Our daughter Nene was born in Tomakomai City Hospital on Tuesday, March 22, 2011. She was named Nene because I like its sound and a famous wife of Hideyoshi Toyotomi (a daimyu or feudal lord in the Sengoku period who unified the political factions of Japan) who was also named Nene as I wanted her to be feminine and strong like her.
She was a small baby in the womb so I was concerned that she might have problems.
The baby was found to have some diseases in her 36th week. She was diagnosed with complete atrioventricular septal defects i.e. there are holes on the septum between the right and left sides of her heart and only a single valve. She was also diagnosed with pulmonary hypertension and cardiac failure.
Due to these diseases, she was delivered by Caesarean section. She weighed 2,114g at birth. While she was a very cute baby, she was diagnosed also with Down syndrome after delivery.
I was really shocked by the diagnosis. It is painful for me to think about her future as I know she has to live with the syndrome. I was able to think positively about the heart diseases because they are curable with surgery, but her Down syndrome was a sad and painful reality. I kept telling myself she would be OK but cried alone in my room at night.
She was to be taken to Hokkaido Medical Center for Child Health and Rehabilitation Center in Sapporo when she weighs enough for surgery because Tomakomai City Hospital is not capable of operating on her hearts. But she was taken to the medical center on April 5, earlier than planned, because she was more seriously ill than predicted. So we hastily moved to Sapporo.
Nene has a 2-year-old brother, Kotetsu. I first stayed with my family in the Sapporo House but they returned home and I am staying in the House alone because Kites now goes to a kindergarten in our home town (there are kindergartens that take cake of even children as young as 2 years old in Urakawa, Hokkaido). My parents are staying at my home to take care of him.
My husband sometimes visits the House with Kotetsu. The House is very important for my family as we can spend time together there. Kotetsu stands the loneliness of and doesn't complain about being away from his mother so seeks a lot of affection from me while he stays in the House. He can do so because we are staying in the House. It provides us with a place to stay together even away from home.
In the House's dining room, I often talk with other mothers about how our children are. We can take our minds off our troubles by talking to each other. I feel we all are facing problems. Mothers of children who went through operations for heart diseases can tell me about some they experiences. I can feel more positive by talking to mothers in similar situations than people who do not know about my situation or my daughter's diseases. I felt relieved by speaking with other mothers. I was so afraid and kept crying before my daughter's surgery and other mothers tried to remove my anxiety saying "she will be OK. My child is still suffering from such complications as …. But he is getting much better", and giving much useful information.
If I were staying at a hotel, I might be huddling in my room, blaming myself, and keep crying from cry out of concerns over Nene's illness. I was able to face my daughter's illness and become positive about her operation as I was able t o share the time together with other mothers in common spaces in the House.
Nene had the operation when she just turned 1 month old and has been trying so hard to overcome her illness. I was able to hold her in my arms immediately after the operation. I am really impressed by the power of the baby every time I see her.
We do not know when she will be discharged from the hospital yet but I will keep watching and supporting her growth together with my whole family.