Our Sick Babies Story:: Another Waiting Game

This is the next chapter in our long struggle with sick babies. 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 Waiting


It was time for Colleen to finally have her reconstructive surgery. It was a day we had longed for. The difficult part of Hirschsprung’s Disease would be behind us.

Looking back (with 16 years perspective), life with a baby who had a colostomy was really not so horrible.

There were difficult things about caring for a baby with a colostomy. There were the times when she would reach down with curious hands and pull the colostomy bag right off. There were the times when it was so humid that we could not get the bag to stick to her skin. The yeast rashes on her skin where the bag was supposed to stick on were challenging. The diaper bag was definitely more full when we needed to include a whole kit of supplies to change the bag if it came off~ quart-size zipper bag filled with a new bag, scissors, pen, template, wet wash cloth (in its own baggie), skin prep wipes, stomahesive powder, and an empty zipper bag for concealing the smell of the bag we had to throw away in someone’s bathroom. (Zipper bags were our best friend!)

Along with the difficult things, there were also some positive aspects of a baby with a colostomy. First off, we didn’t have to change dirty diapers! There were only wet ones. It was also a source of entertainment once we started solid foods. For instance, we had lots of funny moments when trying to figure out how to empty the contents of the bag when there were so many fragments of solid food in there. Do we lean her over the potty and try to open and dump it there while she wiggles? Or do we try to suck it all out with a really fat syringe? A little gross, but entertainment, nonetheless!

There were also the entertaining moments when we got to see all the little things that Colleen had found in the carpet and managed to get into her mouth without being caught. Any mom will tell you stories of finding bits of things from the floor in her baby’s diaper, but this was like an extreme version of that experience. Nothing could be disguised in the poop—we were too up-close-and-personal. The best one was the foil that we found shining through the muck in her bag. We figured it was most of a silver, foil gum wrapper!

At the time, I didn’t really see positives of my baby having a colostomy. I was ready to put this stage behind us.

To prepare for surgery, Colleen was on a clear liquid diet for two days. Yes, I had a ten month old baby who was still nursing two times a day who could only have clear liquids for Two. Days. I expected a very grumpy baby. But Colleen, whose name (real name, as opposed to blog pseudonym) means “fragrance of joy,” was true to her name. She took it all in stride. She did not fuss when she couldn’t nurse. She happily ate her Jell-o and drank her Pedialyte. In fact, by the time Surgery Day arrived she had a red hand from all the red and orange Jell-o she had eaten!

We had explained to two year-old Judah that we were taking Colleen to the hospital. The doctor would put her “new pooper” back inside and give her “old pooper” back. When we dropped him off at Nana’s (my mom’s) house, he wanted to pray for Colleen before we left. His simple, yet powerful prayer melted my heart. “Colleen Joy—Joy be down in your heart.”

We reluctantly left Judah, and the next morning very early we left for the hospital and the life-changing surgery. We left our home around 4:45 a.m. in order to check in at the children’s hospital by 6 a.m. We had a 10 month-old baby who had only had clear liquids for two days, who we had just awakened much too early in the morning, and what do you think she was doing? Happily playing and cruising around the exam room! “The fragrance of joy…”

At 7:50 a.m., the nurse took Colleen back for surgery. Hubby’s parents and our pastor came to be with us during the surgery. It was such a blessing to have them there with us. Just before the surgery was over, my mom arrived with Judah. Surgery was over around 1 p.m. We got to see her in Recovery about 30 minutes later.

Before too long, Colleen was moved to her hospital room. Judah kept asking for her so we let him see her for just a minute before he left.

Colleen was groggy and in a lot of pain. She had an IV in each hand. Her eyes were puffy from the anesthesia. It was a long night. We were in a room with 3 other babies. When one of the other babies would cry, it would disturb Colleen. She was in lots of pain. They were giving her two different medicines for pain. If they were late with a med, she would fuss and cry. Singing to her really helped, but she was still uneasy most of the night. I was hoping that the next day would be much better.

We really didn’t know how long she would be in such pain. All we knew was that we needed to wait until her GI tract started to work before we could even think of going home and that they told us her bottom would get really red and painful after she could poop.

We were now in a waiting game—

waiting for healing to happen so that pain would begin to ease. ..

waiting for poop to happen so that she could eat…

and waiting to see how red and painful her bottom would get.



Next Chapter: The Fragrance of Joy
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