Day 104 How to condense today in just a few sentences is a challenge! Its been a big day! Important part is Gods timing of Cylees heart cath and the fight He put in our Cylee is saving her life. Cylee is out of surgery and surgeon tells us that lots of surprises WERE found during her heart cath. Lots of terms used that I dont have my mind around yet and there is no game plan for a fix yet. The high-level surgery team meets on Wednesday afternoons and Cylee will be a priority tomorrow with that team. I will update you as I understand. I did understand that she has a pulmonary vein desaturation which means she has too much blood flow to her lungs and this Momma has been telling them that and that my baby is drowning. All that Cylee has been going through has not been her lungs but has been a heart issue! This is all serious stuff and Cylees life is in the hands of God with the help of a team of strangers trained to work on these tiny infants and their tiny body parts. Bryan and I are encouraged not to touch or talk to Cylee as they want her to stay calm and her knowing of our presence arouses her. Thats a big order for Momma and Pappa Bear! She will remain intubated until the swelling from yesterdays bronchoscopy goes down. She is hog-tied from every limb of her body. Down babies have a high pain tolerance which is causing her to require much pain medication to stay sedated. This is very, very hard on those of us just watching. My mom says, to her, the pediatric cardiac ICU is the closest to heaven you can get. That is, there is a spiritual atmosphere in Cylees room. It is quiet; it is dark; it is cold and it is only one tiny little baby breath away from heaven.
Posted on: Wed, 22 Oct 2014 03:22:20 +0000
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