Wednesday, February 27, 2013

First Dirty Diaper at 16 Months Old

As most of you know, Wendy had surgery last Thursday. It was the 3rd of a three step surgery to repair her imperforate anus. The first surgery was at 3 days old to have a colostomy placed. The second was at a year old to make an anus. Then the anal dilations (to stretch her newly made anus and work the muscles) began a month later and Thursday, at 16 and a half months old, she finally had her ostomy removed and on Sunday she had her first poopy diaper.

This was our second surgery at Children's Healthcare of Atlanta, Egelston. Wendy's first few surgeries were at Vanderbilt in Nashville because Zed was stationed at Fort Campbell, KY. If any of you have been following Wendy since the beginning of her journey, you will most likely know that I am not a fan of the hospitals in Atlanta and I prefer Vanderbilt, but I will say, this time was not as bad as the last time and the nurses were much more helpful and considerate. My mom and I stayed with Wendy every night and Zed stayed at a hotel nearby. Then after the doctors rounded Zed would come in and my mom and I would go sleep for the day. Wendy refuses to sleep in any bed but her own crib, so my mom and I had to take turns holding and rocking her all night. Zed's aunt, uncle, and cousin came in Saturday and Sunday to watch her for several hours. That was a huge help. Our biggest issue is that Wendy is very active and wants to crawl and play, however, the only place she could play was her crib and it was metal with no bumper pads.

By Sunday I was at my wits ends and more than ready to come home. I have extreme anxiety and even taking Ativan twice a day couldn't calm my nerves. My fears of hospitals were never that bad until recently. I'm not sure if the 5 weeks I spent on bed rest while pregnant triggered it or if Wendy's 71 day NICU stay did, but now, if I'm there more than a few hours, I start panicking and with a special needs child, sometimes hospitals are a necessity. It was around 5:00 when Zed sent me a picture of Wendy's first dirty diaper. I called and said I'm on my way, we are going home! It took us hours to get discharged and we didn't get home until 11:00pm, but I was so happy to be back in my home and have Wendy in her own crib. She went straight to sleep.

We are still getting back on our normal schedule (we thrive off schedules and I'm very OCD about keeping to our schedule) but things have been much easier at home. While Wendy was in the hospital she pulled out her g tube button (and the doctor panicked and acted like he was afraid to replace it; honestly, I told him I could put a new one in, I just didn't bring her extra one) and she got a yeast infection around her stoma site. I've been treating that and it's looking much better. Now we are battling the extreme diaper rash/yeast infections on her bottom that they warned us about. We started off using the calmoseptine they prescribed, however, it got bad very quickly so I switched to Nystatin. I am calling her pediatrician in the morning to see if she has any other recommendations. The surgeons warned us that sometimes when babies are born without anuses and have them made that the diaper rash can get so severe when they start pooping that you'll have to see wound management doctors. I'm hoping Wendy's doesn't get that bad. Luckily, we haven't had any issues with constipation like they anticipated and Wendy's incision is healing nicely and starting to drain less. We're still getting used to this whole dirty diaper thing, but I think we're getting the hang of it. Besides, it's nice to see my baby without a colostomy bag. We haven't seen that since she was 3 days old.

Tuesday, February 19, 2013

Wear That You Care, Blue Jean Thursday

Someone suggested to me that we all wear a certain color Thursday to show support for Wendy since she is having surgery. Blue jeans is the color for rare genetic disorders and I know everyone owns a pair. So break out your jeans Thursday, shirts, pants, jacket, whatever. Take a picture and share it on Wendy’s Facebook page,

Once we have a surgery time, we will also be have a moment for prayer. I know many of you pray for Wendy every day, but this way everyone can stop for a moment and send up good vibes for sweet Wen.

Saturday, February 16, 2013

Colostomy No More.

Last Wednesday we learned they are going ahead with her colostomy take down, soon. She will be having surgery next Thursday, Feb 21. I haven’t posted a blog about it because I’m really not sure how I feel about it. Yes, I’m excited, but of course, sending your baby into surgery is never easy. Especially considering how badly Wendy reacted after her last surgery, I’m nervous to say the least. Also, I’m trying not to get my hopes up because there is no guarantee her bowels will work properly. There’s always a chance she could have to have a colostomy placed again. There’s also the chance that she will either not be able to control her bowels at all, which means she will have constant diarrhea and we will have to change her diaper constantly. Or it could be the total opposite and she may be constipated and we may have to do enemas several times a day. We just don’t really know what to expect, which also is why I don’t know how to feel about it. I’m praying for the best and preparing for the worst.