Thursday, April 1

Rebecca and I began noticing some inconsistencies with Claire’s behavior and asked the nurses about them. She was having trouble focusing on eating and had sporadic reflexes and motions---behaviors not necessarily uncommon among newborns, which is why we thought she was fine for two days. On Monday March 29, she tested high for jaundice and was placed under UV lights for treatment. She is strong and able to remove her eye protection during some of her sporadic motions. I had to adjust her position and eye wear about every five minutes. That evening, we asked that Claire be taken to the nursery so Rebecca and I could get some sleep. The nursing staff observed her having seizures and transferred her to the NICU. She was placed on a drug called Phenobarbital to stop the seizures. Tuesday morning she had a CT scan that identified she had some hemorrhaging in the left frontal lobe of her brain. They then gave her an EEG to confirm her seizures. Fortunately, this is a treatable seizure disorder. Infants are biological adaptation machines. Claire’s brain will be able to compensate for the minor damage. In most cases like this, babies end up living normal healthy lives. The trick for now is balancing the level of the medication against normal behavior. Phenobarbital acts as a sedative and is somewhat restrictive to allowing Claire to feed normally. Over Wednesday, Claire began showing signs of building a healthy resistance to the medication and began bottle feeding. This Morning, Thursday April 1, she had her feeding tube removed and we expect her to be removed from her IV sometime today. We hope to be release from NICU by the middle of next week. Please continue your prayers. They really do work! She is improving with every day. EEGs and anti-seizure medication will be a regular part of our lives over the next year. So I will try to offer consistent updates on her progress. Thank you for love and support. It warms our hearts that we have such dedicated and loving family, friends, co-workers, and clients.

As you continue to read through the updates, you will see that our journey is still in progress…