New Feeding Tube and Other Updates

It has been a while since we last posted.  Here is a summary of the last couple of weeks:

• Last Wednesday, Brida or Maggie pulled out her feeding tube during the day (we think Maggie pulled her tape, which pulled out the tube).  Our neighbor graciously offered to watch Maggie while Erin brought Brida to the ER (for the third time).  They put an 8 Fr. tube in again (back to the larger size).  They had a much easier time putting this one in compared to the previous time and, consequently, got a lower radiation dose.
• Brida had another cardiologist appointment last week.  Her chest x-ray looked good, so they took her off of the Lasix (diaretic).  She is now only on aspirin, Zantac, and amoxicillin.  They also increased her feeding rate to 23 ml/hr.  
• Brida had another swallow study after the cardiologist appointment.  There was good news and back news from this test.  She aspirated much sooner than in the previous study (which isn't so good), but it wasn't a silent aspiration (she coughed) which is an indication that she is building strength.  She will need to stay on the NJ tube until the next study at the end of the month. 
• Brida's two big sisters visited their grandparents in CT for the last couple of weeks.  They are  flying back home tomorrow.
• Brida continues to gain weight.  She is now up to 4.415 kg.
• Brida was visited by her speech therapist a couple of times.  The therapist says that Brida continues to show progress with her suction.  We are doing some oral stimulation exercises with her every day to prevent her from developing an aversion.  This mostly involves rubbing her lips with milk or flavored chap stick and encouraging use of the pacifier.

We are not sure if it is because of the new feeding tube, the increased fluid volume, or something else. but Brida has been gagging multiple times during the day and evening.  Sometimes she spits up bile, other times nothing. It can be a bit stressful since her face turns red and she shows a lot of distress during these episodes.  This happened sometimes when she was still in the hospital, but until this past weekend, she really hasn't had any issues since she has been home.  We have an appointment with the pediatrician on Wednesday and we will be discussing this. 

We will try to post some pictures later this week.