Well, I was sure mad yesterday. And still am. I'm so confused how such a little guy can have so many problems. And just when he's making progress with the every day things, his long term outlook becomes so glum. I know life is not fair to so many but really, a 3 week old? Is it trite to ask, why him?
Of course I'm thinking how we can overcome these issues that have been placed upon his future. I'm thinking, he's only just over 3 weeks, can't we work with him to over-stimulate the areas of his brain that might be deficient due to his malformation? It's so sad, but I've heard of babies who are born into orphanages and lack the touch that is necessary for proper brain development having issues. Is it possible for us to take it in the other direction? With extra stimulation, can we help to develop neurons that might not have been developed properly? If I'm remembering correctly from reading up when Lila was a baby, I believe that stimulation while the neurons are so extremely active helps create them. Since we have this info so early on in his life, maybe we can alter the process a bit. It's something Mike & I will be looking into. Although I'm not even sure where to turn for assistance. They say that Regional Center will be supporting Ian for a very long time so maybe they will know some things. But I really believe there's got to be additional information on this theory. Maybe it's just a stretch but I have to give it a look.
So his current status is that he's still intubated. They wanted to give him a good amount of time to have the help they felt he needed from the machine in order to get back on track with a more relaxed breathing on his own. They will assess him again in the morning to see if they should pull it again.
They had to go back up on the Melrinone because they felt he still needed the help.
He's still being fed my milk through his feeding tube and is stooling appropriately, which means he's digesting it fine. That's a good thing.
In general he looked good today. Was sleeping for a large portion of the time we were there although woke up for about 45 minutes before I left. Mike had popped down to Whole Foods to get groceries to make dinner and left me there to finish pumping. Lucky me... he had his eyes open most of the time he was gone. He seemed to be looking around a bit frustrated. His eyes looked like they were questioning me a bit but maybe I was just projecting.
When I held him yesterday, he did suck on a pacifier a bit, which I thought was a really good thing since the day before they said he wasn't really interested so much. Mike & I had gone by the Pump Station to pick up a few different pacifiers to try to give him some options. I had heard if he couldn't suck to eat, they wouldn't let him go home so I was determined to get him to do it. The one he responded to was the one the hospital already had.
Although after they gave us the news about his brain condition, I'm not sure how they'll look at this rule. We'll have to inquire. I really hope we can get him to take a bottle. Of course it would be amazing if we could actually get him to nurse too. A girl's got to dream, right? We'll take it step by step and see how he does once he gets the tube out again.
In the mean time, I will continue to read to, sing to, talk and touch my little boy and hope that it helps him. That's all we can do at this point. That and continue to accept all the positive healing energy and prayers people offer to us and him, which is an amazing amount. If you are reading this, I have a feeling you're one of the many offering this to our sweet boy. We can't thank you enough. It is what is really needed right now.
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