Phillipians 4:6-7 “Do not be anxious about anything but in everything, through prayer, petition and thanksgiving present your request to God. And the peace of God will transcend all understanding and will guard your hearts and minds in Christ Jesus”.

It’s been all about feeding and weight gain since we’ve been home. Total caloric intake, volume, and weight gain are indicative to his overall heart health. His weight has been stagnant and teetering on the 15lb mark since surgery. We were able to pile on a miniscule amount of weight by increasing his calories per feed, yet paid a high burning price of reflux inferno. A significant decrease in his calories along with some minor tweeks with his reflux medicine stopped the burn

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. Those two adjustments gave us temporary feeding bliss but we lost some of those chunks of weight we had worked so diligently to add. Now we’re trying to combat his loss of appetite from the reflux.  The only thing that is securing my sanity right now is my relationship with the Lord and my faith that he is in control. I know that if we  keep persistent with finding the right balance of calories to promote weight gain without firing up his GI track, his “bottle clock” will reset, be back in full force, and then we’ll push past 15lbs !

We had our first visit with our local cardiologist here in Phoenix. Bronson had an echocardiograph and everything still looks great. I was very happy  with how Dr. Rhee, his cardiologist here, knows to watch for the pressure build up around the patch on the hole between his top chambers. I was equally impressed with how he understood the modification that Dr. Emani made to the papillary muscle on the mitral valve. The mitral valve and the left ventricle need to grow exponentially either before 2-3 years of age or before the pressure builds up around the patch. If the pressure becomes emergent, then we’ll be back in Boston with a potentially urgent heart catheter to balloon the patch.  It would enlarge the hole enough to keep him stable for the final surgery when he’s about 2 that would complete the single ventricle circulation. This would also mean no biventricular repair to give him a four chamber heart. Please pray for mitral valve and left ventricle  growth without complications with the patch.

We also got some disheartening news.  Beth, the nurse practitioner, who took Bronson  into her care in the middle of a reflux episode that was complicating his feeds during interstage (between surgeries), is leaving us.   She has been Bronson’s angel and she’s been fundamental with getting us to Boston. She is so dedicated to these babies and has an abundance of knowledge and talent with managing them to ensure they thrive for their second surgery.  Usually, when these babies have their second stage surgery for single ventricle circulation, they are released from the interstage monitoring program. The modification’s for Bronson’s left ventricle rehab have made his second surgery a high risk so Beth will continue to monitor him closely until she leaves in May of next year. She did assure us that she will train the new NP about his case and that he will continue to have the same great care. There’s  no replacing Beth though! He will have another echocardiograph (ultrasound of his heart) on Dec 20th. I will update then! Pictures below from his Phoenix appointment.

***********More pics in the “Just Pictures” page****************