Some "lessons" that I have learned from Johnny already...or maybe better termed as analogies for his life...
First, I am so thankful for the medical team we have surrounding us and supporting us through all of this. We already had what I consider to be the top Ob/Gyn and Pediatricians in place and they continued to strengthen me by always saying the right things at the right times. I never felt that they faltered for a moment in our care. Further, they have been able to direct us to more professionals that really helped us on our journey. Dr. TamTam absolutely made the right call in his concern about our low fluid levels. I still get choked up thinking about how lucky we were that we scheduled that appointment for that day...otherwise it could have been another day or two before we knew how bad the fluid levels were dropped and it scares me to think what that might have meant for Johnny. I want to continue to work hard to surround ourselves with medical professionals that can give good insight into how to best help our children.
Second, while medical professionals are helpful, sometimes Johnny is going to shock them and do things his way. During his delivery the nurse assured me that it would be at least two more hours before he was born and that was only if they further augmented my delivery and upped my pitocin. Johnny decided to cut that time down to 15 minutes. I so hope this is an analogy for his life- That doctors and professionals are going to say that things are going to take a certain amount of time and instead, Johnny does things in his own time and on his own schedule. This does not necessarily mean that I want him to do everything faster than what science says he should...I just want him to grow and develop at his own pace whether that be faster, slower, or some mixture of both. And I want us to help him determine what that development looks like rather than only listening to the experts. The labor and delivery really put so much into perspective to me. Yes, we need to look at the data given, but we need to observe the human being as well. In labor and delivery my nurse relied greatly on the data and thus underestimated how I was doing and when Johnny was coming. In contrast, during our overnight NICU stay, the opposite was true. Several times our nurse (who was wonderful and very kind to Johnny and myself) was alerted to issues with Johnny's breathing and pulse oxygen levels. After several of these alerts, she stopped watching the monitors and began to assess Johnny the old fashioned way...through observation. She determined that Johnny was, in fact, doing better than the machines were indicating. How telling of how we should look at Johnny for his life...that testing is good and beneficial, but we cannot forget to look at him and see what is actually going on. And to be honest it is going to take me trusting myself a bit more just like in labor when I needed to trust myself and my body a bit more. That I know what he needs and I can help make sure he is getting what he needs. If I can trust myself and work with the professionals, then I have faith that he will surprise us all.
Third, Johnny excels with a little bit of extra attention. Our stay in the NICU for his jaundice was textbook perfect. He ate well, worked stuff out of his system well, and relaxed under those lights like they needed him too. He charmed the nurses there to help take care of him and his levels dropped off exactly as they hoped for. There will be many times in his life that he needs and receives extra attention...and as long as we continue to give it to him, he should do great.
Fourth, sometimes all you can do is "wait and see". I find it highly ironic that we did the initial blood screening because we told ourselves that we would want to know. But knowing that our baby has Down syndrome tells us so little about who he is or what he needs. Would I do the testing again? In an instant. However, I would tell others, and I need to remind myself, that all you can know from the test is that your baby has an extra chromosome. We have had to wait and see with his jaundice levels, we have to wait and see with his growth as he is still not up to birth weight, we have to still wait and see with his heart, and we have to wait and see how his hearing is. Additionally, we will have to wait and see for a number of years as to how he develops physically and cognitively. There is such a large spectrum of where he could end up and there was/is no amount of preparation or knowledge given ahead of time that will tell us that.
We love this Baby boy and we are so thankful that we have been open to his lessons in our life.