no chance of healing on its own.

The question is, will that extra piece of tissue shrink? That is what we’re hoping for. However, we have also learned that this is so incredibly rare that there is nothing written about it and the head cardiac surgeon — doing this for 25 years — has never seen it in a baby and only once in an adult. (The docs hinted that they may write it up for journals.)  So, no one can give us a standard course of action.

After six days in the NICU, the cardiologists sent us home on oxygen for two to three months and we’ll do a lot of cardiac visits to check on it throughout. If it doesn’t shrink, they will begin discussing heart surgery with us. A prospect that, as you can imagine, I cannot even think about right now. My brother is involved in very complex surgeries all the time and he says this will be an “easy” one… but you don’t talk to me about opening up my baby’s chest and heart without expecting the wrath and fears and tears of a terrified mom.  He knows that now. :)

So, after a horrific week, the family is together at home again.  Today is our first day back and it has been anything but relaxing. Ordering oxygen, plowing through mounds of insurance and doctor paperwork so that we hit every appointment and requirement, fighting with insurance over her reflux prescription, trying to entertain Delaney and Allie, then just the night time feeding routine of a newborn.  Shoot, I still have that sticky crap on my back from the epidural.  It’s a blur.

I will try to use my blog for updates as we have them. It’s been terribly hard to keep up with all the calls and well-wishes, but please know that we appreciate EVERYTHING. The prayers, the love, the help.  We just may not be able to respond in the near future. OH! And we’ll be keeping visits to the bare minimum for several weeks because Mae is very susceptible to germs when she’s on oxygen. If she gets a common cold, it could turn into RSV and land her in NICU again.  I plan to be hyper-vigilant.

But for the moment on this sunny but brisk Monday afternoon, Mae is comfortable, still eating like a running back, and super-stinkin’-cute! I plan to find a way to indulge in that joy again very shortly.

Tonight, while watching ‘House Hunters International’ (my new favorite show), my youngest daughter looked up at me with serious blue eyes:

“Momma”

“That’s my name, don’t wear it out!”

“Momma…”

“That’s my name, do-”

“MOMMA!!!!”

“What!?!!?!”

(sigh) “Momma, ”

(I bite my tongue)

“…what if you said or did something bad, wouldn’t it be great if you could rewind and start over?”

Well, YEAH!  Like today, I would rewind back to before I got cranky and started hollering, or threatened spankings in the bathroom of the restaurant where we had breakfast, or the altercations when we got into at the aquarium, and the nagging that started when my older daughter had an asthma attack (“you shouldn’t have been running around so much!!”), or the hollering (due to crazy, hyper children and thus a spilled root beer) that commenced again once we returned home. 

I would ab-so-TOOT-ly rewind today.

In fact, I would rewind a lot of my life as I never seem to do or say the right thing the first time around.  My five year old is apparently much wiser than I.

If you had ‘do-overs’, what would they be?