Friday, May 21, 2010
Sadie was born at home 2 days past her due date. Everything in my pregnancy and labor and delivery was normal...actually, so normal that my midwife told me I was clinically the perfect patient!! However, we found out later that I was Group B Strep (GBS) positive and didn't know it. We have, after MUCH detective work, determined that the infection (which was found in my placenta and all the way through the umbilical cord) must have stressed Sadie out, causing her to pass meconium, which was aspirated and caused Hypoxic Ischemic Encephalopathy (HIE).
Within minutes of being born, paramedics came to my home and rushed Sadie off to the hospital, where they discovered some brain damaged and then transported her to Phoenix Children's Hospital (PCH). PCH practices newborn brain cooling therapy and immediately got her on a cooling blanket. (HERE is an article about brain cooling and HIE, HERE is another specifically about the Neuro-NICU at PCH, where Sadie was) However, after 72 hours of cooling, they felt like she was still relying on the ventilator to breathe, MRIs showed VERY significant damage, and EEGs were showing continuous seizure activity, even with medication. We were told that IF she were to live her quality of life would be very low, basically she'd be a vegetable. So, we made the heart-wrenching decision to unplug her breathing tube and say goodbye, assuming she needed it to live. It was a beautiful day (and I cry as I write this remembering how hard that day was), all the most important people in our lives were there and everybody took turns holding Sadie...but she just kept breathing!
We spent the next 2 nights at the hospital, Sadie was all unplugged except for her umbilical line, and we all in a family room together. Brian and I took turns holding her all night, expecting that each little episode of apnea was "it"...but it never happened. The next day we started learning how to feed her through an NG tube and conversations with hospice happened in preparation of bringing her home. The day we were gonna go home, Sadie started waking up. We asked Dr. Carballo to do some tests and she found that Sadie was turning around. Her creatnin (sp?) levels were normalizing, which meant her kidneys were healing, and she was starting to cry a little, open her eyes a little, and even move her head some! However, her MRI and EEG hadn't changed, so the prognosis wasn't any different. They wanted to keep her longer (said some level of something was high which indicated there MIGHT be an infection, so they wanted her to stay on antibiotics another 7 days), but her umbilical line was out, and they couldn't find a vein, and since we had prepared ourselves to take her home, and everyone was over-emotional already, we just asked them to discharge her and let us go. We didn't expect her to make it through the week and we didn't want to spend that week back and forth to the hospital.
Sadie is now 4 months old, and she is nursing (that NG tube only lasted about 10 days!), she is cooing, she is holding her head up, and she's even starting to roll (from her tummy to her back) and swat at toys! She screams her head off in the car, but she sleeps 9-12 hours at night!! Now that we have calmed down a bit and realize that Sadie will be here a while, we're searching for information about HIE, and finding other families around the world to ask questions and find support (because sometimes it's scary to ask doctors...and a lot of times they don't know since every case is so individualized!). I'm excited and anxious and scared to see Sadie grow when there is so much unknown and such a wide range of what could happen. We hope to start therapies soon and hopefully that will help, and as time goes by we just wait and see and love her and pray and never never never lose hope.