2011-07-31

It’s the second day I am without antibiotics. Today I slept all day. In the evening I started to cry as my belly ached. My parents made a massage of my little stomach and it helped – before they went home I had fallen asleep again.

2011-07-30

Last days passed peacefully, so there is nothing to write about. On Thursday doctor decreased the pressure on respirator of 1 mmH2O more. She said that if I don’t learn to eat until I have tracheotomy they will make me a PEG (Percutaneous endoscopic gastrostomy in which a tube is passed into a patient's stomach through the abdominal wall) so that I will be able to eat through a tube. Mum said they will not agree and showed her how eagerly I suck a dummy. The doctor said it’s an easy reflex and I have to practice nevertheless of fear of anything that comes to my mouth. Yesterday clinical speech therapist called my mum and told her to make a massage of my tongue and palate. But it will be difficult as due to constant 5-month intubation I have a gouge in it. It hurts me when it’s touched. I hope it will heal. But still it’s amazing that so many people care about me and want to help me. Together with my parents we are very grateful

2011-07-27

Last two days were peaceful. Yesterday aunt Kate visited me. I am learning to suck. The best place to do it is in the arms of my mum. One nurse that was long absent, was shocked that I am so big when she saw me after coming back. I grow so quickly that there are some clothes that I haven’t wear yet and they are already too small. In the morning when mammy came I turned my head to the other side so that she had to help me with the tube.

2011-07-25

Yesterday Emily’s mother came to the hospital. Emily is a 2 years-old girl with tracheotomy due to the “Ondine’s Curse” (www.emilkowo.pl). My mammy spoke with her mother before about feeding children on respirator. She brought two dummies for me, so that I will be able to learn eating. The doctor said that we can start to learn sucking. She put her finger in my mouth and said that my tongue works so there is a chance that I will learn to eat normally. Yesterday I tried with my father’s finger and dummy, but it will take time as I always have eaten only through a probe. What is more everything that comes near my mouth frightens me because of often intubations. Today I slept all day. The nurses say that I am an utterly different child when my parents are absent. I feel safe with them. I weigh 3840g. Yesterday I was wearing my pink dress for the first time. I looked like a little princess. But my parents forgot to take the camera.

2011-07-23

Since yesterday I am no longer in incubator, but in bed. It is the third such a change. First bed I received in Lodz. After coming back to Gdansk I was put back into incubator, but after 3 days I was again in bed. When I came here it was decided that I will be lying in the open incubator. But now it’s over with heating… ;). Mammy long was trying to put the tube comfortably, but something wasn’t right. It was bending all the time. Finally  when daddy came they found out that the tube is shortened, and they were told that by the ward head. We are curious why she has done it… Hmh…

Today the doctor on duty made me a flexible indwelling again. She said she doesn’t like when so ill a child doesn’t have one because in case of emergency it must be possible to give the medicines quickly. I don’t like needles, but I must agree she’s right, especially that it’s so difficult to make me an indwelling... She also switched off ECG saying there is no need for me to be connected to it all day. My stay in the hospital is long-term and electrodes hurt my delicate body. It is enough I will have them at night.

2011-07-21

Not so long ago I was a little child, and now I seem to be quite a big baby. I weigh 3700g. My parents didn’t learn x-ray results until today because yesterday the doctor was to busy with painting her nails to provide them information. But now we know everything. It was done to check once again whether I don’t have hydrocephalus. The result is negative. The doctors were worried that my head grows to quickly. On Sunday its circumference was 34 cm, on Monday 35,5 cm. But it was a mistake done during the measurement, because today a nurse measured 33,5 cm. Every time a different nurse measures my head so that’s why the results differ so much. Today while changing a plaster I extubated (the tube came out from trachea). I was then intubated again, this time through right nostril. The previous tube I had for more than 3 weeks. After all of this I slept all day

2011-07-19

My weight is already 3560g. When my mum holds me too long her arm aches ;). Yesterday doctor diminished respirator parameters: oxygen to 45%, breaths to 15 and pressure also a bit. Unfortunately CRP increased again. I was given new antibiotic. My immune system want develop in the hospital, so I continuously have some infection.

Today my milk amount was increased to 70 ml. I am a big girl ;q. The doctor said that I have grown up a lot and soon we will start to think about the tracheotomy. Children feel better with that than with the endotracheal tube. What is more it is easier to give medicines for lungs, especially inhalations. If my lungs improve it will be possible to take out the tracheotomy tube. Then the hole in my neck can close even in 24 hours time. Today grandma Beata and grandpa Zbigniew visited me. They liked me very much. They said that I look after my mum, that I have the same face as she when she was born. I wonder, when I was born everyone said that I look more like my dad, now they say that more and more like my mum ;) Tomorrow I have important examinations: abdominal and brain x-ray. We hope that everything will be fine.

2011-07-17

I surprised my parents on Friday;). My daddy took me into his arms, but I couldn’t calm down. As soon as he gave me to mammy I fell asleep hugging to her. Even when he was checking my blood pressure I didn’t react. No place like mum… ;q

I had a lot of guests today. First aunt Emily with uncle Thomas and in the late evening deacon Damian with father Matthias. I felt very well all day. I had a very good saturation. My parents noticed that I have my own likings and habits. When they covered me with a blanket up to my neck I started to cry and didn’t calm down until I took my hands out of it. Only then I was glad and fell asleep ;).

2011-07-14

During the last 2 afternoons I was sleeping and listening to the classical music – Bach. I weigh 3430g. I am so big! It is easiest to notice by looking at my clothes, which are to small ;) and during hugging. Probably baby colic started to bother me. I cry (soundlessly) horribly. After my anxiousness my mammy hugs me a lot. When she does that I fall asleep immediately. Yesterday my parents made me a photo session. I hate it because the camera’s noise annoys me (my hearing is good ;)). But it will be a souvenir when I grow up. Examination results are getting better, especially CRP.

2011-07-12

In comparison to the last few days I had a very good gasometry today. CRP is similar as recently. Ophthalmologist came in the morning. Dad brought mum to the hospital before going to work so she would be able to speak to her. She couldn’t stay long with me because in the morning there are no visits. Luckily she came for a moment and stroked me ;). Ophthalmologist was positively surprised by the results of the examination. Comparing to the previous one there is an improvement. I still have ROP 4, but retina has attached itself in some parts and it is possible that it will re-attach even more. There is a chance that I will see. Surely not like healthy people, but it’s always something… Maybe not much, but it makes us happy…

2011-07-11

I weigh 3230g. CRP rapidly decreased. The doctor was shocked – in 2 days from 144 to 18. Today we received genetic opinion from Lodz – none disease was confirmed. My mum was checking my sucking reflex. When she put her finger into my mouth I started to suck it immediately. My parents are happy because they doubted whether I can do that as I am spitting the dummy out over and over again.

2011-07-10

Yesterday I felt a bit better. I was more active. My parents bought beautiful set to take care of my nails. They made me manicure and pedicure. Today I was more anxious and wriggled a lot. New antibiotic helps me as CRP is a bit lower. Tomorrow I will have examinations and on Tuesday ophthalmologist will come. Doctors consulted me with a genetic. She said that she suspects one syndrome that could be connected with my problems, but it occurred that she fought about Di George Syndrome, which we already know that I don’t have ;). I am really a little women. When my parents use a lipstick I fold my lips like a big girl. Nature cannot be deceived – it must be an inborn reflex ;).

2011-07-08

Well, we should have known that it won’t be long till I will need needles again. I am sick again. My CRP is very high, I am was given new antibiotics. Since from the beginning I am in the hospital my immune system is very weak. My veins are also more and more weaker due to the constant pricking. I slept almost all day long.

2011-07-06

I was very anxious today. I was crying and wriggling a lot. I didn’t calm down until my daddy came and started to hug me and to speak to me patiently. Dad often kisses my little hands while the song for children “Kiss the little frog’s hand” is being played. When I was very little I looked just like a little frog… ;). Today mum noticed that I smiled delicately. And at my every smile she smiles back even wider ;). Today I have no more flexible indwellings. All medicines are given through probe directly to my stomach. Let’s hope that new day will bring better prospects…

2011-07-05

Today for the first time aunt Annette and uncle Luke visited me. They were surprised that I am so big. My CRP is finally lowering, so I am taking one antibiotic less. I have a problems with inserting needles into my little veins because they are so fragile. Due to that the doctors decided to change gradually intravenous medicines to ones taken into mouth. I was a bit weaker than yesterday, my gasometry was worse. I didn’t slept long, but I listened to music, mainly to the songs from “The Phantom of the Opera”. I listened also to interesting stories told by my parents. I am so cunning that while my parents are hugging me I am sleeping, but as soon as they go out I wake up. Today I detained them more than half an hour.

2011-07-04 – A few words from parents

Yesterday was very special. We had our first wedding anniversary. Our little Mary must have known that because she was behaving very well. As if she wanted to give us a gift this way. She fell asleep when we wanted to go so it was easier to leave her. We could go by the sea and relax. At least for a while. To be fully happy we needed only our little daughter… Today Mary must have had beautiful dreams. A couple of times she smiled sweetly. It was for the first time that we saw such a sweet smile on her face… Unfortunately we couldn’t take a photo because we forgot to bring a camera. Nevertheless we hope that she will smile more often so that everyone will be able to see this amazing view ;).

2011-07-02

I have finished 5 months today!!! I am already sooooo biiiiiig and old… ;). My parents gave me a gift: beautiful pink radio, so I can listen to the music now. Today I listened to children songs and Bach :q. I was very peaceful in the morning but later my stomach ached and I cried a lot. When at 6 o’clock mum wanted to feed me she checked that I haven’t digested a dinner yet. Finally I ate milk and went asleep.

2011-07-01

My colleague Magda was taken today to the “awakening room”. There parents can stay with their child all the time, they sleep there and thus prepare to go home. Due to the fact I am now alone as Alan was taken yesterday to another hospital. So I was also transferred to another room. We lay here, 3 little girls: Caroline, Paula and me ;). All newborn children. Yesterday I ate a lot. Even amount of my milk was increased to 60 ml. Today it was a bit worse. I was very active instead. Little Paula cries loudly and thus sometimes wakes me up. MaybeI have sight problems, but my hearing is very good.

2011-06-29

The last few days were very peaceful. When I sleep soundly my saturation is above 90%, and when I am active a bit lower. Every day my parents try to leave me sleeping. Alan’s parents told them how it looks like when I am left alone. Almost every time they leave me I wake up and start to cry. They didn’t suspect that I feel their presence so hardly. During the last 2 days, instead of the nurses, my parents fed me. I also eat vegetable soup for 2 days. Mammy beside by probe gives me few milliliters straight to my mouth. A doctor decreased today respirator parameters to 46% of oxygen. I was doing well. Little by little I have better gasometries.

2011-06-27 – A few words from parents

We already are in the new hospital for a week. Hundreds of people read Mary’s diary every day. It means a lot to us because we know that we are not alone. Thank you for your presence and kindness. Many of you give also funds for Mary’s treatment .We want to thank you for it once again. Every amount of many we gather at Mary’s account. At the moment we do not pay for her treatment but when she comes home, in what we strongly believe, her path of healing and rehabilitation will be very long.

In the hospital we see many ill children, for example Magda, that is in a comma, or Alan born with heart disease and without hands. Their parents are with them all the time. They believe in them and love them very much. It’s good to meet people that think like us, because it is not always like that. Here we would like to tell about one conversation which we had with a nurse in previous hospital. She said that when the children who were lying on their ward are coming after a couple of years it’s not nice to watch these of them who are ill… But none of us has chosen to have an ill child., and what is more the child hadn’t chosen it either. It is sad that a person with such views works in such a place, with innocent little people. But it also happens that there are parents who despise an ill child. We heard about a couple that left their child with Down Syndrome, because it didn’t fit to their world. Their told the nurses that they have enough money to have healthy children.

Recently we read a blog about 4-years old quintuplets that were born in Poznan in 26 HBD all weighing 800 g. Doctors say that it is a miracle that they all came out of the hospital. Their parents make great efforts to provide them the best quality of life despite of such problems as ROP, heart diseases, CNS defects… Only now we see how many sick children are among us. And what is more how many people devote their lives to them. On the other hand we meet people who think that for such children there is no place in the society…

In the end we would like to explain that the comments (in Polish version) will be published on our site only after sending them on our e-mail. We apologize for this impediment but we don’t want our blog to be a place of “political arguments”. The website was created for people who are truly interested in the history of our daughter. In the beginning the diary was written in our family album, only for ourselves. But when more and more people asked us about our little daughter we decided to make a blog in the Internet. We suggest people, who want our little Mary to die soon, not to spoil their mood and not to visit her website.

2011-06-26

I was weaker today. Respirator parameters were increased a little. I was initiating only few breaths (it is showed on machine’s monitor), I was very lazy. I slept almost all day. Today doctor decided that I am big enough to eat carrot. I receive it through probe with milk directly to my belly. To tell the truth it is not the first time that I am given carrot – my parents gave me little amounts to my mouth before to taste it. I had more guests today: grandma Alice and  grandpa Andrew. Of course I received a gift from them ;). Let’s hope I will be stronger tomorrow.

2011-06-25

Since yesterday I have a new colleague in my room – Alan. I couldn’t sleep during all day yesterday, but I behaved very well. All laughed that it was because of him ;). At last I reached 3 kg, I weigh 3070g. Today I was intubated through my nose – it is a big change. In the beginning they didn’t want to try it, because my nose is very little, but eventually one doctor did. The tube is almost bigger than my nose, but somehow they managed to put it inside. Due to the fact I was anxious today, but I didn’t have falls of saturation. I must get used to new way of intubation and then I should be more comfortable. Now it’s easier to use the lipstick. Taking the opportunity my parents bought me also a dummy. I am learning to suck it. First I was throwing it out with my tongue, but later it was getting better. Surely soon I will be able to use it to calm myself, and what is more it will stimulate my mouth. Mum was trying to bribe me of course with “sweeties” - glucose ;).

2011-06-23

It was another calm day. While I slept I had a very high saturation, when I was tossing – only a little worse. At last I am receiving the oxygen at level harmless for me – 49%. Let’s hope it is not temporary and we will manage to decrease it to 21% - as much as it’s in the air.  Today , due to the holiday, I had a lot of guests. First aunt Margaret and uncle Michael came, later priest Andrew. All of them could be with me only for few minutes of course. Nethertheless they all agree that I am very pretty ;). Mammy was holding me today in her arms, but I wasn’t very calm, because it was almost meal time. And as the nurse said, I throw a tantrum when I don’t eat on time. My mammy was spoiling me by giving me 10% glucose. It was so delicious, that I was lapping. My daddy forgot to writ yesterday that I received my first lipstick ;) It’s not red or pink but it should protect my lips. Mammy wants to use it too, but dad doesn’t allow her ;).

Mammy read a bit about my eyes disease. The ophthalmology medicine develops very quickly. It was written that in the USA they transplant retina, which costs 50 000$. Maybe I am loosing my sight today, but it is not impossible that I will yet be able to see all the beautiful world.

What will new day bring… Let’s hope that every day will be better and full of new hope, that I will be saved, and I will be a healthy child, because “the hope does not disappoint us”…

2011-06-22

Yesterday brought some bad information… Ophthalmologist said that in both eyes I have ROP stage 4. Unfortunately the laser didn’t help. Next control in two weeks time. Does it mean that I will not see??? My parents are very worried… Uncle Damian visited me yesterday. I didn’t “talk” to him because I was sleeping. Today was a bit different. I was more active as I was given less medicines.

2011-06-20

Today was like the previous ones. I weigh 2880 g. Aunt Kate visited me today. She brought me beautiful green rabbit ;).

2011-06-19

I am fine. All day with 55% of oxygen. The nurse said that when my parents went for a dinner I got anxious and she had to intervene. I sleep almost all day long as I am given a lot of painkillers and sedating drugs. Only for 2 hours I was awake.

2011-06-18

It was a peaceful day. I am a lot better than two days ago – it must be due to the medicines that started working now. The care in this hospital varies a lot. I was given many sedatives, but in the same time respirator parameters were lowered significantly. Will it bring long-term effects? Time will show… My parents were with me, talking with me, reading fairies… Today was a baptism of my cousin Bartek. My parents didn’t go because they were afraid to live me in a new hospital… If I was healthy all of us would go …

2011-06-17

Today at 10 o’clock I left the hospital at Kliniczna. This time I said goodbye for good. We are very grateful for all this time spent here, for care and saving of my life and health. The farewells are sad. This hospital was my first home… I spent here 115 days of my life…

The first day in the new hospital means a lot of new experiences: long connecting to the machines and a lot of examinations. I am at the children intensive care unit. With me there are also two children here, a girl and a boy. Both 5 years old. After 12 o’clock my parents could be with me. Unfortunately the doctors said that my lungs are in a very bad state. They give small chances for my recovering and survival. Nothing new… For 4,5 months all say that I shouldn’t live, but I really want to live and I want do be healthy and I won’t give up so easily… We’ll see what will the coming days bring… Only a miracle can save me…

2011-06-16

As we were told yesterday there is already a place for me – I am going to the hospital at the Polanki street tomorrow. I am curious how it will be there… With whom I will be lying… Will the doctors manage to take me off the respirator… I was very weak today. I was given an antibiotic and blood.

2011-06-15

It was rather a calm day. But how it comes that when some nurses look after me I am given higher levels of oxygen, and the saturation is the same… During a couple of hours I was made an EEG examination that checked how my brain works. It seems that my organism manages to function normally at lower levels of oxygen than ordinary healthy people. The doctors phoned hospital at Polanki street. Maybe a place for me will be earlier.

2011-06-14

I behaved well today. Only in the evening I became nervous. Today I was given something new to eat. For the first time I ate carrot and apple dessert. I was given a little bit directly into my stomach, and some to my mouth. What is most important, I swallowed everything (prematurely born children breathing by the aid of respirator often have problems with swallowing). I am very spoilt. Every time I have a fall of saturation my parents take me into their arms. I am using it. Recently they bought me a frame with clay to make imprints of my hands and feet. Today with the aid of Mrs. Zofia and Sylwia we impressed all 4 of them. It will be a great souvenir when I grow up.

2011-06-12

I already weigh 2800 g. It’s not much to 3 kg. I am 48 cm high, so my first clothes are to small ;). It’s a pity that I don’t have any hair still, but it is normal when you are lying all the time. My mammy couldn’t come in the morning because she had a migraine. She came in the afternoon. Mum was talking with Mrs. Magda from Lodz. Her son Casper had a HLHS and was lying with me there. He was abi=out to have an operation this week, but on Thursday he became an angel… [*]. Dear Casper parents - we are with You!

2011-06-11

Yesterday my parents went to the orders of uncle  Damian. Despite of invitation I couldn’t come. I hope it will change next year. During the celebration my parents spoke with many friendly people who worry about me, believe that I will get over all of this and plan going for a walk with me ;). I am very grateful for open hearts. Most of day I was sleeping because I received more sedating drugs. It has advantages because I don’t feel pain then and sleep soundly, but on the other hand when I am so calmed I forgot to breathe…

2011-06-09

The last two days are a bit worse. I have a lot of falls of saturation. I am very active and strong. I raise my head – I am a big girl. The endotracheal tube is annoying me a lot. I am trying to take it out all the time. Yesterday ophthalmologist came. Next control will be in few days, because in the left eye are new changes. Maybe I won’t have to have another photocoagulation… There are a lot of children at the ward. Nobody knows how to help me. During 4 months my state didn’t change. There are better and worse days. Only my weight and height changed. I weigh 2710 g. In the last few days my daddy saw that I have beautiful grey eyes ;). I am bathed from time to time – earlier, as every premature child, I was only cleaned with wipes.

2011-06-07

The last few days were very peaceful. My health state is not changing. I wasn’t given antibiotics for a couple of days. I have good gasometries – 50 mmHg CO2. My parents are spending a lot of time with me. In the morning I took out the tube again as it was annoying me. Today my grandpa Zbyszek visited me for the first time. In the afternoon, when parents went for a dinner, I took the tube out again and had a fall of saturation and heartbeat. I cannot be left even for a while… Due to the fact respirator parameters are higher again. Moreover, I receive antibiotics again because some infection is starting. In the evening I become calm and I was sleeping when parents left.

2011-06-05

I was tossing almost all day long, especially when time of meal was close or a nappy should be changed. It is very warm here so I was wearing only a short-sleeve T-shirt and a thin blanket lying on my legs.

2011-06-04

I cried a lot today. I cannot be heard due to the endotracheal tube, but the tears were falling solemnly… Today thousands of young people prayed for me at Lednica Fields.

2011-06-03

In the morning I found out that at the end of this month I will be transported to the hospital at Polanki in Gdansk. Let’s hope it will be the last hospital from which I will go straight home. A nurse bathed me today. I was tossing a lot. My parents were hugging me a lot, reading books and playing the music. The tube which I have in my mouth makes me edgy so I took it out.

2011-06-02

Today I finished 4 months. I am already so big. Yesterday we witnessed an unpleasant event which is not even worth of writing about here. I am much calmer than recently. I am returning to my previous state without sedatives. Today, even when mummy was trying to tease with me, I didn’t even thought of waking up – so soundly I slept. My parents brought a couple of songs for me today. I was listening to “Fasolki” (which translates “The Beans” – a band which plays songs for children). Some of the songs I liked very much. I am so strong that I lift my little head and try to turn it. However the tube is a problem. In the evening, when I didn’t want to sleep and was looking around with curiosity, my dad told me a fairy showing pictures in a book. After that I went to sleep.

2011-05-31

I weigh 2670g. I am in bed for two days now. My parents are very worried about me. Although I don’t look like a very ill child – I am tossing continuously – my health state is still very serious. It is warm outside and we are still in the hospital… What is more my parents are receiving anonymous information that they should pray for my death. How it is easy to judge others for someone who is not in such a situation…

2011-05-30

My parents were with me all day long. I am tossing and turning. I was hugging for a very long time to daddy. My gasometry was still good today so doctor decreased 5 more breaths.

2011-05-29

Another day in Gdansk. I am again in incubator – it was waiting for me with a sign “reservation”.

I am under observation. They must get know me from the beginning. I am very nervous and disturbed. I am fighting because the doctors don’t give me the sedatives any more. I suppose that I am addicted… I was given a lot of them in Lodz. It seems that at least two difficult days are ahead of me.

2011-05-28

We managed – I am in Gdansk. I am still recovering after the journey. Everyone was waiting for me ;). My parents were looking at the sky to see the plane and as soon as they heard it they went to hospital. Nurses prepared a different place for me this time so we will have more privacy and peace. It worked immediately. In third gasometry carbon dioxide was lower than 40 mmHg so doctors decreased 20 breaths from respirator.

2011-05-27

Journey to Gdansk didn’t work out. Unfortunately while I was taken to incubator I got nervous and my saturation and heartbeat decreased. My parents are in Gdansk… What a horrible separation… Tomorrow we will try again. We hope that everything will be fine this time.

2011-05-26

I already weigh 2560g. I had a lot of examinations today: ophthalmologic, echocardiography, ultrasound examination of brain. Tomorrow I am flying to Gdansk, back to the hospital where I was born. These news took us by surprise. We knew that coming back to Gdansk is being planned, but we didn’t expect it so soon. I am going back because doctors in Lodz aren’t able to help me, my heart was diagnosed and a surgery is not necessary now. They resigned quickly. After 20 days they have enough. I am a difficult and demanding patient. Tomorrow I will meet with familiar doctors and nurses again. I was supposed to fly at 8 o’clock in the morning, but due to technical problems I won’t go sooner than 2 o’clock in the afternoon. My parents are planning to go by car in order to be already there when I will come. Today father Mark administered me the sacrament of anointing of the sick. I will miss him. He came to me every day, spoke to me, blessed me. Tomorrow before the journey he will visit me too.

2011-05-25 – A few words from parents…

A time for some criticism came… Unfortunately there are some things that we don’t like, but what we experienced yesterday and today was just too much. After reanimation of Mary doctor repeated a couple of times that we must be aware that one day they won’t be able to rescue her and that such critical moments aren’t good for her health. But we are well aware of it… We know that every day of her life may be the last one… The doctor didn’t like the fact that we weren’t moved very much by her words. But if we would worry very much about everything we wouldn’t manage it. What is more it seems to us that she has enough of our questions about respirator’s work and other things – we read a lot and have a lot of doubts. Eventually we were invited for a conversation with Ward Head. It is easier to work with parents that don’t care to much… The ward head explained us again that Mary is in a very serious state and can die…

But the most important was today. One doctor in the morning told us that cardiologist who helped us to go to Lodz wants to speak with us. The subject of this conversation was similar – the doctors from intensive care unit complained about us to her! We explained again that we know how serious the situation is, that we are neither naive nor stupid, but as parents we cannot just watch and do nothing to help our child. The doctor is a very warm and competent person. She said that if in future Mary will have to be examined again, they will do that. After returning to the ward the doctor – pretending not to know - asked us why we were summoned for the conversations with the cardiologist… He asked also whether they should rescue Mary when the reanimation will be long… He said about trust, but how we could trust a person who after examination a child that has saturation 95% and a very good gasometry doesn’t decrease respirator parameters. After we pushed on him, he made additional gasometry and decreased oxygen and breathes of 3%. It is ridiculous. We couldn’t stand this so we change it of 8% more. It has no influence on saturation, what was easy to predict.

Unfortunately the doctors don’t believe us and instead of decreasing respirator parameters when Mary has better days, they hold her on very high making it impossible for her to get off the machine. The oxygen is very toxic at such high levels… Despite of all of this our daughter was very active today. For few hours she didn’t sleep, but watch around curiously and listen to the music from a music box. She was waving her hands and clenching her little palms on our fingers…

2011-05-25

It was very bad yesterday. Since morning  I had a lot of falls and very weak saturation, about 50%. Later, when my parents went for a dinner, they had to do a massage of my heart because it slowed and didn’t want to accelerate. But only massage didn’t help – I was given adrenaline and other medicines. My doctor repeated my parents few times that one day they may not be able to rescue me. Unfortunately, doctors like to pass bad information about me. At least then they think they know something about me… Luckily today it was much better. Without falls, saturation about 90%. In gasometry I had the lowest level of carbon dioxide in my history – 39 mmHg. The nurse was very nice today too and content with me. Yesterday because of my poor health I wasn’t given milk, but today I eat almost normally. Tomorrow I will have ophthalmologic examination and echocardiography. Because nobody knows how to help me soon I am going back to Gdansk. Ward head from Gdansk is looking for a place for me… I hope there will be doctors, that will not be prejudiced of me and will be trying to help me to breath without respirator… Yesterday also rehabilitation therapist visited me. She said she sees no physical changes or deformations and showed my parents how to work carefully with me at this stage. She also said that she knows a neurosurgeon who thinks that corpus callosum (which I don’t have) is an out of date part which has no use for us. Let’s hope that it will be true in my case…

2011-05-23

I weigh 2500g. I am very active today, but I don’t have big falls of saturation. For the first time since we came to Lodz my daddy was hugging me. At times I slept and at times tossed and turned a little bit. State of my health is still without changes…

2011-05-22 – A few words from parents

Our site is visited by almost 1000 people a day. It is known not only in Poland but also in Germany, England, Spain, USA, Austria, Ireland, Belgium, Norway and many other. We thank all of you for making our website popular, for your prayer, good word  and financial support. We are very grateful for all happenings that were done for Mary. We thank you for beautiful paintings and for searching for a place for us in Lodz.

Your faith in Mary gives us strength. At the moment we are looking for a way and people that will be able to help Mary’s lungs. More often we hear the term “Home Hospice” Our daughter’s doctor say that problem with lungs may last for a very long time and she should go home with respirator. They don’t give her any chances. We spoke to a nice nurse today that unfortunately we didn’t find a child with similar problems as our little Mary has. The doctors either. Children with heart defects is 1% of all births, prematurely born is 10%, CNS defects is also a small percentage. Mary has a rare luck. The nurse said that we didn’t found a similar child because they simply die.

In 25 week of pregnancy, when we were informed that Mary is very ill, the doctors said that such a child must be born in term in order to survive. But some also said that we came to late (abortion in Poland is legal up to 24 week)… We started to look for an information about heart defect not knowing that we will have a premature child also. But Mary lives despite of medical diagnosis, she has a great will of life and strength to fight…