Down Syndrome Awareness Month: Johnny from age birth-age one surgery, recovery, more diagnosis, go home, grow and stay strong, open heart surgery, recovery, early intervention, That was the summary of Johnnys first year. Most babies come home to their families to simply grow and learn new things at lightning speed until their first birthdays. It just happens in the blink of an eye! With Johnny and medically fragile babies, it happens, but at a slower rate and broken down in tiny little pieces. No blink of an eye. Each little thing learned has to be taught and each little accomplishment is its own milestone and reason to celebrate. During Johnnys NICU stay, more things were discovered. He had only IV nutrients for a couple of weeks after his intestine surgery and when he did get to begin receiving pumped breastmilk at almost 3 weeks old, it was by tube feedings through a tube that was placed in his nose. His little heart had three major defects including a valve that needed reconstructed. But he needed to grow bigger to have a better chance of making it through the open heart surgery. He got only pumped milk. He got it by feeding tube, by bottle thickened with special thickener, and a chance to try feeding. Feeding by mouth with a weak heart was exhausting for him but we stuck with it. I believed that every baby needed their mamas special milk, so he would receive only that however necessary. I pumped every two hours day and night for him that first year. DAY AND NIGHT and I had a stocked deep freezer as well as was able to keep up with his daily needs. I couldnt control much in his life regarding his health, but I had control of what he was fed and that would only be mamas milk. Only the best for my boy! NICU tests showed a mild/moderate hearing loss that would require hearing aids, feeding difficulties, heart disorder. Im SO, SO glad I only knew a couple of his medical diagnosis at a time, not all at once. It gave me time to process, accept, and learn about them slowly. It turns out over the last decade, that he has a dozen or more diagnosis and surgeries stacked on top of each other and many, many hospital stays. But, all I had to worry about his first year was only what I knew. Help him grow strong enough for his heart surgery and dont let him get sick. Have surgery. Go home and learn new things. And thats what happened. I pumped, he ate, he had lots of appointments, I kept him from getting sick, and I signed him up for early intervention services. He started Occupational Therapy, Physical Therapy, Speech Therapy, Feeding Therapy. They stopped out once/month or so, told me what he needed to learn to do, how to help him learn it, what exercises he needed, and left it up to me to help him accomplish that. I was suddenly expected to became a: Mommy, Nurse, Occupational Therapist, Physical Therapist, Feeding Therapist, Speech Therapist, and Milk Making Machine. And I took it seriously. Every little toy was bought with care. How will this help him learn. Every little milestone I had taken for granted with my first daughter became cause for celebration with my son with Down syndrome. He lifted his hands and touched them together!!! he turned his head!! A child with developmental delays is, well, delayed in their developmental milestones and it gets broken down. A child doesnt just learn to sit. They are taught about 10 steps broken down into little stages, each celebrated, before they learn to sit. Then they have learned to sit. The first year of his life was shaky but I thought once we got to year one, we would be past all the scary medical issues and just need to focus on developmental milestones and learning. My kid was obviously the brightest kid with Down syndrome ever born and he was going to accomplish great things! I thought, with my help, he would walk early, talk early, become the first kid with Down syndrome to drive a car, jump from an airplane, graduate from college early, and show the world that people with Down syndrome are not intellectually delayed at all, they are just misunderstood. And all of his accomplishments would reflect on my good parenting. Ohhhhhhh, I was so innocent back then. hahaha But, that innocence was ok. And when new parents with babies are born, most of them go through this. I never tell them the truth or try to tell them its not really like that, I just clap when their babies learn a new thing, and cheer when they brag about new milestones their sweet baby has learned. Those are the big deals right then. Those are moments worth celebrating! Here are some photos of Johnny during his recovery in the NICU through his first year until his birthday. I will spend a few min right now going through them individually labeling them so you know why I took them. (besides the obvious proud mommy moment of having cute babies!)
Posted on: Mon, 06 Oct 2014 19:33:49 +0000
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