The wait appears to be working…
Just a quick note for Julie’s 9th week in the NICU…
She is still on the high flow nasal cannula. Started at 6 liters/minute and dropped to 4 by last update. She was reduced to 3 liters/minute Sunday and 2 liters/minute on Monday. Her Co2 level was 43 on Monday AM… which is very good. Next blood gas is scheduled for Thursday morning, so we’re hoping to get a reduction or two then.
Julie had a great evening Saturday after I sent out the 2 month update. Her breathing was
beautiful – regular, slow, and deep. Although we haven’t been able to duplicate it exactly, she continues to do well.
She is gaining weight and is now up to 7 lbs 10 oz. No more preemie clothes and some of her 6-8 lbs clothes are getting snug.
She passed her eye exam without problems.
The occupational therapist should be seeing Julie sometime soon to check if she can swallow properly. This exam plus another reduction in the air-flow should set the stage for bottle feeding, but we’ll have to wait and see if the doctors are comfortable with that yet.
Sarah and I are trying to be there at 10:30 pm for respiratory therapy and then diaper change, temperature, weight, and feeding at 11 pm. In addition, tonight is bath night. Sarah is giving Julie more and more direct care while the nurses watch. Tonight they will just help her get setup and let her go by herself.
Please continue to pray that Julie won’t need additional surgeries and that she will be coming home soon without any tubes.
Andy & Sarah Horn
The reductions in the cannula encourage us that waiting was the right call for Julie. She does very well whenever we hold her, so we try our best to keep her calm and relaxed during our visits.
The NICU nurses continue training Sarah for caring for Julie once she gets home. Bathing requires care and planning. Sarah does both very well. Julie loves the attention of her hospital bath and the parent time afterwards.
The idea of actually feeding Julie with a bottle instead of a feeding tube has got us very excited. We can’t wait to get started, but we have to wait for the hospital’s OT to schedule the first sessions.