On Monday Verity and I returned to Children's Hospital for a GI evaluation. She had to stop eating 4 hours beforehand, but thankfully she was pretty sleepy in the early morning. The scan itself didn't take very long, but it was strange and a bit sad to see her strapped on her back to a board with large velcro bands covering her tiny body! Her arms were raised so her little clenched fists were above her head. Once the doctor was ready, the tech rotated her on her side and fed her barium from a bottle. I was glad to see that she did suck and swallow from the bottle! After a bit of this, they did switch to a syringe. Similarly to the swallow study, we watched as the barium made its way down her esophagus and into her belly, but then it went further: her stomach seemed to swell up like a balloon as the barium filled it and made it light up on the screen.
Verity was such a little trooper. She had some reflux, and since she had been dealing with congestion for a few days anyway, it was a bit of a mess that I got to clean up and comfort her before we continued the test. After her tummy was all the way full, we waited and watched...and we did see some reflux that didn't come out of her nose/mouth. Granted, she was flat on her back, a position we NEVER have her in when we normally feed her! But still. It makes me wonder how often she deals with reflux like that.
The results of the test were then sent to the pediatric surgeon, with whom we consulted the next day. He agreed that the risks of a G-tube surgery would far be outweighed by the benefits to Verity, as she is doing so well overall. I was so pleased that he had obviously read some more current research about Trisomy 18, and we were on the same page as far as proactively improving her quality of life. I really liked this doctor--once again, we are so thankful for God's guiding hand in allowing us to meet with caring, compassionate doctors who are working on Verity's behalf rather than fighting us as so many in the medical community do when it comes to children with "dire" diagnoses.
The surgery could have been done the very next day had it not been for the fact that Charis and I left yesterday to travel to her regional speech tournament! So the surgery date is set for Monday. We would appreciate prayers for the doctor and medical staff as well as for Verity to do well under anesthesia and to recover quickly. The G-tube will allow us to pump Verity's food directly into her tummy, freeing us from the horrors of the NG tube she has had since birth!! I am grateful for the feeding tube for keeping our baby girl alive, but I will NOT miss the paranoia we have lived with being worried that it might come out, even more so now that she is alert more often and flailing her arms and hands so much.
We will continue to offer food orally--from the syringe and/or breast prior to starting the feeding pump. We will use the same feeding pump with her G-tube that we use now with her NG feeding tube. I will try to post a video showing you how we currently do feedings for those who haven't seen anything like this before. It was completely new to me when we began caring for Verity outside my womb...almost two months ago now! TOMORROW IS HER TWO-MONTH BIRTHDAY!!!!!