On Thursday of last week, Lucy and I visited the Feeding Clinic again. I mostly wanted to get help determining what type of food she should be eating and verifying that we are feeding her enough. Overall, it was a good visit. They always include a physical therapist visit, which is sort of annoying because they do things like rub lotion on Lucy and tell us that she jumps too much?!?! Anyways, that was just a small part of the visit. The rest of the visit was spent talking about Lucy's nutritional needs and observing her eat. She had yogurt (did great), 2 bites of mashed up spaghetti (did OK - liked the texture and taste, but it got stuck a bit), and a graham cracker (terrible - usually she loves these and does great, but the spaghetti was giving her trouble, so the rest of the visit was a bit of a challenge for her).
So, bottom line, they suggested we keep doing what we are doing (I guess that is a good thing and encouraging to know we are on the right track, but I was hoping that as professionals they would have some really proactive things we could try with her to improve her eating experience.)
However, as a direct result of the visit, we will make the following changes to help increase her caloric intake:
- Switch from Formula to PediaSure
- Prepare more food for Lucy from scratch - like pureeing stews, soups, meat and veggies, etc. instead of purchased baby foods. We have tried this many, many times in the past and almost always have a mashed sweet potato or regular potato in the refrigerator that we feed her, but we have had challenges getting other foods to a consistency that she can handle for large volumes of food.
At her age, Lucy needs between 80 and 90 calories per kilogram. To put that into terms we can understand, Lucy weighs between 8.5 and 9 kg, so she needs about 750 calories per day. We've been counting her calories for quite while and keep a food journal for her - she is currently taking about 200 calories per day orally and the remainder through her feeding tube (did you know that it takes approximately 3 Cheerios to get 1 calorie? Well, I do!) So, we have some work to do in order to get the oral feeding quantity up and the feeding tube quantity down.
We will have another dilatation in a week or so, and then repeat a swallow study at the beginning of August. We will plan to see the Feeding Clinic again in September.
When I think back to the little 4 month old that we brought home (exactly 9 months ago!) who was taking NOTHING orally, we have come a long way! However, it is obvious that there is still something anatomically not correct with her esophagus/throat area and we are eager to get that figured out so that we can move forward more quickly. I need to reminder myself that patience, patience, patience is needed! Psalm 40:1 says, "I waited patiently for the Lord to help me and He turned to me and heard my cry." Our study Bible notes that often blessings cannot be received unless we go through the trial of waiting. So, we wait...and focus on how we can love God, serve others and tell others about Him while we wait.
Although I know I write about Lucy's wonderful temperament all the time - she really is such a content and happy baby. She plays hard, laughs hard, sleeps hard and seems to enjoy life and those around her. Today, all of her cousins were over and she just crawled right in the middle of them and made sure she got time with her toys, despite all the big kids hanging around!
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