Julie didn’t bounce back quite as fast as we hoped…
Whew, I’m a couple days behind on updates…
Julie has been stable since her third surgery – one week ago today. She is still on the ventilator but should be moving to the CPAP machine soon. The staff has been gradually reducing the settings on the machine. On Tuesday it was applying positive pressure only (essentially acting like a CPAP) instead of breathing in and out. Julie’s right lung has expanded to fill the new space created by the surgery and her lungs have been gradually clearing of mucus.
Sarah was able to hold Julie for almost 3 hours yesterday. Julie rested comfortably during the process and didn’t need any attention from the nurses. This was the second time she was held since her latest surgery.
Her weight was gradually climbing to 6 lbs 7 oz, but fell off a bit Monday and Tuesday, so the doctors increased her calorie intake. She didn’t start feeding from surgery until Saturday night. Julie was very upset from being hungry and not eating for about 4 days. She is back up to full feedings. Sarah is able to provide a fair amount of what Julie needs.
Julie was under a heat lamp for a couple days after surgery, but is able to balance her temperature again. She has not been in her crib yet because of the breathing machine.
Sarah got some fun clothes for Julie and I’ve included of couple pictures. Sarah’s gonna be mad at me for the first one (Saturday night) with her holding Julie (she was so unsure of herself), but it gives you the sense of how difficult it is to care for her with all the tubes, wires and bandages. The second picture is of Julie in her Easter outfit from Sunday afternoon.
The doctors are still concerned that Julie may need breathing machines when she goes home, so they are still talking about a tracheostomy along with one or more additional holes in her for feeding, etc. This would require yet a fourth surgery. How she handles the CPAP this week will determine whether she needs this additional step.
Please pray that Julie will do well with the CPAP machine this time. She is getting tired of the machines and the tubes. She has the strength to pull them out, so we’re having to swaddle her arms to keep them away from trouble.
Andy and Sarah Horn
Now that Julie’s right lung has enough room to fully expand, her lungs can completely clear themselves of the remaining mucus and fluid. This probably caused her to remain on the ventilator for longer than we expected. Even so, Julie bounced back without a major incident.
The doctors wouldn’t take the prospect of a tracheostomy off the table. At this point I began to dig in my heels. I wanted Julie to have more time to recover from the surgery, while the doctors wanted to get her home. We continued to discuss our options over the next few weeks, but they warned us that without the tracheostomy Julie may need another month before she could leave the NICU. I didn’t believe it at the time, but I remained steadfast that Julie didn’t need that operation.
In addition to the tracheostomy, the doctors planted the idea of a G-tube and a nissen procedure. I fought against all these procedures with equal determination.
Sarah had kept pumping for Julie up to this point. Increasingly, Sarah worried that she couldn’t produce enough milk and that the pumping process took too many hours out of her day for too little result. We wrested with these feelings for weeks. Meanwhile, Julie got a sizeable helping of mama milk every day which helps development and her immune system.
The picture of Sarah has special significance. First, you can see the difficulty of just lifting Julie from the baby tray because of the feeding tube, breathing tube and monitoring wires. Second, this picture depicts one of the first times Sarah lifted Julie without help from a nurse (or me) which makes the process even harder. Both Sarah and I feared doing something wrong when we moved Julie. These practice sessions provided invaluable practice for when we took care of her at home.
The large syringe at Sarah’s right arm is the end of the feeding tube. The open syringe catches excess stomach fluid while allowing Julie’s stomach to breathe. Since she can’t burb while connected to the ventilator, this setup vents the stomach gas. Necessary but gross.
Meanwhile, my school work increases as we approach the end of the semester. I have papers to write and reading to complete. One class wants me to complete an interview and write up the findings, but that requires a lot of planning and coordination. The day-to-day emergencies of NICU life seem worlds apart from normal life and academia.