A friend of mine who also has a little 'heart baby' sent me this link earlier today:
A 31-year-old with HLHS!! Here's a video clip of a young man, Bryan Rothlein of Safety Harbor, Florida, who was born 31 years ago with HLHS who is a successful veterinarian today! This is the oldest HLHS survivor I've heard of so far! Scroll to 19:42 to watch the HLHS portion. (copy and paste the link)
We've had a few bumpy days lately with Teagan... She's developed a really bad diaper rash over the last week and we've been noticing blood in her stools on and off for a few days. We went to the dr. yesterday and he thinks she might be allergic to dairy. Sooo we switched to an all soy formula (to fortify my breastmilk) and I am officially off dairy! I'm beginning to realize that this is not an easy thing to do! I didn't realize how many foods we eat all the time have dairy in them! The dr. said that if she is allergic, it will take about a week of being off dairy to see an improvement. On a happy note, she was weighed yesterday and since thursday has gained 3 1/2 ounces!!! She is now officially 7lbs 9 1/2 ounces!
We have an appt. with the cardiologist tommorrow to check on her little heart. They are also planning on sending us home with a holter monitor that she will wear for 24 hours to record her heart rhythms. It gets sent to Children's to be evaluated by our cardiac surgeon to make sure that Teagan's heart is functioning like it should!
I've been off dairy since monday afternoon and as of this evening (tues) Teagan hasn't had any more blood in her diaper! Also, she finished her 6pm feeding from her bottle and didn't need the feeding pump! Small victories that get us so excited!
2 days ago