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01-22-2007, 08:04 PM
[left:c79f539876]http://www.cherubs-cdh.org/Album/new/tijan-anna.jpg[/left:c79f539876]It is now the month of January, another new year, a chance to look back and see just how far we've come. After a normal pregnancy, an induced labor (our doctor feared a home birth), and with no warning or hint of trouble, Anna came into this world with a very hard road ahead. Anna was born in a northwoods hospital where we were the only ones on the floor. It was suppose to be such a normal labor and delivery that the pediatrician on call had rode his bike home. Little did he know that en route to his home, he was desperately being called back for a baby in distress- our Anna. She had turned deep purple immediately after the cord was cut. While waiting for the pediatrician to get back to the hospital, a team of nurses worked hard along with my OB to keep Anna alive. After a quick trip to x-ray the doctor came in to tell us the news, a diaphragmatic hernia was threatening our baby's life. A large hospital some 150 miles away was called to take her. They declined saying she was too critical. A Minnesota hospital was called and a transport team along with flight for life was on their way to pick up our daughter. Once they arrived back in Minnesota they called to get permission to put her on ECMO, for with ECMO she stood a 10% chance, without it far less. She stayed on ECMO 20 days until she was stable enough for surgery. While they were in repairing the hernia, they did a Nissen. The Nissen did not hold so a second one was performed along with a G-tube. During her six month stay, Anna had 10 surgeries; two of them being shunts due to water on the brain. She remained on the vent for 5 months with 2 failed attempts. She came home when she was 6 months old with staples in her head from a shunt repair just 4 days earlier. She came home with oxygen remained on it for 11 more months. I must tell you- against the hospitals suggestions, we refused nursing help at home. My husband and I felt that we were the best for Anna and in our case, we were right. it was hard and very draining but we wouldn't have it any other way. The hospital also wanted her to have both OT and PT daily. Switching off and on which turned out to be too much. She developed congested heart failure and spent a week in a nearby hospital. We again stepped in and said no more PT and only once a week OT which proved to be the right choice. We daily took her blood pressure and did her vitals, keeping a daily diary of our steps forward. We continued to feed her through her G-tube with Pediasure up until her 3rd year when she finally started to eat. At the age of 3 and a half years, we still feed her 1 - 2 cans through her tube at night leaving the day to oral feedings. At our hospital and clinic some 150 miles away, she has had a number of doctors (eight or so) all in their own fields - all telling us we surely have a miracle baby, that she is enjoying life as a normal 3 yr old (except for that tube sticking out of her tummy). We have so much to be thankful for - God has blessed us with a miracle at a point in our life when we thought we were all through having children ( a 10 year age difference), at an age when we can emotionally handle the heartaches of a critical baby.


Written by Anna's mom, Joan Tijan (Wisconsin)
1996