Been meaning to post this

I wrote this a couple of weeks ago, but never got around to posting...enjoy.

Did I Ever Stare?

I probably have stared, but I just don’t recall a specific time. My assumption is that most of you have stared before. Staring now has a different meaning to me. I am both sensitive to it and aggravated by it. At the same time, I understand it. Myla is 5 months old now and has a yellow tube coming out of her nostril that is taped down to her chunky little cheek, and the remaining 12 inches or so dangles behind her. The waiter at a restaurant, out of genuine concern, asked if she was okay while pointing to her nose. The older woman with a thick British accident informed us that our baby had something in her nose. I am happy to educate these curious bystanders as to the function of Myla’s Nasogastric tube. In fact, I much rather answer questions than catch the eyes from across the room. It is those who stared at the diner while we fed her that I am sensitive too. Part of this may be some distorted thinking on my part. Myla is a cute baby and people like to look at cute babies. But those who look away when I meet their eyes cause me to be skeptical.

We had some positive news a couple of weeks ago at Myla’s cardiologist appointment. We found out that Myla’s Atrial Septal Defect (the hole in the wall that separates the top two chambers of heart) had closed by about 50% since it was first discovered. This was very surprising and welcomed news. We also saw that that pressure of the blood flow across her Ventricular Sepal Defect (the hole in the wall that separates the bottom two chambers of heart) has steadily increased. This sounds like a bad thing, but is actually a good thing and is also a sign that the hole could be closing. Higher pressure indicates that there is tissue obstructing the blood flow. If there was no pressure, then the blood would be freely flowing from one chamber to the other. Myla’s body is still trying to figure out how to cope with this blood flow, so one of her arteries is mildly enlarged. This is something that we will continue to monitor. We have another echocardiogram scheduled for November, but for now, open-heart surgery is not imminent nor is it in Myla’s immediate future.

Myla is still taking no fluids orally. We continue to attempt Stage 1 baby food with her. For Myla, she still does not associate the idea of putting food in her mouth with getting rid of the feeling of hunger. We will continue this difficult work with her so that she can eventually become an autonomous eater. As always, we appreciate everyone’s continued support and positive thoughts!