mia on wednesday - three days old

Today is Wednesday. A fact I know only because I was reminded by someone recently. Mia has been on the ECMO machine for 48 hours and is still stable. Her blood pressure and gas levels are where the doctors would like them to be and she is tolerating the machine well. The ECMO machine itself, which has its own nurse, is also doing well. There have not been any issues with clotting or any other complications that could arise from using an external machine as a heart and lungs.

The plan at this point is to stay the course. Mia's lead doctor feels she is doing well on the ECMO and would like to keep her as is for at least a few more days. When her heart and lungs are strong enough, she will be slowly weaned off the ECMO machine and rely only on the ventilator to help her breathe. I have read in some cases that corrective surgery can be performed while the patient is still connected to the ECMO, but since Mia is so fragile, the doctors want her to be weaned completely from the ECMO before attempting any surgery. Mia's blood has been thinned quite a bit to avoid the clotting issues that can arise from circulating her blood through a plastic machine, so attempting surgery with her blood so thin is too risky.

This is our baby girl. Looking past the tubes, needles, and tape, she is our beautiful little girl. From the outside, she looks perfect in every way. Two arms, two legs.  Ten fingers, ten toes.  A headful of hair.  Just by looking at her, you would never know the problems she has on the inside. She is quite puffy, especially in her head and face, because of the fluid she is retaining. She is heavily sedated and cannot be moved from her current position because of the tubes inserted in her neck. Since the tubes are connected directly to a main artery and vein, any disruption to the tubes could quickly become fatal. We have been allowed to touch Mia, on the top of her head only. We cannot stroke her skin or touch her fingers because she tends to respond too much. As much joy as it brings me to see her move, the risks involved with her movement are too great.

We call Mia our "Edwards" baby, while Laci is our "Silva" baby. Unlike her big sister, whose complexion and features are dark, Mia is much more fair. Her hair is light brown and even looks a bit curly, though it has now been combed down. She has light eyelashes and eyebrows, and pink, fair skin. She has the tiniest, cutest nose...one of the first features I noticed when she was born. I long to see her little face in its true form, without the puffiness, tubes, and tape. But for now, I take comfort in knowing that the puffiness, tubes, and tape are just a necessary part of the journey to a healthy baby, which is what I long for most of all.