Wednesday, June 9, 2010

Home, James

Zoe visited CHOP this morning for her final EKG, ECHO and vitals check before receiving the green light to go home. The EKG and vitals were good, ECHO gave us one more thing to worry about. On the ECHO, the cardiologist noted that the lower portion of Zoe's shunt (the left pulmonary artery branch) has narrowed since the placement of the stents. She stated that this is not totally uncommon, given the location of the stents (at the top of the shunt.) Basically, the 2 stents caused the lower portion of the shunt to torque/pull up a bit - meaning Zoe is at an even higher risk for developing life-threatening clots in her shunt. Zoe's doc informed us that Zoe will need to remain on the Lovenox (injectable anticoagulants) until her Stage 2 surgery ("the Glenn").

The Glenn typically takes place anywhere from 4-6 months. Given the ECHO results today, they want to perform Zoe's Glenn closer to 4 months, and possibly even sooner if she's ready. "Ready" is defined by weight, so the faster Zoe gains weight, the better. Per Dr. Spray, Zoe's cardiothoracic surgeon, performing the Glenn at or before 4 months helps to reduce interstage deaths. Please continue to pray for our sweet princess that she has no complications between now and her Stage 2 surgery. As all heart moms know, making it to the Glenn/Stage 2 surgery is when everyone can breathe a sigh of relief. Zoe is not out of the woods yet. She still has a long, long road ahead of her.

She is an amazingly strong and beautiful little girl. We are so proud of her and happy to be heading home tomorrow. We'll then be able to settle in at home and resume a "normal" life.

This afternoon, Caleb and I will be packing everything up to head home, including this beast of an oxygen tank. The doctors refer to it as "portable", however, I don't think that is a good descriptor!

For the first time, two days ago, I went out for my first Philly-Zoe shopping spree. While at H&M, I found this little outfit for Zoe and couldn't leave the store without it.

Zoe already has her first slew of doctor's appointments scheduled upon our return home. She'll likely be visiting her cardiologist, Dr. John Stock, on a weekly basis.

Although, we are all more than thrilled to be going home, the departure is bitter sweet - more sweet than bitter. We've grown to love the City of Philadelphia, the comfort of CHOP and our new heart family - some of whom came and left before us and some of whom we are saying goodbye. Many of my fellow heart moms have expressed their survivors guilt upon leaving. Both Caleb and I feel that guilt; particularly when saying goodbye to those still struggling at CHOP. Each day is a battle at CHOP. Many battles are won and sadly, some are lost.

I'd like to take this opportunity to thank my fellow heart moms and their brave and strong children whom we've come to know very well - through laughter, frustration and tears. Kathy and her sweet son, Jacob; Jen and Ray and their twins, Mia and Madden; Joy and her daughter, Jilly; Christina and her fighter, Emma; Senalda and her son, Charlie; Lisa and her twins, Jack and Nathan; Christa and her daughter, Gabby; and Laura and her angel, Gwen. I thank you all for your words of wisdom and strength. You've made us stronger people and better parents. We're inspired and in awe of each and every one of you and look forward to continuing our friendships outside of these CHOP walls. Heart hugs to you all.

Tomorrow will be a long, stressful day of travel followed by several hurdles to overcome in the next few years. Zoe's Stage 3/Fontan procedure, which will be the final stage in reconstructing her heart, takes place between ages 2 and 3. Please continue to keep us in your thoughts and prayers often. We'll continue to update our blog and let you know what we're up to.

Now, Home James!

Much love and appreciation,

Caleb, Stacey, Emerson and Zoe


  1. I'm so excited for you to return! I will be thinking about you constantly until I hear that you are home safe and sound. I can't wait to meet Zoe when she is well enough to have visitors. Love you all!

  2. It will be great for you guys to be back home! Hope the travel ends up being a little easier than you anticipate-- it will be a long day! Can't wait for more blog entries from AZ! (And what a great outfit you found for Miss Zoe!) BG

  3. Love the new outfit! Wishing you safe travels. Miss Zoe is a trooper. I bet Emerson can't wait to see mommy and daddy, and likewise. Remember to breathe.

  4. Welcome Home! Please keep us posted on Zoe's progress. We are thinking about you daily.
    The Mayer Family