Update

Once again . . . sorry for the delay updating.  Things have been a bit hectic around here.  Poor little Crew baby has really been struggling with more and more prolonged SVT episodes.   He even has the Cardiologist frustrated and on the phone consulting with other hospitals.  The doctors have been adding and removing medications and turning drips up and then back down again.  As of tonight, his Esmolol drip is running at 600 mcg/kg/min, which is an extremely high dose.  They've also started the oral medications,  Flecainide and Propanolol.  The poor kid is medicated to the maximum.  His oxygen saturations and respiratory effort have been stable with all of the episodes so far which is a huge relief.  But, with each prolonged episode, his parents become more and more stressed. The longer his heart rate remains in SVT, the more damage it might cause and the more life threatening it becomes.  He'll get another EKG and an echocardiogram tomorrow to check on his heart function. Prayers are needed once again to help find a treatment for this little man.  We need to find the medications that will stop the SVT, so that he can grow and get stronger before an ablation is necessary.

Crew is 5 pounds today.  He is digesting his breast milk in spite of all the issues with his heart . . .  Thank goodness!  He went to the breast again on Sunday, and this time he latched on and sucked for about 5 minutes.  He hasn't had the opportunity to nurse again since Sunday, because of all the SVT episodes.  He's pooping and peeing like a champ.  He is still on a nasal cannula at 2L, and his oxygen requirements are up just a bit to around the mid 30s.  He's alert and awake more and more and as cute as a button.