2011-05-22

Today passed peacefully. I didn’t have great falls of saturation. Parameters of respirator were a bit lower. Mammy was hugging me. Every time I couldn’t calm down my parents turned on a playing heart from aunt Margarita, to which melody I love to listen ;)

2011-05-21

After two weeks of my stay in Lodz state of my health didn’t improve… Today it’s a bit better, but respirator parameters are still terrifying. I had a lot of examinations. The worst was inserting of a needle into the spine in order to check the cerebrospinal fluid. Luckily, the result is correct. I am still not feeling myself due to sedatives. In the afternoon I had blood transfusion, because I had poor results. Let’s hope that after that I will feel better, my saturation and gasometry will improve and that they will be decreasing parameters of respirator… My parents asked about the sedatives which cause problems with breathing. Unfortunately, my doctor said that all these medicines cause such problems, but in my state they are indispensable. They try not to give me the worst of them unless in such situations as yesterday. For one thing they help, for another they are harmful…

2011-05-20

What an horrible day… Since morning I had falls of saturation. Doctors had to do a heart massage because my little heart slowed, what is very dangerous. I couldn’t recover at very high respirator parameters. I was given a lot of medicines for heart and lungs. My doctor said that a day may come when they won’t be able to rescue me. All day I wasn’t fine. I was given a lot of sedatives. I looked very bad. My mum read has that some of my medicines causes difficulties in breathing and apneas, so why I receive it??? In the evening I had better saturation but the numbers on respirator were still high (100% of Oxygen, 70 breaths, pressure – 30). I wonder if they will make them lower soon? Will they give me a chance to breathe. Here, in Lodz, they don’t know how to help my lungs, so I could breathe on my own. I think we must look for a specialist who treats lungs of  children mechanically ventilated for a long time.

Will I ever breathe on my own? Will I be able to wear dresses and play like other children? Eat normally, not by a catheter? Now I cannot even move because as I do that saturation decreases. This is why they give me this stupid sedating drugs all the time.

2011-05-19

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…

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 – 13^th of May…

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…?

2011-05-03

I weigh 1960g. There is still no place for me… Tomorrow rather nothing will change… Despite the doctors also my daddy phoned there today. We must wait patiently… Moreover it occurred that laser in hospital in Lodz is broken. I don’t know what will happen with my eyes now… Even if they will transport me on Thursday it will be too late to save them… My parents are very worried…

2011-05-02

I finished 3 months today! Unfortunately the laser treatment couldn’t be done. However I was on a “trip” to the hospital at Zaspa and back again ;) but after a 1,5-hour debate and consultations with hospital director it was decided that I cannot be under full narcosis because there is too great risk that I will not survive and this treatment doesn’t save my life but only helps to improve health. My parents went through a nightmare… It is very badly with my eyes. I have stage 3+ of retinopathy. Only 2 days ago I had stage 2. It means that the disease develops very quickly. Ophthalmologist who was about to do the treatment said that if another trial won’t be undertaken in 2-3 days time there will be only 10% of chances that I will see anything… The plan is to make photocoagulation along with catheterization under one narcosis when I will be in Lodz. Asked by my parents, the doctors phoned to Lodz again, but there are still no free beds. They say they will call every day. My parents are very worried what will happen with my eyes if tomorrow or the day after I will not be transported to Lodz.

2011-05-01

Grandparents Alice and Andrew visited me today. They were very happy seeing me so big and pretty. Tomorrow I will be transported by ambulance for newborn babies to the hospital at Zaspa. I will have a photocoagulation laser there which is done to prevent further development of retinopathy (a disease that cause retinal detachment). The treatment will be under narcosis. Remember about me tomorrow…

2011-04-30

I grow… I weigh 1900g – it’s a nice round number. I was behaving rather well today. My mum was holding me on her and changing my nappies. Doctor phoned to Lodz yesterday but unfortunately they still don’t have a free bed for me. She will call them on Wednesday again. Let’s hope that they will find a place soon. As aunt Kate has written in a comment, it is a great day tomorrow… Beatification of John Paul II. We pray for a miracle for me… Tomorrow in a church in Dzierzgon after every mass will money will be collected. It will help my parents in medical treatment. May is a time of many cultural events and friendly people use it for charity actions to collect money also for me. On Monday in Dzierzgon, at 5 p.m. a concert will take place during which funds will be collected. Everyone is invited to the castle hill.

2011-04-29

Today passed peacefully too. My mammy spoke to the Referring Doctor and Ward Head about taking me to Lodz. They were supposed to phone there today. On Sunday Ward Head will be in hospital. I wonder if she called doctors in Lodz and whether there will be a place for me… A lot of people pray for me and keep their fingers crossed.    

2011-04-28

I weigh 1860g. As it was planned, dad called Lodz today. Professor Moll said that I am big enough to make catheterization of my little heart. It’s an examination in which a catheter (thin, flexible tube) is inserted through vein or artery to heart. It will make possible to state what vessels I have got instead of Pulmonary Artery that allow me to live. My doctor will be consulting with professor Maroszynska from Lodz in order to transport me there to the Children Intensive Care Ward. Let’s hope that they will find a vacate bed for me there and I won’t wait long. A journey to Lodz is a little step forward. I received new nappies from my parents, on which I sleep soundly. Most beautiful are those with bears and ducks on them. Aunt Kate said that I cannot be the real Mary, that somebody has taken me and left another child, because I am so “fat” and don’t look like my daddy any more – she has seen the photos.