Do you have problems with your bowels?
Are you looking for support? Do you want to know how to enjoy your life despite of a PEG, feeding tube, central venous catheter and many hours of infusion administration?
Do you have an inflammatory bowel disease and a need for some positive energy and knowledge from other IBD patients?
Do you live in a country without any support groups for people with digestive system insufficiency?
Join us! Together we will try help you!
We had learned of the fact that we were going to become parents in less than two months after our marriage. The course of pregnancy was correct and the results of tests and check-ups didn’t raise the doctors’ suspicion. It seemed that our baby was properly developing. At last, the much awaited day came – 15 July 2011 (precisely the expected date of birth). Our daughter Emilia came into this world at 19:40. We were euphoric, even more so as she got an Apgar score of 10. After 3 days spent in an obstetric unit, we went back home.
Unfortunately, our happiness was short-lived. Three weeks later Emilia was hospitalized with a very bloated belly, lack of appetite and vomiting. It was already at the reception, that her state was described as very serious. We were told: “It’s hopeless. Pray for a miracle”. Our world collapsed in a single moment. All of sudden, we could have lost our Little Happiness. Which begged the question – why? The diagnosis struck us like lightning: “Ileus, immediate life-saving surgery required”. The surgery took 2,5 hours. The surgeons eliminated the immediate danger and were waiting for blood circulation in the bowels to return. Unfortunately, it didn’t occur. This time we were told: “Bowel necrosis, a resection is necessary“. After this operation, Emilia was left with 10 cm of intestines and she had an ileostomy formed.
After eleven days of struggling to stay alive in an intensive-care unit, Emilia was moved to a surgery unit, where she had a Broviac central venous catheter inserted. In the fourth week of her life, our daughter was moved to a clinical nutrition unit. It was there that we have learned the procedures of inserting, removal and care of the catheter as well as the pump’s usage. We have met wonderful people over there. People always eager to help and to support with their kind words. When we had finished our training we could take Emilia back home. She was three months old at the time. We returned full of worries about whether or not we could handle caring for a child and being “online” by the pump for 20 hours a day. Every mistake on our part could cost her life after all.
We have slowly adjusted to the daily rhythm set by the parenteral nutrition. After some time it became a routine which in turn led to a disaster. My single mistake caused Emilia to be hospitalized with a fever of nearly 40 degrees Celsius (a bacteria was identified in the catheter – sepsis). That taught me to always prepare everything the best I can. There were also enormous problems with the stoma care: the bags coming loose and inflamed skin on the belly, even wounds. Fortunately, in 2013 a decision was made to close it. The surgery included another resection of the intestines and Emilia lost a half of her bowel. They restored the continuity of her gastrointestinal tract though, which led to a drastic improvement in Emilia’s condition and shortened the span of parenteral feeding to 13 hours a day. Emilia does not have a special diet. She can eat anything – even mushrooms, sausages etc.
During our misadventures with nutrition, we have met Marek, a big-hearted man who always provides counsel and is never indifferent towards another people’s problems. He proposed we joined the “Appetite for Life” Association. We gladly accepted because we had been wanting to meet people who face the same obstacles as we did.
Parenteral nutrition is not a simple matter and someone who doesn’t have to go through this on a daily basis can never fully understand us. Thanks to the Association we have become happy owners of a tiny mobile parenteral nutrition pump which has largely changed our life. Up until now, Emilia had to stay connected to the pump 20 hours a day so she spent almost all the time at home. She barely had 3 hours to go for a walk, see a doctor or meet friends and family. The new pump has completely changed it. It fits in a small backpack together with the nutrition bag and doesn’t limit our mobility. We can take it wherever we go so Emilia is able to explore the world without any limitations. Even now that feeding takes 13 hours a day, the pump is still very useful, for example during the trips organised by ”Appetite”. These are a pleasant diversion from everyday life. We can meet other people with similar problems there (both children and adults) and exchange our experiences. We are very thankful for that 🙂 We have managed to venture out a bit farther and visit London. Unfortunately, all long voyages turn out to be quite problematic as we have to return in order to fetch the next “bags” for Emilia. Currently, an infusion takes 12 hours/7 IVs a week.
Emilia is a properly developing 3-year-old. She is full of energy and joy. To make up for the time spent bound to the pump, she is incredibly lively. She runs, jumps, sings and spends time with her peers. She has been attending a preschool for 2 years. She likes the ballet lessons the most. She is an active child so she will probably dance in future as well. Although the pump is going to stay with us for the rest of our lives, we are happy that Emilia is with us and we cannot imagine a life without her. She is our Treasure, a gift from God.
In spite of many difficulties and problems, we always dreamed of a second child. Our wish has been granted in May, when Filip came into this world – a beautiful, healthy boy. Emilia is a great elder sister. Every morning she keeps saying: “He is so cute. I love my Filip”. I am always greatly moved by this. How such a small child, having been through more hardships than many adults, can express her feelings in a manner so wonderful. She is constantly hugging and kissing him and she is very proud to be an Elder Sister. Our brave little Daughter teaches us how to live, never to give up and to always have a smile on your face and a hope for a better future. To take on new challenges every day and never to lose your “Appetite for Life” 🙂