Joel - 9 weeks, 2 days

Today was another stressful day. Joel is still working really hard to breathe, so they have him at 4L flow now. Hopefully, he just needs that while his lungs heal for a couple of days. He is still taking the continuous feeds, and is having some reflux after his meds go in. It makes me so nervous that he could aspirate again and get worse. He is getting breathing treatments (albuterol inhaler) again, and he's getting a lot of rest on his tummy where he aerates better. He's gaining weight and is up to 1,610 grams (3lb, 9oz).

They performed an echocardiogram of his heart today as part of the hypertension study. They found that his left ventricle is showing some thickening. That is a sign it is working really hard. They compared it with resistance training of any muscle. Thickening is a possible side effect of his lungs working really hard. There is also a tiny bit of fluid around his heart. The lungs and heart work so closely together, it is hard to tell which came first, but the fluid could cause him to breathe faster. It all makes sense. The news made me nervous. It sounds serious. I asked the neonatologist whether it was good news, bad news, or indifferent. He said indifferent, and I was relieved for a moment. It's just another piece of the puzzle. Joel is already being treated with high flow oxygen, which is what one would do to help the thickening-give the lungs a break. They doubled the dose of his water pill. That should help the fluid around the heart and his lungs. Joel now has a cardiologist on his team of doctors. The cardiologist called me and said they will repeat the echo on Monday to see if any changes occur. When I asked if changes can happen that quickly, he said the thickening shouldn't change by too much but that we have to watch the fluid. If too much fluid accumulates and the water pills are not helping, they may need to remove the fluid with a needle. *sigh*

I feel so bad for the little guy! The doctors are having one heck of a time trying to figure him out. I talked to the neonatologist today, and we discussed how difficult it has been to peg down what the issue is...as he said-'too many moving parts'. For example, when he's doing well, they decrease his oxygen to microflow and start feeding him more. Then he has problems. We know he has some reflux, but does he aspirate? Does the highflow help him keep his airways open? Does he work to hard eating and fatigue? For now, they are keeping him at the same feeding and working only on the breathing. I think it's a good plan. Let's get him comfortable again! He is much more irritable when he's not feeling well. When he's feeling better, he is so much more peaceful. You can almost tell when he's on a downward slide just by his demeanor. The doctors said it can take a week or more to fully recover from an aspiration, if that is what is happening. There are some other tests they will consider doing to find out why he is aspirating. As the doc said, 'It's time to figure this out.'

I was there this afternoon to visit Joel. I took some iPod speakers and my iPod, and played him some music while I was holding him. He seemed to enjoy it, sleeping peacefully in my arms. When the nursery got a little busy and noisy, we read a new book. We've read 3 different books, and so far, he likes the ones with sound effects (even though I hold back a lot while we're in the room with other people). He opens his eyes and becomes more alert. It's cute!

Tonight, Jake and I were back to visit. We both held him and helped with the nightly routine. Joel had his eyes open more tonight. I hope that's a sign that his operated eye is healing and he's able to see more! I'm encouraged. The eye doctors will be back to check him on Monday according to the nurse. We shall see! (pun intended)

Well, that's all for now. Keep praying for the little man!

So sleepy...