Today we had a meeting with Faith’s doctors and primary nurses. We discussed the plan of action for Faith. Basically Faith just needs more time. There are a number of factors that could have contributed to Faith’s recent decline. One of those could be fluid retention. Faith has been looking puffy lately and has been gaining a lot of weight (which we know is not like Faith). This extra fluid could be making it difficult for her to breathe. They have increased her diuretic and have decreased the amount of fluid she is taking in (but increased the calories so she will grow). We also think that we were weaning her off of her high flow cannula too fast. We are going to take this very slowly which means that it will be a while before Faith comes home (at least another month or so). We are not concerned with her eating on her own right now- even if she did eat on her own she wouldn’t be able to come home for a while. It is unrealistic to expect her to eat when she can’t breathe! We will focus on that when she is on the low flow cannula. This week has shown us how fragile Faith is. She has a very reactive airway which means she is very sensitive to common things that wouldn’t bother a typically newborn (stuff in the air, germs, etc.) This just reiterates what we already know- we need to be very careful with Faith both at the hospital and at home. Even though it is going to be a while, we are already preparing our home for her- like putting purrell in every room. We know that this too shall pass- Faith is not like most babies and will need some extra time. Which is ok by us- we’d rather catch all of these problems before we go home, because often times with babies like Faith after they go home they have to go back to the hospital (and we’re not doing that!) Well thanks for your continued support and encouragement!
Brian and Jen