Yesterday Lili became 2 months old and she is doing well. She is at home more then a month and without any serious medication.
I am following a lot of stories of cdh-babies. Some of them very detailed and I wonder what I missed. Lili was born in a hospital they the only thing they do is deliver babies. the birth went quick and all was in place to take care of her. She cried when she came out and the the doctors decided that her situation was not acute, so she was put in a room with other 'high risk' babies only on oxygen. I had the chance to see her for about a minute. After that we lost track of her for about 24 hours. When I came to the hospital next morning to bring my wife some food and taking care of documents we asked to look at the baby. 'Oh, but she is transferred already to another hospital, didn't you know?!' No, we didn't know and nobody took the trouble to inform us.
She was transferred by ambulance to the children's emergency department of the main hospital in Sofia. Before birth we went there and met the doctor who was going to perform the surgery. No other options left I went in a hurry the other hospital to find out what was going on. I found Lili back at the intensive care and in my best Bulgarian I asked the doctors what was happening. They explained me again the risks and the severity of the problem, but the baby is stable and we are preparing for surgery. 'Why didn't you come here earlier, you have to sign a lot of documents...' I got a second chance to have a glance at her and was ordered to leave. She was to go into surgery in 2 hours at 17:00 h. I asked how I could find out how the things were going, to wait in the hospital or just what to do. They told me to go home, and gave me the telephone number of the department. At 21:00 we called and were told to call back later, "The surgery finished, but she is in a very bad situation, there is no one available to talk with you." At 22:30 we called again (Lili is now about 34 hours old). My wife spoke with the assistant doctor. "The surgery went well, but the baby is very unstable, we are fighting for her life nonstop. She likely will not make it to the morning" We asked to if we could we could come to the hospital; "No, call tomorrow morning again". 6:00 am; after a sleepless night and expecting the worst we called again."she is unstable, but bring some diapers and wet napkins." That day at 12:30 I went back to the hospital (visiting hours only from 12:30 - 13:00 h, every day). My wife was still in the other hospital where I was hardly allow to see her for 5 min a day. I saw the baby and got a brief explanation on the situation. Repair on the right long, diaphragm fixed, left long not developed at all, a problem with the right right kidney, but that was not important for now. She was on a bunch of tubes and ventilator for breathing. Again they said not to expect to much, the surgery was serious, but the defect was bigger then they expected. I got never to the point to get clear about here oxygen levels, medication and all kind off things I thought I would be busy with after reading other stories. Emco was never discussed, probably it was just not available at the time. After the third day I took my wife from the other hospital, and we went together to see our little girl, she started to safe milk, and Lili accepted that without any problem.
And so we went on for a few days, visit once a day, a phone call in the morning and in the evening. On the 6th day they took her of the ventilator and reduced medicines. Another 6 days went on And we saw her improving every day. At the 12th day the doctors for the first time were more positive and told us that she is doing well and was going to be replaced to another department. Another challenge, new people, little or no information again. The drainage on 2 sites was removed and she was of any medication. At the 19th day my wife was supposed to go to the hospital and stay there with the baby to take care and breast feed her. I still don't understand why exactly, but when she went there with her travel back, she called me to pick her and the baby up to go home. I think there was just no free beds in the hospital and Lili was not in the most urgent need of care anymore. We were told to come back for a check after 2 weeks, and to take care of her as any other baby.
All together the first three weeks were an unreal experience, and how Lili survived, and how we dealt with it is still puzzling me. For the doctor it was his 7 successful surgery in a row and I think he is one of the better ones in Europe. In the maze of bureaucracy, non information we were lucky to find the right people at the right time. We later learned that only 10% of the babies with cdh are diagnosed prenatal, just because of lack of equipment in the country. Last week we learned about another cdh baby which was born in the same time as Lili, but is not adapting well. Last week also my wife went back the the baby factory where Lili was born, to get a second opinion on her situation from the specialist there; There is a little breathing in the top of her left long but besides the left long she is as healthy as possible, a bit fat even they called her.