2011-05-11

It was very interesting a day… I am not in incubator any more, but in bed. Until now I was lying only in a nappy, today, for the first time, I was wearing clothes ;). It seems that I am already a big child. One of the nurses said that I am old ;). I didn’t sleep almost all day, I was looking around with curiosity. My parents will buy small clothes for me tomorrow, up to 50 cm height. They are still doing many examinations… Nothing certain is known for sure yet. A geneticist has seen me today. They are also going to do a X-ray in the evening. I wonder what new day will bring…

2011-05-10

Doctors suspect that I have many diseases. Perspectives are very poor… They are very professional, they are consulting with many specialists. Due to the fact yesterday was very hard for my parents. What is more, again they could be with me only for a very short time and they still haven’t find a place to stay… Because of that they didn’t writ anything in my diary yesterday, they didn’t have the Internet. Today it was much better. I have my “own room” now. It is a small place only for one patient separated from other rooms with glass walls. Now my parents may spend with me almost all day.

2011-05-08

My parents were very long with me today ;). However I am sleeping all the time because I am receiving permanent sedating medicines. Impatiently we wait for tomorrow and decisions of doctors… Meanwhile everyone learns my reactions and behaviour. Slowly they are taking to my parents. They didn’t allow my mother to hold me on her arms yet (despite the fact that in Gdansk she was doing it every day) but she has already changed my nappy several times.

2011-05-07

A day full of adventures has ended. First I was transported in ambulance to the airport, then I flied by plane and then again went in ambulance to the Centre of Polish Mother’s Health Institute in Lodz. I am glad that mummy was with me all the time. Daddy has come by car. Doctors from Gdansk did they best to prepare all things concerning my journey. I would like to thank very much all doctors and nurses from Gdansk for these 94 days spent under their care. At the Intensive Care Ward in Lodz is a lot going on. There are two other children lying with me in the same room, also with heart problems. My parents spend with me only few minutes because of all this confusion. Let’s hope that tomorrow will be better… The nurses said I am a very absorbing patient. I am very restless, but it’s not unusual after so many attractions! Due to the fact I have very high parameters on respirator. A new thing for me is that I am lying in open incubator now. In this way I can see and hear everything that happens around. There is however also bad information, which worried my parents. A problem in my central nervous system has been confirmed in the form of agenesis of Corpus Callosum which is lack of connection between cerebral hemispheres. After Sunday it will be examined whether it is partial or complete. All other examination will be done next week too. I must get use to new place first and hospital staff have to get to know me.

2011-05-06

What a happy day! The photocoagulation treatment has gone well. Luckily retinopathy didn’t develop any further. My parents had a lot of stress – they had to sign additional documents that they are aware that the treatment is under great risk of my death – but it’s over now. The anesthesiologist was doing all she could in order not to do any harm. Now we must wait for reaction of my little beautiful eyes. Ophthalmologist, whom I am very grateful, said that after 8 days state of my eyes must be checked. There are 60-70% of chances that I will see with right eye and 40% with left. As it was planned, we go by plane to Lodz tomorrow – we means my mum and I. Daddy goes by car. I hope nothing will complicate. I would like to thank you for keeping your finger crossed, for your prayer and every comment that gives strength and comfort to my parents.

2011-05-05

There is a place in Lodz for me! Now everything depends on tomorrow’s treatment. If it will be alright and I will be fine after that, on Saturday I go by plane to Lodz. Mrs. Zosia and Sylwia hugged me for goodbye. I will miss them… They looked after me very well. When I will get through all of this I will visit them. Pray for me and keep your fingers crossed tomorrow at 8 o’clock.

2011-05-04

It is a very important day!!! I reached 2 kg. I weigh 2020g. I am round. Doctors from Gdansk phoned those in Lodz and there is still no place for me. Despite of that, doctors from Lodz started to consider is there any sense in transporting me there when I cannot be under narcosis. Tomorrow the answer was supposed to be. But my parents didn’t give up. Daddy phoned to professor from Cardiology Ward and asked to take me. She said that the doctors from Gdansk should spoke to her and later they did so. At last she said that she will take me but first my eyes must be repaired in Gdansk. Ward Head spoke with doctors at Zaspa to persuade them to try bringing me under narcosis. Unfortunately, tomorrow nothing can be done, so I will have photocoagulation on Friday morning. My parents are happy, but on the other hand they are full of doubts… Is Friday still in time to help my eyes…? If so, will I manage the narcosis…? And even if this I will withstand, will the treatment help – it is only 30-50% of chances…?