Brothers, together at last :)
For the fourth consecutive day Charlie's miraculous recovery continued to impress his doctors, his nurses and his family. His physical appearance, and the difference since last weekend, is incredible. His edema is now localized exclusively in his lower extremities. His heart rate and blood pressure are trending toward normal levels with only moderate assistance from his dopamine drip. His kidneys with help from Lasix are functioning better with each passing day. The paralytic medication is still working its way though his body but he can now move his tongue, blink his eyes and wiggle his fingers and toes independently. Charlie's breastmilk feedings have been increased to 3cc per hour, and TPN (total parenteral nutrition) is being given intravenously. These will help him gain energy and enrich his diet beyond the simple dextrose fluids he has received since birth. He remains on the ventilator that so far has done virtually all his breathing for him. Charlie must demonstrate the ability to initiate breaths, inhale and exhale without assistance before he can go home. Today the doctors took out the last remaining chest tube and his peritoneal dialysis tube. The nurse also removed the dressing over his chest incision. The gauze and Tegaderm is removed because the exposure to air helps the scar heal faster. The incision currently runs the length of Charlie's newborn chest nearly to his belly button but as he gets older the scar will shrink proportionally as he grows. Seeing his incision for the first time was a mixed emotion. On the one side, it is a source of joy that his recovery post-Norwood operation is going very well. On the other side, the few sutures are a reminder that this journey is far from over and that in six short months the surgeon will reopen his chest again to perform phase two, the Glenn Procedure.
As Charlie's condition steadily improves we are finding out how difficult it is to live in the moment and take things one day at a time. We try to temper our excitement with caution and awareness that his situation remains critical. It is difficult to remind ourselves of the long painful journey that lies ahead as we celebrate each small yet significant achievement.
Also, our nurse, Amanda, gave Marina an early Mother's Day gift by pulling a few strings and allowing Noah into the CICU. For the first time since their birth, the twins were together in the same room. We snapped up two quick photographs, including our first family portrait. It was completely unexpected and a wonderful experience. At long last our family was together.
We also had quite a bunch of visitors. We had Josh's parents visiting, as well as Marina's sisters, and our niece and nephews. It was wonderful to have everyone together! It was truly a great day, and the best Mother's Day present a girl could ask for - a son healing, a family reunited, surrounded by laughter and love.
Lots and lots of love,
Josh and Marina
The boy cousins, minus Charlie
Cousin Maya gives Noah a hug
Mina, Noah, Felix, Patrick and Maya