Tuesday, February 14, 2012

Our Sweet Sylvie and Her Broken Heart

Sylvie Annalise entered the world on January 19th, calmly and coolly after only four hours of labor. She surprised everyone by weighing in at 9 lbs 2 oz (but we all knew she'd be "tall" and measured 21 1/2"). She had the chubbiest cheeks! So chubby, in fact, they appeared to weigh down her face and crease her bottom lip. We found her absolutely perfect. 
But when Sylvie was only 30 hours old, we received a surprise visit from a cardiologist. Perfection is hard to come by in this world. He told us Sylvie has a congenital heart defect called Tetralogy of Fallot (TOF) that will require open heart surgery before she is six months old. It was quite a lot to take in on Day Two. I would look at her sweet, perfect, chubby face and seemingly healthy body and couldn't believe that something so wrong was going on underneath. I couldn't even say 'open heart surgery' without bursting into tears. 
Open heart surgery. Even now, nearly one month later, I still can't fully process this diagnosis.

To keep it simple, with TOF she has a hole in her septum (which divides the two sides of her heart), her pulmonary valve is narrowed, and her aorta 'overrides,' meaning it is shifted over to the right side of her heart. This combination causes her blue blood to mix with her oxygen-rich red blood. But infant blood carries more oxygen in it than adult blood, so her body is getting all the oxygen she needs. As she grows this will change. Each week we head to her pediatrician to have an oxygen saturation test and a weight check. Right now her percentages hover around 99% which is excellent. Every few weeks we will meet with her cardiologist so that she can have an echo-cardiogram and EKG. In about a month, we will begin meeting with surgeons. 
If all goes well, she will lead a normal, typical life. However, I have my bad days. Days when it is difficult to keep my mind from wandering into scary places. But God has shown himself faithful in wonderfully personal ways I'd like to share here in this blog. My little rock pile, so to speak (see Joshua 3 and 4). We are also beginning to feel more confident about what we are dealing with and what to look for the more we speak to her cardiologist. However, I expect the next few months will be an emotional roller coaster ride for us. 
Would you join us as we pray for Sylvie? Please pray that there wouldn't be any unforeseen complications or even more anomalies in her heart that we don't know about yet. Please pray that we would take the hand of God as he leads us through the process of finding the right surgeon for our sweet Sylvie. Pray that she would continue to gain weight and that we could wait to have surgery until she is six months old. Please pray that Sylvie would stay healthy and not catch a cold or any kind of illness. (She isn't more susceptible, but it will be harder for her to recover if she is sick and it will take quite a toll on her body if she does become ill.) Please pray that Shawn and I would relax in the presence of God, trust him, and look for him and his hand in the coming months. I believe God is so personal with us, he is always talking to us and showing us things if we take the time to look, listen, and be expectant. 

And praise God for her hefty birth weight--well on her way to 12-14 pounds, a more favorable weight for surgery. Praise him that we found this so early! Praise him that we live in a city with incredible doctors! Praise him that he is good and faithful and will never leave us nor forsake us.


  1. Thanks for sharing! Praying for you...

  2. Beautiful Monica...so eloquently written! You are all in our prayers.

  3. This took so much courage to write. I'm so proud to be your friend! Praying, as always.

  4. I was referred to your blog by a high school classmate, Sadie. Beautiful writing, and I will send up many prayers for your baby girl. My younger son, Daniel, was also born on January 19th (2011).

    God bless.

    1. Thank you, Marianne! Any friend of Sadee's is a friend of mine!! Blessings on you as well!