Slow but steady

Princess Tara is progressing daily. There have been many steps forward:

• Transitioning from the oscillator ventilator to a regular ventilator that only controls inspiration
• Discontinuing all antibiotics except one
• Being taken off nitric oxide
• Being taken off Fentanyl drip to regular doses and lessening of Versed--weaning off sedation
• Lowering of ventilator settings daily: oxygen level, amplitude, breathing rate
• Increased alertness and responsiveness
• Transition from TPN IV nutrition to orogastric tube feeds
• Increase in daily tube feeds to full volume and elminination of TPN IV nutrition
• Decrease in secretions/suctioning; Lung scans becoming clearer
• Removal of one IV and PIC line

Now we are at a stage where she is just healing and for maybe a week she will still be on the ventilator with no more major steps foward for us to look foward to in the daily report. She is so strong and makes me so proud, and I feel so horrible that I cannot do much of anything to comfort her. My presence seems to stimulate her more, and right now the more restful state she is in the better. I keep my contact with her brief and mostly sit in the chair and watch her from a distance. They will probably jump straight from a ventilator to nasal O2 cannula and skip CPAP...which means I can hold her as soon as that happens. Until then it kills me to watch her become so agitated. She cries silently because of the tube in her throat, and sometimes after a diaper change it takes her 45 minutes to calm down!

I miss her like crazy. I love my time with my son but it is so incomplete without her here and it is like a giant hole in my heart. I don't want to miss anything. I want to celebrate every moment, even if it is not how I wanted it to be. So after being in a funk several days I'm forcing myself to take pictures again, even there is someone missing.

I am so incredibly grateful to all the help from family in this difficult time, even if two of them got colds and got kicked out of the house. I am also very appreciative of the meals brought by friends from church and the Metrocrest Parents of Multiples club. Adjusting back to life at home has been difficult and chaotic, but with the ability to just pop a meal in the microwave at anytime and freeze the rest to keep me going all month has made it infinitely easier.

There may not be any updates for a while, but we just have to be patient for Miss Tara to heal up when she is ready.