We were awoken this morning at 5am by Lochlan's whining. Usually, we wait a little bit and then he falls asleep until 6 or 6:30. This morning, Adam was insistent that he should go and get him. I was glad that Adam brought Lochlan to our bed because I was granted an extra hour of sleep and some well needed snuggle time. Later in the morning Adam told me that he was awoken during a flash back dream of when we were in the NICU. He had a sudden moment of panic and needed to make sure Lochlan was ok. Lochlan is not only OK, he is doing great.
I too was hit by a wave of memories today. I can still feel my heart sink when I think of when I realized that he had no anus, the feeling of letting Lochlan go on the ambulance without me, the exhaustion of standing at Lochlan's side less than 24 hours after he was born, and then realizing that I would not be able to sleep next to my one day old son after his surgery. They were truly the worst moments of my life, but I am so glad that Lochlan will never remember any of it. I'm hoping that as the years pass, my memories will become hazy and less traumatic. I also realize that reliving the moments is something I shouldn't do, so instead, I focus on the bright little boy Lochlan has become.
I follow families that have children that undergo dialysis as infants for months on end until they receive a donor kidney, so even though we have been through a lot, I am happy that we have been able to give Lochlan a somewhat normal life for his first two years of life. Surprisingly, Lochlan doesn't mind his daily shots, constant tube feedings, or bowel regimen. Our hope is that as he grows up with these daily medical needs, he won't feel ashamed or like an outcast. I must say that I tube feed him anywhere and everywhere, and so far our community has been so supportive. I feel awkward feeding him in front of other parents, but it gives me hope because no one has ever expressed disgust or hostility. Without going in to detail, we've started giving Lochlan a potty routine, and he has been amazingly receptive to it. He is so brave and beams with pride when he is done on his potty. His new phrase is, "I dit" which means, "I did it." Lochlan is clearly gaining the determination that it takes to live with a life-long illness.
Last time I posted, Lochlan's Nephrologist mentioned dialysis, but we are happy to report that Lochlan had a little growth spurt, and he will not need dialysis at the moment. We are hesitant now to make any assumptions as to when Lochlan will need dialysis or a transplant. At some point, Lochlan's kidney will reach a tipping point and his kidney function will decline at a steady rate. Until then, Adam and I continue to attempt to treat this time period like a gift of freedom from extra tubes and needles. With a little faith and luck, we are hoping that we will be able to spend the next year away from the hospital. The MRI done in March showed NO tethered cord. It was a huge relief to know that Lochlan will not need spinal surgery. However, staying true to Lochlan's medical history, the report didn't end there. The MRI showed areas of Lochlan's brain that were developmentally abnormal, and that his spinal cord didn't develop down as far as it should have. Because Lochlan has never had seizures and his neurological exams have always been normal, these incidental findings may never affect him.
Last time I updated the blog, Lochlan was eating really well and enjoying it. He quickly gained back all of the weight lost during a horrendous stomach bug plus some, but he has since stopped eating. Both Adam and I admitted to each other today how much it crushed us that he didn't even want to hold his cupcake or stick a finger in the frosting. He did however have a blast blowing out the candle. Despite still mourning not having a child that eats normally, Adam and I mentally condition ourselves to appreciate the small things. A year ago, we were uncertain of how Lochlan would fair on a real food diet. I was deathly afraid of not following the doctor's orders for formula feeding, but I can say that I have mastered Lochlan's blenderized diet in the past year. Many medically complex children live with chronic GI disfunction, so we are happy that we have overcome the odds. Watching Lochlan's growth curve has kept us on the edge our seats, but it gives me the greatest pride to see how far he has come. Watching Lochlan grow into the active, good-humored little monster that he is, has given me the certainty that he will not only be OK, he will be great!
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