We are together again. Mammy and daddy came about noon. I am very happy. I weigh 2400 g. Unfortunately I have been weak for last two day. I’ve got low saturation and a lot of falls. Nobody knows how to help my lungs. Every day they repeat the chances are low that I will start to breathe without respirator. We are very worried…
Sunday, 10 July 2011
2011-05-17
A day without parents. Dad twice phoned today to the hospital in order to ask how I am doing. I have falls of saturation, but in general I feel similarly as during last few days. Doctor said that I have less falls than yesterday. I wait for my parents, only tomorrow left…
2011-05-16
Today my parents had a lot of serious conversations with cardiologists and cardiac surgeons. All of them agree that at this stage of my life surgery intervention is not needed. These are good news. It occurred that my heart defect developed in a specific way, instead of pulmonary artery I have 7 or 8 little vessels coming out from aorta which supply lungs with enough blood. However, I must be under observation whether with my growth the vessels will grow proportionately. If not, my skin will get a blue or purple coloration (Cyanosis). Maybe in 2 or 3 months I will have another angiography in order to check it. It has also been confirmed that I don’t breath on my own only because my lungs are in a very bad condition. But the lungs won’t improve if respirator parameters will be still so high. And they cannot be decreased because I am not able to breathe efficiently. A vicious circle… But my parents don’t lose their hope. Professor said that the chances are low but still are.
My parents had to go to Gdansk in the evening. I am very sad. Before they went mammy was hugging me for a long while. I look forward to their coming back.
2011-05-15
I must say I grow very quickly, because I already weigh 2300 g. I behaved very well today. I slept all day. When I was starting to wake up and moving my parents laid hand on me and I slept again. Falls of saturation I had only when a nappy had to be changed or cleaning of the endotracheal tube had to be done. Sunday went very peacefully.
2011-05-14
All day long I am recovering. A nurse was surprised to see that I am such a spoilt child. She noticed that when I get uneasy and my saturation decreases only thing I need to calm down is putting a hand on me. I must agree that’s true :). My parents taught me that, or rather Mrs. Zosia and Sylwia came up with the idea that when I am uneasy or nervous laying a hand on me is the best thing to be done. And in this way I got used to it…
2011-05-13
I already live 100 days ;)!!! I had catheterization today. After the treatment they had to do a massage of my heart because its beat was to slow and it didn’t want to accelerate for a couple of minutes. Even later my parameters were low. But it’s already better now. I am resting. I am still sleeping after narcosis. Catheterization confirmed heart defect. I don’t have pulmonary artery at all, but vessels which come out from Descending Aorta. On Monday cardiologists with cardiac surgeons will be considering whether it is possible to help me at this stage by performing an operation. The worst problem now is with my lungs, which are very damaged. If I breathed, I could live with this heart defect… If only lungs would repair…
2011-05-12
My parents bought me beautiful clothes today. Pink, orange and yellow… Ophthalmologist visited me today, but it’s still to early to say whether there are any effects of photocoagulation. It will be very important day for me tomorrow – I will have catheterization with angiography of my little heart. It is an examination during which the doctors will see if an operation is possible. My parents are very nervous, because from this diagnosis everything depends… Remember about me in this special day – 13th of May…
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