Feeling Discouraged

We are discouraged. To say that today is a low day would be an understatement. It certainly feels that we have taken several steps backwards in our trek to get Tessa home. Unfortunately, she is very sick but on a positive note, it is a blessing to know the cause of her illness. It is just very difficult to repeat so many events that we assumed were behind us.
Currently, Tessa is receiving a blood transfusion. She is very pale and anemic and the transfusion will provide her with more hematocrit and hemoglobin to carry oxygen. Once again she has a Hep-Lock in her hand for receiving the transfusion and an IV in her head for receiving fluids and liquid nutrition. Earlier they inserted an artline (arterial line) in her other hand for collecting blood samples but it stopped working so later this evening the respiratory therapist will attempt to install another artline in her leg. She has had numerous heel pricks throughout the day to collect blood samples and the artline will eliminate the need to prick her heel each time a blood sample is needed.
She is receiving sedation (ativan and fentanyl) as needed to keep her comfortable and a bronchial dilator inhalant as needed to help her respiratory system. An x-ray earlier today showed only partial lung expansion and her blood gas test showed elevated carbon dioxide levels. After an adjustment to her ventilator settings, her latest blood gas test showed more desirable blood carbon dioxide levels. To help open her lungs they will probably use a chest percussor or chest PT device to tap softly on her chest wall.
Again, we are blessed to know the cause of her illness but it is very discouraging to see her reconnected to all of this equipment. We would certainly take the illness on ourselves if it were possible. God has blessed us with an awesome NICU staff and many of them have been involved in Tessa's care and our encouragement today. Thanks to all of you. Nurses Emily and Shirley have been Tessa's primary care nurses today and love her as if she were their own child. We pray for courage in face of adversity, wisdom in determining a course of action and healing for Tessa at this moment and in the days to come.

Matthew 14:27
But straightway Jesus spake unto them, saying, Be of good cheer; it is I; be not afraid.