Day 23: Date night

Well, today reminded us that we're not out of the woods yet.

I had planned a date night for Sara and me - dinner in Tarrytown - close to the hospital, so we could stop by  for a visit after dinner. The dinner was excellent - I had the branzino, Sara the sea scallops. The restaurant was called Tarry Tavern on Main Street - highly recommended! It was really great to get out, just the two of us. Something we don't do often enough!

We stopped by the hospital afterwards and visited Lily. Her nurse said she's been "doing great", but that they had to increase the oxygen in her ventilator to 50%, and bump it up to 60% for her cares. (She's really sensitive - doesn't like to be messed around with!) So, up from about 30% a few days ago. This gets Sara and me worrying if she's tiring of breathing by herself on the SiPAP... but her nurse said rapid breaths (almost like panting) are usually indicative of tiring, and Lily's not breathing rapidly, which is good.

So, when we arrived at the NICU her oxygen level was in the low-to-mid 80s. All the nurses think parents focus in on the numbers too much... we probably do, but it's really hard not to. Anyhow... we sat with Lily for about a half hour, she was stuck in the 80s, desat'ed* a few times to the 70s, but climbed back into the 80s. (I learned today that it's deSAT'ing, not deSTAT'ing. Desaturation of the blood... )

Then, all of the sudden, those goddamn alarms (I'm really beginning to hate them) started ringing - like the sound of a dying bunny rabbit... that's what those alarms sound like to me. Lily's blood oxygen level started dropping to the low 60s, and then her heart rate started dropping again. It's the worst when her heart rate drops. You don't know if it's going to come back up.

180 beats per minute is normal. But I'm seeing 140, then 120, then 110. Then it's below 100, I'm seeing it drop and drop and drop, down to the 70s. Now the words

*** EXTREME BRADYCARDIA ***

appear in flashing red on her monitor. A bradycardia is when the heartbeat slows below 60 beats per minute, or 1/3 the rate it should be beating at. Sometimes they're caused by brief periods of apnea, or not breathing. Now Sara and I are both freaking out. How can we go from such a good streak back to this? Apparently bradycardias are a "normal" part of the NICU roller coaster.

Normal. Ha. Nothing about this is normal. This is a total nightmare!!

Where was I... so, she's right in the middle of a bradycardia. Lily's nurse is adjusting her SiPAP mask, I think she was tapping her on the chest to try and 'jump-start' her. She suctioned Lily's mouth out and the numbers start rising... blood oxygen at 60.... 70.... 80.... 90.... 95! And pulse right back where it should be. She had some pooled saliva or something at the back of her mouth.

And that's what it's like to take a dip on the NICU roller coaster. It's the most nerve-wracking, horrible experience imaginable. Goes without saying that it's difficult to leave the hospital after an episode like that.

We just called, and her nurse said Lily's blood oxygen is in the mid 90s, with the ventilator set to 50%. She's doing well for the time being... great news!

So that was date night. Still staying positive, but still on the NICU roller coaster. Thank you all for the prayers, the positive energy, the notes of support and stories of hope - they keep us strong!