Got Health Insurance?

After our last appointment at 14 days old we were informed that Areli didn't qualify to be under my insurance and everything we had done we needed to be paid out of pocket for and we could not continue care until our account was paid. Areli was officially uninsured and we needed to get her to the doctor because her jaundice had gotten worse.

Her skin was EXTREMELY yellow, her eyes were yellow. Since we didn't have health insurance I held off getting her to the doctor until our application for Medicaid was approved. Days turned to weeks and my poor baby kept getting yellow, however she was acting like a normal newborn so I convinced myself to wait until our insurance went through.... Until one day she uncharacteristically slept for about 14 hours straight without being very interested in waking or eating. Despite no insurance, that Monday 7/30/12, I took Areli to the E.R. at Rocky Mountain Hospital for Children at Presbyterian/St. Luke's Hospital in Denver. As I left the house that evening around 6 pm with Areli, I told her daddy who stayed home with Leilani that she probably only needed the phototherapy treatment and I would be home for dinner. Little did I know we would spend a week in the hospital.

The first night

Still smiling

Cuddles

Areli and Daddy asleep in the hospital

We were admitted because her direct bilirubin (jaundice) levels were a 2.1 when normal is 0.0-0.3. They were very concerned because at her age (almost 8 weeks) any normal newborn jaundice would have gone away, so this was indicating there was something wrong with her liver. I of course didn't bring anything with me except a book, so I frantically had my clothes, phone charger and toiletries rushed to me. Thank you to my VERY supportive friends and family we were able to juggle Leilani with Daddy's work and school schedule so that I was able to stay 24/7 with Areli. Throughout the week her blood was drawn multiple times a day and we were seen by (too many) doctors. They assured us we would not leave until they figured this out- ya right.

She had elevated liver enzymes (AST)- normal is 20-60, hers 135

(GGT)- normal is 6-19, hers is 360

(ALKP)- normal is 145-320, hers is 462

She also wasn't making a proficient amount of protein, and all of this indicates liver disease. Through countless blood tests and an ultrasound, they ruled out just about everything, so they decided on day 4 to do a liver biopsy. 

They took her back for surgery and even though it only lasted  1.5 hours, it felt like a life time as my mom and I waited in the pediatric surgery waiting room. FINALLY, we were called back to recovery were my sleepy but screaming baby awaited.

We were discharged with the intentions that we would find out our diagnosis in that upcoming week with our GI specialist Dr. K, and with a new special diet for Areli. A yucky formula called Progestamil. (It is halfway digested I guess from algae so it is easier for her liver to process). Needless to say going from breastmilk to that was a battle, she HATED IT!

Thank you for reading about Areli, please share so we can get our story out to help find answers.

Love Mama Linnea