The day finally arrived, it was the day of surgery.
There really isn't anything that can mentally prepare you for surgery. Especially on your newborn child. We knew we had the best team members working on him and we knew that the surgery was fairly common and minimally invasive, but not even the facts could stop the anxiety.
Three hours of worrying and waiting finally paid off.
The Waiting
We waited and waited to hear that he was finally out of surgery. As Dr. Bleacher told us, most of the waiting was due to them having to wait for pathology to tell them they could proceed with the surgery. As he told us prior to, they would go in with a scope via three small incisions, examine the area and make sure they could find the dead versus healthy colon areas. They then took a small piece of the tissue and sent that to pathology. There, they would examine the tissue under a microscope to make sure they found Ganglion Cells (Healthy colon). After they got back with the results, the surgeon would then proceed with the surgery. It took pathology an entire hour to get back to them. So most of the surgery was spent waiting for those results.
The way he also explained it to me, was that they would remove the dead area, and pull down the healthy colon section, and attach it really tight and that was that. It is called a "Pull Through Surgery". The really amazing thing that CHOA does is they call you every hour after they start to keep you informed as parents and it really helped me relax. I initially was nervous when I got the call that they had started, but that worry and anxiety went away.
After waiting those three hours, we finally got word that he was finished! I couldn't have been more relieved. As per usual with infants, they wait until they are steady off of anesthesia before they bring them back to the NICU. We had to wait a tad long, but soon he was up next to us. They weren't confident with how his oxygen stats looked so they kept him intubated until it normalized. I wasn't too surprised considering they had only just taken him off of his cannula (supplemented air through his nose tube). Nonetheless, I was just relieved that he was finally done and back at our sides.
Finally Fixed
Here he was, hooked up to all of his machines and cords. It looks a lot scarier than it actually was. A lot of these are meant for monitoring. The only thing we were wanting to come off was the intubation.
With three small holes, one in his belly button and two on his sides, he looked like the same babe. It's like nothing ever happened. But we knew that his insides were new and needed time to adjust to that. So because of the surgery he had, I wasn't allowed to breast feed him. I was okay with that, but there was a bit of confusion with our nurses, Dr's, and overall floor doctor for the NICU. One said that it could potentially be today that we nursed, one said a day, the other said a few days maybe longer. The uncertainty of when I could hold and nurse my child again was depleting.
Having the energy to deal with everything going on was really hard, but I had to find it some how.
The next day he was able to get that intubated tube out of his throat and was breathing pretty well on his own! The nose cannula was purely a little extra room air to give him more time to adjust to not having a machine breath for him. His doctor told us that oddly, he didn't require much medication to sedate when normally Down Syndrome babies require quite a bit. I was kind of shocked to hear that because despite the eyes, he looks like a normal baby. His head function was strong, his sucking and feeding was exceptional but it was better than most, and now he didn't require a lot of medication. I was beginning to wonder at what severity would we be actually dealing with his Downs. Would he have mental retardation or issues with his milestones as people said he would?