After the first surgery things were looking good. I was pumping as much as possible to get her breastmilk through a feeding tube in her nose. But after a month my milk dried up. I just couldn’t keep up. So they switched her to formula through the feeding tube. We had gotten moved upstairs to the main floor and out of the ICU after a few weeks after surgery.

But then there was talk of a different feeding tube being put in. She had pulled the one in her nose out a couple times, so they suggested a G Tube instead of the NG tube. The G Tube would go into her stomach and less chance of being pulled out. So we agreed and on Dec. 21 she had her 2nd surgery of her life. This one was of course not as complex and much quicker. After only a couple hours she was done and back in her room on the main floor thankfully.

She did well with it right away but soon after started to have bad reflux and other troubles with her stomach. They stopped using the GTube and switched back to the one in her nose but this time it bypassed the stomach and went right into her intestines, an ND tube instead of NG. This seemed to help things and then talk began of another procedure called a Nissen to restrict the esophagus some to help prevent the reflux.

As February started to pass us by, they finally scheduled her Nissen procedure. Now 3 months we’ve been there with no idea if we’d be going home anytime soon. Luckily that procedure went well and we were able to go back to her G tube for feeding. Although, looking back now, I think I may have gone against doing the Nissen if we could do things all over again. I don’t think it truly helped her as much as they thought it could and I think with the right reflux meds she might have outgrown it. But unfortunately I can’t go back and at the time we only had the resources given to us at the time. I learned so much over our 14 months with her and even now afterwards I’ve learned things that would have been great to have known at the time….

Next up, talk of the 2nd heart surgery and when that may be, possible rehab and weaning oxygen. Was it ever going to end?