All went well up until 5 minutes before the doctor came in (seriously, we were only 5 minutes away from redemption!). Then, 30 minutes after his afternoon feeding, I moved slightly, putting Jake on his back slightly and causing him to begin spewing all of his formula all over the room. In his defense, I HAD moved him in the wrong direction. And, from an entertainment perspective, it was AMAZING to see all of that formula spewing out of his mouth - I think he projected about 3 feet a couple of times. From a concerned mother point-of-view, I couldn't help but deny that 1) I didn't have the magic touch after all and 2) His vomiting is actually getting worse instead of better.
I sat down with the doctor for about 30 minutes and reviewed the options for Jacob.
1) We can insert a tube down Jacob's nose, down his throat, past his stomach and into his intestines. This tube would give him the nutrients and the food he needs to gain the weight necessary to have his surgery, which she estimated would be about 2 months away if we use the feeding tube. A few of the up sides included that there would be no cutting: they insert the tube through normal channels and would use a flexible tube that would not be uncomfortable for Jacob, but because it's easy to insert it is also easy to remove, so we'd have to keep a close eye on him to make sure he doesn't pull the tube out of his nose. It also means that the reflux will not be an issue because they will be bypassing the stomach all together and going straight to the intestines. So the throwing up will not be an issue while the tube is in. On the down side, it requires a constant drip, which means we can't just feed him a dose and be done for a couple of hours. He's being fed all the time and may even forget how to suck if we don't continue to feed him little bits via the bottle. But it would also mean that he might be able to come home as soon as tomorrow afternoon if he proves that he can tolerate the tube.
|Jake with his NG Tube, FINALLY sleeping soundly|
3) The third option she presented is that we could stay in the hospital and continue to try to get Jacob to increase his endurance until he can consume enough of the formula and keep it down on his own. However, that means that we have to stay at the hospital for an unknown amount of time until he reaches the goals that the hospital has for him. All I could think about was my dear friend, Marla, who was having feeding issues with her son in the NICU at the very beginning and how it took them 1 month before her baby was consuming enough consistently enough that she could leave the hospital.
KC and I talked about it and it was pretty apparent to both of us that the feeding tube was the lesser of the three evils for us. So, we're hoping that tomorrow morning, Jacob will have the tube inserted and that he will be able to come home to us in the evening complete with his very own feeding tube and (I'm sure) many more instructions regarding his care, etc.
This, of course means that we will have to redefine what is normal for our family for a while. We'll be looking at home health-care workers coming in to change and care for his feeding tube and food, more doctors visits, and being hyper vigilant to make sure that neither Jacob, or his dear sweet sister Courtney pulls the tube out of his nose. Rather than bringing Jacob home to begin his life in our family, we will be bringing him home to focus on preparation for his heart surgery. There will be no time to relax and just enjoy him.
I guess now we hunker down, try our best to get him out of the hospital and STAY out of the hospital, and begin the count down until he can get his heart surgery sometime this winter.
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