Hirschprung’s Disease: Starting Solids, 8 Weeks Post Pull Through Surgery


1798884_10153231558074552_1188864451557339974_nThis Thursday we will officially be 8 weeks post op, living bag free and poopin up a storm. I thought I’d check in and give a little update on how things have been going.

Our first challenge, and continuing challenge, post op has been the battle of the diaper rash, specifically yeast rashes. When we went to our one month post op appointment, Dr. P asked me what my trick was because Jack’s bum looked so good. The trick, in my opinion, to diaper rash for sensitive skin is getting that skin as dry as possible before putting a new diaper on. We would use the hair dryer and then just hold a cloth diaper over Jack’s bum to get any excess moisture off of his bum before loading up with cream and ostomy powder. His butt looked great!

Then the game changed when we got the go ahead to start solids. Suddenly we got this little spots that would not go away no matter what I did. Yeast! Argh. We’ve been battling it ever since with Nystatin powder and Lotrimin cream. I can’t really give any advice on yeast rashes because we’re still working it out. But, what I can share is that it always looks better after a bath, so we do not skip bath nights, ever. Jack gets a good soak every night. We try to get his bum nice and dry and we’ve been switching between Nystatin and Lotrimin every diaper change. Right now, this minute, he’s looking good. I dare not speak too soon though, it is day by day.

Let’s see, what else…well, we were approved to start solids at our one month post op appointment. I found this resource online (Nutrition for Patients with Hirschsprung’s Disease) from Cincinati Children’s Colorectal Center to be incredibly helpful in choosing what foods to start with for Jack. We are doing the Baby Led Weaning approach and his first food was avocado. It took a little getting used to for him since he’s only ever had breast milk, but he LOVED trying out those two teeth he has had since 4 months old. The surgeon warned us to go slow, so we have been following the rules and slowly introducing new foods.

Jack making a mess eating oatmeal.
Jack making a mess eating oatmeal.

Last week we had quite an eventful Thursday afternoon when Jack had an apple for the second time and a little taste of yogurt for the first time. Well, for parents of any children, but especially Hirschprung’s children who are starting solids, might I suggest you make sure that you have children’s benedryl on hand and know the dose for your child’s weight before trying new foods (I did not). Long story short, after a scary visit to the ER, a week of back to breast milk and just avocado and oatmeal and a pretty comprehensive allergy test, Jack is allergic to dairy. We are now working on learning what that means for us and back to slowly trying new foods again. Food allergies do not correlate with Hirschprung’s Disease. However, the moral of the story is, what the allergy doctor said to us at our appointment: these babies have already been through so much in their short little life, we want to do everything we can to make sure they have no additional undue challenges. So, go slow on solids, obey the 3 days apart rule and have benedryl on hand in case of emergency.

Aside from all of that fun drama, I’ve started to pick up some work, which has been very nice. It is nice to work again and even nicer that I am working mostly from home. Jack has started a part time childcare program at a church in our neighborhood to give me a few hours to focus and get some things done. He loves it! Being around other children has been so good for him. I seriously feel like each week that he comes home, he’s extra interested in exploring the world around him. John and I made the decision during Jack’s time with his ostomy for me to stay home with him. It is such a relief to know that we can now leave him for a few hours with trusted family and his childcare and no longer worry about his bag.

Jack is also really into music and loves when his daddy plays the guitar for him. The beauty for daddy is, Jack doesn’t care if he gets the cords right, he’s just excited to bebop to the music.

Halloween is coming soon and we’re still debating over what Jack’s first Halloween costume will be, why does it feel like so much pressure?!?! (because mommy is Cr-AZY!) On another note, Jack is really enjoying his first Eagles season and had fun celebrating his Uncle Dennis’ Big 3-0 on Sunday and watching the game with his daddy and uncles.

 

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Happy Birthday Uncle Dennis! Photo Credit: Aunt Jess (Jessica Merkel Friel)

All in all, with a few little bumps in the road, Jack is doing really great 8 weeks post op and life without the bag is just awesome!

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