Bronson is one year old! June 2nd was his birthday. He welcomed the day with a nasty, congested cold. It was the second cold he has had and the most stressful, of the two, for me. My stomach sank every time he coughed.  It’s a gamble when he’s sick with a respiratory virus/bacteria because we never know when it could become a full infection that his body won’t defend as a result of the poor blood profusion to his organs. He of course conquered it like the beast that he is, just not on time to attend his quaint family party that we ultimately canceled. Canceling the party is futile though when realizing that he’s survived two open heart surgeries in his first year of life

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. That is a commemoration by itself! We fall in love with him more  every day with every new and fun personality quirk that he develops. He is a very busy little boy and the ultimate multi-tasker. He has mastered crawling with his wrists, or walking along the wall with his elbows so he can still maneuver with toys in each hand.  He’s been taking two to three steps on his own without holding on to anything. Pillow diving is his most recent thrill. He pulls the pillows off of the couch and onto the floor, plummets into them hands and belly first, and then tumbles around. Eric and I often sit on the floor with him and just laugh at his cute little antics.  Eating still continues to attack my mental stability. Transitioning him from the bottle to solids has been…. well, high velocity due to a VERY sensitive gag reflex. I’ll spare those details though! The primary goal will always be weight gain so as long as he remains on his growth curve we can celebrate. His most recent weigh in was 20lbs 1oz. We did a little “weight” dance. Every day with him is a divine blessing from the Lord.

I know that all we can do is ask the Lord that his will for Bronson is our heart’s desire.  I’m fully aware that HIS will is always greater than ours. Presently, it seems like the two are in alignment, based on the results from his previous cardiology appointment. His echo revealed increased mitral valve growth. Beth had created a graph to measure his valve progress with a goal of 2 on the graph being optimal. His valve measurement is 1.28.  How does this correlate to his overall progress? It’s a precursor for a bi ventricular repair, a four chamber heart versus the two chamber that he currently has. For clarification, his second surgery involved wiring his right ventricle to carry the majority of the workload that normally both ventricle’s carry. This is the standard for the second stage of the three stages of surgery to complete the single ventricle circulation. Dr. Emani, his surgeon in Boston, had added a modification to this stage, that is forcing blood through the left ventricle to promote growth ( “No flow, no growth”). This flow is what’s also permitting the mitral valve growth. The ultimate risk from this forced flow is that the left ventricle can stop developing which would restrict the blood from passing through, therefore creating back flow of blood at the modification site resulting in high pressure. The most accurate means to measure the lv growth is with a cardiac MRI. MRI requires sedation so we will continue to monitor the pressure via echo’s. I did contact Dr. Emani and asked him to review the echo. He and Dr. T, Bronson’s cardiologist from Boston, both reviewed the images and together agree that overall they are pleased with the success of the lv rehab. He didn’t mention anything related to the mitral valve growth. The email that he sent me was brief. The most significant point he made is that the pressure at the modification site is an 8, with 11-15 being the risky range for complications. Although it is encroaching that range, this is when, as he stated, “we usually start to see growth of the left sided structures. I would expect it would take us another year to develop significant growth of the left side. But it’s off to a good start at this point.” This is assuring, yet still leaves me with the same looming caution for complications that I’ve had since his surgery. Our next cardiology appointment is scheduled for August. I’ll update then. For now, we’ll persist with the present, celebrating his one year milestone and indulging in his amusing and comical personality. We’ll continue to be fervent with our prayers asking for a lifetime of joy and thriving, free from major medical complications.


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