Wednesday, January 13, 2010

Where we left off...

So, in catch-up 4, we returned from Ethiopia and that's when all of us fell off the map entirely. Terry returned to work right away and TN moved back into her daily routine of going to daycare. I started maternity leave, home with Soly... and our journey through the medical establishments in Minnesota began.

It was clear that something(s) was terribly wrong with Soly. Her coloring was off and she was pale, she threw up nearly everything you gave her to drink, any kind of formula, and wasn't eating solids of any kind yet. Her tongue was scarred and she still had open wounds on her bottom. Doctors at the International Adoption Clinic (IAC) at the University of Minnesota helped immensely, made an appointment for us right away. First, we started by taking her off of soy and dairy, changing to Nutramigen. Enfamil corporate was great at helping us transition, explaining what was in this chemical concoction called formula and helped us make it the right dose. However, it didn't matter, nothing stayed in our 6 month old, 9 lb little girl in newborn clothes. Next, we went to the feeding specialist, occupational and physical therapy, pediatric gastroenterology, infectious disease, regular pediatrician, and continued with the IAC. Soly and I spent day after day, week after week at doctor's appointments. When not traveling to and from, I was on the phone tailoring her care, updating doctors and nurses, getting medical records transferred, filling prescriptions, getting updates on blood draws, poop tests and getting other medical opinions. At one point Soly and I were spending more than 20 hours per week wading through the medical system.

Finally, after invasive medical procedures, tests here, there and everywhere, we had our diagnosis: Failure to Thrive, severe reflux, microcephaly, chronic salmonella, cryptosporidium, geographic tongue. A few weeks after this, I finally received Soly's medical records from Ethiopia. The agency was of no assistance, I did my own background work on the hospital she was in, located the sister hospital in New York, emailed them Soly's information (all we had) and begged for assistance. Within a week, we had medical records for her. I cried the hardest and angriest tears; her records indicated she was diagnosed failure to thrive at 1 month old. They diagnosed severe reflux at 3 days old. BFAS had known since her first month of life that she was chronically ill yet continued to tell us she was very healthy and that there was no reason to expedite her from the country.

For months, Soly lost weight. Finally, after medications and therapy she began to keep down bottles. Even today, Soly cannot drink more than a 6 ounce bottle without projectile vomiting. We weigh it down with rice cereal to help keep it down. However, at 14 months, she's finally on the growth charts, walking, thriving, running, playing. Except for her physical size, she is every bit the one year old we expect. I will forever be grateful for the medical system here in the USA and the many doctors and nurses that came to our aid, helping us save a baby girl we nearly lost again and again. Also, the love and support from our parents and friends was immensely needed and intensely appreciated.

Our adoption journey for Soly was most painful. However, she is the funniest, happiest little girl ever and we all love her.

1 comment:

Jes said...

It is amazingly sad to read this and hear all you went through, and amazingly astonishing to see Soly now and to know how far she has already come!

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