The last year and a half

June 24, 2013 mommytoaheartkid


Technically the last 16 months…. We’ve been living in our apartment, and we’re leaving here on Saturday to move into our very own house! So, I figured I’d update, and back track, and pretty much just write some stuff down because if I don’t, I’ll forget.

As far as CHD in the last 16 months: what CHD? Seriously.  I don’t even remember if it was last July, or the July before that, that Ava had a heart cath and a device placed in a leaky baffle in the Fontan pathway. (Say that three times fast!)  We saw the cardiologist in February, made plans that next year Ava would need a holter monitor (which up until then we have avoided, and yes I know that is written in some weird tense that isn’t even a tense), and a cardiac MRI.  Honestly, I’m kind of excited.  I want new cool pictures of her heart, and I’m pretty okay at reading EKGs, so bring on the monitor! But Ava, on the other hand is not going to be very excited.  She claimed after this last visit to cardio that she was just “never going to see Dr. Moran ever again” and mostly because she didn’t like me telling her she looked like an octopus while getting her EKG.  (Ooooh, one of my nursing instructors would be SO mad right now, they are eCgs!!! C-CARDIO-C, not K!!!) Anyways, that’s the plan.  And I think at that point, we’ll also be able to switch her Enalipril to once a day! Joy! So, yup, we’ll see him next February.

He was supposed to email me! I also re-read all of her medical records (yes, I request and keep all of them, and I suggest it to ANY parent–especially those with not perfectly healthy kiddos), and found out that she has a congenital fenestartion of the basilar artery in her brain.  No, I don’t have a clue what it means, No, cardio doesn’t have a clue what it means–and it’s usually found in an autopsy (BUT NOT AS THE REASON OF DEATH!) but hers was found on her MRI/MRA after her stroke.

Moving on.

The pulse ox bill– Yay! Excitement here!  Really, I started working on this almost 3 years ago.  To make pulse oximetry screening mandatory on all newborns, and I cover the state of Maine. (There’s a whole bunch of kick ass moms and dads that are working to make this mandatory in every US state).  Well– it passed UNANIMOUSLY through house and senate last week!  And this is the part I’ve been worried about, the part where it’s sitting on our lovely governor’s desk. If you’re curious, Google, you’ll be in stitches, or nauseous, I promise one or the other. ANYWAYS!  It’s on his desk–and he has until the 29th (Saturday) to veto the bill.  If he doesn’t, it becomes a law without his signature! Thank god for an awesome sponsor of this bill, because I still have no clue how legislation works.  And–an even cooler piece to this, is that most facilities in Maine are already doing pulse ox testing–and I, as a student nurse, had my maternity rotation last semester, and I actually got to perform a few pulse ox tests!!!  How awesome!

Speaking of–I finished my first year of nursing school.  I’m on my way to earning my Associate’s Degree, so just one more year!  Then, yes, I am continuing, online for my BSN.

So, we met a lot of really awesome neighbors this year.  No, no I’m lying.  If you’re friends with me on Facebook then I’m so sorry that you had to hear about their antics all this time.  We are/were living in an apartment complex with 9 apartments in each building, 11 buildings, across the street from a college, in a college town.  yeah, smart move for a family…

It occurred to me earlier today, that I have known some of you since I was living at my in-laws, a whole 16 months ago.  It doesn’t seem THAT long, but a lot sure has happened.

What stands out in my mind this year:

Ava learned about God, and on Father’s Day had a question she really needs an answer to: “If God is our real father, than who the heck is Dad?”  In other Ava news, she decided 4 was actually the perfect time to act like a terrible 2 year old.  I have scars to prove it, kidding, kind of.  She also is really mad that she is not going to school next year.  She’s been ready for kindergarten for a year now, yet doesn’t turn the big 5 until December, meaning no kindergarten this year.  She grew about a foot, and still weighs as much as a 2  year old, weighing in at 30 pounds. Ha.

What else happened?

We got a cat. Ghost.  (Again, if you’re friends with me on Facebook, I’m sorry for the million pictures–but he’s MY cat, and I love him.)

And then, for the the last two weeks, I painted.  And ripped staples out of a hardwood floor, and painted, and cleaned, and painted.  If I never paint another wall again it will be too soon.  Seriously.  But we are really looking forward to living in and enjoying our new cute little cape!

Entry Filed under: Uncategorized

Leave a comment

Trackback this post  |  Subscribe to comments via RSS Feed

Congenital Heart Defect Awareness

Congenital Heart Defect Awareness

Congenital Heart Defect Awareness Congenital Heart Defects Life with a CHD Tricuspid Atresia Uncategorized

Life with a CHD

beautiful daughter cardiologist visit CHD CHD Congenital Heart Defect Congenital Heart Defect Awareness Congenital Heart Defects Congenital Heart Defect surgery fear anxiety fear life strong Fontan Fontan Surgery Fontan Surgery CHD found out diagnosis tricuspid atresia problem surgery Giving back heart defect surgery Heart kid life life CHD life heart tears Life with a CHD life with a CHD fear life surgery scared worried life with a chd life struggles life with CHD Living with CHD Living with Tricuspid Atresia PICU