Kayla is Begining to Process Food

On Wednesday (8/17) Kayla began to show some signs of recovering from her infection although she was still lethargic and her face was still pretty swollen. She was finally able to begin processing my breast milk and was able to have the amount increased to 2 ml/hr by the end of the day. The doctors are still bypassing her stomach and feeding her through a tube directly into her lower bowel but hopefully, they will be testing her stomach again soon as she can’t be fed through the tube forever.

Thursday (8/18) was a turning point for Kayla. Her food was increased to 4 ml/hr and they began turning down the supplemental nutrition that she has been fed through her IV’s for the last 3 weeks. She had an x-ray of her stomach which showed no abnormalities and an x-ray of her lungs which were clear and still fully inflated. Both my mom and I were able to hold Kayla for extended periods during the day. Kayla was tested off of her bed warmer several times and was able to hold her own temperature so they turned the heater off permanently. They will hopefully be moving Kayla to a crib in the next few days which will be great since we can cover it and protect her from the harsh lights that she has been exposed to 24/7 since she was born. Kayla also had her first sponge bath and looked so cute and clean! Her facial swelling seemed to finally be going down. I added a new picture to the photo gallery (the last picture) that really shows a big difference in her swelling.

Today (8/19) Kayla had her best day ever and we are hopeful that this means the beginning of real progress. One of Kayla’s IV’s was able to be removed and they are hoping to remove her last IV in the next few days after she has finished her final dose of antibiotics. The doctors decided that they did NOT need to put another Broviac catheter in her head so she will NOT have to undergo more surgery this week. Phew! They began the process of removing her life support systems and she seems to be handling the changes well. She is still intubated and breathing with the assistance of a ventilator but they are lowering her levels daily. Kayla’s food was increased over the day to 9 ml/hr and she seemed to be tolerating it well. We are still waiting on the latest set of genetic tests to come back regarding her muscle weakness. We expect to get some information in the next week or so. Unfortunately, if the tests come back negative, they will have to do a muscle biopsy on Kayla. It is a pretty invasive procedure where they remove a portion of her muscle tissue from her thigh and test it for a number of disorders. The doctors have decided to wait another week or two for her follow-up brain MRI & CT scans to make sure that there is enough time to show the changes in her brain development.

Jeff, my mom and I were all able to hold Kayla again today. She had her right eye open for long periods of time during the day. We were also able to dress Kayla for the first time today and she looked so adorable in her pink onesie and booties.

Jeff and I are hanging in there thanks to all of the support and love that have been coming our way. We feel so grateful to have all of you in our lives.

All the best,

Lisa