Mira has been on the progressive care floor for several days now and has been getting around the clock care from mommy and daddy, who have had countless trainings on her medical care. We do almost everything - feeds, diapers, administering medication, wound care, bath, you name it. Her vitals have been beautiful, barring a little bit of tachypnea (or fast breathing) that's become her standard. Talks of home started happening fast and yesterday we even got to take Mira off the floor for her first exploration of the hospital off a monitor. She even got her first breath of fresh air and sunshine. The only thing in our way for going home has been her wet sounding lungs, breathing rate, and weight gain, then last night she spiked a fever, which had us concerned about a virus or infection.
Yesterday, Mira had a swallowing study done while due to concern about her slow weight gain. The worry is that the milk was aspirating into her lungs if she didn't have a strong swallow. She failed the test and showed signs of aspiration every time she took the bottle. We were super disappointed. Now, that means we have to find out if she's also aspirating from her NG (nasogastric) tube into her lungs as a result of her reflux. Think of it as "pouring" milk down her tube and into her stomach, only to have it rush back up and go down her trachea into her lungs. She's taking nothing by mouth for the next day to see if her lungs clear up and she sounds less junky. That means the aspiration wasn't related to her reflux. If so, we might be able to go home with an NG tube relatively soon. We'd come back for an outpatient swallow study in 4-6 weeks to see if she's able to swallow more strongly then. But if she doesn't show improvement, then they will bypass her stomach, give her an ND (naso-duodenum) or NJ tube that goes further down in her intestines and then "grow her" with high calories for several weeks untilshe can have a G-tube surgically put in place, and then go home. The reason she can't just have the G-tube surgery now is that it involves anesthesia and with her failed extubations and struggles to come off the breathing machine, they don't want to risk putting her back in ICU for not being able to breath on her own. She's just too small and weak now. Unfortunately, if a ND or NJ are the only two ways to get her nutrition needed in order to grow without risk of aspirating in the lungs besides the G-tube, and that could possibly mean we're going to be here even longer. It's completely disheartening to hear.
I had to meet with the "counselor" at the RMH (I'm pretty sure it's a college intern but nonetheless, it's a weekly check-in to see how things are progressing) tonight, and I was pretty annoyed at having to miss bath time/weigh-in and her 8pm feed, but then low and behold, I actually enjoyed the talking. I was frank with her and it felt good. She also said something that was obvious yet profound. She said "whatever's best for her," and it dawned on me that what's best for me is to come home soon. But what's best for Mira might be waiting and growing and getting a G-tube. Rushing her home with aspiration into her lungs, causing pneumonia, a collapsed lung or worse isn't worth it. And suddenly, a wave of peace about it crashes over.
Yep, so it might be a few more weeks... It sucks, but if it's what's best for her, we'll gladly take it... It's a continued sacrifice, and like true sacrifice, it hurts... but, it will be worth it so when we take her home thriving and growing.
It's amazing how a five pound baby can teach you so much.