Progress?

I guess the “advantage” of having setbacks is that they tend to be followed by more progress. We certainly have seen that with our babies during this journey.

After several bad days (needing to go back on the vibrating ventilator, a blood transfusion two days in a row, no feedings), Colin is moving forward again. We started the feedings yesterday, and are having mixed success — his little tummy needs to remember how to digest the food again. Because he was only able to digest part of each feeding, they have cut the amount he gets in half to 1.5 ml every three hours. When he is able to successfully process that, they will increase the amount of milk he gets gradually until he eventually is getting as much as Veronica (a long way down the road, I’m sure).

Even without the milk, Colin has continued to gain weight and yesterday topped the scales at 2 pounds 3 ounces. Yeah!

We also signed the consent form to start Colin on the steroid treatment, which will begin today. Because he has been on the ventilator for a month, he now officially has chronic lung disease (also called bronchopulmonary dysplasia, or BPD). If the steroid treatment is effective, it will help reduce the inflammation in the lungs and allow us to get him off the ventilator. The sooner we can wean him from the ventilator, the better chance we have reversing the BPD.

As with all things, however, the steroid treatment is not without risks, hence the need for the consent form. We have decided to move forward because we feel fairly certain that the possibility of increasing Colin’s chances of having cerebral palsy is less that the problems his continued use of the ventilator is causing.

We should know within a day or two if Colin is having any of the short-term reactions to the steroids — such as a spike in his blood sugar levels — that would require us to stop the treatment. We will know if they are working within five days.

Veronica’s reflux medicine seems to be helping the bradys; the number and severity of her episodes has gone down considerably. They also were able to lower her oxygen levels again. (We had to increase the levels when she was having the frequent bradys to help her recover.) Now we just need to be able to get her started eating with a nipple and we’ll be one step closer to bringing her home.