After a very frustrating and exhausting stay at CHOP we are so grateful to be back home! We were discharged very late last night after a long conversation with Lucy’s doctors about what we are going to do next. ..
Lucy’s swallow study results confirmed what we feared the most, she silently aspirates with all liquids even thickened liquids. She had difficulties with almost everything we tried, with the exception of one Cheerio at a time. When she ate more than one at a time she coughed and that was not a good sign. So what does all this mean? Her CHOP doctors are extremely concerned that Lucy is at risk of aspirating anything that goes in her mouth, and because she is a silent aspirator ,which means she does not give any indications of chocking, this is very dangerous. They advised me to stop breastfeeding. Lucy is currently 100% tube fed. We are devastated by these results! This is not what we want for our baby girl! We suddenly feel that we are moving in the opposite direction.
Swallow studies are a snapshot in time according to our pediatrician and speech therapist(ST). We are going to do a repeat swallow study in a few weeks when Lucy is back to her “baseline”. She has been through a big ordeal this past week and is doing better, but is still not back to her norm. Our hope is that we will get a second opinion that will allow us to breastfed once again. Breastfeeding is the only normal feeding activity that we have. Equally as important, it is a means of comfort and bonding for Lucy and I. We have been advised by our ST and pediatrician that there is a speech pathologist at Du Pont who specializes in aspirations and breastfeeding. Our pediatrician once again has gone above and beyond and spoke with this speech pathologist earlier today. We are looking at repeating the study hopefully at the end of next week. In the mean time I am pumping to keep up my supply.
These findings have been very difficult to accept! We feel so blessed to have so many people in our lives who love and support us and who understand how important breastfeeding is to us. Thank you so much for all your thoughts and prayers.
P.S. Her feeding pump is in the little backpack she is wearing. We don’t make her carry it on her back, she tips over or falls backwards with it on.