I think every new mother asks this question a lot during her baby’s first weeks of life. I know I did with Shelby. I remember taking her temperature five times a day because she always seemed too warm, and I recall squeezing her gently during the night to make her squeak and breathe a little louder. But after a couple of weeks, I became familiar with her natural body temperature, behaviors, and sounds, and I didn’t worry quite as much.
With Daphne, my fears never seem to fade. I ask myself if I should panic at least a dozen times a day. If my typically mild baby fusses or grunts, I wonder if she’s struggling for oxygen. If she’s squirmy and restless, I wonder if her body is stressed or overworked. If she’s extra sleepy, I worry that she’s getting sick. If she’s a lazy eater, I worry that she won’t grow fast enough to move on to her second surgery. If she looks perfect, I worry that I’m missing something. I’ve done nothing but watch her and her monitors for 6 weeks, and I still don’t know when to worry and when to relax.
Now, in reality, Daphne and I have spent less than 2 weeks of her life at home, so maybe I’m still getting used to her rhythm. But since she’s still hooked up to a pulse oximeter (which measures her heart rate and oxygen levels), being home isn’t a whole lot different from being in the hospital (at least not in terms of monitoring her condition).
The biggest difference between the hospital and home is that now I’m the one responsible for deciding when to up Daphne’s oxygen. When she was discharged from Primary Children’s Medical Center (PCMC) last Thursday, she was completely off supplemental oxygen. But at her follow-up appointment on Monday, her oxygen levels were low, so Dr. Everitt (Daphne’s official cardiologist) instructed me to put her on the smallest amount of oxygen required to maintain her sats above 75 percent and asked me to call if Daphne needed over 3/4 LPM.
I started Daphne on just 1/32 LPM, but by Wednesday night, she was up to 1 LPM. By that time, it was after office hours, so Will and I spent 30 minutes debating whether we should contact the on-call doctor or wait until morning. Ultimately, I did what I always do: I called. I don’t like sounding like a hypochondriac, but I’d much rather be the mother who called when it wasn’t important than the mother who didn’t when it would have made a difference. I worried that calling would result in another trip to PCMC and another hospital stay. But after some debate, the on-call doctor told us just to observe Daphne overnight and call Dr. Everitt in the morning. By the time I got a hold of Dr. Everitt on Thursday, Daphne’s oxygen requirement was down to just 1/4 LPM.
No one can explain Daphne’s strange cycle of decline and recovery. We’re just grateful she always seems to rebound.
Will I ever stop overreacting to small changes in Daphne’s behavior or monitor results? I’m a natural worrier, so I doubt it. Even when everything is going great, I’m hyperaware of her heart condition. I’m sure this hyperawareness will diminish over time, but I bet I’ll think about her health and check her for signs of decline every day for the rest of her life. Here’s hoping that’s a very long time!