First Dirty Diaper at 16 Months Old

Wendy’s Facebook Page

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.

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, www.facebook.com/BabyWendysJourney.

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.

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.

Raising Money for Ronald McDonald House Charities

As most of you know, Zed and I stayed at the Ronald McDonald House the last 6 weeks Wendy was hospitalized. Since Wendy was born Zed and I said we want to donate money to a good organization every year. Last year, I raised over $1,500 for March of Dimes. This year I want to give back to RMHC. I’m going to raise money until March 30 and then sometime in April, I want to get a group of people together and we can all go to the RMH in Atlanta and cook for them and help out for the day. (We can all wear our tie dye Wendy shirts!)

I added a donate button on the right side of the page if you would like to make a contribution. I am in the process of making a webpage for donations, but in the meantime, the donate button can be used, as well as PayPal (wendys.mom7.10@gmail.com).

For those of you wanting to order shirts, here’s the website:

http://www.customink.com/signup/285kcnma

Please feel free to share this blog with all of your friends. I hope to raise $1,000 in honor of Wendy to donate. Every little bit helps and the Ronald McDonald House Charities is a wonderful organization. 

GI Doc.

This morning Wendy went to see Dr. Pilzer, her GI specialist. The test results from the pH probe were back and even though Wendy wasn’t vomiting that day it was clear that she had quite a bit of reflux, but not enough for a GJ tube or fundoplication. She is going some days vomiting only once or twice, and other days she may vomit every feed. We’re still not sure if it’s from the reflux, or one of these horrible viruses that have been circulating.


So for now, we continue with the medicine (Prevacid and Bethanechol). We are also moving from 26cal Neocate to 30cal Neocate and every other feed we are going to mix in a tablespoon of baby food. If she tolerates the tablespoon of baby food every other feed, then we’ll move to every feed, then to 2 tablespoons. We are just working on getting her a more diverse diet. We are also needing to help her gain more weight. Tiny princess weighed only 13lbs 13oz today (from 14lbs 4oz at her heaviest before the vomiting). 7oz may not seem that significant, but for Wendy it is; it takes her about a month to gain half a pound so it’s going to take some work to get her caught back up to where she was.


All of these notes were sent to Dr. Wulkan, Wendy’s surgeon, who we see on January 30. On January 30, we hope to schedule her colostomy reversal for sometime in February. While she is in the hospital for her surgery, we are to have another suck swallow study done. Dr. Pilzer said NPO until after the suck swallow study because her eating by mouth is not worth risking a bad choking spell, especially with all the vomiting she’s had lately. But if she passes the suck swallow study, we should begin feeding therapy sometime in February. We’re beginning to wonder if Wendy has a sub mucous cleft palate. Another child with a similar chromosome deletion to Wendy’s had one and that’s why it took her longer to learn to eat. Since they’re not always easy to detect, sometimes it can go unnoticed, but once we start feedings by mouth, we are definitely going to have it checked.


It’s a lot going on at the moment, so we just take each thing one at a time. First getting her to tolerate higher cal feeds, then the reversal surgery, then the swallow study, and finally the feeding therapy. Also, as soon as Wendy gets approved for Medicaid through the KB waiver (I pray she does get approved) we will begin physical therapy as well. Right now, Babies Can’t Wait doesn’t have a therapist that can work with her and no where around here accepts TriCare. Which, of course, as sick as Wendy has been lately therapy is about the last thing we could concentrate on. Oh, and once all of that is done, we need to have her kidneys checked again to see if she still has kidney reflux because if it’s corrected itself, then we can take her off the Bactrim and I’d be happy to see her on one less medication.


I hope I didn’t leave anything out. My brain has been in a bit of a whirlwind, so if I remember anything else I will add on later! As always, please keep my sweet girl in your prayers :)

Cold, Virus, Reflux? I just want ANSWERS!

I have been so busy that I haven't had a chance to update sweet Wen's blog lately. I just want to do a little recap on what's been going on with her.

It all started back in November, with what I thought was a cold. She had a runny nose and when she vomited it was a thick, foamy mucus. I attributed the vomiting to sinus drainage, and didn't think much of it. A few days later she had a low grade fever and was coughing/sneezing and still vomiting, all of which I assumed was part of the cold that I thought she had. The fever went away, but all of the other symptoms continued through the end of November. Also, on November 30, I noticed she had a yeast infection around her stoma, which is not uncommon with a compromised immune system as well as her being on antibiotics daily.

On December 3 Wendy began vomiting every feed. She had no fever and no cough. She could keep down Pedialyte. After seeing her pediatrician on the 5th, we switched to a soy formula thinking it could possibly be a milk allergy, or a virus that triggered a temporary milk allergy. All the mucus she had went away however the vomiting did not stop or slow down. Many times with a milk allergy, children can also be allergic to soy, so on December 10, we switched to Neocate.

December 19 we saw Dr. Pilzer, a gastrointerologist. She suspected reflux, since Wendy had previously been diagnosed with it as an infant, so we switched the Pepcid to Prevacid and was told to add Bethanechol in 3 days if the Prevacid alone wasn't enough, which we had to do. Within the next few weeks, Wendy had some days she vomited constantly, and some days she didn't vomit but once or twice or sometimes not at all. December 31 we stopped all medication for reflux.

January 4 was Wendy's pH probe study. We went to Scottish Rite (which can I say, the experience there was a million times better then Egelston, so I will be requesting to go to SR for her next surgery; of course even SR was not close to Vanderbilt, but it sucked much less than the crappy care we received at Egelston). They put the probe in her nose, took an x-ray to make sure it was in the proper place, then sent us on our way. I had a journal that I had to keep which said when she was sitting up, laying down, when she cried, when she vomited (which of course she went the full 24 hours with no vomiting), etc. I took the probe out the next morning when the recorder said it was stopped.

The next night at 2:00am she began vomiting profusely. She vomited every single thing I gave her, even Pedialyte, which is not normal. Her ostomy output had turned light green/yellow and water-like. (Everyone we had been around caught this mess within a day or two, so everyone was really sick.) The next day, she didn't vomit at all. She did really well and didn't vomit much (maybe once a day) until January 10. The 10th and 11th were rough. But for the last few days she's been doing better. Her ostomy output is still runny and not it's normal color. I'm wondering if her tiny body is still trying to fight off that awful virus.

We see Dr. Pilzer on Wednesday. I have had some parents suggest a blended diet, so that's going to be something we discuss. We'll also talk about the test results and whether a GJ or fund is needed. I really don't want to resort to either of those, but I want a solution because there is obviously a problem. The suck swallow study is another thing I am going to push for because Wendy wants to eat. I will try to update again on Wednesday after we see her GI specialist.

It's been a tough few weeks, but we'll get through. We always do. This is just another unexpected bump in the road, one of many I'm sure we'll face.

Still Fighting the Vomiting.

For those of you who follow me on Facebook know that we are stilling battling the vomiting. The Prevacid and Bethanechol didn't work. The PH probe is scheduled for Jan 4. I'm not sure if we'll do the whole study in the hospital or if we will be coming home with the probe in her nose. We have to be at Scottish Rite at 8:30 Friday morning. I'm just ready to get this figured out so we can continue to move forward. I knew when I had Wendy that life would consist of constant battles for her health and I'm okay with that, but still as her mother, I can't stand seeing her vomit up everything I put in her tube and her losing weight (she's right at 14lbs now, which means she's lost about 4oz total, but that's a couple weeks worth of gaining for her).  However, on a brighter note, Wendy had a wonderful second Christmas. It completely wore me out dragging Wen here, there, and everywhere, but she had fun. I hope everyone had a great holiday too and I will update as soon as there is some change or after Wendy's probe study.