I'm sure you don't often share publicly about your poo. When your child has been passing large amounts of blood for days, it is worth celebrating a brown poo. Praise the Lord, Hope's poo is now brown and the bleed appears to be under control once again. Shawn's jeans will need a trip to the washing machine as well!
Today has started out much better than yesterday. We continue to be faced with the reality that Hope's life is hanging on a thread, and she is in critical condition. Unlike yesterday, the doctor working with her in the PICU, is passionate about trying to save her. It's a breath of fresh air to work with a much kinder Intensivist.
A large team of doctors spent over an hour discussing Hope's multiple complications. We now have a plan for today and are ready to walk through it. Hope continues to be extremely uncomfortable. She is now on a new sedative and pain medication. We're hoping this will make the difference and settle her to sleep more often. Shawn and I find ourselves easily drained by the constant fussiness that appears to be impossible to settle. Hope is currently sleeping in her crib, her heart rate is back down and her breathing more controlled. Praise the Lord for the moments of peace that she experiences throughout the day.
We were informed today that intubating Hope would likely put her in more critical condition. Once she is intubated (if needed), the blood flow to the lungs would decrease and she would only survive for a couple of days. Knowing this, we are watching her oxygen levels more closely and begging God to keep her breathing stable. If she needed to be intubated, she would also likely need to return to Edmonton. This would be a precaution in case she needed to go on the heart and lung bypass machine. We are thankful not at this point.
Our cardiologist this week has been a true gift. She is honest, not trying to keep information from us just because it is difficult to hear. She is passionate about seeing Hope survive, no matter what the odds are against her. The medical team makes a huge difference each day for us. We are either blessed with doctors and nurses that fight for our girl, or others that seem to have already given up on her. The ones that have given up tend to see more of my angry side.
Last night as Shawn and I lay in bed, we talked about miracles. We spent time dreaming about how it would feel to walk in one day and find that Hope had a whole heart. How would anyone be able to explain that medically? Hope's surgeon has held her broken heart in his hands, there is no denying that it was only half there. If suddenly her heart was whole, only God could receive the glory for such a miracle. I can only dream and hope for a miracle so beautiful.
We are aware that our daughter's life span is not long. We realize that our days with her are precious and need to be cherished. For that reason, we pray that she quickly stabilizes enough to come home. Whether we are given years or months with Hope, we desire to create positive memories as a family. That is more likely to happen with us all living together in our home. We pray that it is not only possible, but that it will happen soon.
I feel completely exhausted. I find moments of joy throughout the day when Hope is settled in my arms or Sadie is giggling on my lap. Life is not always full of sorrow and tears, but it is exhausting just the same. I dread the fact that Christmas is quickly approaching, it will only make being away from family more painful. We need your prayers as our strength is 100% from the Lord and not our own. We do not have any strength of our own remaining.