First of all, we had a great start to the day! Tess is back on high-flow nasal cannula as of this morning. Woo hoo! She’s eating and gaining weight, too – 1200g (2 lbs 10 oz). SUCH a happier girl and set of parents. 🙂 she’s still pretty tired, but her color’s good, she’s moving more and complaining when we change her diaper. I never thought I’d be so excited to see that cannula come back.
Out of necessity, we snapped immediately into our old schedule. I had a morning meeting and Dave had a late morning meeting, so after a quick celebration I ran to work, and then Dave traded and I went to rounds. The good news just kept on coming. Her red blood cell count is still where they want it, and she’s breathing so well they dropped her from 4 to 3 liters 4 hours after taking her off cpap. It didnt work – but it was flattering for them to try! She’s getting more food today too, triple that pitiful amount from yesterday.
I don’t normally sit with her all day, but today it just made me happy to see her breathe and squirm, so I treated myself to a book and baby time while Dave caught up on work. Let me tell you, hearing her cry after days of silence, and being able to comfort her with a pacifier and touch is incredible. After days of blood transfusions, blood gas draws, lumbar puncture, x-rays, head ultrasounds, IV changes/issues and multiple respiratory apparatus changes, it felt almost normal to Avagard (hospital purell) my hands, stick them into the glass belly ( thank you for that, Karin!) and tuck her pacifier into that little, tube-free mouth.
She still has dips where she needs more oxygen, but it looks like the worst of this roller coaster ride may be behind us. Don’t worry – we know she could pull anything next week or tonight! But for now, it’s a huge relief.
Wow. I just held Tess’ hand and head for over an hour while 4 nurses and nurse practitioners tried to give her an IV. I’ve been saying picc line for 2 days, but as she only has a few more days of antibiotics then loses the iv they don’t want to be so invasive. Tess was a total trooper and the nurses were really careful – most of the time spent was looking for a site that would work – not sticking – but I’m glad it’s over. Cool moment? After they finished, I stayed that way for a while so she could fall back asleep. Instead, she woke up all the way and just stared at me through the incubator wall. Then she smiled – a real one! I kind of thought my heart would explode. 🙂
I just couldn’t put her down! We just got kangaroo with Tess, who will now cry for her pacifier. I know that’s not usually exciting, but pacifiers are like baby gym in the NICU. It’s how they practice the sucking-breathing-eating coordination, and it’s a lot of work when every calorie is hard-earned. She’s super alert again, and is actually looking at us for short spurts and tracking us when the movements aren’t extreme. All of this and tolerating (loving!) kangaroo means Tess is back!
Random nice act of the day? Our Corner Cafe quadruplets daddy was super sweet, and gave us a gift card this morning! He said that he’d been so taken care of when his family was in the NICU, it made him want to pay it forward. We’ve been doing this for 4 weeks, and I already know exactly what he means. The NICU lifestyle is so weird that you feel a bond with anyone who’s going through or has gone through the same thing. I feel the urge to pay it forward and we’re not even out yet! I wish I could describe the small moments of kindness that we get all day: smiles, hugs, jokes, emails, phone calls, care packages from previous NICU moms, support from coworkers, Ronald McDonald success pictures, commiseration from other parents… It’s a terrifying thing to live through, but I’ve never experienced such an outpouring of kindness like this, and I’ll never, ever forget how thoughtful everyone has been, from barristas to long-lost friends to family. It makes this experience more well-rounded than I realized was possible. I honestly thought this would be 3 months of terror and depression. It’s not. We never quite let down our guard, and that’s exhausting, but it feels more like baby limbo: some good moments, some bad, lots of other, and nothing familiar. Still, 4 weeks in is nothing to sneeze at. We’re past the desperate homesickness and into slowly looking towards a more mature baby and the trappings that go with. Just think – she may hit 3 pounds soon! Lol.