Saturday, May 15, 2010

Take this ventilator and shove it.

After spending most of the late night and early morning tugging on her ventilator, telling the doctors, in her own way, that she was ready to have the ventilator removed, the doctors acquiesced Zoe's wish and they removed her ventilator early this morning. She is still on 40% oxygen, but she is doing very good. They also removed the dressing on her chest, so now you can see her battle scar (and pretty eyes):

Zoe made some more progress today in terms of eating, she took two small bottle feeds and kept most of it down. For a normal baby, feeding is not usually an issue, but for some reason children with HLHS often have problems with eating, so introducing eating and progressing with feeding can be a source of worry.

Now that Zoe is coming off the last of the sedation, and opening her eyes with more frequency, she was able to see all the visitors she had today: grandma and grandpa Muenich, grandma Lihn, and uncle Brian.

The plan continues wean the oxygen until Zoe breathes completely on her own without any assistance. Also, to continue her feeding and hope that she takes to bottles. If she is unable to tolerate the bottles or doesn't take to it, the doctors will insert an NG tube to provide nutrition.

We have received several positive comments via email, Facebook, and this blog. We both want to emphasize that the positive comments are extremely encouraging and helpful. I wish we had time, and energy, to respond to all of them, however, at this point we don't. But we do read all of them and very much appreciate the support.

Please continue to send positive thoughts and prayers that Zoe continues on a path of healing and conquering the limitations she was unfortunately dealt. Also, please pray for the Carpenter family, Laura and Myers. Stacey met Laura through Facebook. Like us, Laura and Myers found out at their 2nd trimester ultrasound that their baby suffered from a congenital heart defect. The defect was different than Zoe's, it was a rarer defect called truncus arteriosus. Like us the Carpenters also planned to travel from their home to Philadelphia to deliver their baby and have the necessary surgery at CHOP. Little Gwen Carpenter was born on March 17, 2010. Dr. Spray performed surgery on her on March 19, 2010. After breezing through surgery and recovery, Gwen was discharged from CHOP on April 5, 2010. We learned today, however, that little Gwen's heart condition was too much for her to overcome and she passed away this week at the age of two months.

This was difficult news to ingest, to say the least. We were never able to personally meet the Carpenter family, but between Stacey's emails with Laura and following their family blog, I felt like we knew them. They say surviving a congenital heart surgery is a roller coaster ride full of ups and downs, for both the afflicted child and the parents. You always know that death is a possibility. We were told that when we received Zoe's diagnosis, by one of the cardiologists, and before the surgery. Gwen's parents were told the same thing. That doesn't mean you expect it or truly understand the risk. We thought Gwen cleared the major hurdles and was on a good path to living with her condition, as I'm sure her parents did. For one reason or another, however, and without much warning, Gwen's body decided it could no longer fight the battle. This is terrifying. Every time we look at Zoe, even though she appears strong, there is now the more realistic thought that her body could turn on her at anytime. Will I get to watch her go to kindergarten? Will I get to see her graduate from high school? Will I be able to walk her down the aisle at her wedding? I don't have an answer to these questions. If I have any say in the matter, then emphatically, the answer is yes to every one of them. The statistics say that Zoe has a good probability of surviving this condition and living into adulthood. But, as Gwen taught us, life is fragile. The next day is not promised, for anyone. It is exponentially more fragile for one afflicted with a congenital heart defect.

I am thankful that we have Zoe in our lives, she brings us unmeasurable joy. She has already endured more than I can imagine, and certainly more than I've ever been forced to endure. I am so proud of her, I can't even put it into words. I can't promise the future, but I can hope like crazy. One thing I can promise, however, is that I will never take a day with Zoe for granted. Zoe, we love you.

Again, please continue to send positive thoughts and prayers to Zoe for her continued recovery from surgery and a long, happy life. Please also send prayers to the Carpenter family during this incredibly, devastating time for them. Also, thank you to all who have sent kind words of encouragement and support, they help us through each day.

We will continue to post updates. In the meantime, here are more pictures of Zoe, to enjoy:

Zoe and Uncle Brian:

Emmy and Uncle Brian:

Zoe with Mommy and Grandma and Grandpa Muenich:


  1. i had the best day because i got to meet this lil girl. and it is no joke - i got to look in her eyes and i tell you she is determined to win! there is a fight in her gorgeous eyes and spirit around her that is pushing her through! i have to admit - i was really nervous to see her like that, but after i talked to her and stared into her eyes and saw how beautiful she is and i could see her heart beating through her chest... i was relieved and was able to walk away much calmer b/c she is going to make it through this thing without a doubt! i can't wait for you all to meet her b/c. I have never been in the hospital once in my life for anything ( except for when i was born of course) and i have no idea what it is like - so to see this new born person fighting as strong as she is and making progress and moving around and coming to life after such a trauma to her body - makes me so encouraged and inspired by her! i love you zoe! u truly live up to your name! - uncle brian

  2. I am a friend of Brian's and found your blog via Facebook. I am so struck by your strength, humor and positive attitude. Our little boy spent some "extra" time in the hospital upon his birth too. These babies are strong fighters. Your Zoe will come out a winner, I'm sure! Lots of positive thoughts and prayers - Jessica

  3. Baby Zoe looks so strong, you can see in her beautiful eyes. That is great news that she is taking her bottles. We have to check on her first thing everyday. When you watch your sweet baby go through a heart surgery it really puts everything else in perspective and you look at life completely different- we can't wait to meet her. -The Mayer Family

  4. I love reading your updates, Caleb, and I continue to pray for Zoe. She really is a beautiful baby, and her eyes show an inner strength that even I don't possess. I wish I was there to meet her but I am sure I will meet her in the not too distant future (although too distant for my liking!). Missing all of you and thinking of you always. Lots of love, hugs, prayers, thoughts, etc. from Phoenix! Dave sends his best.


  5. Working at Phoenix Childrens Hospital, I am daily in awe of the patients and their families. It is an honor to serve them. There is so much love, so much hope and so much determination in them, they inspire us daily. Stacey and Caleb, your new daughter is beautiful. Her strength, along with yours, is a joy to follow. Thank you for sharing with us. Our thoughts and prayers are with you.
    All our best,
    Linda Avner