We are just laypeople

I was planning on writing this post about all of the wrong decisions that we have made along this journey that my family has taken. Every time we tell Myla’s story, whether it is to a new professional we come across or a colleague or a friend, we rehash our wrong turns. I do not feel guilty for making these wrong decisions. Alas, we are just laypeople wandering around this quagmire with only the professionals that we entrust as our compass. We try to take the best data we are given, add it to our own expert knowledge of our daughter, and what we get is a foggy amalgam that typically leads us in multiple directions. Recently, this led us to a new feeding therapist, Nancy. Nancy seems very knowledgeable and has had a good deal of experience with “Tube Dependent” children. I just wish we had found her in July, prior to placing Myla’s NG tube. Perhaps we could have avoided that wrong turn.

Myla’s smile still leaves an indelible mark on my heart every time it shines, but recently, we have noticed a little less smiling. There is a little more whimpering, a little more whining, and a little more crying. This specifically occurs during her feedings (both tube feedings, and when we do our trials with solids). She has also been vomiting more volume, which is always deflating. We aren’t’ sure if its just a phase she is going through. One of my fears is that our smart little Bean is beginning to recognize the unpleasantness that she has to experience daily and my heart hurts thinking of that.

I recall a time when we were in the hospital over the summertime. Our family was there as were some close friends. We were celebrating the fact that Myla had just taken 3.5 ounces by bottle. This was not a frequent occurrence. Our jubilation quickly turned to despair as Myla coughed and vomited almost the entire feeding. Now, it’s more of a time and energy investment lost rather than the emotional investment back then. Her feedings, in general take about 45-60 minutes, followed by at least 30 minutes of keeping her upright. This means, even if she dirties her diaper 10 minutes into the feed, we really can’t change it for an hour and twenty minutes or so. If we violate the 30-minute rule, there is a big chance that our little Bean will throw up. We have to do this every 3 hours during the day. Recently, she has been vomiting a greater amount in terms of volume. Sometimes it seems as though it’s an entire feeding. We will see this week at her GI appointment if she continued to gain weight. If so, it’s both an inconvenience and a let down when she vomits. If she hasn’t gained much weight, then its an inconvenience, let down, and large waste of time.

Tomorrow night will be a first for us. Lindsey and I will leave Myla with her Gram overnight as we travel to New York State for my cousin Lindsay’s “A-Y’s” wedding. Though she has been left in the care of loved ones before, we have never left her overnight. We know Gram will take great care of her, but we will miss her and be anxious parents anyway. Myla does overnight very well to say the least. She was blessed as an amazing sleeper (who knows if its fatigue due to her heart or her McLelland genetics but either way, we are happy). Myla, don’t pull out your tube for Gram!