Today was much calmer. I was tossing and turning, but falls of saturation weren’t so deep. I weigh 1820 g. It is not much left to 2 kg. We wonder what will professor Moll say tomorrow…
Thursday, 9 June 2011
2011-04-26
It was again very bad today… All night and morning I had very low saturation and gasometry – breathing already with the help of respirator. My saturation was 20-40% for a couple of hours. It’s tragically. I had never such a low gasometry – about 160 mmHg CO2. Let’s hope that my brain wasn’t short of oxygen… Everyone is worried. Will I be all right? In the afternoon I was a bit better, saturation level went back to norm, but I am still at the highest parameters of respirator. Doctor said he will never try again to change me to CPAP, because I am very week after that. He waits for 2 kg and he will see what then. My daddy have already phoned professor Moll from Lodz today. Professor is going to consult with cardiologists whether an angiography of my heart will be possible soon. We are supposed to call them on Thursday. Doctor said that today’s x-ray examination shows that my heart occupies whole chest and it is pressing on lungs… My parents wonder how can it be when at the last echocardiography it wasn’t so. Who’s right? Last month it was the same: doctors insisted that x-ray shows that my heart is enlarged, but in the description of echocardiography it was written that it is ok. Whose opinion is worth to believe?
Wednesday, 8 June 2011
2011-04-25
It is not good. Due to lasting low saturation (about 60%) it was decided to change me to respirator again… Today I had many guests. My grandmother and aunts came. Sister Felicyta and seminary student Damian visited me too – even without telling my parents that they will come ;)
2011-04-24
Just like aunt Kasia and uncle Przemek wished me I was given another chance to be disconnected from respirator today. Unfortunately my parameters aren't too good… I hope that I will get better and I will be able to breathe. I weigh 1780 g. My parents were with me until very late, because during a day they were at their parents on Easter breakfast. It is a pity that I could not be there with them ….
Tuesday, 7 June 2011
2011-04-23
I weigh 1740g. The doctor fulfilled his plan yesterday. When mum came to me a great surprise met her, I breathed without the respirator, connected to Infant Flow CPAP. I didn't have a very high saturation, but I was doing well. Unfortunately later I had to be given eye drops every 20 minutes – which is very unpleasant – in order to widen pupils. Then visit of the ophthalmologist (doctor which examine eyes). I was very anxious. I cried. Even my voice was heard, because I was without the tracheal tube. It turned out that with my eyes it is very bad … I have retinopathy of prematurity. Next week a control awaits me again and then will be made a decision about the treatment, being aimed at stopping the further progression of the disease. At night unfortunately, after so hard a day, I didn’t have the strength to breathe any more. Saturation was falling and doctor made a decision to return to the respirator. It worried very much my parents who came to me and saw the respirator and my low parameters. Let us hope that doctor will soon give me another chance to try to breathe on my own.
Monday, 6 June 2011
2011-04-21
Another day of my life passed really well. Mum was hugging me very long, I felt wonderfully so close to her. I had very good saturation. When dad came I started to fidget a bit and turn my head, I tried even to raise it, I am so strong. I was looking at him with my lovely eyes. My condition improved comparing to the last hard days. I have very good gasometry. My doctor said he had some plan concerning me, but probably tomorrow, he said “we would see”. It is interesting what he is planning … hmh… Let us hope that the condition of my health won't get worse, but better and he will be able to carry it out. Today a cardiologist also examined me, I had an echocardiography. He said, that nothing has changed. The right ventricle of my heart is enlarged, but it is natural in this type of heart disease, since it must work more. If only tomorrow was even better than today …
2011-04-20
It is a bit better today. I behaved very well all day long, even parameters were reduced on the respirator, since the result of gasometry was very good. Doctor prescribed additional inhalation medicines for me, in order to improve functioning of my lungs. I am eating 40 ml of milk. I weigh 1670g. In the evening, after eating, I was a bit anxious, I had falls of saturation. Let us hope that tomorrow everything will be ok… As every day is bringing something new.
2011-04-19
It was a very horrible day. It was worse than yesterday. Everyone thought that I would die … Mammy spent 10 hours with me and she was worrying terribly all the time. When she came to the hospital I had a very low saturation at the highest parameters that are possible to be made on respirator … I was also very weak and I didn't move at all … Fortunately after 3 days of absence my doctor was present today and as soon as he saw in what condition I am he ordered blood for me and gave me two very strong antibiotics. It is a bit better, although still I am very weak, and two nearest days are supposed to be crucial … I live and I am fighting still… I ask you for a prayer.
2011-04-18
My parents had a lot of stress today. All day long I had falls. When mum came to the hospital saturation decreased to 20 % and stayed at such level for a few minutes. I calmed down only after long cuddling up to mammy. But I was very pale and weak. When dad left for a moment in the evening and mum again stayed alone with me I had very great crisis. Both saturation, and pulse for about 1 minute were zero. A nurse who was rescuing me said that my heart was beating, but so poorly that the sensor which I have on leg didn't record it. You can imagine how my mammy felt … She thought that it was the end … After a while everything increased, but still I am very weak. A morphology was done, but doctor says that it isn't the worst and I won't still get blood. My parents are very worried…
2011-04-16
Today for the first time my mammy fed me. Of course through the probe, because due to the respirator I cannot eat from the bottle yet. For two days they put on me bigger nappies (no. 1) because I am getting bigger. I weigh 1600 g. Parents read me today "Puss in Boots". It was super! Yesterday and today again I had falls, and not only of saturation, but also pulse. Even when I was hugging to daddy saturation has fallen twice. It’s rather not very good...
2011-04-15
I weigh 1540 g. I am eating 35 ml. I was given a gift today from Mrs. Sylwia, medallion with the image of pope. She brought it from Rome. Mammy cuddled me today for 3 hours. I felt wonderful! During hugging to my mum, she was reading me „Thumbelina”. When I came back to the incubator I was observing everything around, I didn’t want to sleep at all.
2011-04-14
Another day of my life has passed. On Tuesday, when I was hugging to daddy, nurses changed my little room, an incubator I mean, because the previous one was already too small for me. The day before, my dad for the first time changed my nappy ;). Unfortunately, a nappy change is not pleasant for me because I'm premature born and everything I have very delicate, but daddy was very careful, so it was not too bad. I eat 34 ml, but my weight does not change very much. What increases one day I lose another ... Today I weigh 1500 g. I like that number;). I was reduced the number of breaths on my respirator from 40 to 35 (per minute). It is a tiny step forward.
2011-04-10
I already eat 30 ml of milk. Last week they changed it onto Bebilon Pepti. Unfortunately my little belly rebelled and I am getting again Nutramigen, but with addition of rice gruel ;). I lost a bit on weight because I am being given medications that remove more water from my little body. Few days ago on my head appeared new hair. Daddy says I am the most beautiful girl in the world and mammy for the first time changed my nappy yesterday. On Thursday Wojtek made my website, which can be watched by all people from now on.
2011-04-03
Today I weigh 1490g. On Thursday I traveled by car for the first time. I was transported by ambulance for newborn babies to the hospital which is 1,5 km away to make echocardiography of my heart. This was necessary because my parents were going on Friday’s evening to Cracow to consult with professor Malec. Professor gave us much hope. What is more, the study shown that my heart is not enlarged, as my parents were being told. All Saturday I missed them very much, but luckily they are with me again. Mrs. S. took our first family photo today ;)
2011-03-27
Yesterday I was 2 hours in arms of my daddy. A friend from the room – Max – was being cuddled by his dad. I think they made to themselves a Father's Day;). I felt wonderful in my dad's arms. We were both sleeping, and my mum was taking photos. In the evening my mum talked to Laura's mother, from whom she learned many important things: about charity events and that professor Malec, who works in Munich, once a month has a visit in Cracow. My parents want to go. 3 days ago ultrasound study of my head surprised the doctors. I was suspected to have hydrocephalus, because my head has grown 3 cm in a month, while standard is 1 cm. In addition, previous studies have found that I had a stroke, level 2, and extended rear corners of the brain. The doctors were almost certain, my mum was really nervous for two weeks before the test was done ... But when it was done at last it turned out that not only I did not have hydrocephalus, but also all previous changes have reversed. The doctor, who told passed this information to my mum was very surprised. She said that such things hardly ever happen ... My parents think it's another miracle.
2011-03-26
It’s me again, little Mary . I weigh 1320 g today. Slowly, but I grow. Unfortunately I am breathing through the respirator again. The third time I hold out for almost 70 hours, then for half a day I was on respirator and next I was transferred to CPAP for the fourth time. I managed to stay on it more than 3 days, but unfortunately I had to go back to the respirator, because I had a very serious fall. At the moment doctors don't want to try again. I have still weak gasometry. About 70 mmHg of carbon dioxide, though it still better than 2 days ago when I had over 100. On respirator I have 39 breaths and 60% of oxygen. And I am taking 92% back. Yesterday my doctor thought that we would say goodbye, because it was very badly with me, but then I demonstrated to everyone again, how much I want to live. Doctors are also very much surprised how I managed to be on CPAP at all, since my heart expanded and it is so huge that it is filling the entire chest, and lungs are very underdeveloped. But somehow I breathed … I am strong … Mrs. Z comforted my mum, that they will mature yet.
2011-03-20
I am still on CPAP and somehow I hold on. My gasometry is a bit weak. Carbon dioxides are on too high level, oxygen however too low. Two previous attempts ended in failure because despite of the fact that through the most of the time I was doing quite well, at some point such a crisis came, that my saturation and a pulse decreased and then I had to be connected again to the respirator. I hope it won’t be like that this time…
2011-03-19
Today I finished 45 days. I weigh 1250g. I also eat more and more, not less than 11 ml. In the evening Mrs. Z. and Mrs. S. switch me to CPAP again. It is already the third attempt. The second was on 15th of March and I held out about 35 hours. Now it must be better …
2011-03-14
Today I weigh 1100 g. I have almost 6 weeks. On Thursday, 10th of March, for the first time daddy cuddled me. At night from Friday to Saturday thanks to involvement of Mrs. Z. and Mrs. S. I was switched to CPAP. I managed to hold out for 4 hours. I hope it will be better next time. Taking me off the respirator machine is very important since functioning on substitute breath is injuring lungs as well as it can lead to infection resulting with pneumonia, and it would not be good for me…
2011-03-12
At last my little stomach matured and nothing is lying in it. I am eating more and more every day. At present about 5-6 ml. My parents enrolled me to the Foundation Child’s Heart (Fundacja Serce Dziecka). It was necessary so that collecting funds for my treatment were possible. Many people declared to transfer to my account 1 % of tax in their annual tax settlement. What would I do without all these good people …
2011-02-27
I am almost as big as a bag of sugar now ;). There is little left to 1 kg. Many people are committing themselves to the aid for me in different ways: friends are organising actions, distributing leaflets, many want to give money, and others help parents to find specialists which will be able to heal my heart. Even 9 years old uncle Szymon ;) distributed over 100 leaflets involving his friends in this action.
2011-02-22
I already live 20 days. I weigh 920 g. Today once again I could cuddle up to my mummy. My parents contacted with many specialists, they called doctors in Lodz, Cracow, Zabrze, Katowice, even in Munich. Unfortunately all doctors think the same, that in order to examine whether it will be possible to perform an operation improving state of my health I must weigh about 2 kg. I didn't reach even a half of this weight. What's more I am eating very little and the amount of milk which I receive is being increased very slowly since taking food heavily burdens my cardiovascular system. I receive about 2 ml every3 hours. I must pull myself together …
2011-02-18
Today for the first time I was given to my mum to try the “kangaroo care method”. It works in this way: I am taken out of the incubator and put on mammy’s breasts. It is very important for me, because it helps me to calm down and to heal premature babies’ habit called “apneas of prematurity”. It was wonderful to feel the beat of her heart again. I felt so good, that I had a very good saturation and I slept during all this time. I look forward to the next time …
2011-02-13
I have already 11 days. I think I am surprising everyone. I weigh 840 g, I am growing. Today they let mum go from the other hospital so that she could arrive with dad to see me. They took photos of me, they sat by me. And I opened my little eyes to them. Dad laughed, that I have a look on my face as if I wanted to work something out right away, e.g. to run from the incubator ;). I am fidgeting all the time and when I move too often the saturation is falling a bit. Today I had also a hiccough and stuck out my tongue at parents;).
2011-02-11
I already live 9 days. Today I weigh 810 g. Daddy was with me and he took photos again. Mammy today didn't come to me, because she is in another hospital. They are giving me today 15 breaths per minute and 35 % of oxygen. I have saturation almost 100. I am waving my little hands and legs. These all cords are disturbing me a bit. Today they did the first trial of feeding me, but unfortunately it failed, because something is lying in my stomach. Perhaps next time will be successful. Still I must be given food through my veins. Today my mum’s cousin, 4 years old Marta, seeing my photograph laughed that they put such a big nappy on me, but I am very tiny, smaller than her dolls and there are no nappies fitting for me.
2011-02-08
I am in this world for 6 days. Everyone is happy that I am so strong, but doctors still don't believe in me. Many people are praying for my health. I am weighing only 780 g today. My weight decreased a bit, but they say it’s normal. Today my parents came to me with a camera together and are taking photos of me. Everyone says that I take after my dad, I have even the same blood as he, 0 Rh-, however my little nose I have after mum.
2011-02-03
From yesterday I am!!! Nobody expected me so quickly … I wasn’t supposed to appear until the 6th of April, and here is surprise, because life of my mum and mine were in danger, wonderful doctor and prayer of the family and friends saved us. We live both. I was born on Wednesday 02.02.2011 at 11.40 which is a holiday of Presentation of Christ in the Temple 910 g , I was 37 cm long. About 12 o’clock, when my mum was still sleeping on an operating theatre, dad baptized me giving me the name Mary (Maria). Unfortunately I am very ill, doctors say there are no chances that I will live. They are saying that it is a matter of few days, maybe weeks. Daddy is taking photos of me in order to show mammy how I look, since she must lie. I have low oxygen saturation about 80 %, which at times is even falling to 50. Ooops…
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