Saturday, December 13, 2008

A Nutritionist who eats chocolate!

Yesterday, we had our first appointment with the GI nutritionist at CHOP. I'm just going to come out and say it, we loved her! It was so nice to have someone so normal, a nutritionist who eats chocolate, in the CHOP medical system discuss something so abnormal with us! This nutritionist has a child who also needed supplemental nutrition as a baby, so she has personal experience as well as professional. It has been very difficult going to see so many specialists who are just as baffled as we are, if not more with Lucy's medical situation! It is not easy hearing that what your baby has is so rare that even a facility such as CHOP has seen but a handful of these types a cases ever! Lucy is truly a one in a million! We are learning that this is going to be long road and we need to prepare for the trip. Lucy's underlying issues are still unknown, but we need to continue to treat the symptoms. Basically, we need to help her to grow and gain weight! We discussed Lucy's growth chart and feeding regimen with the nutritionist who also stated that Lucy's growth chart was "pretty ugly and one of the worst she has seen!" When we began entral feeding in November, Drew and I were not very familiar with the process. Now, a month later we have several tricks up our sleeves that seem to be working for Lucy. Our new nutritionist was impressed with our knowledge of breastfeeding and our dedication to proving as much breast milk as possible! We know that Lucy is able to tolerate her feeds better when it is mostly breast milk. We are blessed to have donor milk given to Lucy by a very good friend. Between her milk and mine, Lucy has been receiving 100% of her feeds with breast milk. This is a huge accomplishment when you consider the quantity of food she is given daily! We do, however, need to find a formula that Lucy can tolerate so that we can use it to boost the caloric content of the breast milk. After looking at Lucy's progress over the last month, the nutritionist determined that we need to bump up Lucy's calories per kilogram ratio. She is not growing as fast as she would like her to be growing. At the same time, she could not tell us what her expectations are for Lucy since it is really up to Lucy's body to tell us what she can do. I know that doesn't make much sense considering Lucy's track record, but that is what we were told. Increasing her calories can be done several ways. One is too fortify the breast milk with formula so that it increases the calories per ounce. Two is to increase the rate of her feeds at night so that she is receiving more volume per hour. And three is to bolus her throughout the day so that she receives those extra calories. We are going to try doing this in the order I just listed, mainly because it seems the most logical for us. We know that increasing the rate has proven to give us a very queasy baby. Bolus feeding, adding extra ounces after every feed, is difficult for many reasons. One, it requires that I carry her equipment where ever I go. Two, this option is time consuming and difficult to plug her in throughout the day. Three, add to this the fact that we have three other children who need my attention at all hours of the day, and I think that this option could put me over the top! That being said, we will do what we have to! But for those of you who are saying prayers, please say a pray that option number one works! So we are in the process of making these changes, hopefully we do not have the same explosive diaper issue that we had a few weeks ago. You know I'll keep you posted :).

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