Cal is SUCH a happy baby, which just makes everything so much better and so fun! He will smile at anyone and smiles all. the. time.
His eating has gotten better. He still has his G-tube, but will usually drink 1-3 ounces from a bottle each time he eats, then we give him the rest through his tube.
About a month after we brought him home from the NICU we had his followup appointment with his cardiologist. We were expecting to have seen improvements, or no changes since we left the NICU, but unfortunately there were a few new developments that were a little worrisome. His heart echo showed some mitral valve stenosis, as well as pulmonary hypertension.
The cardiologist recommended we do a sleep study to see if Cal has obstructive sleep apnea, which he guessed was contributing to the hypertension. Cal has a smaller jaw that is a little bit recessed, and the doctors thought maybe his airway was getting blocked because of it.
We did the sleep study, and it turned out Cal does have severe sleep apnea. His oxygen was frequently dropping and coming back up and they gave us all kinds of numbers that I don't really know the meaning of. I just know they said it's bad.
(Side note...yes I did have his Owlet monitor on every night and it was never going off, but the doctors said it may just be that his oxygen was dropping and coming back up so quickly that it wasn't picking up.)
So now Cal is on oxygen to help with this. He is supposed to be on it 24/7 because of the hypertension, but we give him breaks every once in a while during the day (doctor approved). And actually, California is now Cal's favorite place (not surprised) because his cardiologist said we could keep his oxygen off for the most part during the day when we are down there since it's easier to breath at sea level. Maybe we need to move ;)
P.S. Cal's beach outfit from Lulu + Roo is too much for me to handle (heart eyes, heart eyes)
About a week and a half ago Cal underwent a little procedure where they put him under so that they could scope out his airway while he was asleep, and see what was causing the obstruction. They did a procedure called Supra Glotto Plasty where they trimmed up some extra/floppy tissue inside the airway. The ENT thinks this will help him a little, but when they were scoping out his airway, they determined it's Cal's tongue falling back into his throat that's causing most of the airway obstruction. Which is a bummer :(
The ENT we've been seeing (who did the procedure) says this is something Cal could possibly grow out of in the future, but we also may consider doing a jaw distraction surgery where they will bring the jaw forward, helping the tongue to come forward as well. This is a pretty invasive surgery and the ENT just isn't sure if it's right for Cal yet.
Throughout all of this Cal has been such a champ. He smiles through it all, and continues to surprise us all with how well he's growing and developing in other areas.
He is also followed by a Hematologist, Urologist, and Neurologist, and has monthly visits to our home from an Occupational and Physical Therapist. We are so grateful for amazing doctors and therapists who have been following Cal closely and making sure he has all of the help he needs to continue growing and developing.
There are still a lot of unknowns for what the future hold for our sweet Cal. It would be very unlikely (we've been told) that he won't have at least some degree of mental and physical delays, and we know it's going to be a long road ahead of doctors visits and followups, but we are going to give him every opportunity in the world to reach his full potential. He has already shown us his strong will to push through every obstacle thrown his way, and we know he'll continue on that same path.
Happy 5 Months buddy, we couldn't love you any more!
