NICU day 38

Today was another emotional day. After taking T swimming this morning, I headed back to the hospital after lunch and found out they had lowered E’s oxygen flow to 3 liters — after discussing with D just last night that they were going to keep it at 4 for another couple days. The nurse said he’d been doing really well on it, so I didn’t push the issue. I was a little annoyed at the lack of communication and continuity between the night team and the day team, but if E was handling it fine, I guess I was fine with it too.

I hadn’t even been there more than 20 minutes when he had his first brady. I chalked it up to a random episode (he’s allowed to have those), or maybe an adjustment to the lower flow — but then he had another shortly afterward. I was beginning to get concerned, but tried to brush it off. Then when I was holding him, he had about five of them in a 45 minute span. I couldn’t hold back my tears – I felt like he was crashing on me – and the nurse came in and took him from me to put him back in his isolette. It was all very emotional. She suctioned his nose, hoping maybe he just had a booger (that caused some issues for us once before), but his nose was clear. Then she noticed his feeding tube had come partway out. She said that can sometimes cause a vagal nerve response, which was a likely culprit of our episodes. She pulled the tube out and reinserted (not fun to watch), and he seems mostly good since then. She also turned his oxygen back up to 4 and said we’d try again later. This time I spoke up and advocated that we give him at least another day and let him rest. He’s had a few additional bradys since the tube was repositioned, but the nurse said he may have just been worn out from the day’s events. Really hoping that’s the case, and the culprit was just his NG tube earlier. Who knew a rogue feeding tube could cause so much drama?

As much as I hated to leave him, I’ve been feeling incredibly guilty about all the time I’ve been spending away from T lately, so I went home to have dinner with the family. Since the nurse and I had agreed we’d try holding again after his 8:30 p.m. cares, I had to rush back to the hospital shortly after dinner. T didn’t take it very well and refused to even give me a hug goodbye. After the day I’d already had, this shattered my heart into a million pieces. I asked if he was mad at me because I had to go to the hospital again and he said yes. I hugged him (even if he wouldn’t hug me back) and left the house in tears. When I got to the hospital I saw a text from D telling me Theo was crying because he wanted to give me a hug. So we Facetimed for a few minutes and he was his sweet self again. I even held the phone up to E’s isolette so T could say good night to his brother. It was all very sweet and I’m glad it ended well, but the mom guilt is on overdrive these days. I feel a strong need to be with both of my boys all the time and I simply can’t.

This evening went better than the afternoon. I got to hold him for three hours and he did pretty well, though he still had a few events. He put on an impressive 87 grams tonight, which equals about 3 oz. in just one day! He’s now 3 lbs. 8 oz.

I really hope these last few trying days mean we’re about to move forward again. I’ve referred numerous times to the “two steps forward, one step back” mantra in the NICU. And the nurse tonight gave me another analogy: she said progress in the NICU is rarely linear. It’s more like loop-de-loops — you’re still going forward, but you’re looping backward on yourself in order to do so.

Hopefully Emmett doesn’t pull his NG tube out again — though this video was taken not even five minutes after it was reinserted, and I’m starting to think it may be hard to get him to leave it alone!

As long as he’s okay, I’m okay.

Predictably, we get asked a lot: “how are you doing?” My answer is usually, “we’re okay.” And it’s true. We’re okay. Not great – this isn’t an ideal situation, no matter how you spin it. But I’m acutely aware of how much worse it could be. And that fearful day I was in labor by myself, I definitely pictured all the worst case scenarios. I was mentally prepared to say goodbye.

But as it turns out, Emmett is a NICU rock star. The doctors and nurses all say so. All of his “setbacks” so far have been minor, and par for the course for a baby born before he even reached the third trimester. So while I can’t help but hold my breath with every desat and feel like my heart stops with every brady, it’s completely unreasonable to expect a micro-preemie to regulate his oxygen levels or heart rate on his own. The doctors have every expectation he’ll grow out of this as he gets bigger and stronger, and by the time his original due date rolls around, he should be a fairly normal infant, just three months behind what his actual age says. Most preemies go by two ages, actual and adjusted, until they’re about two years old, by which point they usually “catch up” to their actual age.

That said, I’m aware that things can change on a dime. As I’ve mentioned multiple times, the NICU mantra is two steps forward, one step back. So far we’re more like three or four steps forward for every step back, but I know that may not always be the case. There may even be days where we are taking more steps back than forward and so I’m trying to temper my optimism with a good deal of caution. People keep telling us how strong we are, but I can’t take credit for that — it’s only because Emmett is so strong. If there comes a day where we take some major steps back, I might not be okay. But until then, I keep repeating: as long as he’s okay, I’m okay.

We can handle anything as long as he’s okay.