Henry made his way into the world 4 months prematurely. He had a long road ahead of him in the NICU. His lungs were underdeveloped requiring lot of support from many different oxygen machines and his bilirubin levels were so low that he lived under the blue glow of a bilirubin lamp for several weeks. The second night of his NICU stays the doctors discovered that Henry had a grade 4 brain bleed most likely caused by the rough delivery the day before (the severity of the bleed would leave most adults comatose). At the time the doctors could not determine if his brain was still bleeding or if it has stopped. After several MRI’s, ultrasounds, and other tests, they determined that the bleeding had stopped but that Henry would most likely have some damage resulting in weaknesses and developmental delays. When he was well enough to manage surgery, neurologists placed a VP shunt in Henry’s head helping with the flow of his cerebral spinal fluid.
Henry had several other complications during his NICU stay including a murmur of his heart which required doctors to go in and surgically close the hole. A blockage in his intestines resulted in a temporary colostomy (the doctors created an opening of the colon which results in a stoma. A colostomy is created when a portion of the colon or the rectum is removed and the remaining colon is brought to the abdominal wall.) After several months this was eventually reversed. Because of the extended amount of time Henry spent needing oxygen support along with being a preemie, he also developed Retinopathy of Prematurity (A disease causing abnormal blood vessels to grow in the retina, the layer of nerve tissue in the eye that enables us to see. This growth can cause the retina to detach from the back of the eye, leading to blindness).
After 6.5 months in the NICU Henry was finally able to come home. He did not leave the NICU empty-handed. For the first couple of months, it was required that Henry is hooked up to an at home heart rate and oxygen monitor and he also had a feeding tube to help with feedings because eating wore him out quickly. He routinely follows up with a variety of doctors and specialists. He has physical and occupational therapy a couple of times a week and has made great strides.
Since leaving the hospital, his shunt has malfunctioned twice, requiring surgeries to fix the blockages. Because of the severity of his brain bleed and prematurity Henry has several developmental delays. Henry still cannot sit up without the support and he cannot roll over without assistance. His right side is significantly weaker in many areas. He wears hand and feet splints to help correct the weakness. He has a slight hearing loss in his right ear and has difficulty chewing on the right side of his mouth.
Even though all of his struggles, Henry is always a very happy baby. His laugh is contagious and he is always smiling. He loves to snuggle with his mom and dad and gives the best hugs. Henry is starting to discover his voice and all it can do and he loves to babble and talk to mom and dad all day long.