Yesterday Oliver went to his check up with Dr. Rosenthal. They performed another echocardiogram to see what was happening with the sub aortic membrane that was found growing in March. Everything looked the same. Dr. Rosenthal believes this membrane was there in January but they didn’t see it in the echo. The function of Oliver’s heart has improved slightly since January; they can see these kinds of improvements only if they space out the appointments enough. 

This membrane has the potential to grow and block the flow of blood in his sub aortic, and it is now the highest priority issue with Oliver. The right and left chambers of his heart have adapted well to working together, and I think this is why he has shown slight improvement in function. But if the membrane grows larger it could send him back to where he was before this last ballooning, according to Dr. R. He was in a desperate state at that time and we won’t allow him to go back there. It is also still possible that the membrane will stay the same size and not require intervention; Oliver has certainly surprised us before.

Dr. R estimates that within six months Oliver may need to undergo surgery to remove this membrane. Unfortunately it would have to be open heart surgery, as catheters only work in situations where everything is stable in its place. This membrane is a thin tissue and moves with the flow of blood. 

Dr. R says Oliver has less reserves than other patients, because of how hard his heart has to work already. This means that recovery will take more time and be more stressful on his body. For this reason, they would only remove the membrane and not perform any other procedures at that time. Getting the membrane out could buy Oliver years of not having another operation, as long as his valve continues to function well.

My wishes for Oliver are that he continues to grow at a good rate, so that his aorta gets bigger in proportion to the membrane; that the membrane stops growing; that his heart function continues to improve. Above all I hope that he keeps being the happiest baby I know. Dr. R’s nurse told Claudia that Oliver’s happiness is the best indicator of his state of health. Looking at it this way makes me feel very optimistic for Oliver.

Oliver’s next appointment with Dr. R will be in 7 weeks. 

I visited yesterday and Oliver ate a ton of food. We sat down to dinner together and during that time he munched on an apple, then some roast chicken, and for dessert he ate several spoonfuls of strawberry yogurt. Claudia has just recently finished transitioning Oliver, very very slowly, to only 4 meals per day. He still eats continuously at night. The point of this is to allow his stomach to contract and expand in a normal manner. I believe it should also allow for Oliver to feel hunger, so he can eventually make the connection between feeling hungry and then feeling full once he has eaten something orally. Claudia hasn’t seen any clear signs yet that he is feeling hungry. But Oliver’s really not a complainer either. If last night was typical, I would say Oliver is a very good eater. He ate everything enthusiastically and seemed to really enjoy the meal. Claudia thought that the extra company made this meal a little more festive too so that may have something to do with it. There was one time when a piece of something bigger reached his throat and he began looking like he was going to gag. Oh no I thought to myself, here it comes : (  but then Claudia got up calmly and went inside and returned with Oliver’s bottle, full of water. She held it to his lips and he sucked some water down. It was kind of hit and miss, I can tell that he doesn’t exactly have the sucking down yet but he seemed to understand the purpose of the water and then magically he swallowed the food along with the water, and everything was fine!

I believe Oliver has a GI appointment Monday, to check how his mic-key button is looking. I asked Claudia about it yesterday because it looked a little red still. She said she was concerned about that too, and that it was time to change something out for the first time so that’s what they’ll be doing at the appointment. 

Oliver has added more sounds to his vocabulary. He’s so expressive now with his needs, or maybe I should say insistent? Not sure what the correct word is, but he is communicating with Claudia very well. He has a whole host of gestures and sounds and it doesn’t seem to me that Claudia has any trouble understanding what he wants. She’s actually very tickled by his persistence. It’s endearing because it shows how strong his will is. Love to see that!

I didn’t take any pictures this time. I was just so happy to be with him that I completely forgot. Maybe mom will send me some soon.