This is the next chapter in our long struggle with sick babies and Hirschsprung's Disease. Of course, the story began over 17 years ago. If you are just tuning in, you may want to start at the beginning.
Previous Chapter: One Last Thing
I felt so much better having Baby Sean back at home. Now I could get Colleen and Judah back into our family’s routine, and they could be with their baby brother.
We had an appointment to take Sean in for a follow-up with Dr. E in two and a half weeks. However, I felt concerned about his weight gain. My milk supply had gotten so low while he was sick, and he was so tiny. I wanted to make sure that we were moving in the right direction, so I took him in to our family doctor’s office for a weight check.
5 pounds, 15 ounces. Down 3 ounces.
Worry tried to set in. I tried to talk myself down. It was only a few ounces, he had had a rough start, and he was otherwise healthy… I tried to stop worrying. But somehow, I worried more about tiny Sean than I had the other two as babies—even more than Colleen when she had her surgeries.
Another week passed, and it was time for Sean’s one month old well-check. He looked healthy and right where he should be developmentally. He weighed in at 6 pounds, 6 ounces– a gain of 7 ounces in the last week, and 4 ounces heavier than he had been when he came home from the hospital. Plus, he had grown an inch since birth. I was beginning to feel a bit better.
A couple of days later, we went for Sean’s follow-up with Dr. E. Sean was up to 6 pounds, 8 ounces. He was only 4 ounces away from reaching his birth weight again, and I was beginning to feel less worried. Dr. E said that Sean’s weight gain was not as much as he would have liked but that he wasn’t worried about him. We were told to come back in one month for another appointment. He was guessing that his pull-thru (reconstructive surgery) would probably be in about 3 months.
The next months consisted of enjoying our Baby Sean and all the sweet milestones and moments that come with having an infant in the house. There were first smiles and coos, learning to swat at toys, figuring out how to grasp a rattle and shake it, and first laughs. There were many laughs with Sean and his older brother and sister. He loved watching them, and they loved making him laugh!
Hirschsprung’s Disease and a colostomy were not holding Sean back. He was gaining weight well and had grown strong and healthy. I stayed worried about his weight gain until he was two months old. At that point, he had gained almost a pound and a half in two weeks. That’s when I finally stopped worrying!
We had Sean’s next check up with Dr. E when he was just over two months old. This time Dr. E was pleased with Sean’s weight gain and was satisfied that he was doing well with the colostomy. He told us to come back in November and that we would likely schedule surgery at that appointment. We were beyond hopeful that Sean’s last surgery could possibly take place by the end of the year.
Life with a four year old, a two year old who was still in diapers, and a baby with a colostomy had its challenges. A simple outing felt like were going away for a weekend, simply due to the size of the diaper bag! We always had to be certain that we had at least two changes of clothing for the baby and several spare colostomy bags, along with the supplies needed to change it should it come off while we were away from home. This list included scissors, stomahesive paste, skin prep wipes, stomahesive powder, ink pen, stoma template, wet washcloth in a ziplock bag, extra ziplocks for disposing of the old ostomy bag (to spare others the stink— because they stink worse than the worst dirty diaper), and more ziplocks for dirty clothing in case of an ostomy blow out. We didn’t want to stay at home for the duration of the colostomy, and so we braved the outings with the giant diaper bag.
Sean’s ostomy was also especially difficult. Since Sean’s colon was affected by the Hirschsprung’s farther up than the doctors had anticipated, his colon barely reached the incision the doc had already made for the ostomy. Basically, this meant that the hole where the poop would come out was very flat against his skin. When the poop went into the bag, it was right against the spot where his bag attached to his skin (they’re like a big sticker). The poop would break the seal of the adhesive very easily, which would mean that we would have to change the bag. If you don’t, then poop is on the baby’s skin and he would get diaper rash under the adhesive where you then had to stick another bag on. It is as bad as it sounds. We had already experimented with several styles of ostomy bags to find one that would stay on for a few days. It was still a challenge to keep Sean’s skin healthy under the bag.
We were ready to get rid of this ostomy. November could not arrive fast enough.
Finally the day came for our appointment with Dr. E. He said the words we were hoping to hear— at 4 months old and almost 14 pounds, Sean was ready for his pull-thru surgery. The date was set for December 3rd.
We were filled with anticipation. We were expecting much from God.
We knew what was coming after the surgery and how difficult it would be, but we were expecting normalcy on the other side.
Next Chapter: On the Brink of Surgery
Come back next Sunday for the next chapter of our story. If you would like to be sure that you don't miss it, subscribe here, and I'll send it straight to your inbox!