We're home, at we couldn't be happier... or busier! This journey we call Hirschsprung's is long from over, but we're up for the challenge. So this is how it has been being home.
We got home, and it was like bringing him home from the NICU all over again! I had him dressed up real cute, and held him close to me as we walked through the door. This time around we couldn't give him a bath right when we got home, because he had steri strips on his incisions. We thought we would be able to get some rest and relax now that we were home, but who were we kidding? You never get to relax with a baby!
Mr. Micah was super fussy for many days, and he didn't want to play. He was, and is, still healing from surgery and all he wanted to do was be held and sung to. This included all hours of the night, by the way. Also, it wasn't very long before he developed a bleeding diaper rash, and although we had been warned and prepared that it would happen I felt terrible. No matter how quickly I change his diaper, or what I put on it it is still there. I feel like a bad mother a lot of times when I look at it. I feel like I'm not doing a good enough job and that I shouldn't have let this happen. The truth, though, is that I didn't 'let it happen'. I don't let it sit on his bum, no matter what time it is. I check him frequently throughout the day. I use the recommended creams, and I keep it dry. I do everything the doctors have said to do, and I'm still at a loss with it. I would be interested to hear of anybody else's experience with this and what they did? If you have any suggestions please comment below.
It also wasn't long before sweet Micah developed Enterocolitis. He suddenly stopped eating well, and he wasn't having very many bowel movements. What he was having had absolutely no solidity to it and smelled bad. Like... really bad. He had a slight fever, so I knew that we would have to take him to the surgeons the next day. When we took him they sent us for blood work and x-rays, and nothing came up. Just to be safe, though, they tested his bum with their finger. Blood came out, which is a sign of infection. So when the doctor came in he decided to give Micah an irrigation with a catheter and saline, and the results made him diagnose Micah with Enterocolitis... again. This is his third time, and he's only five months old! We've irrigated him most of his life, pre-op and now post-op. We've also treated him with probiotics for much of that time. The doctors have said that it's nothing we're doing, and that there isn't anything more that we could be doing. I feel helpless, and those of you who know me know that I hate being out of control. I want to help my baby be as healthy as he can, and these infections are really very scary. The doctors told us that it's a good thing we caught it so early, otherwise this one could have been real serious.
So I'm reaching out to the community - anybody who reads my blog and may have a baby with Hirschsprung's. Is there more I could be doing?
Also, anybody with any questions, Micah related, Hirschsprung's, or about myself or our life - please ask. My next post will include answers to them. I get private messages on FB a lot asking questions and maybe it would do more good to answer some of them on here so that other baby mammas who are struggling with the same things can get answers. Or just to answer to your curiosity. I don't really care, ask away.
Thank you, all of you who read this.
This is my first time reading your blog but I'll definitely read it more, now that I found you! I'm on BBC but rarely post b/c I have to keep up w/everything (I teach 2nd gr., have a 2.5 yo, & my 4 month old son w/DS, AV canal heart defect, hypothyroidism, & Hirshsprung's).
ReplyDeleteSorry I don't have advice because we haven't had the pull through yet. It'll most likely be early Nov. His is later BC he just had OHS July 9.
Luckily we haven't had issues w/Hirshsprung's besides the beg. & learning the colostomy bag.
I know you're in the beg stages of post surgery but I'm wondering how long I should take off work for the pull through. I was thinking 2 weeks (my mom stays home w/our 2 boys)
Thanks for sharing your story!
Also figure I'd add what the Ostomy nurse just had us do when some of Easton's skin got pulled off w/a bag change (although I'm sure you've been given multiple ideas, just figured you never know if you've tried this!) . we put stoma powder & a thick medicated cream over that to create a hard like cover over the skin. Granted I don't know how it is when they're peeing & pooping on it. I hope you're able to find comfort for Micah soon.
ReplyDeleteThis is my worst fear-post pull through surgery. We dealt with a 6 week NICU stay, heart failure, & open heart surgery but the recovery from this surgery scares me the most, I guess because I know just because having the surgery doesn't mean his HD will be 100% fixed. (Sorry for the long posts!)
Hey girl so if he still has that diaper rash I could make up a diaper cream I used for Andromeda using essential oils and bring it over also I'm not sure about using them for the exact disease he has but I know quite a few that are great for the digestive system and could get you some of those!!!
ReplyDeleteHello Shalee! Although I don't have experience with enterocolitis, I can tell you that I felt the same with regards to the diaper rashes.
ReplyDeleteMy advice is iLEX. If you have already tried it and it didn't work, let me just ask you: how long have you tried? Because my first run with iLEX was for less than half a day, no improvement, and I gave up. The rash got worst, and I did a lot of research on the best way to use iLEX and gave it another try, promissing to myself that I would try it for 2 whole days. And it worked, and this is what I recommend to other moms I meet thru my blog. It is not easy, it is messy, it doesn't look good because the poo sticks to the ilex and you can't remove everything, so you apply clean an fresh ilex over a poo colored ilex. But it works. If you have questions, I'm on the BabyCenter HD Community as claudiaramos.