Mom to Naya Jane
July 24, 2011 – September 14, 2011
Naya was born on July 24. She was a beautiful 7lb, seemingly healthy baby. My husband and I fell in love immediately. The only thing that was a little off was the fact that she had some feeding problems in the hospital and didn’t poop the first couple days. They told us not to worry about it and released us on the 25. We went home and started to get used to our new life. Unfortunately, Naya was still not eating or pooping. We took her to the pediatrician on July 26 and she gave her something to make her poop and told us to follow up with a lactation consultant about the eating. I told her it didn’t seem to be a breast feeding specific issue – Naya wasn’t interested in food at all – but we made the appointment anyway. We saw the lactation consultant on July 27 and she also found it odd that Naya had no interest in eating and encouraged us to go back to the pediatrician the next day. I should mention that during this time, we were forcing her to eat and she was spitting most of it up and still not pooping or peeing. We went back to the pediatrician on the 28th and they told us to increase feedings to every two hours, which we did to no avail. After she threw up every feeding that night, I had enough and we took her to the ER. The ER took an x-ray and thought she had a bowel obstruction, so they wanted to transfer her to a larger hospital in Santa Barbara with a pediatric surgeon on staff. That’s when she started vomiting up bile and, we believe, aspirated some of it into her lungs. After stabilizing her, we got on an ambulance and drove down to Santa Barbara. When we got there, they had a hard time stabilizing her in the ER and rushed her to their PICU. The rest of that day was kind of a daze but they intubated her, stabilized her blood pressure, performed exploratory surgery (and didn’t find a bowel obstruction) and luckily, started her on antibiotics in case she had an infection. I didn’t realize how close we were to losing her that day until a couple days later. Turns out, she was in septic shock and had pneumonia.
Naya spent 10 days in the Santa Barbara hospital until she had to be airlifted to Children’s Hospital in LA. She spent the next few weeks fighting for her life and dealing with further infections, collapsed lungs, numerous pneumothorax, severe chronic lung disease, pulmonary hypertension, chest tubes, unstable blood pressure, kidney issues and a whole myriad of other things that resulted from that nasty e-coli that poisoned her entire body. She fought long and hard and we believed in her and decided that as long as she wanted to fight, we would let her. On September 14, we walked into the hospital to extremely low oxygen saturations and a blood pressure that was continually dropping. We knew that her poor little body was giving up its fight and we decided to end her suffering. We gathered our family and held our precious little girl as they removed the tubing that was keeping her alive. She breathed her last breath in our arms.
There isn’t a day that goes that I don’t think about my sweet little girl and wish that she was here with me. I don’t, however, regret our decision. Living life hooked up to machines was not the kind of life she was meant to lead. Her spirit is now free and not suffering. We still aren’t sure how this all happened as we haven’t gotten autopsy results back yet. Due to the fact that they didn’t find a bowel obstruction or anything wrong with her gut in general we believe that she either had a meconium plug that went undiagnosed or was infected at the hospital with e-coli. We probably will never know for sure.
During our time at the hospital and even after Naya’s death, I blogged about our experience and received overwhelming support and love from people all over the globe. It warms my heart to know that Naya touched so many people in her short little life. She had caused people to rethink their lives and hold their families and friends closer. She has caused people to come together in love rather than hate. That’s more than most people accomplish in a lifetime. If her story helps even one person prevent this from happening to their baby, then it was worth sharing. It may not cure my heartache but it helps. Naya has taught me patience and that I have a choice in life. I can choose to be sad and depressed or I can choose to go on and never take life for granted. To kiss my husband and son as much as I can and tell them how much I love them. To be thankful for the wonderful people there are in this world despite all of the hardships we face. It may not seem like it but we are going to get through this. For Naya.
Jamie blogs at http://notesofnaya.blogspot.com/
You can contact her at firstname.lastname@example.org