Our boy Sven Ivon was born at 23 weeks and 3 days; 32 cm long and weighing 645 g. First 7 months of life he spent in NICU fighting for his life.
He survived multiple health complications – few times septic and one septic shock, few times pneumonic, urinary tract infections… necrotizing enterocolitis operation and had ileostomy for 3 months (NEC), received bilaterally laser therapy intravitreal and bevacizumab injection because of retinopathy of prematurity (ROP)… had intraventricular hemorrhage (IVH) grade II/III… Because of tracheomalacia he had difficulties on breeding on his own – was 65 days on mechanic ventilation and after that some time on CPAP and nasal catheter with some additional oxygen. But he was struggling for every breath and needed to get tracheostomy and cannula. After that his health improved and he could come home. It was crazy rollercoaster but we were finally home together.
Next 13 months he had few hospitalizations because of pneumonia, rotavirus, bronchitis…but every day he was better and better. After some time he didn’t need additional oxygen anymore; motor function improved, he was less hypotonic; he succeed to move around cannula and make a lot of different sounds; nystagmus was less visible and he gained glasses and started to see much better. He had very good fine motor skills, learned colours, liked story readings, walks in stroller and car ridings… Life was challenging but amazing, just to be near him and look his love for life and persistence.
LIFE CHANGING EVENT
In May 2017., in five minutes our lives changed again. We were at some hospital for consultation, but doctor made mistake and suddenly he went into cardiorespiratory arrest. He was dead for 25 minutes before they succeeded to bring his vital functions back. Next two weeks were hell on earth. Doctors were sure that he will never wake up. His was in vegetative state worse than coma because he didn’t have eye reflexes or any other reflexes, EEG was practically straight line. Epileptic seizures started because brain was without oxygen for so long and the worst brain edema started to show. His body gained abnormal decerebrate posturing, and doctor said that it is over, his brain doesn’t communicate with the rest of the body. Every day they were telling us that someday we would need to accept situation and give consent to turn off his mechanic ventilator. Every day we were telling them that he is our beautiful baby boy and we will never accept that, in our hearts we knew that he will come back to us. And he did!!!!!
At first we saw his eyelids move a little, but everyone thought we were crazy. Next few days we saw more and more good signs, and then he started to have his own breaths! Then doctors started to believe us, send him on new tracheostomy (till then he was on endotracheal tube) and next day he was on CPAP and day after that breeding on his own with no problems. Recovery had started and after only 47 days, we were miraculously home.
Almost 7 months of being home…situation is very different than before, like you are having some other child. He is again additional oxygen dependent and very sensitive to infections. We were fighting epilepsy; it was difficult to find right drug and dosage. Every time EEG is better, there is now a nice forest of brain waves, but some focal EEG waveform abnormalities. His brain has some serious necrosis of occipital lobe and thalamus and some brain cortex lesions. At first he didn’t look at anything, always holding his eyes up; now he has cortical visual impairment but his vision is much better, can focus and follow targets and people, but still much work is needed. We work at home on dr. Roman recommendation. Remains of sensory system are recovering too, but he needs a lot of sensory integration and therapy in sensory room so we set one at our home, but some important things are missing.
His fine motor skills are very bad now; he does not grab or manipulate objects, sometimes holds for short time something we put in his hands. We would like to work on Lili Nielsen recommendations but we need to get some equipment first. At first he was in such horrible spasm we couldn’t move his hips, knees or feet, but with a lot of exercises now we can move it and also he can move it himself. He gained his head control. Now he can stand holding on to us for 30-60sec, but he is standing like ballerina.
Does not creep, crawl or sit independently, but could sit for a while in some positions. We work with therapist and also at home different types of neurorehabilitation techniques (Vojta, Feldenkrais, Masgutova, Osteopathy) and he is progressing better than anyone could expect. He lost his ability to eat on his own so we feed him through nasogastric tube. We are working on oral therapy whit z-vibe. He communicate with us with body movements and facial expressions, but sometimes that inability to express better makes him angry so one of our therapists recommend eye-gaze communication.
HOW YOU CAN HELP?
Most of his therapy treatments he receives at home because he is very sensitive and need to be protected from infections. In our part of Croatia (Istria), health insurance doesn’t pay any therapists to come home so we need to pay everything and also we work a lot alone, like therapist taught us. Our every day is about our brave boy and his rehabilitation. In next few months we need to buy more therapy and medicine equipment and pay more therapy sessions and parent educations to help him with his recovery. We need your help!
Please donate and help our Sven Ivon to restore his beautiful smile on his face and to make him walk independently. To help us get the word out, you can share our link to your social media! Thank you!