This is the next chapter in our long struggle with sick babies and Hirschsprung's Disease. Of course, the story began over 16 years ago. If you are just tuning in, you may want to start at the beginning.

Previous Chapter: The Fragrance of Joy

 

 

Before Colleen’s reconstructive (pull-thru) surgery, we had been told what to expect about diaper rash. I know that seems funny if you have never had a child with Hirschsprung’s Disease. It seems logical that a diaper rash would be like any other diaper rash, but that’s not the case here.

We were told that when babies with Hirschprung’s Disease have their pull-thru surgery, the most horrible diaper rash you have ever seen is sure to follow. The problem is that while they have the colostomy, there is no poop touching the skin on their bottom for all those months. Their skin is not accustomed to the acidity found in poop. It’s sort of like the poop just eats the skin off their bottoms. In order to help protect Colleen’s skin, we were told that we should use an ointment that had a large amount of zinc in it, as well as petrolatum to help it spread. It’s like Desitin on steroids. The nurses told us that we would need to put the zinc on very thick. The hospital pharmacy sent up a one pound tub of the ointment, and it sat on the end of Colleen’s bed—ready and waiting for poop to arrive.

Early Monday morning—Day 3 Post-op— Dr. E and the med students came for their rounds. He seemed very pleased with Colleen’s progress.

The doctor took off the wraps that were protecting her IVs so that he could examine them. The IV in her left hand had clotted off, so he said to take it out. He also said that the NG tube (in her nose) could come out later that afternoon. He talked to us a little more about her progress, leaving her hands unwrapped. I suppose he was going to let the nurse cover her hands back up after she removed the IV. Colleen, apparently, had other plans. Just as Dr. E turned to leave, Colleen used her left hand (that was not taped to an IV board) to pull the NG tube right out of her nose—faster than anyone could stop her! Dr. E took one look at her, laughed, and said, “Discontinue the NG.”

At that time, I was a consultant with a company that did at-home demonstrations. Before we scheduled the surgery, I had planned a product party with a friend. We didn’t think Colleen would be in the hospital quite this long, so I didn’t re-schedule it. I wish I had. Monday afternoon I had to go home to get ready for the party. We lived a little over an hour away from the Children’s Hospital, so we planned for me to go do the party and then spend the night at home with Judah. Hubby would stay with Colleen.

We had been told that once she pooped, she could have an ounce of Pedialyte for each of two feedings. If she kept those down, her next two feedings would be an ounce of mother’s milk or formula. If she kept those down, then she could eat whatever she wanted (within her baby diet).

Around suppertime, the doc said he wanted to let Colleen have a little Pedialyte. The doc decided that even though she hadn’t pooped yet, he thought she would do fine having a little drink. The nurse told Hubby that normally babies would have pooped by now and that sometimes a little drink will stimulate the GI tract. They were fully expecting that drinking one ounce of Pedialyte would make Colleen poop.

Hubby was armed and ready to do this on his own. (I was already at home.) He sat with Colleen in his lap and helped her drink from her sippy cup. She had only taken a drink or two when he thought maybe he should check her diaper. Sure enough, she had pooped! Not a ton, but he knew he should clean it off her skin right away. He had the diaper cream almost finished when she started pooping again! He had her almost cleaned up the second time, and she started pooping again! This process went on and on for 45 minutes! He was exhausted by the time it was over!

This was back in 1996—before cells phones were very common and long distance calls from the hospital were complicated. I also couldn’t call into the hospital after 9pm, so I would have to talk to Hubby in the morning. I spent the evening with Judah. We thoroughly enjoyed being together. He loved sleeping in his own bed with momma nearby, and I enjoyed it as well. However, we knew nothing of the wonderful events of the evening.

Tuesday morning, around 6 or 7 a.m., I phoned Hubby at the hospital. He told me the wonderful news that Colleen had pooped. He also told me that I should get back to the hospital quickly because she would be able to nurse later in the afternoon.

I dropped Judah off and drove to the hospital. When I arrived, the nurse had just taken out her last IV and said that she could nurse anytime. We were a happy pair! Colleen had not nursed for six and a half days. She was ready for momma. Before Colleen was even finished eating, the nurse came in and said that we could go home! 

 

Yes, she's wearing one of her brother's old outfits.

 

By that afternoon, we were all back home together. No diaper rash so far, but she hadn’t even been pooping for 24 hours yet.

W were all incredibly happy to be back together. Judah was thrilled to be back home, running circles around his little sister and telling story after story. Colleen was laughing, pulling up, and cruising around the furniture.

We were relieved to be finished with Hirschsprung’s Disease…

 

 

Next Chapter: But We Weren't Really Finished

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