So today the baby had her follow up appt with the cardiologist after being diagnosised with a PDA and valve regurge at 2 days of age last month. I have been patiently waiting for this appt to finally get some answers to the symptoms she has been having and get a game plan on what needs to be done. I was hoping that we could wait to do the cathetization surgery when she got to be a couple years of age, but unfortunately it turns out her PDA is a lot worse than was first thought and the only cure is open heart surgery where they can physically tie off the vessel. The cardiologist own words were this is the largest PDA he has seen (great) and she is in the early stage of heart failure. This is the reason for her increased breathing and why her pedi have been hearing crackles on her lung fields. Unfortunately the surgery is only done in Boston so we have to wait now for the records to be sent and for they to call for an appt, but it is looking like it will be done some time in the next month.
In the mean time she is going to start on lasix to help the breathing and I have to increase the calorie content of her milk to a 24 calorie/oz diet. She weighed in at 7lb 9oz today and 20.5 inches long so it looks like she is gaining 0.5 oz or less each day.
I am trying to remain calm, but it is hard. I know that she needs to have the surgery to get better, but it is so hard to agree to have your newborn baby have such major surgery. I also worry about what this means for our family and their future kids. I know very likely she has this because of dh (we got very lucky with dd) and if this is true than what is the chance that their kids may end up having PDAs too and needing surgery as a baby.
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