As I was driving to the hospital this morning a song came on the radio and I felt so optimistic. I thought, perhaps there is a silver lining in this journey. I mean, isn’t it true that you can’t know happiness until you’ve known some sadness? And there is hope!
And I held onto that feeling all day until I came home. Over dinner, I listened to the song again, but this time I felt utterly defeated. I just want to scream, “How, how, how, did this HAPPEN?”
During my whole bedrest, I was always optimistic. I mean, I had low moments but for the most part I felt like we were going to beat the odds. I was confident we’d get them to viability and beyond, even though every academic article on the issue said that was an extreme long shot. I was able to rationalise every statistic and why it didn’t apply to us. We did beat those odds. But then on Day 3 of life we had a devastating event, and the result was this bleed, which is extraordinarily rare at 30 weeks. Now that I’ve played those odds and lost, I feel like I’ve lost a lot of my optimism. When they say “She has a 70% chance of x” as if that’s a good thing, I can’t help but dwell on the 30%. And when they say there are things she may never achieve… well, I get stuck there. It’s very hard too, because we have been told different things – some people just frame the prognosis so much more pessimistically than others.
I need to get back in the “We are not a statistic” mindset. There ARE good stories out there, optimistic stories with happy endings. Google tells me so!
And at the end of the day, maybe I was crazy to think we’d get out unscathed. 95% of 30-week babies survive, but that still means that 5% don’t, and I’ve seen that firsthand now. My girls are still here and they are, outwardly anyway, healthy and strong. There is a lot of uncertainty ahead, but uncertainty also means possibility. She will tell us what she needs and what she can do better than any doctor can.
I know I will feel much happier once they are out of the NICU. It’s a tremendously stressful and sad place, so it’s very hard to live in the moment when you are there. Getting them home is my major goal. To graduate, they need to be off breathing support, be stable health wise (including no apnea, bradycardia or oxygen dips), and be feeding orally. They’ve done part one. I can’t control when they achieve part two, but I see improvements every day. So now I’m doing my damnedest on the third part. I’ve never had to train a baby to eat before, let alone dealt with two who can only stay awake for a few minutes and who tire after just a few moments of nursing. But we are going to get it done, because I think the best thing for all of us will just be being together again.
“She will tell us what she needs and what she can do better than any doctor can.” Just such a good line.
You’re allowed to feel down and have bad times. This is a stressful situation and you have a lot going on. I think you’re ultimate goal of getting them home is a great one. Sending you love and corinued strength.