Inhale. The doctors do not think that Avery has any problems with her kidney function after all. Exhale.
Inhale. They have indicated that they are now, “trying a few different things” to see if they can reduce her fluid output, by reducing her fluid input. Exhale.
Inhale. They’re giving her so many fluids that, “it could be that they haven’t quite got the balance right for her particular situation.” Exhale. “Or, it could be her brain telling her kidneys to put out more than it should.” (If you are the parents… Inhale 10 times here)
Nothing is certain. Everything with these little ones, even after our two doctors combined 60 years of experience in the NICU, is “a bit of trial and error.” Although we are eternally grateful for their expertise, intelligence, and overall brilliance, these are not comforting words. Exhale.
Inhale. Although the beautiful babies in the NICU are the ones with breathing support, we parents are all literally reminding each other daily to breathe. I think at least once a day, a loving nurse looks us straight in our worried, tired, and hopeful eyes, and says, “breathe.”
Exhale. Today, Avery’s original admitting nurse, Melissa, handed us a large bowl of seafood gumbo that she made for us. It was delicious and very kind (especially from someone who works a 12-hr shift on her feet that starts at 7am). She is caring for Avery again for the first time in a month and she was so happy to comment on how much Avery has grown, and that she sees huge improvements in her respiration. She thinks her lungs have completely recovered. Inhale. Exhale.
The ultrasound they did overnight on Avery’s brain shows “near stable.” We learned today that this is good news and really means, “it hasn’t worsened.” Inhale. Logically, in the medical world, saying “stable” would be too definitive of a phrase when there are so many unknowns, so they always say, “near stable” when nothing has gotten worse. Although we have to await the doctor’s explanation, we were told that the doctor’s notes indicated that the hemorrhage on the right side may actually have gotten a tiny bit smaller. Exhale. We’ll take it!
Inhale. Exhale. The Neurologist was coming by to take a look at Avery today, so we should get their perspective tonight from Avery’s doctor on how she’s doing and, God willing, we’ll hear that nothing is urgent. We need her to grow much bigger before any head surgery is done. Inhale.
I (mom) actually got to hold her in my arms yesterday, which was amazing. Exhale and inhale 30 times. I could have sat there for 20 years. Although she was wrapped tightly in blankets and wraps, and wires were surrounding us on all sides, I tried my best to block out the sounds and sites and focus on her perfect little face and bright eyes. It’s been one month since she was born and separated from our arms. A fate I would not wish on any soul. Inhale. She had her tiny (but long like her dad’s) fingers up next to her face and her eyes were opened wide looking right at both of us. Her expressions and the machines showed that she was very happy with us being able to do so. Exhale. Because she still has a breathing tube, it’s a significant production requiring 4 nurses and a respiratory specialist to help get her from the isolet to our arms. It’s worth it. Inhale. Thanks to Nurse Anne’s prodding, the Doctor put in orders to let us hold her several times this week as she’s feeling up to it. Exhale. Thank you dear Anne. Those are moments we will treasure forever.
Inhale. We hope that we both will get to hold her tomorrow. And, we so deeply look forward to the day when we can hold her in our home and actually not have to remind ourselves to breathe. Exhale.