Last night was terrifying for me. Lily was taking a nap when all of a sudden she woke up screaming for me. I got up out of the chair next to her bed, confused as to why she was looking right at me but had no clue I was there. I consoled her thinking it might be a nightmare when her panicked voice said, "Mommy, I cannot see you". I got closer to her face and said, "Lily, mommy is right here, can you see me now?" Sadly, her panic and anxiety only grew and she screamed, "I am upside down...help me Mommy....I am upside down!" I ran out of the room in search of a nurse. The ICU nurses are always right there, but no one could be found. I finally located one and told her Lily needed a doctor immediately. Within seconds two doctors ran into her room and started accessing the situation. My mind was running a million miles a minute. "Please God, no, don't take our baby", was on repeat in my head. A desperate prayer straight from a terrified mother's heart.
With Lily still having a 6mm blood clot in her heart, the reality is that at any point and time the clot, or a piece of the clot can dislodge and go to her brain. I have tried, and succeeded the past few days of pushing this reality out of the forefront of my mind. But it is always there. It will probably always be there. The CT scan showed no major brain bleeds or blood clots. However, the doctors are still concerned since the CT scan is not effective at locating minor bleeds or clots. It was also discovered last night that her antithrombin 3 levels are very low, even with the high doses of heparin she is receiving. They gave her an extra bolus of heparin, and started her on additional IV blood thinners.
Lily is in a lot of pain. She has been vomiting since Friday morning, has extreme diarrhea with belly pain, excrutiating pain in her head, weakness, and an overall "yucky" feeling. In the midst of how horrible she felt, this morning Lily spontaneously said, "Mommy, I love you!" This began one of the sweetest conversations I have ever had with her. I love this child with every ounce of my being. Lily is truly the strongest, bravest, most determined to live and "get outta here" little girl I have ever met.
I don't know what God's plan is for her life,
but I do know that being her mommy has transformed my life.