All three of us are tired, very tired. Ellie was moving around a little bit more yesterday, but I think she must have wore herself out. She has been asleep most of the day today. Matt and I are doing our best, but sometimes lack of sleep catches up with us. I just woke up from about a nap on the couch in Ellie's room. I did not intend to fall asleep, but my body thought otherwise. I am staying here at the hospital the next couple of nights with Ellie. Honestly, it just makes me feel better. It's crazy to think but the first night we stayed here, I slept better than I had in days. I think it's just because I am that much closer to Ellie. If I could sleep in a bed with her, I would.
The other thing I am tired of is doctors. Or should I say doctors telling me things I don't want to hear. I guess maybe some of these doctors (let me be clear not all of them, there are still many of them who are compassionate), are numb to how it feels to have a child so sick. I know it's there job, but I don't know how some are so inconsiderate to a parents feelings. I know and Matt knows how sick Ellie is, but please all I am asking for is a little compassion when you speak to us. I told the doctor today who was rather in blunt in his conversation that there is always hope. At that point, he kind of just stopped talking and ended his visit with us. I think with some people, the mention of faith or the Lord, or hope, just stops people in their tracks. I feel for them. I hope and wish they knew the peace that we know Even though God might not always answer our prayers the way we hoped He would, He is always there. That is what gives Matt and I hope. That gets us through each day.
Ellie is doing ok today. Her blood gases are a little on the high end today. Please pray that this issue gets resolved. It's ok for her to hang in the high end for a short amount of time, we just don't want it to last for very long. I am looking at her right now and I just have to tell you all she looks so pretty today ( I know shes my daughter so I am biased), but to me and Matt she's pretty everyday. And she just blinked those pretty little eyes! We also have still not heard a word on the surgery yet. Please pray for answers for that. Please also pray for her pulmonary hypertension to not worsen, but get better. I know with God, like I said today, there is always hope. I am clinging to that each minute of each day. How could I not when I have this beautiful bundle of joy in front of me.
Love you all,
Ellie's Mommy
