Exactly one year ago today we found out I was pregnant with Luke and Olivia. Finding out whether or not you are pregnant after fertility treatments is much different than the spontaneous fun I would imagine the "normal" way to be. You go through months of injections, medications, bloodwork, ultrasounds, and doctor's visits. Everything is timed extremely carefully with very little, if any, flexibility. Your whole life revolves around all of these things until the much anticipated blood test day to see if all of the time, money, and emotions you've put into the cycle have paid off. You are strongly urged not to take a test at home prior to your scheduled blood test due to the high chance of getting a false positive or false negative because of all the hormones, drugs, etc. Because I had gotten a false positive on our previous cycle, this was the first time I actually listened to the nurses and didn't start taking tests at home way too early. While it was excruciating to wait, it made the call from our nurse that day even more special. I had gone in for my appointment before work, around 7:00am, and clutched my phone that entire day until I received her call around 3:30pm. When you do a pregnancy blood test, they measure your hCG level. My levels were about 5 times higher than when we first found out I was pregnant with Jackson, so we all had a feeling right away that it was twins. Now, here we are a year later with two beautiful babies and, again, on this journey we had never expected.
Our appointment with the new surgeon was quite enlightening on Friday. She for sure has a different approach based on her many years of experience with Hirschsprung's disease. Dr. Reynolds said that a colostomy bag is not necessary (hooray!) because it will not fix or cure Hirschsprung's. According to her, this is a disease that will require lifelong maintenance. While the surgery Luke had was an absolute necessity, removing the non-functioning part of the colon does not get rid of the problem. Furthermore, she said that children who have Hirschsprung's disease + Down syndrome almost always have post-op complications, so she was not surprised at all that he was having issues. Perhaps it was our naivete or just wishful thinking, but we were under the assumption, based on what we were told while Luke was still in the NICU, that he would be "healed" after his surgery. In some ways, it was actually comforting to hear that these complications are normal, especially given that Dr. Reynolds has dealt with them for 20+ years. After giving it much thought, we've decided to switch Luke's care to her as it seems she has more to offer at this point.
What gave us some peace of mind was that she said we are in the hardest part of the disease right now, with each year hopefully getting a little easier for Luke. So I think about next year at this time and remind myself what a difference a year can make, in more ways than one. Just as time will help Luke get through the hardest part of his journey, I'm hoping it will do the same for me and Pete. In the year ahead, I vow to spend less time being scared and worried and more time enjoying our sweet baby Luke and, of course, Jackson and Olivia. As my favorite line in the "Welcome to Holland" poem goes...
"If you spend your life mourning the fact that you didn't get to Italy
you may never be free to enjoy the very special, the very lovely things...about Holland."
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