The Roller Coaster Continues

Brooke and I have been very lucky with this blog. We’ve managed to build a following somehow, and we’ve got readers from all over the continent. We get comments from friends, family members, message board people, and complete strangers. We’re not sure how this happened, but we’re amazed by it every day. Today’s post, though, will be one that only NICU parents will be able to fully understand.

We both woke up tired today. It was the first day that at least one of us wasn’t driving up to the NICU for a morning visit. I cut the grass, Brooke cleaned the house, and we were both in bad moods. We’re just so tired from our constant worry and constant driving back and forth to St. Peters. Sleep is hard to come by, and when it comes it’s usually filled with tossing and turning. It was a long time getting pregnant, and a long six-month pregnancy, and now it’s been an unbelievably long two weeks.

We knew we needed a break, which is why we planned a date-night for tonight. We were going to visit the babies, then go to a nice dinner at a restaurant by the hospital, followed by a movie at a local theatre, and capped off by a night-time visit. Stupid us; we should know better than to plan.

So we were in bad moods from how tired we were, then Brooke’s breast pump stopped working—it was the second breast pump that has busted (moral of the story: never rent a breast pump from Babies R Us!)—and then Dr. Hiatt called.

Dr. Hiatt called us just as we were leaving the house to give us an update. Charlie and Annaleigh were both doing well, but Lily’s murmur is becoming more of a concern. He’s not worried about her heart, but rather that the murmur is a sign of an infection in her lungs. They’re doing blood-work to confirm, and antibiotics have already been started just in case it comes back positive.

So we were down. Very down.

But when we visited our babies, everything changed. On a whim, I asked one of the nurses how long she thought it would be before we’d get to hold one of the babies. She looked at me with a confused expression and replied, “you’ve never held them?” And that set off a chain of events in which we each got to hold Charlie and then Annaleigh for about 15 minutes each. It was amazing!

The amount of work it took the nurses to give us that time was insane. Charlie is still on the respirator, plus he has an IV in his leg. So he had to be wrapped up in a blanket, the tubes from the respirator has to be moved and resized (all while still attached to his mouth), and he had to be removed from his isolette. But the nurse could not have been happier to make it happen for us. She seemed genuinely happy to do all that work, just so we could feel normal for a short time.

Only NICU parents could possibly understand this. Our babies are two weeks old today, and this was the first time we’ve been able to hold them. And we couldn’t cradle them against our chests, we couldn’t gently kiss their heads or stroke their backs. We had to let the nurses hand them to us, and we had to stay completely still, and we had to balance the tubes and wires in our free hand, and we had to watch their temperatures to make sure they didn’t drop. Most moms get to embrace their newborns within minutes; it’s taken us two weeks, and even that was limited. “Bittersweet” is the only word that makes sense.

After holding Charlie, we were surprised to be able to hold Annaleigh. She is the fidgety one and she doesn’t normally like to be disturbed too much. But other than a real quick incident just a second after the nurse handed her off to Brooke, she did great! She seemed to enjoy being in her mommy’s arms, and I have to confess that I don’t think I’ve ever seen a more beautiful sight in my life than Brooke gazing lovingly at her babies.

We had missed our movie but we couldn’t have cared less. We wanted to see a movie so we had something else to think about, to focus on—but what better to focus on than the thought of holding our babies!

So we were up. Very up!

We grabbed a quick dinner, stopped for some Carvel, and headed back for a second visit. We both held out hope that Lily would be doing well and that we’d be able to hold her. And that is where things got dicey.

We returned to the NICU to find that Lily’s episodes were getting bad. Her alarms were constantly sounding. Basically, she couldn’t seem to get enough oxygen. The on-call doctor rushed over to check on her and said that her murmur is really loud. She decided to put her back on some medication to help reduce any potential fluid in her lungs, on top of the antibiotics she was started on earlier today. More blood work was ordered, as well as an x-ray of her lungs. It was NOT what we were hoping for, and it was NOT fun to watch.

We had to leave. If we didn’t leave right then, we would have ended up panicking ourselves and have mild heart attacks. The doctor assured us that it wasn’t as serious as it looked; nonetheless, we felt like all the progress we’d made earlier in the day (by holding the babies) was gone. We felt just as worried, just as over-stressed, as we had earlier in the day.

And we were back down. Very down.

And that’s where we stand right now. We’ll call sometime in the middle of the night to get some results from Lily’s blood work and x-rays; hopefully it will be nothing major.

We keep plugging along. We keep going. We know this isn’t going to get easier, but when will we stop feeling this scared all the time? Will there be any rest for us? All you NICU parents out there, is there any peace of mind to be found?


Charlie looking snug in his bed; notice the picture of us handing inside his isolette, just so he knows we're always there with him


Charlie loves his mommy



A really happy moment for us


Me and Annaleigh, just chillin'