Ages: 9 & 6
Cambrie was born via Emergent Cesarean when my placenta abrupted during my pregnancy with her. From, the time of her birth, I had known life would not be the same. She was a very poor feeder, extremely tired baby with poor muscle tone. Much was passed off as symptoms of a traumatic delivery and would recover with time, but at a few weeks old, I found my little one blue in her bassinet before morning. They said if I had not checked on her at that time I would have likely buried my second born from SIDS related incident instead of her being with us today. I resuscitated her little infant body on the floor of our living room until the EMS finally arrived to take her to the hospital. that admission would start a very new life for us.
Cambrie has since then been diagnosed with multiple diagnoses. Illnesses, disease processes than have the potential to shorten her life or worst case scenario end her life permanently. Some of her many diagnoses are Immunodeficiency, Crohn’s Disease, Mitochondrial Disease, Osteoporosis, Juvenile Idiopathic Arthritis, Hypotonia, Joint Hyperreflexia, Adrenal Insufficiency, and Failure to thrive, Asthma, GERD. She has a feeding tube that she receives majority of her nutrition from with a feeding pump. She requires much exercise and therapy at home when she is able and frequent rest periods when she is tired. She is in Physical Therapy, Occupational Therapy, and is currently on the waiting list for seating clinic for a wheel chair. Long distances are exhausting and fatiguing to her muscles and can be painful to her joints. She has clap feet, low tone, and muscle weakness in her legs so she requires orthotic devices. We are hoping to get a scholarship at Lakeshore Therapy to continue water therapy. She is on Immunoglobulin infusions weekly, Immunomodulators/Biologic Infusions every week that she must receive at the hospital infusion center and multiple medications, including organ rejection medications and steroids which she has been on for most of her life. She has had multiple surgeries, procedures, and hospitalizations throughout her life.
To meet Cambrie, you would never know anything is wrong. She hides her pain and grief behind a beautiful smile and a joy and desire for life I have never known in anyone. Cambrie is a joy and a pleasure to be around and I am a better person because of her. God has blessed me with her light in my life.
Brennen came a little over two years after Cambrie. I found out I was pregnant with him after one of the many rounds in the hospital with Cambrie. We were not planning on another child so he was a surprise, but a most welcome one, however, the fear that overcame me wondering how I was going to manage three children and one with special and medical needs was almost overwhelming.
Well, I had to get over that quick when I became ill myself. I went into heart failure with my son’s pregnancy. They did not know it was heart failure in the beginning. I was extremely sick, put on bedrest with Obstetrical home health nursing care and eventually delivered my son by emergency Cesarean when I went respiratory distress, pulmonary edema and went into Intensive Care when he was born. I just knew there was no way I would have two sick children. All the doctors had told me it was a very slim chance for that to even be a possibility. But, when I finally came out of the Intensive Care and was well enough to hold my sweet, baby boy and given him a bottle, he struggled and struggled to feed and eventually gave up eating……and I cried. I cried and I knew.
Brennen followed in his sister’s footsteps, but walked a lightly different path. He didn’t speak until he was over four years old. He received a feeding tube at a few weeks old, then a more permanent one at a few months old. His anatomy was a little different so for many years he had a specialized tube that could only be replaced in surgery, so every time it fell out or was dysfunctional, he had to have another surgery. He was diagnosed with Gastroparesis, Crohn’s disease, Immunodeficiency, and CSID (rare, it’s where you are missing digestive enzymes and cannot digest your food appropriately). He has had multiple surgeries and hospitalizations. He takes multiple medications, including Immunomodulators and Immunoglobulin infusions. He has a feeding tube and feeding pump and is on continuous feeds at night, just like his sister.
Brennen is a strong boy, who is trying oh, so hard to grow up to be a good man, just like his Daddy. He tries so hard to be brave with his blood draws and his sticks for his infusions, but it is hard not to cry when your six. I tell him, strong boys cry, it shows you have heart.