This is our story about Living with Superman.
Superman is unable to leap tall buildings in a single bound, he does not fly faster than an airplane and he is not faster than a speeding bullet. He is SO much more impressive than that.
Superman was born at 27 weeks due to high blood pressure causing a placental abruption and preterm labor. He was only 1lb 10oz. I can think of a million things I could have done differently. I can think of a million moments that might have changed the outcome. But I will never know for sure. What I do know is that since the moment that little tiny boy who could only be measured in grams came into this world – he hasn’t stopped fighting. And that to me is way more impressive than the comic book hero. I live with a true life hero and my heart beats with joy.
Superman had lost his oxygen supply during the birth and was born not breathing (hypoxic ischemia encepholopathy – or HIE) and in the first 24 hours on the ventilator that was sustaining his life and allowing him to fight, he began to bleed in his brain from the lack of oxygen and then the reintroduction of oxygen. Very similar to a stroke but on a much larger scale. They call this a Intraventricular Hemmorage (IVH). This left him with a condition called Diabetes Insipidus (DI) from a portion that was damaged and now he takes medication daily for it and will continue to do so for the rest of his life. While considered a “rare disease” by the NIH – I have met many people online that have this condition from birth or by accident or because of a brain tumor. And while it is not the easiest of conditions to live with because it is VERY finicky, it is manageable. Just requires A LOT of blood work. Some days I think people that do blood for diabetes mellitus (the sugar kind) have it easy! Blood draws for us are vials not pricks.
Any brain bleed has the chance to cause delays in development and other areas, however Superman now has hypotonic Cerebral Palsy. They told us he would probably not open his eyes, move, sit, eat or anything.
In addition to all the rest, after a period of seizures in the NICU that resolved themselves, Superman now deals with a type of epilepsy called Infantile Spasms. This is a very devastating type of seizure as it basically shuts down the brain and affects development. Most children that have IS will experience an instant delay in development as well as often regress in the development they already had.
In April 2012, Superman had to have laser surgery done on both eyes for a condition called Retinopathy of Prematurity (ROP). Left untreated, in many cases it will progress and cause permanent blindness. Due to the mass amounts of oxygen used, it causes the blood vessels in the eye to basically sprout off and create new ones, overloading the retina with blood vessels that have no purpose. Although his eyes were fixed (and are still perfect over a year later) he now has what is called Cortical Vision Impairment or CVI where the brain doesn’t always register what it is seeing. Because of this condition he has been diagnosed as legally blind.
Superman came home from the NICU after 117 days – gtube dependent. Today, 14 months old, he is completely orally fed and we are on our way to mobility.
Its a slow process but as a family we make it together.
Superman has a sister, we call her Diva, because well… she’s a little diva with an addiction to shoes and headbands. She is his #1 supporter. For a girl who didn’t want a brother he is her world. She doesn’t know that Superman is different than other babies, she just knows he is Superman. And that’s how we like it.
Living with Superman is a challenge, it has its ups and downs – but living with Superman has brought us all more love, compassion, knowledge, and gratitude than I thought I could see in a lifetime. I look forward to learning and growing with my little boy on this crazy journey we call life.