We are back at Nationwide. Hard to believe we are already on our 2nd surgery. I feel like time has flown by since we got Mayleigh. And been CRAZY busy!! It makes me physically and emotionally exhausted when I think back to the last 9 months of our lives. Yep, just a few days ago was 9 months from the day we met M. (not quite to the day we got home and started this craziness) So in just under 9 months, we have been to the hospital or ER 11 times, put our house on the market, spent many weekends back and forth to Chicago looking for a house, moved, surgery #1, and got the kids adjusted in school, lasty, back for surgery #2! Seriously, exhausting! But the great news is that we are still alive and doing well!! Really well. I can't believe how well all that has gone. Had you told me that would be my future while we were looking at Mayleigh's file, she would most definitely not be here with us today. So thankful again that God gave me just a little bit at a time!
Mayleigh's surgery went really well. Dr. Levitt said that everything looked great, reconstruction wise. There are still a lot of unknowns for her future but at least everything is in the right place and in Dr Levitts words, "for having chloaca and imperforate anus, she looks basically normal." We can't ask for better than that!! This surgery has been so much easier on her body. She just has the stitches were he took down her colostomy. She is not as sore and she was up moving very quickly after surgery. She is back to her fun, happy self and is recovery very well!! That is making this hospital visit so much easier than the last one!! We are up playing, going to the gift shop, laughing, talking and at least happy most of the day!! This was for sure the easier surgery to have the boys with all week. I was a little nervous the first day with all 6 of us but it is going really well. When M was taken back for surgery, I met up with the boys to eat lunch. They were so concerned with where she was. Chase said, she is at surgery by herself?? And they kept saying they missed her and couldn't wait to see her. Chase was saying it the most...which really warmed my heart. M and Chase probably get a long the least out of the 3 boys. And if you know Chase, he is just so laid back and not concerned with much. So to hear him talk about M this way was so sweet.
So here we are 2 days post op and she pooped tonight! That is what we wait on for days and is the only thing that gets you out with these kiddos! I have to say it is very weird that she is pooping from her bottom. I know I have 3 kids who do this but the only way I have known M is from a colostomy. Its just weird. So now the poop starts and with their bodies it doesn't stop for about 4 weeks from what I am told. They go pretty much constantly. (insert a deep breath) :) Then Dr. Levitt said they go from pooping all the time to constipated. The issue is diaper rash. These kiddos get it pretty bad. I have already been talking with my FB group about what are the best creams to help. So thankful to this awesome group!!! Once we get to the constipated part we will begin her laxatives. The key is finding the right mix for her to produce one to two bowel movements a day. From what I have heard, this can be tricky. We are hoping this will work for her. If laxatives aren't working and she is still having a lot of poop throughout the day, we may go to the nightly enema. This will keep her clean for 24 hours. We will have to just wait and see what works best for her.
With her urinating we are still trying to figure that out. The catheter in her urethra is gone but the suprapubic tube is still in. (attached to her bladder) Today they clamped the tube and are watching how she pees through the urethra. After 3 hours they weigh the diaper and unclamp the tube and check how much is draining from the tube. So far we have had two rounds of this and both were 60 cc's from the diaper and 90 from the tube. So not great. The nurses are telling me this could take awhile to train her body so we shouldn't lose hope yet. I am anxious to talk to the doctors tomorrow about the plan.
Sorry I have no pictures for tonight but I am ready for bed. I will post pictures tomorrow! (for those of you who are not on FB and haven't seen pics) :)
