Update

She's fought her way through her first 24 hours, the very most critical post-op. We still have under 48 hours to go before she's kind of "out of the woods". I've become a "monitor watcher", a parent whose eyes never leave the monitor, paranoid at every beep I hear or when I see any number drop. I ease drop on the nurse's phone calls and then grill her on what she said or discussed with who and why. Any time a nurse opens her medical drawer that holds additional medication I jump all over her asking a zillion questions. A little paranoid? Perhaps, with very good reason.

Yesterday the doctors and her 2 nurses worked on raising her blood pressure. A low blood pressure means her organs aren't receiving the proper amount of oxygen and if this happens long enough they shut down. To keep it lowered they almost continuously pumped fluid into her. Because she's so sick her veins don't hold the fluid, rather it leeks out into her tissues making her extremely puffy. Other than that her little body seemed to do okay with no major alarms.


Here's a little tour of what's keeping her alive. This is the ECMO machine that basically acts as a bi-pass and dialysis machine which is basically life support. With out this machine she would only have a 10% chance of survival. How it works is deoxygenated blood leaves the tube on her left, runs through the machine and then returns on her right with the oxygenated blood. It's acting as both her lungs and her heart. The nurses, surgeon, doctors, and ECMO tech are pretty vague on what exactly it means that she's on this. From my asking questions and researching it on-line I've learned that only the very worst cases need this machine. She is so critical that this machine is used as a last resort. She's hanging on but barely, maybe by half a hair. Not to sound dramatic but it's the truth.





These funny contraptions are pumps that pump her medication. 13 pumps in all and 4 drips. The monitor in the back ground is for her vitals. This is the machine that beeps when things aren't right, the one I can hardly peal my eyes away from.

This is her sprinkler system of tubes. This picture shows only most of her tubes, there's still more, they're just hiding.

The smaller monitor on the left measures the oxygen to her brain, the upper number, and the lower number measures oxygen to her kidneys. The larger monitor is for her ventilator, it displays different setting and numbers all associated with her breathing.

This little contraption is a pace maker for her heart. Yesterday she was pre-heart attack, her heart was beating in the 180s and it should be in the 140s-150s. Fortunately today it's 158. This machine helps her heart beat at a certain rate and in a certain way.

Today the ECMO tech has been able to pull off a teeny, tiny bit of her extra fluid and she's been handling it farely well. But other big things are going south, her kidneys aren't functioning and her left lung is collapsed. The nurse says this is normal but a part of me wonders if she said that to make me feel better. I don't know what to think. Ignorance is bliss but excruciating. There's so many questions I want answered but I don't want to go to those places right now. The doctors are extremely concerned with her puffiness and the goal over the night is to decrease it as quickly as she can tolerate. Her nurse estimated she has an extra liter of fluid. A liter on her tiny body! I measured her head, when she was born it was 13 in, today it measured at 15 1/4 in. She's so big her diaper can't be fastened and she can't open her eyes. Her ears even touch her shoulders. Poor baby! To add to the issues her ART line (a line in an artery where blood pressure is measured and blood is drawn) isn't working properly. Normally it would be very simple to take this line out and put another in at a different location. The problem with switching locations is her blood is extremely thinned because of the ECMO machine and bleeding is a huge issue. It's an issue anyways but to do a "procedure" increases greatly the chance of bleeding. I know this is a downer post but that's how I feel, down, and this is our reality. I know we aren't in charge and neither are the doctors. I know no amount of effort can save her if she's called home. It's painful to watch...waiting...praying for the slightest improvement, even if that improvement isn't visible. I look at her little body, so sick, so on the verge...I hope when she's healthy and in our arms I can look back and see the lessons I was suppose to learn.