Death, which comes to Zosia in silence

My child has been dying since she was born, and the worst part is that the disease destroys the heart of just such a confident and cheerful girl, unconscious of how great a gift is her life. Zosia has been dying so many times now that I am no longer allowed to give her away. I can not give up because I only have my disarming smile, in the face of such great danger. We fight for the heart that all doctors have done for the losses that hit against medical knowledge, against all predictions. It is hard to believe that a girl who smiles so joyfully of all these pictures will die if she does not get help as soon as possible.  

 
At the hospital I was going to give birth to a healthy baby, which in a few days I will scroll, bathe and like all young mothers loved to impossible. Everything was different. Instead of joy - fear, instead of hugging - tears and pain as strong as only a mother who loses a child but still believes in miracles. The worst part was that before I found a man who would help me, Zosia tried to slip away every day, and I kept her handy every day and begged God not to take me away. Today my daughter is a smiling baby, in a colorful dress, of which only a few know the truth. No one who does not know Zosia knows that the scarf on her neck hides a hole in the larynx that Zosia breathes, and colorful blouses cover the body, torn with scalpels, pierced with needles and saved at all costs so many times.
 
She smiles, but she always smiles, even when the hour separates her from the ICU. In this ward, she landed just after childbirth for the first time. The doctors worried that it was too long for a healthy newborn. They told me they would take my daughter only for a moment to make an echo of my heart that in a few hours I would get her back in her arms. I got, but only nervous news that they transport my child urgently to the Department of Cardiology and Nephrology in Poznan.

 
I lingered on my own request to go there for her, although I could not stand my own feet. Double ventricular outflow pathway, ventricular dilatation, right ventricular narrowing,
 
Behind us nightmare operation, ICU, lung inflammation, with survival chances estimated at 20%. I will never forget the day of surgery, the skeptical miners who did not see the chance, but leave Zosia without surgery, it is as if watching a certain death of a baby.
 
I cried and clenched my fists, praying for a miracle when after 6 hours of fighting for my daughter came out a doctor and said that Zosia is dying. We can not close her chest, the operation is over, but her condition is critical. This is not what the mother wants to hear on the 21st day of her child's life. The doctors did not fight for her health, but for the time, which suddenly suddenly began to miss us ...

 
Heart rate 30/40 - OIOM. When I walked there after 10 days I did not recognize my own child. Just a kilo of suffering in the room, where you get the impression that all the devices will soon start to squeak and squeak, declaring that the heart stopped. I did not dare take her pictures, I stood, and my tears flowed down my cheeks.
 
I knew we had won some time, but I felt inside that it was not over yet, it was only the first win of the battle, followed by the next, even heavier to win. On the 10th day after the operation Zosi bridge was closed. So it's been 5 months and Christmas. ICOM has become my and Zosi's house and from the heap of cords and hoses only hope. So began motherhood under the promise of that promise that we will persevere and we will return home together, two.
 
March 14 we left the hospital. The ambulance was driving a frightened driver who knew he might not be able to reach the destination. I am sure many doctors will remember me for life - a mother who never forgives and for which there is no longer impossible. I am also certain that on the day of the discharge, many doctors did not believe that we would ever see each other again, just did not believe in a miracle that was so obvious to me.

 
Today, while sleeping, I look at her, and in memory I have a moment when no branch in Poland did not want us. Damaged liver, tenderness of the trachea, gastrointestinal tract, who did not want to take a job, but still managed.
 
 VRE - is a strain of bacteria that lives in my daughter's body and does everything to make it harder. Every surgical intervention is almost a certain sepsis and a history of dying that starts afresh. What consultations came up tears, because how much can you hear that the child does not say that it is just a life stopped for a moment and sooner or later will come the inevitable end? Who normally agrees with the verdict on their own child, who will not do anything to change the reality?
 
 
The fatigue of the sick heart was up to 100 gradients, and Zosia could no longer measure the pressure. I did not look at the calendar, but on my watch, because every hour was a death that was approaching my baby. Warsaw, Łódź, Prokocim - Cracow and only the refusals, even attempts to prepare me for what I will never be ready. She will eventually die, because it is no longer the heart to the dead. I had a 2-year-old girl in love with life, one that can not be abandoned, so I did not surrender.

 
 
Documents sent to the USA and Germany. Professor Edward Malec replied almost immediately. We went by car and to this day no one believes how Zosia survived this trip. The study was done, and I was allowed to believe with even greater strength when the Professor was worried at 4am and said he did not know if he would operate ...
 
I begged as soon as the man put before the last chance in life. For the first time I believed someone more than my own heart. I promised the Professor that whatever happens, there will always be a man in my heart who saved my child ...
 
 
 07:15 Professor Malec took Zosia to the operating table. About 5:00 pm I heard my daughter survived. Prayers have been heard, and death has been defeated for the second time ...
 
In Munich we were still a month, and Zosia's second birthday was spent at home. Death lost, but she did not let go, she decided that she did not have a chance with us, so she sneaked off the other side.
 
A tumor was detected in Zosia's dad, who took him in less than a year. The day before his death he told me never to doubt nor forgive that I was fighting for her only now. Only on the day of the funeral allowed myself to vent my emotions. 3-year-old Zosia wiped my tears with a tetra diaper, she set me upright probably forever. When Waldek left, Zosia was diagnosed with total deafness, which caused complications after the first operation, she battled with pneumonia, lived but did not get anything forever.
 
We all knew that there would come a time when Zosia's heart would weaken again, that we would open our throat again and die again, but we did not think that this moment would come so quickly. Yes, this is the moment when Zosia is no longer able to climb the stairs when we are walking back from a wheelchair when we fall asleep to rest our hearts during the day.

 
We were alone, but probably in our strength. I'm just afraid we will not be able to meet Professor Malc on time. And time has come. Every next week will be worse than the previous one, so we have to go back to the man who can bring my daughter's heart back to life and make our story go on. Zosia finds it more and more difficult to laugh, and I find it increasingly difficult to keep calm, so please help us once again gather resources to keep me happy and my help me save my daughters life.