Posted (Tina) in All Posts on February-26-2008

Ella had a great night of sleep, but for some reason, was fussy most of the morning. Then she realized that it was almost time to go see Dr. Kays, so she opted to behave for a bit (she always puts on her best for him).

Our appointment time was good. We went ahead and changed out Ella’s g-tube for a smaller one. Actually, Josh went ahead and changed out the tube, with the nurse practitioner supervising. Yikes – – that is not something for me, so I am glad that Josh doesn’t mind doing it!

The Mic-Key g-tube has a balloon inside that is inflated which keeps it in place. Before, it was inflated with 5ccs, so today we decided to inflate it to only 3ccs.

If you remember, the radiology test recently showed that the balloon part of the g-tube might have been occluding the antrum (lower portion of the stomach closest to the pylorus). Since her feeding issues seem volume related, we are hoping that the smaller tube along with the smaller balloon will give more room in her belly and will therefore have a positive effect for her feeding issues. Only time will tell.

Also, the nurse practitioner had to burn off the granulation tissue. Thankfully, this is not painful for Ella. I think it is more painful to watch!

We are scheduled to see Dr. Kays next week. If the feeding issues do not improve, we are considering an increase in her current medication, Reglan. Reglan increases muscle contractions in upper digestive tract. This speeds up the rate at which the stomach empties into the intestines. Based on her weight, she could take more of it.

The focus is on the feeding issues so much not only because of the inconvenience and discomfort to Ella, but also because she weighed in at the same weight, yet 2 weeks has passed. It is common for CDH babies to have a tough time with weight gain, so I should expect this challenge.

When I thought about it today, it makes sense because Ella is supposed to take 550ccs each day and we have had a tough time meeting that requirement lately with all her feeding issues. Also, she is only on 24 calorie food so the density might need to be increased. But right now, we are trying to identify what is causing discomfort and retching before we look to change the food in any way.

This afternoon when we returned from the doctor, Ella was in a great mood. She was so smiley! It was nice to see. Who knows, maybe the change in g-tube really did make a difference to her. Again, only time will tell.

Tonight there were severe thunderstorms in central Florida and a tornado watch. When we were hanging out, all of a sudden the electricity went out. The drill that Josh went through the first night that Ella was ever home with us (where Josh thought there was an emergency and Ella just needed her diaper changed), paid off. Immediately, Josh jumped up from his chair where he was eating dinner, and ran into the bedroom to grab the portable oxygen tank. He successfully transitioned Ella’s oxygen within a matter of seconds. Thank goodness!

Seeing Ella in such a great mood makes me long for the days when Ella is stronger. When she is feeling good, she is just so happy. We just need to keep holding on to the hope that she will grow and get strong.

One last thing to share: God provided a tremendous blessing while we were exiting the office of Dr. Kays. Another CDH patient was there for her check-up. She is 9 years old and she looked great with her ponytail and big smile. We spoke with the family briefly and it was so great to see this girl grown up. You could barely notice the scars across her neck from ECMO.

Also, it was neat to experience a 9 year old CDH survivor that was looking at Ella with eyes of compassion and sympathy. It was as if there was an instant connection since they had both survived the same birth defect and had matching scars on their necks.

Immediately, Josh got teary-eyed. We looked at each other and knew that it was a specific arrangement by Him to be blessed.

Galatians 6:9
Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.