So after a long week in the hospital and 3 days of crash courses in how to check blood sugars, give shots, and count carbs, we were sent home with our baby boy. How do you explain how hard it is to calculate carbs for a breastfed baby? There are no words. He was an anomaly according to the endocrinologist at LeBohneurChildren’s Hospital. They had never seen a 4 month old with diabetes. Therefore, their only explanation was that he was just a very early onset Type 1 diabetes. While we did learn a lot about Type 1 diabetes and insulin, a lot of the information just didn’t pertain to us. Andy was already eating cereal and was starting to eat some baby foods, but for the most part, he was being breastfed and bottle fed for the first two months of his diagnosis. His blood sugars were wildly swinging from the lower 20’s to the upper 500’s. It was not unusual to see the meter read “HI” at least once every two weeks. Worse still was the fact that he had to relearn all of those milestones he had achieved in the first 3 1/2 months of his life. He had to learn how to hold his head up, roll over, coo, make sounds. It was not easy and it did not come quickly for him.
By the middle of October, he was done with breastmilk. He just decided he was done one day and didn’t want it anymore. I think I was more crushed by this than he was. He was ready to move on to baby foods and formula, which in some aspect did make carb counting a little easier, even if measuring insulin wasn’t. Andy finally started to roll over around the beginning of November so he was nearly 7 months old. He began to push up with his hands when he was on his tummy, but didn’t fully sit up until he was over 8 months old around Christmas time. We began to notice that he was late in everything, but didn’t think it was really significant because at that time he was only a couple of months behind.
In January, we went to the Endocrinologist again and voiced our frustrations over the unpredictable blood sugars and the trouble with giving him minuscule amounts of insulin that were impossible to measure with even the smallest needle. We discussed getting diluted insulin, but I was adamant that I wanted a pump. I had done some research and just knew that this would be so much better for us. Our doctor agreed, though I think he was still not positive we could handle it. He began the paper work for getting the pump.
While we waited, Andy continued to grow, and grow, and grow. His length did not increase as much as his weight. One thing I learned later about insulin is that it causes you to gain weight. Andy did this part very well. By March, he was a whopping 23 pounds and was eating like a champ. Except, of course when we needed him to. One of the worse parts of having a young baby withdiabetes is that you can’t make them understand. If we had given him a shot to cover a meal and then he didn’t eat, we would end up having to force him to eat. The images are burned into my brain. Having to hold his head while Dan forced food into his little mouth while he was screaming, hoping and praying we wouldn’t have to give him a shot of glucagon or rush him to the ER because he was too low. Luckily, he only had to have the glucagon one time. Just a couple of months after diagnosis, he was in the low 20’s and just acting kind of “out of it”. We couldn’t get him to eat so we gave him a shot of glucagon and within 5 minutes, he began to eat some rice cereal with applesauce. Of course, his blood sugar was back up in the 500’s within a few hours. Oh, the joys of diabetes! Just another reason we needed a better solution.
At the beginning of April, we received the box with the pump supplies. We watched the videos and played with the pump. Dan even tried to practice with the infusion set by inserting the catheter in his skin, but wasn’t able to (duh!). Later that week, we had a birthday party for his 1st birthday (a little early). All of my family came as well as some friends from church and the school where I taught. It was sad, but we had a sugar free angel food cake with sugar free whipped topping that I had dyed with blue food coloring. What kid doesn’t get a regular piece of cake for his 1st birthday? What fun is that? Oh well, such was our life at that time. We all had fun and enjoyed the party. Of course everyone wanted to see the pump and asked many questions about how we would do it and where it would go. We couldn’t answer too many questions yet, but were excited to learn very soon. Finally, on April 12th, just a week before his first birthday, we met with the Animas representative to learn all about pumping. At the end of the class, he was hooked up. At the time, we were prepared to continue with this treatment for the rest of his life, or until there was a cure, whichever came first. We always believed there would be a cure some day and Andy would be able to live without insulin. We just didn’t know at the time that we were closer to living without insulin than we could ever dream.