We had the entire weekend to think, worry and pray about the 4th surgery. I didn’t get much sleep over the weekend since I couldn’t help thinking we were making a mistake…
The final showdown starts at high noon Tuesday (sounds like a bad western movie). We meet with the surgeon and anesthesiologist, sign the consent forms and hold Julie until it’s time for her 4th surgery.
We’ve had a lot of people respond this past weekend to my Day 88 Update. Both Sarah and I have appreciated all the words of encouragement and especially from those who have gone through this procedure for their child. We have gone back and forth all weekend. Just about the time we really thought the surgery was necessary, then something else would come up.
For example, the OT and nurses haven’t been able to get Julie to take more than one or two cc of formula since the swallow test last Thursday. Yet tonight, Julie drank more than a full feeding (over 82 cc) in about 15 minutes despite all sorts of distractions in the room – noises, talking, lights, alarms, people moving around, furniture moving, banging, and repositioning Julie. She was able to suck the extra thick formula through an unaltered low-flow nipple without any signs of respiratory distress. The night nurse and Sarah were watching me as I fed Julie; giving me pointers along the way. At one point, the nurse fed Julie herself to help Julie get started again after several loud interruptions (this nurse thinks that I’m way too soft on Julie). After polishing off the rest of the bottle, Julie fell asleep in my arms and showed no signs of acid-reflux. That makes at least five times Sarah or I have given Julie an entire feeding by bottle. I don’t know “nothin’ ‘bout birthin’ no babies,” but I’m not imagining things – Julie can do this!
To be fair, there is more than just a failed swallow test. Julie has been miserable with acid
reflux for the past three days. The acid reflux was causing her breathing to increase and
(sometimes) her heart rate to drop. Although Julie took an entire feeding tonight, there is no guarantee that she would be able to do that every feeding from now on. At least with the g-tube, she won’t need that miserable feeding tube down her nose. On one hand we wish we had more time, but on the other we really want Julie to be able to come home soon. The surgery gives us a more definitive schedule.
Our doctors wanted to rule out problems with Julie’s intestines, so they scheduled her for an upper GI. But, the surgeon cancelled the procedure to save Julie from having to deal with more swallowing. If he finds any problems, he’ll just fix them.
Please continue to pray that God will have His way concerning the surgery. We understand that it may be His will for the surgery to take place as planned, but we know that God is able to intervene. And, we’re always open to God doing a miracle!
Andy and Sarah Horn
PS Feel free to forward this message widely (and wildly) to your friends who wish to pray for Julie. We love hearing from people near and far who have invested their time in prayer for Julie.
The final decision turned on a balance of coming home sooner against the feeding and acid reflux problems Julie had encountered. The g-tube assured us of a soon homecoming, but she still has a long way before she can handle six feedings a day by bottle.