XP: 5 Week NICU Update

Brummy14

The ladies on the Multiples board requested an update, so I figured I'd pass it along here, as well!

Our girls continue to do very, very well (we are soooo blessed). They're 4lbs3oz and 4lbs8oz, and doing better everyday. 

This week has been a bit of a road block -- they're both incredibly congested from the nasal cannula oxygen, feeding tubes and the frequent suctioning trying to help alleviate that congestion. It's a bit of a vicious cycle -- since the suctioning increases the irritation and swelling. Until they clear that up, we can't do more nuzzling or introduce the bottle -- since there is so little air flow through their noses right now. 

Paige, who doesn't need the pressure behind her oxygen, was put under the humidifier hood a few days ago to try to help -- unfortunately Claire is still a bit behind with her breathing, and can't do that just yet. They might move to medicated drops if needed, but are trying to avoid that. It just broke my heart holding them earlier this week hearing them struggle so hard to breathe. 

But, all things considered, this is a minor, minor roadblock -- just frustrating, if anything. We're optimistic we'll be introducing the bottle later this week -- and from there, continuing to wean the girls' oxygen levels. Just need to get those little noses opened up!

I think Paige is going to do just fine off of the oxygen, but Claire has a ways to go. We've tried to wean her off of 2L twice, and both times its been a disaster -- this second time, she was so worn out from trying to breathe, they did a full work up to rule out infection, chest x-ray -- the whole deal. Luckily, everything came back negative/normal -- but she was so lethargic she didn't even put up a fight when they put in a catheter to get a urine sample. However, once they went back to 2L, she was feisty again in a few hours. She was just sooo tired. Poor thing.

I cannot WAIT until we out grow the brady/apnea stage -- after so many weeks of seeing them drop their heart rates, stop breathing and turn blue, etc -- I'm just completely worn out. My nerves and heart can only take so much of that -- but when I'm there 5-6 hours a day, I'm going to see multiple events, unfortunately. 

Claire has a ton more events that require mild to vigorous stim -- and many during and for about an hour after her feeds, so they moved her feeds to a pump yesterday to try to see if that will help the suspected reflux issue. I only saw one attempt yesterday -- and it was pretty much a mega fail. She still would de-sat for literally 30 minutes after her feed ended. Ugh.

But, we've made it nearly 5 weeks (holy cow!) and should be just about ready to turn the corner and see these girls start to behave like closer to full-term babies....but for now, we continue to take it day by day!

On a positive note, pumping is going FAR better than I ever imagined. After a REALLY slow start ramping up my supply, I hit 950ml (32oz) yesterday -- and I'm almost 300ml/day ahead of what they're taking in right now. Granted, that's still 6-7 hours attached to the pump every day, sleeping no more than 2 hours at a stretch at night to make sure I go no longer than 3 hrs b/w sessions -- but I'm still getting 7 hours of sleep in the aggregate -- which seems to be just enough. It's tough, but beyond worth it. Since I know the pump is far less efficient than a baby in stimulating milk production, I'm optimistic I may not need to supplement a ton after all! I'm fine either way (realistically I know I'll likely have to at some point -- if only when I head back to work) -- but never thought I'd be able to produce this much via EP.

Thanks again for all of your T&Ps -- they are definitely working!

wille2b

im glad your little ones are doing well! and way to go with pumping, im just in the beginning frustrating part of pumping and it was nice to hear a postive story!! sending thoughts and prayers for your girlies to continue to thrive and hopefully bust out soon!

Denesdia

Congrats to mama and the babies!  Great job.  Keep up the good work.