Care, reprised (oh yeah..and Myla's shocking look as the GMEN defeated the Eagles)

Perhaps not updating this blog as much is indicative of less doctor's appointments or perhaps it is just a symptom of an incredibly busy schedule that involves two jobs and caring for an infant. There are couple of updates that are worth noting. Myla has had this persistent cold for about two weeks which has made it difficult to recognize if the modifications in her formula and feeding schedule are helping with her cough and reflux. We had a follow up appointment with our new GI doc at Robert Wood which also went well. Feeding therapy has been progressing well and our Myla June continues to develop before our eyes. She loves to stand with our support. She is so happy when she is standing. She is also beginning to sit without our support for extended periods of time (before tipping over. We usually catch her; however, sometimes we come back to her and she has already tipped).

Today was the day that we were to have had to make the decision regarding Myla's heart repair. We met with Dr. Khan (which makes me want to scream KHAAAAAAAAAAAAANNNNNNN! every time I say it...some probably know what I am talking about). She went through the opinions of the cardiologists at CHOP once more, and we let her know that we would like to wait and monitor Myla's situation to see if there are further signs of closure of the holes prior to making a decision about surgery. We will be checking in with her monthly and will have another echocardiogram in October. She let us know that there was one other data point that the "pro surgery" team mentioned, and this was the emotional state of the parents. Dr. Khan let us know that they seriously considered the fact that this was not the parenting experience that we had envisioned and by doing the surgery, Myla had a chance of a very typical first year of life after her recovery. Lindsey and I have had the discussion about how our idea of caring for a baby has been completely blown up by Myla's medical issues. We love her unbelievably and would not trade her for anything in the world, but this is not what we had expected. We mourn the loss of our idea of normalcy but also recognize normalcy exists on a spectrum and is very much a relative idea. It seems as though the "pro surgery" cohort was also capable of care.

This evening during Myla's last feeding, we soaked part of washcloth in apple juice and gently rubbed it on her lips and tongue. This was a strategy recommended by our feeding therapist. Myla loved it. She took it in her mouth and began chomping on it. This may seem trivial to most as most baby's love to put things in her mouth. Babies with food issues do not typically do these types of things. This is hopeful sign for Lindsey and I that with continued work and exposure to various tastes and textures, Myla's mouth will be ready to eat again soon. To quote Dr. Kiniaris, our new GI, "we need to get that tube out."