Journal entry by Marie Ferderer —
Tahlia has been doing very well lately, with no more hiccups since she was discharged from the hospital again a couple weeks ago. The continuous feeding pump has been a game changer for all of us. Tahlia almost never spits up anymore, and when she does it is a very small amount and she has only aspirated once or twice since we've been home again. The feeding pump has also been extremely helpful for me. To try to combat the aspiration problem, I had been slowing Tahlia's feeds down so they took an hour or more at a time. I was also the only one who knew the intricacies of her feeding, so I was the only one to do it every three hours. Now that Tahlia has the pump, we don't have set feeding times at all. I just add the food when it gets low and change the bag once a day. No more middle of the night feedings, and I can be away from Tahlia for more than two hours if needed. It has been very freeing!
Tahlia is scheduled to have her g-tube placed on May 30. We had to give her lungs plenty of time to heal following her hospitalization. We are really looking forward to the g-tube. It should be *much* more comfortable for Tahlia than the NG tube, and it should be easier to manage.
Other than that, we have been enjoying the beautiful spring weather and just hanging out. Tahlia is smiling a lot now, which is so adorable! She also finally got to meet her big cousins this weekend, and she was enthralled with them.
We are praying that things continue to go smoothly and that there will be no delays to Tahlia's surgery.