Friday, September 13, 2013

Second Try

Every day seems to bring something new in the NICU. I started this entry on Tuesday but never quite rounded it out, and by the time I'd returned to it each day, there was something new to report.

side effects may include puffiness and swelling

For starters, we found out on Tuesday that Calder's ROP has progressed to Stage II. Not surprising, but a little disappointing nonetheless.

You could say the odds are in his favor. The doctors at Fairfax tell us that they examine hundreds of babies each year for ROP and wind up needing to operate on only 30. This article on ROP says that 90% of babies with ROP don't need treatment. 

On the other hand, the nurse this morning told me she'd consulted with the medical director overnight, along with the nurse practitioner who accompanies the ophthalmologists who do the exam on their rounds, and conveyed that given how long he's been on the vent, they were none too surprised his ROP was progressing "quickly," and they were all very "hopeful" that they would not have to laser. Calder has never been afraid of long odds, so Kraemer has suggested that if he progresses onto Stage III-V and requires treatment, it might be time for us to buy the kid a lotto ticket. 

Happily, come late Tuesday, Calder had also progressed on his vent settings, moving to pressures of 12 and a PEEP of 6. Our hope then was that this meant he would have an easier time transitioning to the SiPAP machine, which can only support pressures as high as 10 over 8. His oxygen requirements had been oscillating between the 50s and 60s, though, higher than we would have liked to see them; this level leaves them little room to run if he needs extra support while adjusting to the new machine. So when Wednesday arrived, the day they'd planned to extubate, we received a call from Dr. B, the same doctor who'd extubated the first time. He wanted to know what to do if, after extubation, things went south.

Kraemer and I cannot tell whether we're overreacting to the [further] use of Decadron. But we again expressed our strong desire that it be avoided, especially given his continued development of ROP and the "complicating factor" of his gram negative bacteria. Dr. B agreed with us on a plan: if he begins to struggle to the point that it's unhealthy and a change must be made, they'll reintubate to help re-expand his lungs, then administer the Decadron, then extubate again a few days later. This time the dose of Decadron would be tapered over a longer period of time, perhaps 10-14 days as opposed to 7-8.

So here we are today after extubation and Calder is doing ... O.K. His oxygen needs dropped into the low 50s overnight Wednesday night, rose again on Thursday into the low 60s and dropped again to as low as 48 last night. Just before extubation, it was so obvious how much he detested that tube!! He had become agitated and more actively worked to move the tube from his mouth, either with his hands or even sometimes with his head, a nice big face plant into his pillow. So while I'm no doctor, and there may be no relation here, it's no surprise to me that as he has calmed down a bit he's converting his Os more efficiently. However, while his pH has remained steady (knock on wood), his C02 levels have slowly but steadily also crept up. Yesterday evening he was up to 70 from 66; at his 5 am gas this morning he'd dropped only one point, to 69. 

But we're not having the extubation conversation just yet. Apparently, the doctors are willing to let high levels of C02 slide until they reach the ridiculous (in the 90s). Even so, we're hoping that at 5 pm on the East Coast you can toast to a C02 in the 50s or low 60s.

checking one another out
Now, the added bonus for us is that while he is extubated, holding him is actually a possibility. I try not to get greedy, only holding him not just when it's an option but when they think it will actually help him (and they usually think that), so as soon as it was offered last night, I pounced. While he's been my baby from Day One, he's now not quite so weightless, and last night he felt like such a real little person in my arms. He loves being held; he high-sats and drops in oxygen needs as long as you've got him situated right. If I hadn't been about to pass out from exhaustion, I would have stayed in that hospital chair with him all night.

If the YouTube video isn't too grainy, you might be able to catch his smile toward the end. :)


  1. Congrats on getting to hold him again...I'm sure he loves it! Loving all of the videos...He's already doubled in size huh? :) I'll keep praying for high oxygens, low CO2s, and no more intubations! :)(I love the pic of you and Kraemer on here by the way...gorgeous dress! :) )

    1. Thanks, Veens! We really appreciate the prayers. And I'm trying to post more videos especially for you. :) The photo was taken in Destin, about a week before Calder came along.