Now I can finally turn around and calmly look back on those days and interpret the feelings that built up and came out like waves. Happiness was replaced by great sadness...and then great happiness came again.
It was a beautiful spring morning when I felt my water break and my baby wanted to come out. With the classic quick preparation, I was as excited as I was with my first birth, which was 10 years ago, but oh my god, it's an experience you don't forget easily. My husband, for the purposes of this story, we'll call him M., was working like every Saturday, but with the best of intentions, he got home in an hour. I told myself it was okay and decided to make some coffee, but the little one wanted to come out. The contractions were 7 minutes apart, so with my help, I got to the hospital on time. "Walk," the nurse told me, I thought to myself, come on, walk with this much pain. An hour of walking, enemas, and filling out forms. Contractions every now and then, I can't even count them anymore. Let's go....
My little one decided and after two good screams, three breaths and a few hard pushes, a little red, wrinkled snot fell out of my insides. Eh, I thought, I haven't seen a more beautiful child in a long time. Nose and cheeks red like Rocky's after a few rounds. Weighing and a quick examination.
"Mom" - said the midwife, you have a beautiful boy. Apgar 10/10, I heard them say let's show him outside to dad and aunt. I can't even tell you how much pride filled my body. I became a mother of two children. I have a beautiful big and smart daughter and now I have a little kid. I was overjoyed.
A light nap, a visit from my loved ones and an all-nighter with my son. He slept carefree next to me, while the other little ones cried and cried. It was approaching 11 p.m. when they took them away. I was still gripped by the excitement and joy with which the day had begun. I looked out the window and there was an evil dove staring at me. A stupid feeling of fear ran through my body. I couldn't sleep. Mothers have some kind of sixth sense, I'm sure of it.
D-Day
(It could be the longest, it could be the second, but it was like the Normandy landings)
A Sunday morning, warm and springy. The children are coming, my little one is gone. I look towards the door and wait for the doctor. The doctor comes in and comes straight to me.
"You know, ma'am," he begins, "the child is a little cyanotic (I learned that bluer means less oxygen), he probably picked up some kind of inflammation from you." We'll do some tests and let you know. I'm still not worried, although I keep looking towards the door and frantically trying to figure out where and what he could get from me.
Time passed, around noon the doctor came in with his head bowed. He came to me, sat on the bed and said
"Mother, he's not well" his words echoed in my head. "He's suspected of having a heart defect, the child is very ill, we're sending him to another hospital where they have more experience with that. Unfortunately you can't do it with him, but go and see him before you leave."
You simply don't believe what you hear, everything was almost perfect. I walk past the nurse, not understanding what was happening at all.
A small room, an incubator...my little one inside, the colors were terrible, his eyes wide open. The nurse was constantly blowing air. There were countless tubes and needles around him. Only then did I understand. It's bad, it's very bad. I gave the little hand as much love as I could. They left.
"I'll let you know if he survived the transport and what happens next" echoes through the hallway.
I interpreted the doctor's professionalism with coldness. I poked at the stitches, with a piece of paper on which was the contact of the doctor from another hospital I went to the room.
Believe me, I don't know which way I came. The tears started, a dull feeling. How, why... where did I go wrong were the questions that kept running through my head. I didn't have the strength to call my own. M arrived. I tried to explain to him through tears what was wrong. He went after the ambulance to see what was happening next.
"The baby has arrived," the doctor said, now it's all up to them. I waited, hours passed, why didn't M. contact me. The uncertainty of such a difficult situation. How to deal with it? No way, you think time has stopped and you're trying to rewind the film, but only 24 hours and everything was rosy then.
Visit time, here it is. Why is he looking at the floor, why is he crying, has the worst happened? No, that can't be. It's not true, I don't want to hear it.
M. took me to the room, we sat down and the story began.
"The baby has a severe heart defect, the most severe, because the left side of his heart did not develop during pregnancy, but there is a temporary solution with surgery in Germany. The percentage of such children is very small. Currently, there is no child over the age of 12 in Croatia because such severe and complex heart defects were not previously detected in time and treated with surgery."
"But there is a problem," continued M., "despite the quick response of the doctors, the child's organs have suffered. His kidneys, lungs, and liver have failed. He is on a respirator and is currently being kept alive by medicine. If he survives until Friday and if his body recovers to the point where transport is possible, he will leave for Germany."
Word by word, my previously peaceful world, perhaps disturbed by an argument or a bad day, was crumbling. The weight of his words broke my heart, I kept wondering how I would continue. God, I cried out, where are you now, why did this have to happen to us? Why?
I spent the night in agony, alone in my pain. The cries of children from other rooms, the cheerful problems of breastfeeding seemed distant and somehow completely inaccessible to me at that time. On my own responsibility, I went home the next day.
A week of struggle
Intensive care, peace and quiet...
Incubators, monitors, medications, infusions. Kind nurses. Day after day, we went to the hospital, listened to the nurses' whispers. It's better, it's a little better. He's peeing, his kidneys are back, his liver is recovering. There is hope, and while there is, we don't give up. A Dinamo player by nationality, small, blond with the motto "No surrender".
Monday passed, then Tuesday...then Wednesday. Passport, photoshoot. Lost, we tried to get any information. I didn't know where to go first. Should I go with him or stay in Zagreb. When I got home from the hospital, I sat down and decided to talk to my daughter. After all, she's already 10 years old, but she'll understand. She came home from school - "mom" - she said "I have to tell you something."
She chatted like any ten-year-old, as they asked her in class how her brother was and she told them that she had heard that he couldn't breathe but that he would be fine.
"He'll be fine" rang in my head.....he had to be fine, there was no other way. I sat her on my lap and told her everything, even told her the worst prognosis, I thought she deserved to hear it. The reaction was terrible...tears were streaming everywhere, literally flying from her blue eyes. She was sobbing, scared for her brother's life. One can imagine how much those children grow up when you least expect it. She looked forward to him day after day as my belly grew, she saw it and then we took it away from her. I hugged her...we both cried.
"It'll be fine" - she repeated through her tears. And it was.
We lived to see Friday, and that was the first time I saw M. hiding tears. I decided to stay. With a lot of hope, I put my son's life in the hands of doctors outside the borders of our country.
Operation one
Days passed, English, which I didn't really like, turned out to be very useful.
It's strange how some numbers, whether by chance or not, appear in some things in a completely surprising way. My father and daughter were born on the same date, M. and I have swapped birth dates and months, and now the time has come for the operation on the day of my father's death. I kept repeating to myself that this was my son's rebirth, that perhaps it all had some cosmic meaning.
The operation went well, the child tolerated it well...all in all, promising for now. The fear that had crept into me prevented me from being happy, it worked. He is alive....
We expected him to return, but after the initial joy, sadness again. The child was returned to intensive care, he is on a respirator, it's not so great. Problems with the lungs that suffered greatly in those first hours of the fight are clearly hindering a normal recovery. Another stomach cramp, sleepless nights. Day by day, that's how we started living and we're still sticking to it and it's going well. Day by day, we listened to the progress with him, two forward, one back, three forward, five back, but we still came back. Almost two months have passed and the doctor who was treating him at the time said "we've only scratched the surface of recovery, we haven't even reached the first step yet." I only realized what he meant later, but it didn't matter to me at the time. We came to Croatia, we forgot about the first surgery, we're slowly moving forward.
The first months
We were still regular patients at the hospital. Feeding was a step we tried to take, but it didn't work. The tube, which was his source of food at the time, was sticking out of his little nose in a funny way. He was already a bigger child in the post-intensive care rooms. The nurses loved him, like a little cheerful dwarf who sticks out of colorful paper during the Christmas holidays, so he delighted the nurses and doctors with his smile.
Every day I ran upstairs, trying not to miss a single feeding, even if it meant giving him milk through a tube, the very act of feeding for the mother represents an even greater dose of connection with the child.
He was gaining weight and growing nicely, but his lungs didn't really want to just forget the initial shock they experienced. He was on oxygen, we were constantly practicing respirator exercises with him, and the concept of aspiration disgusted me. Cleaning the nose of such a small child and trying to get the mucus that was accumulating in his lungs was a ritual. First exercises, then aspiration, then food. And now after all that, when he hears a sound like that, his eyes become glassy.
In time, they moved us to a regular ward and I was able to spend a lot more time with him. A lot of love, a lot of love that we gave him is responsible for his progress. I watched the physiotherapists practice with him, and when he and I were alone, I practiced the little legs and arms that had known nothing else until then except needles, probes, and adhesive plasters.
Life in those two months was a relationship between hospital and home. The great support of my family, without whom I could not have pushed through the difficult moments in my life. I waited until he fell asleep at night, even if he woke up two minutes after I got in the car and drove home, but it was easier for me that way.
I would always start talking to my little girl, I loved those late conversations. The everyday routine of the house relaxed me. Jobs like ironing and dusting seemed fun. I thought about him at night. The safety of the hospital and the staff who could always come to his aid comforted me.
Operation two
The time has come for the second operation, don't ask me too much about what and how because as a layman I will get totally confused trying to explain. I only know that we flew to Germany on a warm summer day.
A small plane, no bigger than four or five meters, I don't know, mostly small. Me and the staff of the German hospital, three young and warm human beings. My mother in a carrier and a little baby girl in an incubator. I've never flown on a plane before, so this was a truly memorable experience for me. I thought we'd be soaring for hours, and then here we are again, about an hour and a half later, and we're landing. The care of these young people was truly amazing. English is coming to the surface again, some expressions I've picked up from countless American series were really "nice". The important thing is that you can communicate at some normal level. We left around noon and it was already evening by the time they settled us in. Due to some misunderstanding, I didn't have any accommodation that night, so they put me in a bed in the hospital in their rest room, which was especially kind to foreigners. I ate bayadere because I was hungry, or maybe that's how my psyche worked?!! The next morning I was placed in a house where parents whose children were in the hospital stay. It was about 2 minutes from the hospital, I had my own room, my own corner of the refrigerator. Great. Parents from all over Europe, everyone has their own difficult story. The visiting time was too short. After the procedural examinations, the day of the operation was set. The smile of the little creature that morning meant the whole world to me. The operation began, now I just had to wait. I retreated into solitude, I couldn't even talk to anyone at the time. I simply wanted my peace. I walked the streets of Munich, but not too far from the clinic. Time passed slowly like a lazy summer day.
I called to check.......the surgery was still going on, there were some problems....some complications...
I called again two hours later, I was so worried. He arrived at the intensive care unit, but I couldn't get to him until an hour later. I don't know how many hours I've lived through. I went in, he was sleeping. They kindly explained to me that he was sedated to make it easier for him. I sat down next to him and just gently held his little hand.
The operation went well, a few problems due to the pressure but so far everything is fine. The nurse's question whether I wanted to try bottle feeding him was unpredictable and like a dream. The day after the operation, this fragile little creature was happily sucking on a bottle. He ate 100 ml .........unbelievable.
The recovery was short, my hero was getting stronger day by day. After less than 30 days, we are going home to Croatia.
We arrived, but unfortunately he wasn't strong enough to go home yet...we stayed in the hospital for a while longer. Again, the home-hospital relationship, showing not to be late with the mother's obligations.
And then one Friday the doctor suddenly asked...do you want to go home for the weekend. Boom, the question was like a time bomb. Of course we want to, I almost shouted, not realizing the volume of my voice I said it with, my kid, after a great fight for his own life and after 5 months of hospital stays, is finally going home...home to his little house, to his little blue bed...even if it's only for a short time, he's going home...we can finally feel like a whole family.
I don't even have to talk about the feeling of happiness that overwhelmed me that day when we got in the car and after a 15-minute drive arrived in front of our building, entered the apartment and said we're home...we're really home.
That whole first night I sat by the crib and watched him. Is he a baby?... Is he a normal color?... hasn't he turned blue?... isn't he cold?
A hundred questions... a mother's worry is endless... but it went well... and here comes the second night... and now returning to the hospital was even harder... now that we had experienced that family unity that we had missed during these 5 months... it was hard, very hard to leave him in the hospital again.
But it wasn't long before he came home permanently, over time we got used to giving him the medicine that he had to take every day, we continued to exercise independently and the child grew a little. A child who was written off, a child who survived the shock of the organism in the truest sense of the word, a child who was told that he might not be mentally normal, my child, my brave warrior who never gives up, learned to speak, run... eat well... learned to enjoy life... his joy of life that shines from him pushes you forward and in the worst moments that we have ever experienced, you realize that you have to fight for that child and never give up, even when you are most exhausted, you have to find the strength again and start over because he deserves it. Regular check-ups with the doctor, two heart catheterizations and preparations for a third open heart surgery, that has been our life for the past 3.5 years. We found out that the kidneys also suffered in that initial struggle of the body with the impossible, one of our kidneys is smaller but still functioning for now. There are days when I have a hard time accepting his heartbreak, aware of the worst possible situation, but I look at him and enjoy him... his joy and the smile that has been shining on his little face since morning.
Operation three
We unexpectedly got an appointment for our third surgery, at the end of the summer. I've been preparing for it for three years, but now that I have a date and know that this is it... somehow fear still enters my body. Unfortunately, it's school time, so my daughter had to stay with her grandmothers, and we set off on another adventure abroad.
The surgery was postponed due to an ear infection that we didn't even know she had... terrible... waiting... one week, another... days pass.
Monday the 13th... um... is that really the day for the surgery... after thorough preparation, no. Another postponement... this time due to unforeseen complications with the child who was in front of us. Wait another day... look into your soul and find strength because you'll need it. Let's go, that's it, M and I followed him to the operating room, the little, slightly asleep mouse He waves his little hands, the purple uniforms take him over. Now the wait again...
After 8 hours we can finally see him again, he has been admitted to the intensive care unit, he is sleeping and on a respirator... The surgeons are satisfied, the three-step journey is over... now we finally have 95% oxygen and we can.........EVERYTHING.
The recovery was more or less like school... although when I try to imagine the pain my child went through... the opening of the chest, the fluid that appeared around our lungs, the inability to breathe, countless blood draws, drains that stick out from every side of that little body like an alien. Children are incredibly fragile and tiny creatures, but surprisingly brave.
On the fourteenth day after the operation, he stands on his feet... shaky and trembling, but walking... this little man once again shows extraordinary willpower.
Due to the nature of his heart defect, we have to prick his tiny finger every day and determine the dose of medicine needed so that the body, due to the new circulation in the organism, does not create blood that is too thick, so that each heartbeat would be a great effort.
Let's go home... this time directly home... the tears I cried that night would sink the tiny boat... I had mixed feelings of happiness, relief and gratitude.
My child has been given a new chance, he may be living on borrowed time, but he lives, he laughs... he grows... and he does not give up......no way............................and never...
Half a heart is enough for love
M.C.
Is there anything more beautiful than receiving the news that you are going to become a mother again? A three-year-old boy, a 9-month-old girl, and they are getting the news that they are going to have a brother. As a diabetic mother, I have my check-ups at one of the best hospitals in Croatia, Petrova Hospital, where I am led by a team of doctors who are already familiar with my illness.
So I have already had two caesarean sections and two beautiful and healthy children. At the first check-up at Petrova Hospital, the doctor who performed my ultrasound in the third month of pregnancy told me that the baby's nuchal fold was thickened and that I would probably give birth to a sick child. It means that he will have some kind of syndrome. I was all in shock and disbelief, with a lump in my throat, so miserable on that examination bed, I couldn't even speak. Another doctor also examined me, who confirmed that the nuchal fold was slightly enlarged, and at the suggestion of the third doctor, she persuaded me to have an abortion, that it was the best solution.
Because why fight with a sick child? As if I knew they would suggest it to me, I immediately refused because where do I have the right to kill my child? I made the decision that it would be born healthy or sick. We continued the check-ups and did a triple test, which was normal and refuted all their suspicions that the child was sick. With each subsequent check-up, the child progressed more and more, the pregnancy was normal and the fifth month arrived. I said goodbye to my children and promised that I would soon bring them a brother. I had no idea what a fight for life we would have. The scheduled date for the cesarean section was approaching. That morning, May 12, I was the first in line for surgery.
I could not have imagined that that morning, instead of going into surgery, I would want to cancel everything because somewhere inside me there was a fear that something was wrong. The nurses, or rather the family I had made in the hospital during my stays, comforted me and encouraged me that there was no room for panic and fear. And I went to the table, spinal, wanting to be awake to see my treasure.
At 9:14, Ivan was born, 49 cm and 3.850 kg, Apgar 10/10, first cry, first kiss and seeing him was the greatest happiness in the world for me. That same day, the nurse brought him into my arms, placed him on my chest and the only thought was, God, thank you that he is alive and healthy and that he is not as they told me at the beginning. Me and my little perfection. Everything goes as it should. But on May 14th, 6:00 in the morning, the nurse is supposed to bring the children to be fed, but Ivan is not there.
She comes to me and whispers softly in my ear that Ivan ended up in the intensive care unit because he turned a little blue during the night and was breathing rapidly. They suspect a heart murmur. My God, what happened? In a panic, I immediately call my husband, and he comforts me that they will find him. little mouse be well. We had no idea that that very day our child would begin the biggest battle, the battle for life. At around 10 o'clock in the morning, a pediatrician came into the room to the bed where a young 17-year-old girl who had given birth at 25 weeks pregnant was lying and was telling her that her little girl had died. My God, why am I hearing this, how is she so cold towards her, what happened to my Ivan, was he alive?
I know there is no other way to tell her this because it is their job not to show emotions towards their patients. I had no idea that they would also turn to me and tell me that Ivan was going to KBC Rebro to have an examination with Dr. Malčić. Who is he, what will they ask him a hundred questions from my mouth, and they will answer that he is in the best hands. I did not manage to see him that day because during the visit he was taken to Rebro and remains there.
The next morning, I don't even know where I get so much strength from, I get in a taxi and go to see my little happiness. I enter the intensive care unit where the nurses take me to his incubator, I open the window because I just wanted to touch him. Along the way, the nurses introduced us to everything related to his heart defect, the name of which I couldn't even pronounce. My husband and I go to see Prof. Malčić for a talk so he can introduce us to Ivan's condition. Then he tells us that Ivan has transposition of the great arteries of the heart and that his condition is more severe. The operation is feasible, but that we need to be prepared for the consequences that may occur. Is there any worse news that can be received for such a small child, a child who has just been born.
I remember after Prof. He said that the operation was feasible, at the end of the same conversation my husband asked him again if the operation could be performed, and he replied that there was no point in repeating the same words he stood behind twice. He gave us hope. On May 19th they performed catheterization on him, which he tolerated well, confirmed his diagnosis, and gave us instructions that he would most likely go to Munich for the operation, and that on May 23rd a team of doctors from Munich would bring a child to the ward who had undergone the operation and take over Ivan.
One little girl encouraged me so much that day that I will never forget her words. She lifted her shirt and showed me the cut on her chest and said that I was going to the best hands in Munich. There was nothing to be afraid of, everything would be fine.
At that moment, I didn't need anything else. As soon as I arrived at the second hospital, our match began. The doctors confirmed everything that Dr. Malčić had found on Rebra, and we were waiting for the date of the operation. Tuesday, May 28, 6:45 a.m. I came to see my little angel off to the operation, where my sister told me to say goodbye to him.
And I, still lost in time, told her that I wasn't saying goodbye to him, but that I wished him all the luck in the world to endure the match of his life and that we would see each other in a few hours. I kissed him on the forehead and left him to the team of doctors who had saved the life of another child.
While the hours passed, praying for them in a nearby church, I received a call that the operation had gone well and that I should come see my son. I immediately rushed to his room, the little guy hooked up to a hundred beeping machines, a hundred tubes around his little lifeless body.
I watch and I can't believe it. A nurse comes to me and wants to explain the entire operation, his current condition, the condition that can occur, and I answer everything that I know. She looks at me in amazement that I know everything, and today I don't even know how to answer that question because I don't know what kept me going that day and in those moments.
Ivan had his chest open for two more days so that there wouldn't be any complications so that I could react immediately. They say sadness, but I didn't feel so much joy during those days because such a small being fought for his life, fought to live. Day after day Ivan got better and we were just waiting for us to return to our country.
During our stay in Munich, a wonderful circle of families was created with whom we became close and supported each other. It was morning on St. Anthony's Day when the ambulance came to pick up Ivan. We were going home. Indescribable joy knowing that we were almost at our doorstep and that we could finally take Ivan to his brother and sister.
We are back at Rebro where Ivan has to undergo a check-up with Prof. Malčić and then we are traveling home. Just imagine the joy of the father who saw his son through the hatch in the incubator at the age of one and a half and the moment he took him in his arms for the first time. Ivan is two years old today and during that period he has become a very cheerful and playful child.
I want it to stay that way. When they ask me about his illness, I only tell them as much as I know because I don't want to delve too deeply because there are doctors who tell us when we need to know and how much. For me, he is a healthy child without any flaws. I want him to grow up normally and happily, and when he can understand, I will tell him everything he needs to know about his illness. I want him to live the dream of every child, so that one day he grows up to be an example that illness cannot stop a person from achieving his goal.
And know that it was not easy for me to put all this on paper because I have only now felt how painful it was to remember every moment when he fought for his life. Thank you to Prof. Malčić for fighting for Ivan to be a living boy today, thank you to Dr. Vlado for watching over him with his watchful eye whenever necessary, thank God for finding me in the right place during the birth because if I hadn't, he might not be alive today. And most of all, thank you to you mothers who are going through this with your children so that they don't feel different from others because they are our heroes, heroes with big hearts.
