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.

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