At this point, we have been in the NICU for almost eight weeks. And while I am much better at speaking NICU-ese now than I was a few weeks ago, I am not a doctor or nurse. But I am a mom (still feels weird to say that). And I know what I know about my child. I see Mira every day. I study her face, her hands, her feet, the rise and fall of her chest, know her pee and poop patterns, when her boogers need to be suctioned and it goes on.
The inspiration for this post comes from a feeling I've had in my gut for the past few days. I believe that Mira is a having a set back. And it's so subtle, that I think noone is noticing but me since I'm the constant in her life. Mira was born with a hole in her heart that causes her to have a heart murmur. And as long as she continues breathing well and passing other milestones, we pretend the hole isn't there in hopes it will get smaller or disappear altogether as she gets older.
And she's been doing well with her breathing, even one day being able to come completely off her oxygen. When I visited her that day, I noticed her breathing was labored and asked the nurses to watch her. Later that day, they'd put her back on her oxygen - no biggie, we tried. Since then, I've noticed that her breathing is labored, that one of her little feet was swollen after cuddle time, that her breathing is "gravel-y" and that her little belly button looks poked out. I've inquired about each of these signs with her nurses, more curious than convicted. And I was told by each of them that it's nothing to worry about or some other medical explanation of why it might be happening or why my hunch isn't founded.
But after tonight, I'm now convicted. As I was staring at her face, I noticed that it's starting to swell. I have a suspicion that she has fluid gathering in her lungs (this happened when she was younger) that's causing her breathing to be labored. It can be remedied with a round of medication and shouldn't set her back too much. Her care team is made up of really reasonable and receptive people, so I shouldn't have to fight too much to get them to check it out. But the mama bear in me will be ready just in case.
Moral of the story is it's ok to follow your "mom-stinct" over science because sometimes it really is mind over medicine. While the nurses and doctors see your baby everyday, you are just as much a part of the care team as they are. And you are just as likely to notice that something is happening, if not moreso. While you might not know the medical term for what's happening or what exactly IS happening, say something. And if the feeling in your gut won't go away, push if you have to and don't worry about seeming like the crazy lady who nitpicks over every thing. More than being your baby's mom, you're the #1 advocate for her health.
So, wish me luck, I talk to her doctor tomorrow. Thanks for your prayers and support.
****UPDATE: It was exactly what I thought it was. By the time I made it there in the morning, the doctor had already prescribed meds to get the fluid off her and out of her lungs. Mom-stincts prevail again! BOOM!
|Mommy and Mira just cuddling in the NICU.|