Status update

Both boys are chugging along.

Sebastien still has a large PDA. Because of this, and because it hasn’t given him any real problems, the doctors are hesitant to wean him off the CPAP. If they take him off CPAP, the PDA could start to cause problems. They’re hoping it’ll close by itself soon. I’m frustrated by this because as long as he’s on CPAP, other development milestones get delayed.

They could change his feeding tube from transpyloric to gastric, but if they do so, he’ll have more reflux issues. So again, hesitant. But in my eyes, delaying the gastric feedings then delays the compressed feedings which then delays the po feedings (by mouth). I don’t think he can go from transpyloric feedings to bottle feedings that quickly, preemie moms can correct me on this, so again, frustrated….the longer he’s on CPAP, the longer it’ll be before he can do these other things.

They’re working on re-weaning his isolette temperature since he got cold last weekend in the open crib. Hopefully this weekend they’ll try again.

Samuel still has his swiss cheese heart, but it’s not causing any issues right now either, so that’s still a wait and see. His main focus right now is the ventilator. We found out in the family meeting today that they were going to extubate him  and move to CPAP, but his blood gas didn’t come back that great. Bummer! We’re hoping he’ll get off the vent within the next week. I can’t wait. As soon as he’s on CPAP and stable, we’ll get to hold him finally. Oh that’s going to be a great day.

His feeds are now up to where they were before he got sick. I’m hoping he’ll start really packing on the pounds soon. We realized today that he’s TRIPLED his weight since birth; Sebastien’s doubled his birth weight. Incredible.

We had such a good visit with him this evening. He was probably the most alert he’s been; his eyes wide open studying our faces. We’re so proud of that little boy, he’s overcome so much. During Sebastien’s kcare today, he kept randomly squealing — it was so stinking cute. He’s also now able to fully turn his head from one side to the next, lifting it up fully so get around the CPAP crap. He’s so strong.

Sam’s doctor agreed with my plan to get retested a few days into the next round of antibiotics (hopefully to start tomorrow). The milk should be clear of staph then, so I’ll pump like crazy and take in as much ‘clean’ milk as possible. Once the course is over, they’ll periodically re-culture to make sure the staph doesn’t return. I’m glad because my freezer is nearing its capacity.

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4 thoughts on “Status update

  1. Leslie says:

    Oh my goodness! I can hardly believe Sam may already be off the vent soon! Your boys are just amazing! Re the feeds, they probably wouldn’t go OD to PO feeds, but once he’s OG, they can start trials at PO feeding. With Bobby, they made us wait until he was on high flow cannula to start PO because they were worried about the pressures causing issues with aspiration. Once Bobby started eating PO, though, he really took off! It was amazing! Sam and Seb are doing amazingly well! You’re feeling now how I found myself feeling often once we got over the biggest obstacles…once things start going well, they just couldn’t move forward fast enough to suit me! The neos kept reminding me that Bobby would let us know what he was ready for, and I tried my best to follow his lead. Thinking of you 4 often! Hugs!

  2. Rebecca says:

    Your all are so amazing. I’m so happy to hear a good report. The hardest part of the NICU is the back and forth of the “delicate balance”. We heard those words so many times we wanted to scream! I pray for your boys often (and for you two). I’m amazed with their weight gain and how Sebastien is being weaned to an open crib. Just awesome. Go boys, go!

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