Bennie Wayne

We have been riding the waves of NICU ups and downs the last few weeks as Bennie has continued to grow. Overall, we are happy to share that is she doing well and progressing. Sometimes it is 2 steps forward, 1 step back and then 2 steps forward again.

Temperature Regulation

Bennie has gained more weight, so she is now able to regulate her temperature (she is 4.5 lbs!). This means she no longer needs the top on her isolette and we can hold her as much as we want! She loves to be swaddled and snuggled ❤️

Gastrointestinal and Feeding

Bennie’s feedings were increased up to 19 ml every 3 hours a couple weeks ago and she started to have some dumping. Dumping occurs when her intestine is unable to absorb the amount she is given and it comes out in large amounts into her ostomy bag and as watery stools. Dumping causes her to lose nutrients and fluid. When this happened, the doctors decreased her feedings back to 10ml every 3 hours to give her intestine time to rest and recover. This worked for Bennie and now we have been increasing her feedings again slowly. She is now tolerating 16 ml every 3 hours.

For now she continues to get her nutrition from IV TPN and through her OG feeding tube.

We have also been working with the speech therapist on oral feeding for Bennie as well. Because she is still on CPAP, she is not ready to drink milk from a bottle or latch at the breast. To give her positive feeding experiences, we are able to swab her mouth with breast milk while she is getting her full feeding through her feeding tube. She really enjoys it!

Planning for Surgery

This week she will be 6 weeks out from her first surgery which means she is close to having her second surgery where they will reconnect her intestines.

During this surgery they will also place more permanent central IV access for her TPN as she will very likely need to continue some IV nutrition support when we go home.

Breathing and CPAP support

Bennie has made some big improvements with her breathing. She was able to decrease from a pressure of 7 down to a pressure of 5 on her CPAP – which means she is closer to getting off the CPAP. She has also been needing less oxygen.

She has had some episodes of apnea (forgetting to breath). Up until a week ago she was getting caffeine which helps her remember to breath better. They are giving her some more caffeine today to help her out again. As she gets closer to her due date this should improve and she won’t need caffeine anymore.

Happy Milestones

Over 4 lbs!

Chilling in an open isolette!

CPAP of 5!

Over 50 days old!