Friday, November 30, 2012

Quick Update

I haven't been posting much lately. Honestly, when things are going okay, it makes for a pretty boring blog. For those of you that follow us on Facebook know that Wen has been sick with a cold/sinuses and she had a yeast infection around her stoma. The cold we are still fighting, doing saline irrigations, suctioning her nose as needed, and Vicks baby run as well as a vaporizer and lots of Pedialyte to hydrate. The yeast infection is pretty much gone, but it was difficult. Being under the colostomy bag, we couldn't use her normal Nystatin cream. Instead, I did a mild vinegar wash (apple cider vinegar and water) every few days and I used Desenex anti fungal powder. It looks like it may have spread to around her g tube, but that I can handle with Nystatin. Her anal dilations are still going okay. We are up to 9mm but I can tell its painful. It breaks my heart, but I have to be strong for her. We go back Wednesday to see her surgeon and hopefully schedule the next surgery. We would greatly appreciate continued prayers as we continue on this journey.

Wednesday, November 21, 2012

Sleep Deprived Mama

My darling Wendy is still sick; low grade fever, excessively snotty nose, sneezing/coughing, spitting up foamy mucus, the works. All of this on top of her first yeast infection around her stoma. I'm not very concerned because her fever isn't reaching over 100.5 and the congestion is not in her chest. The biggest problem is Wendy's breathing. I have to keep her nasal passages clear in order for her to breath and it's easy for this thick, sticky mucus to clog her itty bitty nose. I've been using saline and suctioning her as needed, but not too often because suctioning can irritate the nasal passages and cause them to swell, which again would worsen her ability to breathe. And of course, while i was rushing to get her out of the crib to auck her nose because she was blowing out a ton of snot, I accidentally pulled her g tube button out. It didn't bust the bubble and luckily I'm a pro at changing buttons, so I sucked her quickly and put the button right back in. I'm also using Vick's baby rub and that seems to help some. As for the yeast infection around her stoma, I am treating with nystatin cream and powder, and I'm taping her colostomy all the way around so it will stay on. Obviously any sort of cream is going to make the bag not stick as well, but we'd much rather have a leaky bag than an infected stoma. I am honestly surprised we went a year without getting one sooner, simply because Wendy is on antibiotics daily. This has been the 3rd night I have barely gotten any sleep. I have too much to do to miss out on sleep right now. I will try to give everyone an update on sweet Wen later.

Monday, November 19, 2012

Munchkin is Sick :/

A few hours ago, I heard Wen coughing and crying on the monitor. When I came in her room I noticed she had a super snotty nose. I suctioned her and chaned her diaper. By the time her diaper was changed, her nose was stuffy again. And when she cried she started coughing and threw up thick foamy mucus. Now I have her sitting upright. I'm using saling drops in each nostril and I have baby rub on her chest. So far it's helping some. But I'm afraid to go back to sleep. I don't want to lay her back down because the mucus is so thick I'm scared she'll choke on it. I was planning on cleaning the house today, but it can wait. The house will still be here tomorrow, and taking good care of Wendy is more important.

Thursday, November 15, 2012

Wendy’s First Birthday Party

You’ve probably noticed that I have posted NOTHING about Wendy’s First Birthday! That’s because I was waiting on the pictures, of course!

 I spent months planning! And here is some of the decor.

Wendy has a blast opening gifts!

And eating CAKE!

I just want to thank everyone who came and helped make this day special for our special girl!

Tuesday, November 6, 2012

To Bank or Not To Bank… Cord Blood, that is.

The first time we went to Maternal Fetal Group in Nashville is a day that I will never forget. It is stuck in my head, like a bad dream, and every time you try to go back to sleep, it replays in your mind. I honestly thought we would go there, get a cool sonogram picture and be told there was nothing wrong and nothing to worry about and I would continue my pregnancy care at BACH. But obviously that’s not what happened.

When we were told about the CPC’s in Wendy’s brain, I wasn’t too concerned. They are fairly common findings in ultrasounds and usually disappear on their own, causing no problem with the baby. Very rarely are they a marker for something more serious. I had an ultrasound at 22 weeks at BACH on a Tuesday. I had an appointment that Thursday to see the midwife, just a routine check up. They did everything they normally did at my appointment on Thursday, but when we got ready to leave, the midwife said, “They found something in the ultrasound.” She explained about CPC’s and gave us a print out on them. She said we could repeat the ultrasound at BACH or we could go to a specialist in Nashville. Zed wanted to see a specialist. The midwife kept assuring me that it was nothing to worry about and she would see me at my next appointment. As we left BACH, I wasn’t worried. I assumed that since they waited 2 days to tell me, instead of as soon as the ultrasound was done, that it honestly was common and nothing to be concerned about.

I got home and did what every mother would do. I googled it. And I looked up the specialists we would be seeing. Reading about the cysts on the internet was comforting and frightening. Some websites calmed my fears and others added fuel to the fire. Luckily, Maternal Fetal Group made and appointment with me the very next week.

When we pulled up, we saw they valeted your car for you. This of course was an issue for us because Zed was toting a gun and didn’t want to leave it in the car but didn’t want to take it in either because he didn’t have his carry permit at the time. I remember thinking what a cool place it was and wishing I was going to a nice office like that instead of the hospital on post.

I filled out paperwork and went back for an ultrasound. The tech was really nice and made me feel comfortable. After that is when I met Dr. Mayor-Lynn for the first time. She asked us to come into her office after she had looked over the scans and then came in and done a quick ultrasound for herself. She told us the CPC’s were still present but what worried her most was Wendy’s heart. She saw a build up of fluid around it. She drew us pictures, explained that if it was a genetic anomaly that it was most likely Trisomy 13 and that it was kind of late in the pregnancy to have an abortion if something did come back abnormal, if we even wanted further testing at all. Before we had gone, I told Zed I did not want an amniocentesis, that it carried too much risk, but once we were sitting in that office, I knew my choice would affect my child’s care. We had the amnio because if we had not, we would have went back to BACH and Wendy’s abnormalities would not have been noted until after birth and then she would have had to go through all the genetic testing on her tiny body and the thought of her having spinal taps and continuous testings at such a young age makes me cringe. Dr. Mayor-Lynn said she preformed amnios all the time and was skilled at doing so. I think Zed was more scared than I was. I was sore afterward but it wasn’t a huge deal.

Fast forward to the next Monday…. Zed was calling constantly to see if the FISH results were in. That’s preliminary testing that checks the most common chromosomes for abnormalities and usually if the FISH results are normal, then everything is fine. Wendy’s FISH results were fine, so we didn’t worry about it anymore. Then came our next appointment at MFG and they said something was wrong but they didn’t know what. All they knew was that it was her 7th chromosome and more testing needed to be done.

If you google problems with the 7th chromosome, one of the first things you see is the word leukemia. When I thought of leukemia, I immediately mentioned cord blood banking to Zed, because that’s one of the main things they advertise. However, after researching, I found there are many diseases treatable by the stem cells in the cord blood.  Treatable Diseases  We also banked Wendy’s cord tissue. This is a less known process, but with the technology out there today and with Wendy having a genetic issue, we figured it couldn’t hurt to save it.  What is cord tissue?

Some people say this was a waste of money. (Yes, it cost a little over $3,000 for the initial collection, transportation, and first year of banking and it costs $275 a year.) However, people have also disagreed with me about other things, such as giving Wendy medication daily. But what these people who disagree and says it doesn’t work don’t understand is the fact that doctors and medicine have saved my baby’s life. We would much rather have it and never need it, than need it and not have it. People with “healthy” children tend to not understand, but almost every special needs parent I have talked to, said they desperately wish they had done it.

Monday, November 5, 2012

Vaccinations? Exposure? Prevention for the future?

When Zed and I found out Wendy was sick, we blamed neither of ourselves. We had done everything as parents to care for our darling growing fetus. But now that I am having to fight for her to get Medicaid we are looking into what could have actually caused this rare abnormality in our perfect daughter.

First of all, let’s take a look at a list of what vaccines soldiers are required to have before deployment. Vaccines

Now let’s look at what exactly is in those vaccines.

While Zed was in Afghanistan, these are some of the things he could have been or was exposed to.

Currently the VA is only recognizing Vietnam and Korea when it comes to veteran’s children’s birth defects. But I have seen and spoke to many who had healthy children before a recent deployment and then after that deployment, they have a special needs child.

I’m not saying it was definitely the vaccines. I’m not saying it was definitely something Zed was exposed to in Afghanistan.  I do, however, think it should be looked into much, much further.

Our reality is, we have no idea why Wendy is the way she is. We have no idea how she will be in the years to come. And I’m okay with that. I’m not saying all vaccinations are bad. Wendy has had all of her shots that her pediatrician has recommended. I’m definitely not one of those mother’s who think that the MMR vaccine causes autism. I’m sure some children have reactions to vaccines just like I react badly to penicillin. I’m just saying that some of these extreme vaccines may not be as safe as the CDC makes them out to be.