Thursday, August 12, 2010

Good News, Bad News

The good news is...Zoe's made weight. Much like a boxer makes weight for a professional fight, Zoe needs to make weight for her next fight - the Glenn/Stage II surgery. Research shows that infants weighing 5 kg (or 11 pounds) experience optimal outcomes post-Glenn. Zoe is now 4.95 kg (or 10.89 pounds) and still has at least 3 weeks before undergoing her second open heart surgery. Yay Zoe! Don't get me wrong, it ain't easy. As any heart mom will tell you, it is a stressful job - trying to get your CHD baby to eat. I'm so proud of Ms. Zoe and the fact that she's done it all on her own, with no tubes!!! She is one of few HLHS warriors that make it on oral feeds alone. I gave her props today and she smiled right back at me with a look like, "yeah, I know."

(A long overdue thanks to Deb and Mary for the Zacky Hand!)

Now, for the bad news...a virus. For the past week, Zoe's bleeding after her Lovenox injections increased. She typically does not bleed or bruise, however, lately things have changed. Any change, as I've harped on before, is not a good sign. After a week of "you may just be hitting a vein/artery" explanation, I called CHOP's hematology department for some advice. They took my concerns rather seriously and recommended Zoe get blood drawn - a CBC and Anti-X-A (anticoagulation) testing to check her platelet count and Lovenox levels. We all know how much mommy hates taking Zoe to get her blood drawn, so daddy was in charge. Caleb and Zoe left the house and I felt pretty certain that all would be fine.

Each time Zoe needs blood drawn, we have to request a specific nurse at her pediatrician's office...Lisa. Lisa knows Zoe quite well these days. She knows that Zoe is stingy with her blood, that her right hand is the only place she'll give it up and only via catheter. Even though Lisa knows the tricks of the trade, Zoe still screams like a mad woman. (Example A: why mommy doesn't handle blood draws very well. Way too stressful. She's been through enough already.)

Caleb called me immediately following the blood draw. Thankfully, the pediatrician's office has its own lab and returned the CBC results right away. All Caleb needed to hear was "a virus" and panic set in. He texted the cardiologist who requested a copy of the CBC asap. Then, he called me to give me the bad news. Great, now we're both in a panic. We know all too well how one little virus can threaten the lives of heart babies. We've experienced the loss of a heart baby recently, due to a virus, and immediately thought of sweet Gwenyth when I heard "virus." Our cardiologist (here in Phoenix and at CHOP) were emailed the results immediately. Much to my surprise, neither of them were "too worried." Zoe's white blood cell count, platelets, hemaglobin and hemocrit were normal. The lymphocyte (one type of white blood cell) was elevated which does usually indicate a virus. Zoe is not showing any signs of illness and continues to eat like a champ. We're on high alert (when are we not?) watching for any slight changes in her behaviors.

Long story short, more prayers and happy thoughts please. We need Zoe to stay healthy as a horse until her Glenn in September.

Oh, and remember in my last blog entry when I mentioned we were going to drive our cardiologist's secretary mad. Well, we must've succeeded. Knowing tomorrow is Friday, the day we typically call for a surgery date, our cardiologist pre-empted my call with a short but sweet email, letting me know that she called the scheduling center and they still do not have a date for us. She stated that Zoe will need a pre-op appointment and a cardiac cath a few days prior to surgery. The cardiac cath department is holding up scheduling and she will know "in the next two weeks." TWO WEEKS!?!?! Does she realize it's mid-August already?! Okay momma, breathe :)

So, we continue to wait. And Hope. And Pray. And ask that you do the same.

And to end with some great news...Zoe's HLHS friend from CHOP, Jacob, underwent his Glenn on August 5th. He amazes all of us and sprinted out of the hospital in 6 days. Can you imagine? A 4 month old undergoing open heart surgery and bouncing back in 6 days? Amazing. Zoe and I had a nice sit down talk and I told her that Jacob is setting the bar awfully high. Again, she smiled right back at me like, "yeah, I know."

Love to y'all, as always, from Mommy and Zoe.


  1. WOW, congrats Zoe!!! I know how hard it is to get to that 5kg mark when you don't have any help from tubes! We worked so hard in the hospital to get Bodie to that mark and then he zoomed right past it, so they sent us home to grow him some more and give his little body a break before the Glenn. We're now at almost 6kg!!! So we're right there with you - and TOTALLY stressed and wanting them to schedule the Glenn now - so I totally understand! Hoping they schedule it soon - and her virus passes quickly!

  2. Stacey, Ms. Zoe looks great, and so do you by the way! Hope you get your date for the Glenn real soon and she too is home in 6 days, as you said it is so unbelievable Jake was able to come home so soon. Prayers answered for sure! Gods hand is in play here, and we are so very thankful. Hope Caleb and Emerson are well and I so love reading your blog updates..... Go Team Zoe....<3