Latest Genetic Test is Negative

It has been a whirlwind over the past few days so we are just finding time to update you on Kayla's progress.

Kayla began physical therapy on Sunday afternoon (8/7) to try and get her muscles moving. She has not responded to the therapy yet but we are hopeful that it will help to strengthen her muscles over time.

Jeff was finally able to hold Kayla on Sunday night. It was such a sweet moment to see the two of them together. Even though she is almost 5 lbs., she looked so tiny in his arms.

On Tuesday (8/9), we got news that one of the genetic tests came back negative – thank God. That night she began respiratory therapy to help strengthen her lungs which will hopefully help to keep her from getting pneumonia which is common for babies who are intubated.

On Wednesday (8/10), Kayla had surgery to put in a catheter behind her right ear. This allowed the doctors to remove her umbilical arterial line. The surgery went well and they said that this would allow us to hold her without significant risk. However, we had to leave Kayla’s bedside the rest of the evening because of the death of another infant in the unit, so we were unable to hold her. It was a very sad night for everyone, but especially for the family of the baby girl who passed. It really brought home the reality of how sick the babies in this unit are.

Today, Kayla had an extremely rough day. Her left lung collapsed this morning, her blood platelet count dropped to significantly low levels and she had to be transfused. They also heard a heart mummer which they are monitoring. We should get results back on her EKG in the morning. Tonight her top right lung collapsed and her CO2 levels skyrocketed. She had to be switched to a more powerful ventilator which breaths 420 breaths per minute for her. This required them to fully sedate Kayla. In the last hour her vital signs have been a little more stable so we are hopeful that she will begin to improve and regain use of her lungs.

Kayla is still unable to digest food which is very discouraging. They are giving her lipids and fluid through an IV to try and maintain her weight but are hoping that she will eventually be able to process the milk. They are considering running a weighted tube directly into her lower bowel to see if that will help.

Thank you again for all of your messages, prayers and support for our family during this difficult time. We ask that you please keep our sweet little Kayla in your prayers.

Love,

Lisa, Jeff & Kayla