We received some bad news on Thursday which completely caught us off guard…
I’m sending out this special update asking for prayer for Julie. She failed her swallow test
Thursday which has prompted us to agree to a 4th surgery for a g-tube and a nissen fundoplication. The g-tube is simply a hole in the abdomen that allows us to insert food directly into Julie’s stomach. The “nissen” is a procedure that wraps part of the stomach around the esophagus to control acid reflux.
The prognosis is that Julie would be ready to come home as soon as 10 days after surgery.
Realistically, she could be home the week after Father’s Day. That’s a great thing!
As y’all recall, I’ve been resisting these procedures and asking you to pray that Julie won’t need them. Yet, after the failed swallow test (x-rays indicated that Julie was allowing some of the bottle fluid down her wind-pipe) we felt that we had no choice.
Still, I am having my doubts.
First, we were having wonderful success with the bottle feedings. Julie took a full feeding via bottle on Monday night, Tuesday night and Wednesday night. She didn’t gag, cough or get red-faced. She was feeling good afterwards and showed no signs of any problems. The RTs checked her out immediately after the Wednesday feeding and said that her lungs were clear. Both nurses and RTs confirmed this last night as we were leaving the NICU. Sarah and the OT had some problems feeding during the day earlier this week, but Julie was clearly not alert during those attempts. Still, she was doing far better than last week. There was clear progress being made.
When we were first attempting bottle feedings, Julie was taking from 3 cc to 15 cc. On Wednesday, she took 82 cc. Based on the results of the swallow test, she should have had a lot of fluid in her lungs. That doesn’t make sense to me.
Second, Julie’s oxygen support was reduced from .3 liters/minute to .2 on Monday (as I stated in my last update). She was reduced to .1 on Wednesday. The next setting is zero, zip, nada, nothing! Again, this is remarkable progress!
The surgery is scheduled for 1 pm Tuesday, June 7th. Please pray that God will intervene and prevent us from making a huge mistake or give peace that this is the right thing to do for Julie.
Andy & Sarah Horn
I didn’t get a chance to go to the swallow test (as I write this three years later I still regret missing that procedure). Neither Sarah nor I could believe Julie failed. We could only think that she felt tired during the test and didn’t perform well.
While I can’t accuse the OT, I can’t help feeling that she resented our success compared to her relative failure in bottle feeding Julie.
We did everything the OT taught us – watch Julie’s eyes for signs of distress, watch her skin around her eyes for discoloration indicating a problem breathing, etc. I just can’t imagine that Julie aspirated any part of our bottle feeding to her lungs rather than her stomach. Furthermore, we had the NICU nurses watching literally over our shoulder the whole time we fed Julie.
Julie’s reliance on the cannula continued to reduce. Another surgery would set her back again when she seemed ready to move forward. I had agreed verbally, but still had my misgivings about the fourth surgery.