Day 28: Four weeks of life!

Hi everyone... I just hurdled the 4 week mark!

So-so day... Lily is still requiring more oxygen than they'd like to see. She's tolerating her feeds well and is looking great, but she's been needing between 45-50% oxygen (as opposed to the 35-40% needed last week), and is still desat'ing fairly frequently (she didn't desat at all when she first went on the SiPAP). Though the desat's aren't severe (usually 70s), and she pulls out of them herself, they're still frequent enough to cause the doctors to ask "what's going on?" When she should be trending towards room air (21% oxygen) she has not be able to break through the 45% barrier for a few days. She swings fairly severely from the high 90s to the mid 70s, so the doctors are trying to determine what's causing it. 

Importantly, even though her blood oxygen is volatile and is requiring higher vent settings... the NP (nurse practitioner) told Sara this morning that she "has been working in the NICU for 20 years, has seen a lot of babies, and for a 24 weaker, lily is still doing very well." The fact that she is tolerating full feeds is big, they say. She's also trending positively on weight... Although she lost 10 grams last night, she is still holding steady above 1000 grams (1040 today), or in pounds at 2lbs, 5oz as of 8pm.

So, what's causing the blood oxygen volatility?

(side note: I just looked in the isolette and saw Lily's chest wasn't moving - she was mid-apnea. Sure enough, her pulse started dropping, down to about 80. I popped the door open, tapped her back as the nurses started rushing over... she started breathing again, and her pulse and blood oxygen rebounded. Did that really just happen? Wow. That's a Brady/Apnea. It is surreal how 'normal' this rollercoaster is getting.)

Back to blood oxygen volatility & what's causing it...
There are a few possibilities, each of varying severity. It could be either the low hematocrit levels (mentioned yesterday), or there is a chance that her PDA has re-opened. The plan is now to re-check her hematocrit levels at 5am... If they haven't stabilized, they will probably do another blood transfusion to re-up her hematocrits. If that doesn't fix the oxygenation issues, they move on to a chest scan that will determine whether the PDA has re-opened. If the PDA has re-opened, they will explore every possible alternative before surgery, which is really a last resort. It turns out that something like 25% of the PDAs that closed by indocin end up re-opening.


The docs also said that Lily has a soft heart murmur. It's hard to hear over her ventilator - and it's not as though they can turn off the SiPAP. They seem to be less concerned about that, though they aren't sure what's causing it at the moment. Could be the hematocrit levels, could be an open PDA, not sure. To be determined.
A colleague offered a great analogy:
"It sounds like going to the doctor and being told you have terminal cancer. You go back the next day, and they say it's just a really bad cold. Then, you go back the following day and they say it could be a lethal form of pneumonia that will either clear up in a week or so, or get worse."

That pretty much sums it up. You just don't know what each visit will bring. When I arrived at 8:30p, her blood oxygen was in the high 80s. She started a desat'ing episode about 10 minutes into the visit, I gave her a pacifier, and her blood oxygen popped to the high 90s. Then she had a Brady, down to the 70s, then slowly back up to the 90s. Down to the 70s, up to the 90s. Over and over again. 

They say not to look at the monitors. Right. How can you not watch your child's blood oxygen swing around, or  pulse drop to a beat every two seconds? They say the Bradys are "totally normal" and that they'll be happening for a long time. I'm not sure if that's a normal I can get used to.

Normal. Normal? What a bizarre word. Any sense of normalcy has been so distorted by this whole thing. Somehow, Bradys are indeed becoming normal. They're not quite as upsetting as they were last week... they're still upsetting, without question... they're just becoming more routine. The monitors, the bradys...  a continuum of highs and lows. 

So... tonight we're:


- Celebrating 4 weeks of life, full feed tolerance, positively trending weight, and 12 days on the SiPAP!
- Praying for a closed PDA (again),  strong strong bone marrow that can pump out the hematocrits, and less volatile blood oxygen levels. 


Thank you all for the prayers and support... I wish I could respond to each comment, but between work, time with Addie, time at the NICU, and the updates, it's tough. Please know that Sara and I are deeply grateful for all of your prayers and well wishes, coming from all over the world- from the US, to the UK, to France, Russia, Australia, Singapore, Brazil, Oman, the list goes on. Your prayers are working, but they're still needed!

Sleeping beauty

I'm a numbers guy... and I like the trend!