A few days ago we had a follow-up with the pulmonary hypertension specialist out of UCSF, Dr. Robertson. After completing Zacchaio's echocardiogram, the doctor, a pulmonary nurse practitioner, and our favorite nurse from his NICU stay (who is training to be an NP) all walked in with the results. The echocardiogram looked PERFECT*! NO MORE PULMONARY HYPERTENSION! Rejoice! Wham, bam, thank you ma'am(s)! We crossed a specialty off his list!
*Still some narrowing in his aortic arch, but it's very mild and not worsening. :o)
Following the good news, they proceeded to fall in love with our baby boy. I couldn't blame them, hehe. After 20 minutes of fun and interactive play with Zacchaio, they said they were officially signing off, though they asked if they could keep his name on their patient list so they could have social visits whenever we're in town seeing other specialists. I love our medical family.
Our next visit was with the pulmonologist, the doctor who originally suggested putting the NG tube back in. He's really happy with Zacchaio's lungs and weight gain. In fact, he says there is definitely NO issue with his lungs, just his upper airway. After watching a couple of videos I took of Zacchaio's whistle-breathing and listening carefully to my accounts of his sometimes troubled breathing, he was able to finally diagnose him with laryngomalacia. In short, the tissue in his upper larynx is incredibly soft. As he gets older and is able to take more forceful inhalations, his larynx collapses in on itself and closes off his airway. Although adding yet another diagnosis to his long list may be anxiety-provoking for some, we're finding comfort in the fact that we have now identified the problem and can seek out information to help manage it. He did give us the green light to start trying oral feeds again while continuing to supplement through the NG tube. So far he gets as much as 40mL nursing, and the remaining 80mL by tube. Initially I was discouraged by the pace of his progress because I was going back to work on May 25th, but after seeing my incredible OB physician's assistant on Friday, my disability has been extended until June 20th! This gives me time to work on his transition back to nursing and bottle to hopefully have that tube out by the end of June.
Our miracle continues to grow and thrive amidst setbacks and we're so proud of him for that! Aidan and I are hanging on by a thread in regards to sleep but are hopeful that will change soon as Zacchaio continues to gain weight.
A little video to give you a glimpse into the bright and beautiful world of Zacchaio! (Please ignore my nappy morning hair)