I have not posted in a while because I have been preoccupied with worrying myself sick. We were faced with a very difficult decision, and it's all I could think about non-stop for a few days. The doctors presented us with the option of trying a steroid called dexamethasone which acts as an anti-inflammatory to clear up their lungs. This in turn would hopefully help get them off the ventilators and lower their O2 needs. In most cases when this is used, babies are able to get off the ventilators relatively soon and on to CPAP and nasal cannula. On the ventilators, their lungs are being essentially pounded and damaged and the risk of serious eye problems is increased as well as the risk for other infections. So, of course, we really want them to be off the ventilators. It seems like an easy choice, except the drug carries its own array of risks. Years ago the drug was used in much greater amounts for longer periods of time (4-6 weeks). With these long-course treatments, kids who had received this steroid had long-term effects such as stunted growth, neurologocial problems, and motor development issues. Now, they do short course treatments (5-7 days) with much smaller doses. They do not believe that the long term effects will be seen with the short course treatments. It seems that the drug was overused and abused because at the time, they did not realize its potency and long term effects. The only problem is that there are very few studies of the short course treatments and the long term effects because they have only been doing this for a few years. Unfortunately, our babies and babies like ours will be the ones studied. So, how are you supposed to be able to make a decision like that?
After much thought, we decided to go ahead and try the steroid. I talked to 2 of the most experienced neo-natologists at our hospital, called a neo-natologists at Dell Children's hospital, and researched it non-stop on the internet the past few days. All three doctors said they would try the steroid course of action in this situation. One of our doctors said that he thought they would probably be on the ventilators another month without the drug and that although we were worried about neurological delays, they would suffer neurological delays spending another month intubated, not being able to be held frequently and not being able to start nippling and/or eventually breastfeeding. He stated that all of those things are also nuerologically stimulating and important for babies. Instead of waiting to see and letting their lungs be exposed to more damage, we decided that we would go with the drug.
Do you know the feeling you have when you wake up from a dream and for just a second, you aren't quite sure if you are dreaming or awake? I have that feeling, but it's not just a second, it's days that turn into weeks that turn into months. I actually sometimes question if this can be real. Surely, it's not. Then I realize that the nightmare is reality, and the dream is wishing it were not. I keep wanting to wake up, and then I realize I am awake; this is real.
God, give our sweet babies the strength to come off the ventilators successfully. Allow the medicine to help them as much as possible. We ask for you to heal their lungs and keep them free from infection. Help them to know that they have so many people ready to shower them with love. Give us the strength to get through this most difficult time in our lives. With you, all things are possible. In your name we pray, Amen.