Progress & Goals

With every ounce of progress we are closer to the day Evie can come home!!

Here is a wonderful drawing of our family by Valerie.  Notice that every person has earrings and a necklace (two lines coming out of the faces.)  Valerie also tried writing our names (blue scribbles near each head.)  Below is the current status of Evie's progress and goals for healing.

Progress

• Evie is now receiving full fortified breast milk feeds down into her tummy!  This means that her digestive system is healthy overall.  Feeding will also help her liver recover little by little.

• Evie is breathing very well, and may come off her ventilator in the next couple of days!!! (Trying no to count my chickens before they hatch. . .)

• Evie's neutrophils (white blood cells) have come up from zero to 320.  The normal count is 1,500 but her doctors will be very happy if she reaches 500.  This means she gets to stay on the antiviral med which prevents hearing loss.

• Most important:  Evie acts more and more like a healthy little baby: She yawns, stretches her arms way up, and even turns her head.  She loves to suck on her breathing tube and hands- She's practicing for the day she gets to try a bottle!  Today she grasped her little ear while she slept- adorable.

Goals

• Evie is puffy again due to the virus causing fluid build-up . . . poor thing looks like Jabba the Hut's baby!  She is on an oral med that will help, but we want it to go down on it's own to prove that the virus is subsiding.

• Liver, liver, liver.  Evie's liver enzymes are way too high, she needs medicine to help her produce bile, and her body is bright orange due to bilirubin build-up. Evie's liver is very enlarged which affects her ability to breathe on her own, and may contribute to her spleen swelling/trapping platelets.

 

Here is little Evie.  April 10th.

Here is our "healing wall" in Evie's NICU room.

This is Evie's "crib" and all her robot friends who help her heal.

p.s. Valerie is potty training!  Jelly beans help motivate her to practice sitting and even go in the potty sometimes!