Today was weird. I've kind of gotten used to my NICU routine in the last 12 weeks. The same 3-4 nurses usually care for Isaac and know me by now and know my routine. I've become friendly with them and the staff and comfortable with how the NICU works.

Today, there was nobody that I knew in Isaac's wing of the NICU. I think they were rotating some nurses around, because every one of them was one I hadn't seen before. I was surprised at how much it freaked me out. I guess in a traumatic experience such as having a preemie in the NICU--any sense of normalcy and constancy is very calming and comforting. I didn't realize how much it helped until it was gone. I totally felt "off" all day. It actually made being at the hospital a lot harder, because it made the coldness of the equipment and the realities of the tests and procedures being done to Isaac so much more acute. Strange.

I've appreciated so much the nurses who care for Isaac--they truly care about him and do such a great job. I appreciate them even more after today.

Isaac has been struggling with edema (generalized swelling from fluid retention) for a while, but it's been particularly bad lately. There's been talk of steroids for a while, but serious discussion finally began yesterday. Steroids are anti-inflammatory drugs, so the purpose of using them is to get the fluid out of his lungs so he can finally breathe properly. The only reason they are giving him the steroids is to get him off the CPAP. There are side effects involved, including growth suppression, but the potential benefits outweigh the risks at this point.

I feel much better about giving him steroids at this stage of the game. One because it just feels like the right time, and two because he's off the Ganciclovir and on full breast milk. They will do a 5 day course and see how he does with it. The hope is that this time next week he will be off the CPAP and on a nasal cannula. Isaac can go home on a nasal cannula, he can't go home on CPAP. We'll be saying lots of prayers and keeping our fingers crossed. Even if he doesn't respond to the steroids, I am so incredibly proud of him. What a trooper he has been.


Just FYI---On Sunday April 29th, our family will be participating in The March of Dimes WalkAmerica. Here is a blurb from their website, walkamerica.org :

"Premature birth is the #1 cause of newborn death. It has reached epidemic proportions in the U.S., endangering the lives of more than half a million babies. And it's growing at an alarming rate. That's why we need you to participate in WalkAmerica.

Walk for a special child in your life - a healthy baby, a premature baby or sick one. Walk for all babies."

We would love you to join with us in supporting this cause. You are welcome to walk with our team, create your own team, or help us reach our goal of raising $500 for the March of Dimes. Our team page is http://www.walkamerica.org/miracleofhope.

Additionally, I just want to thank all of you for your unceasing support and love. Your emails, cards, service and prayers mean so much to us. We are truly humbled by your love and generosity. I will eventually be able to thank you all individually, but until then, please know that I read your comments, your emails and your cards and appreciate them very much. You are doing a lot to help us through this. We are very blessed to have such great people in our lives.