Sunday, December 30, 2012

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.

Wednesday, December 19, 2012


First off I want to say thanks for all the prayers and concern for Wendy! I wanted to get in a quick update for everyone. Also, for everyone that isn’t used to the feeding tube/medical lingo, I’ll try to add a link or explaination for all the weird terms I may use.

Dr. Pilzer (who is super nice, btw) fit Wendy in today, thanks to another mom telling her about Wendy. (Huge shout out to Ashley McGee for helping us out big time today! As Dr. Pilzer said, sometimes it’s not what you know but who you know.) Her first suspicion for the vomiting is reflux, since Wendy was diagnosed with it at just a few days old. Our first attempt to fix it will be switching from Pepcid to Prevacid. If in 3 days the vomiting is no better, we will add Bethanecol to her list of medicine as well. If Wendy is still vomiting next week, she will have a PH probe study. We are planning on doing that between December 31 and January 2, which also means we will be canceling our surgery appointment. (I’ll touch more on that later.) If the PH probe study comes back showing Wendy has severe reflux and that is indeed what is causing all of her vomiting, she could possibly need a GJ button in place of her G tube button or she could have to have a fundoplication.

GJ stands for gastronomy-jejunostomy. It’s a tube that’s placed in through the stomach (where her current button is) and extends through her stomach into the jejunum (small intestine).  I’m not exactly sure if/how her intestinal malrotation will effect this, but I suppose we’ll deal with it, if/when it becomes an issue. This also means, if Wendy can only survive with the food being put in her intestines that she will never eat anything by mouth.

The fundoplication is a surgical procedure that is used when medical therapy fails.  In a fundoplication, the gastric fundus (upper part) of the stomach is wrapped around the lower end of the esophagus and stitched in place, which reinforces the closing function of the lower esophageal sphincter. If a fundo is needed, it will have to be done prior to her having her final surgery of removing the colostomy. Dr. Pilzer also said, before we remove the colostomy, we need to get Wendy on a diet of a lower calorie formula and see if her muscle tone improves. She said with a child with low muscle tone and high calorie formula (which already can cause constipation) can cause severe, life-threatening constipation once the ostomy has been reversed, which often results in them placing a colostomy again. So for now, the ostomy reversal is being put on hold (since it’s not a life or death situation right now) and her keeping her food down is.

With all that being said, Dr. Pilzer was not at all concerned about Wendy still being on formula or her small size (which those were two things I was concerned about with taking her to a gastroenterologist). She said children with other common chromosome abnormalities have their own growth chart, so we are just having to make our own chart for Wendy, since her anomaly is one of a kind. She also said Wendy was not considered a “failure to thrive” because she is proportionate, growing at a steady rate, and she has baby fat rolls. Dr. Pilzer said Wendy is just considered extremely short statured.

All in all, I’m not wanting to have to go to the extremes of having another surgery, and I am hoping that the Prevacid (and if needed the Bethanacol) will fix the problem. However, I am very happy we got Wendy seen about today and I feel much better since we are working to figure out and fix this issue.

Friday, December 7, 2012

A Beautiful Boy, Taken Too Soon

Nathan’s Facebook Page: Pray For Nate

No parent should have to bury their child. It’s unfair; it’s heartbreaking; and even though I never met Nathan in person, he and his story have made a difference in my life.

When Wendy had her surgery this past October and I was at my breaking point, I saw a status update about sweet Nathan, and I remember thinking that there was no way I could continue to feel sorry for myself because Wendy was not facing anything life-threatening. This was the update: “The official update on Nathan: He has aspiration pneumonia. We were faced with intubation, hospital stay and possibly never being extubated since his neurological state is so fragile or... we go home we treat it the best we can with breathing treatments, antibiotics, and prayer. I at first opted for the first choice, but when it came time to intubate him, I couldn't let them do it knowing he may never get that tube pulled out. I couldn't bring myself to let him spend the rest of his life with a tube down his throat just because I wasn't ready to let go, so we have decided to give it to God. His seizures have returned averaging 1 every 5 minutes, which very well could be because he's sick and theres a chance he will overcome this illness and the seizures will go away again. Even if that chance is slim, we remain hopeful and we ask that all our friends and family remain hopeful as well and that you all pray. I have learned through Nathan's journey that the strongest form of medicine does not come from a doctor or a pharmacy, it comes from prayer... it comes from God, so take a second or two or three throughout your day to pray that Nathan can get through this. ~~ Christina”

Nathan never received a diagnosis. His family received his prognosis based on his MRI, but they did not know why or how it was happening. His doctors assumed it was due to some sort of metabolic disorder or neurodegenerative disease, however, they were told there was so little known about both that they would never get a diagnosis. Nathan suffered from intractable epilepsy, failure to thrive, grand mal seizures, go issues, apnea, and brain atrophy. On November 11, 2012, he died from cardiac arrest. He would have been 22 months old today.

Even though Nathan is no longer here in the physical world, he has definitely left his mark. His family continues to advocate awareness and they are keeping Nathan’s memory alive by sharing his story and I want to personally thank his mother, Christina Earle, for sharing Nathan’s medical history with me, so I could write this blog.

Christina’s Blog:

Thursday, December 6, 2012

Thankful for a Pediatrician That Listens

After almost 4 days of keeping nothing down, I told my pediatrician I suspected a milk allergy. Her first words were, it’s possible, let’s try a different formula. We are both still hoping it turns out to be a virus that was causing Wendy’s vomiting and hoping that the soy is just a little easier on her tummy and that we’ll eventually be able to go back to products containing milk, but for now, I am just thrilled to know my baby is not starving to death and that she can breathe through her nose. The mucus has cleared up almost completely and Wendy has held down her soy formula since 12:00. Every other feed we are still doing pedialyte, and our goal within the next 24-36 hours is to be back on full feeds. We’ll continue the soy based formula (as long as she’s still tolerating it well) for the next 1-2 weeks and after that we will decide if we want to try to switch back to her normal formula. As for now, I am going to try to get some sleep. I’ll have to be up every 3 hours to switch her pump from formula to pedialyte so I better rest while I can. I’ll try to keep everyone updated as much as possible. Thanks for everyones prayers and concern. :)

Wednesday, December 5, 2012

Vomiting Formula? Keeping Down Pedialyte...

About 2 weeks ago Wendy started getting a snotty nose. I figured it was no big deal, change of season, etc, etc. I ran a vaporizer, used saline and suctioned when needed, and put Vicks Baby Rub on her before bedtime. About a week ago, she began vomiting some. Not after every feed, so I just figured it was the mucus draining on her stomach and making her queasy. 2 days ago, she began vomiting every formula feed I gave her. She kept the Pedialyte down fine. No fever. No cough.

I called her pediatrician yesterday because I was worried when she couldn’t keep down the formula. Her pediatrician said to push Pedialyte for 24 hours then do formula every other feed. She said it was probably a virus and there was no need to bring Wendy in around the sick kids who were coming in with strep and the flu. I gave her straight Pedialyte from yesterday around lunch until 5:00 today (that’s what time we got home from the appointment with her surgeon and I didn’t want to start formula feeds in the car in case she got sick). 30 minutes after her feed began, she vomited it all up and her nose is super snotty again. (Her nose had cleared up completely when she was on the Pedialyte.) I know milk breeds mucus, but this is extreme. And it may be a simple sinus infection, virus, cold, whatever, but I am freaking out. This is the 3rd day she’s not been able to keep any formula down. She is already tiny- 14lbs and 14 months old (she’s only gained 8oz in the past 2 months). I’m beginning to wonder if she’s developed an allergy to milk; she’s on Similac Neosure; or if she’s gotten “food poisoning” from a bad batch of formula. She’s had a virus before and even then she’d vomit a little of the Pedialyte (not as bad as the formula, but this is so strange that she’s keeping every bit of the Pedialyte down). I don’t know, my mind is running crazy right now, and I am taking her to the pediatrician first thing in the morning. (I’d take her to the ER, but honestly, with a baby with Wendy’s extensive medical history, a doctor in the ER usually doesn’t know what to do with her and I’d rather just give her Pedialyte and keep her hydrated until her doctor that knows her history can see her in the morning.)

Prayers please! My nerves are shot and I’m sure it’s going to be a long, long night. On top of my back being messed up (I’m not sure what’s wrong with it, but my lower back is killing me and my legs are going numb; I have an appointment for myself at 2:00 tomorrow, so hopefully I will be able to make it.) Also, Wendy’s appointment today with the surgeon went fine. We continue dilating her anus and going up sizes every 2 weeks and on January 2, as long as she can be dilated at a big enough size, we will be scheduling surgery.

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.

Saturday, October 27, 2012

Copy Cat and Crying Mommy!

My sweet one year old Wendy finally tried to say a word today! She loves patty cake and claps when you sing it! Well I was changing her colostomy bag today and singing patty cake to keep her occupied and I noticed she was moving her mouth, trying out different sounds. She finally got out "pa". I kept saying "patty cake" and she kept saying "pa". Tears started streaming down my face. Tears of happiness. Wendy has never tried to emulate our sounds before and this is such a HUGE ACCOMPLISHMENT for her! I was so incredibly proud. I even called my mom and put her on speaker so she could hear the soft sound of "pa" coming from Wendy. With any baby, a mother feels a sense of pride when they learn something new. But especially with a special needs child, the feeling of joy was overwhelming.

Monday, October 15, 2012

Worst Day Ever :/

Please excuse any misspellings or weird autocorrects. I've been awake for almost 24 hours. That plus stress and there's no telling what kind of mistakes I could make.  Today was surgery day for Wendy. Mommy got up at 12:00 to stop her formula an switch her to a pedialtye feed. At 2:00am I got up to start getting ready to leave, we had to leave by 3:30. After getting to the children's hospital at Egelston, we had to figure out how to park. This parking garage is weird (almost as bad as 7 south at Vanderbilt university hospital, except you have to pay here!!). We finally got to the day surgery department and saw the waiting room was tiny (keep in mind we're used to the surgery center at Monroe Carell Children's hospital that was donated by Rascal Flatts and is super nice, and BIG!) and it took a bit for us to be called back, even though we arrived at 6:30 and were supposed to be Dr. Wulkan's first surgery of the day. Zed and I sat in the pre op room trying to keep Wendy entertained for an hour and a half before our nurse finally came in. The room had a big stretcher in there, so there was no crib or anywhere to lay Wendy because she rolls so much. We just took turns passing her off. After the nurse came in, Zed went to the waiting room with our bags and my mom came back to help. Soon after that Dr. Wulkan came in to tell me that the schedule was messed up and she wasn't going back for surgery until 11:00. So I had an irritable baby who had been awake for hours that was hungry. The surgery went smoothly and we were taken to a room to wait for Wendy. She came in about 2:30 and Zed held her for a brit before he left to go back home. My mom ended up staying with me because Wendy had been crying and kicking ever since she came to the room. The nurse gave her pain meds and nothing helped. If we laid her down, she would cry so much her heart rate would shoot up and her pulse ox would drop. She also hates her IV in her hand. About 8:30 they came in to tell me to she was running a fever of 102 and needed Tylenol. After I told them her feet and hands were swollen they said they'd bring in a resident to see her. It's not 11:00 and we haven't seen a doctor. And the nurse came back in to say the tech that took temps mixed up patients and Wendy wasn't really running a fever. The only good thing right now is that Wendy fell asleep in my arms about 9:00. I got her laid in the crib at 10:30. I knew she would sleep deeper if she wasn't being held. My mom is asleep. She went to sleep right after Wendy did. This mana bear is watching her baby like a hawk. I'll probably wake up mom in about an hour so I can get an hour or two of rest. Until then in guarding the door because our night nurse likes to walk in and talk at the top of her voice, like my kids not trying to sleep. If she wakes Wendy up, I'm making her sit in here and rock her!

Sunday, October 14, 2012

The Day Before

How do you prepare for your 12 month old baby to have surgery? How do you prepare yourself to walk out of the pre-op room, leaving your baby in the hands of strangers? How do you continue to tell yourself that everything will be fine?

I guess the reality is, you can't.

Wendy was taking a nap earlier and I woke her up just so I could hold her because I realized I may not be able to do that tomorrow. The sad reality of our situation is, no matter how much time is between now and the surgery, I can't truly prepare myself. Yes, my purple leopard print luggage is all packed. Yes, the alarms on my phone will go off at 2:00am so we can leave at 3:00. But I'm still not ready to do this. Problem is, I don't have much of a choice.

Friday, October 12, 2012

Surgery Number 3

This will be Wendy's third surgery in her short 12 month long life. It doesn't get any easier. In fact, I think my heart is aching more for her now than it was for her surgeries at 3 days old and 6 weeks old. I am much more attached to my baby girl now and since we have had her home for so long it is going to be hard to take her back to a hospital.

After Zed talked to Dr. Wulkan yesterday, her new surgeon, we decided to go ahead with the surgery as originally planned. Wendy will not have a team of surgeons now, nor the MRI in the middle of surgery. We would have liked to have the more extensive surgery however, they have been trying for 6 months to coordinate schedules and it was just not happening. We, including the surgeon, decided it would be better to go ahead as first planned because the older Wendy gets the harder it's going to be for her. So we are now scheduled for Monday at Egelston.

 I'm going to make the best of this weekend! We are going to do some photos in her Halloween costume and carve some pumpkins! But come Monday, please keep sweet in your thoughts and prayers. Hoping for a quick recovery so we can be back home soon.

PS- thanks to everyone who came to Wendy's party or sent a gift! We appreciate it so much. She had a wonderful first birthday. 

Tuesday, October 2, 2012

Murphy’s Law

If anything can go wrong, it will.

That definitely applies to this past week. Not only have I been extremely busy, but it seems every bad thing that could possibly happen, has happened.

It started with a phone call last week saying they were rescheduling Wendy’s surgery to November 14. That in itself wouldn’t be such a big deal, but the fact that I’d already had the dog scheduled to be neutered, cancelled the “walking for Wendy” group at the March of Dimes walk on October 13, and since the surgery has already been put off from it’s original date of June 28, made it very frustrating. Then we went to Wendy’s cousin’s birthday party. And of course, as soon as we got there, her bag had to come off, which again, isn’t a huge deal, but that on top of the frustrating news, plus having to change her in the back of my mom’s Tahoe kind of put me in a sour mood. Oh and the day before that, all of our kitchen lights blew (they’re 6 big floodlights). So we bought more and Zed put 2 of them in, flipped the switch, and nothing. So now we have no kitchen lights and don’t know why. Next came the pageant. The first hiccup in that plan was when the director’s found out the original location was double booked so it moved the location from Commerce to Gainesville, which added another 45 minutes to our drive. Then came crowing, and it’s always disappointing when your child doesn’t win. I don’t care what anyone says, you never want to see your child in second place, especially when your child is already “differently abled” which makes my next point; maybe pageants aren’t for us. Wendy has also been sick, just a runny nose then a cough that I noticed this morning. It was really “wet” sounding, so I called the pediatrician and made and appointment. Dr. Martin says the mucous is probably running down her throat/airway since her nose is so small, so that’s where the congested sounding cough is coming from, however, her lungs sound great and there is no infection there. Dr. Martin says it’s because I’ve been keeping saline in her and sucking her out regularly that has kept her from getting worse. I’m glad she has confidence in me and my parenting skills because sometimes I feel I’m not good enough or doing enough for Wendy. Since I had to take Wendy today, I had to change my rheumatologist appointment to tomorrow. Finally, our air is not working. It stopped yesterday. The big fan on the top of the unit isn’t moving. The heating and air guy tried to cool the unit down with water and did a few other things, but it still wouldn’t start. He said the only thing we could do now is let it sit overnight and see if it starts on it’s on and if it doesn’t, we’ll need a new unit. All of this the week before Wendy’s birthday.

Murphy’s Law.

Wednesday, September 26, 2012

Fifty Shades

I am going to be honest. The only problem I have with the book Fifty Shades of Grey is the fact that it’s a best seller because it’s poorly written. Otherwise, I see no issue with one reading it.

As of late, I have seen posts where people are saying that if you read Fifty Shades of Grey that you aren’t a “good Christian”. Well, all you self-proclaimed good Christians that refuse to read this trashy erotic novel, have you read The Hunger Games? It’s about children killing other children. How about Harry Potter? It’s about sorcery. And how many of you have watched True Blood? This past season not only did they have sex scenes, they actually did a full frontal of a man laying on a table that they drank from. Okay, how about another book (turned movie) that was popular.. The Da Vinci Code. It suggests that Jesus married and had children, which you will find nowhere in our Bible.

My point is, this book is fiction. It is purely for entertainment purposes. Honestly, I only got through the first one and I blushed like crazy. But I dislike the fact that people are judging others who may enjoy reading this. It states clearly in the Bible that you should not judge. Besides, many of these people who are doing the judging are nowhere near perfect themselves. If you are one that condemns others for reading Fifty Shades let me ask you a few questions… Where you a virgin until you were married? Have you ever said “oh my God”?  Have you ever told a lie?

I am not trying to say that I am a better Christian than anyone, because I know I have my faults. I know this blog has absolutely nothing to do with Wendy, but I just want to say I HAVE READ FIFTY SHADES OF GREY AND IT DOES NOT MAKE ME A BAD MOTHER, WIFE, OR PERSON IN GENERAL.

End of rant. :)

Monday, September 17, 2012

The Magical Miracle Of Pregnancy

I just watched the movie, What To Expect When You’re Expecting. It’s an adorably cute movie about different couples experiences, surprises, and sometimes difficulties of having a baby. In the movie, one couple lost their baby. Another couple took two years to get pregnant. And one couple couldn’t get pregnant at all, and rather had to chose the option of adopting. Then, on the flip side, you see two couples get pregnant without even trying. One of the women had an extremely difficult pregnancy where she experienced every bad symptom of pregnancy that you could possibly imagine and another had the best pregnancy, even carrying twins. It just shows that every pregnancy is different and becoming a family happens in it’s own way. God definitely has plans for each of us and we all just need to realize that He knows what He’s doing, much more than we do.

For those of you that aren’t close to me, you don’t know that at first Zed and I tried for months to get pregnant and didn’t succeed. We wanted to get pregnant before his deployment, so the birth control stopped in December. He left in February. We obviously didn’t get pregnant. We also didn’t get pregnant during his leave in April. If I only knew then what I know now, there is no way we would have even considered having a baby while he was deployed. I had no idea of the hard and sick pregnancy that was in my future. We had no idea of the health issues our baby was going to have. But I’m sure God did. And I feel like that’s why I didn’t pregnant before. Amazingly, one month and four days after Zed got home from Afghanistan, we got a positive result on a pregnancy test, which means I conceived Wendy literally two weeks after he got home. If that’s not a sign, I don’t know what is.

From time to time I have to remind myself that my life isn’t in my own hands. I worry sometimes what our future will be, what other challenges we will face with Wendy. Then I think back to everything that has led up to us having her and I remember that my life is already pre-planned, I just have to follow course and handle things the best way I know how. And the best way for my little family to handle anything is with love; lots and lots of love. We shower Wendy with it. We remind ourselves that our love is what got us to Wendy. And we promise that our love will get us through any hardship.

The title of this blog is very fitting. It was a miracle that I had Wendy- after my body tried to rid itself of the fetus pretty much my entire pregnancy. It was magical seeing that tiny three pound baby for the first time. And thanks to God, my magical miracle pregnancy gave me the most magical, miraculous, absolutely perfect angel of a baby. It was all in God’s time. It was all in God’s plan. And I thank God every day for trusting me with the life of my precious Wendy.

Tuesday, September 11, 2012

Brightened My Day

As many of you follow me on Facebook, I’m sure you saw the post where I ranted about an old lady at the eye doctor who badgered me about having a second baby. If you don’t follow me on Facebook or haven’t seen the post a woman sat beside me at the eye doctor and asked about Wendy, we even talked about her being a special needs child, and she ended up saying I needed to have another child so Wendy would have a sibling because she “needed someone to play with”. I told her no, and she continued lecturing me. Needless to say it pissed me off. Not only have I recently struggled with the heartache of the thought of never having more children and never being pregnant again, I also just don’t like to be told what to do or how to raise my child. Zed and I decided on Wendy being an only child in Wendy’s best interest and our own. We always take what’s best for Wendy into consideration for any decision we make.

But with the bad, sometimes there’s good. My trip to the eye doctor wasn’t good, but I met someone there today who touched me and warmed my heart. He was an older man, probably around my grandmother’s age. He has grandchildren of his own. You could clearly tell there was something wrong with him. His legs were small and he walked with crutches. He told me he was born with osteogenesis imperfecta (aka, brittle bone syndrome). He said at one point, every time his mother changed his diaper, it broke another part of his leg. He told me, him being the disabled one, that he couldn’t imagine raising a differently abled child, that he had raised two normal children and that alone was hard. He said mothers of special needs children are the most amazing women in the world and deserved much more credit than they get. Every time I think about him saying that, it puts a smile on my face.

Wednesday, September 5, 2012

Babies Can’t Wait Evaluation

I got in the results for Wendy’s BCW evaluation today. Of course, evaluations always look worse on paper than they are, but here are her results.

She was assessed using the Battelle Developmental Inventory with the following results:
Scores between -1.50 and 1.50 are considered average.
Adaptive: (-2.33) Significant Delay
Personal-Social: (-1.33) Low Average
Communication: (-2.60) Significant Delay
Motor: (-2.40) Significant Delay
Cognitive: (-2.40) Significant Delay
BDI-2 Total (standard measure of development across 5 domains): (-2.67) Significant Delay

For the Peabody Developmental Motor Scale
Reflexes: 5 months
Stationary: 3 months
Locomotion: 3 months
Grasping: 4 months
Visual Motor Integration: 6 months

Gross Motor Percentile: >1%
Fine Motor Percentile: 2%
Total Motor Percentile: >1%

Wendy was evaluated at 10.5 months old, adjusted age: 9 months old.

I’m hoping this will be what helps us with the Katie Beckett waiver so Wendy can finally be approved for Medicaid. She will also begin therapy in the home soon.

Sick Wendy :( Sad Mommy

Every mother hates seeing their child sick, especially when they aren’t sure what is wrong. Vomiting with Wendy can mean a few things, something as simple as a virus or something as deadly as her intestines being twisted. She started vomiting (and I say vomiting, not spitting up, because it was full blown, exorcist style, out the nose and mouth vomiting) Monday night. I immediately unhooked her feeds and emptied her stomach with a syringe. 4-5 hours later, I started a Pedialyte feed, which she usually tolerates fairly well, even when she’s sick. That first night, I sat up and watched her and she did fine with the Pedialyte. Once lunch came around yesterday, I started back on formula to try it out. The first 2 feeds went fine, but by the 3rd she was vomiting again, even after switching back to Pedialyte last night she was still sick. I was convinced I was going to have to take her to the doctor, which I really didn’t want to do for the simple fact that we try to go as little as possible because even if other kids aren’t sick, they still have germs and it’s getting close to Wendy’s surgery and an infection is the last thing she needs. So after sitting up with her almost all night last night, she was fine after 9:00. So I started Pedialyte again at 12:00 and so far she’s been fine. Her last feed I switched back to formula and I guess we’ll know how she tolerates it in a few hours. I know her intestines aren’t twisted because she wouldn’t be able to tolerate anything. So I’m pretty sure it’s just a virus, but if it doesn’t pass in a day or so, we’ll have to go to the doctor to get some medicine because I don’t want her dropping weight (because it’s already a struggle to gain it) because she’s not getting enough nutrition. Overall, it’s not been anything I couldn’t handle. Although, some sleep would be nice. I’d say I’ve only gotten 4-6 hours total for the past two nights.

Sunday, September 2, 2012

Day Two Without Wendy...

... And I am losing my mind.

Zed took Wendy to the lake last night. He said it was to give me a break. So I took my break last night, slept from 9-6 and even got in a few naps today. I was supposed to join him and sweet girl today, but I wasn't feeling great and really wanted it stay hom. I tried to talk Zed into bringing Wendy home but he said no, they would see me tomorrow and I should rest while I can.

Do you know how hard it is for a mom to "just rest" when her baby birdie is away from the nest? Almost impossible, I find myself pacing her room like I'm looking for something, like I'm looking for her. I know Zed is her daddy, so why do I feel like a bad mother for letting her stay with him, away from me, for a night or two? I guess as a mom, I feel like no one can care for her as good as I do. I know I need a break, and if Zed doesn't take her to the lake or somewhere, I won't get the rest I need,even if he says he'll watch her all night, if I hear her I am going to get up. That's my instinct as her mother. I guess I should be thankful. For now, I'm just in bed on my iPad while Hunger Games is playing on my tv. Maybe if I went ahead and took my Ambien I would quit stressing and actually rest.

Saturday, September 1, 2012

Dear Friends...

I just wanted to post a blog for my true friends, to those of you who have been there for me throughout everything I’ve been through. Whether you were near or far, if you have been there for me, thank you. I know I am not the best friend you could ever have. I hardly ever answer my phone. I’m always too busy to hang out. And I don’t always return your text messages. But, I honestly appreciate you more than you can imagine. It’s not easy going through a difficult pregnancy. It’s not easy having a sick child. And it’s really not easy to keep friends through all of it. So again, to those of you who have stood by me, I love you and I am glad you are a part of mine and Wendy’s life. 

Friday, August 31, 2012

NPO, at least for a while

I have not blogged about this because I was still unsure of my next course of action. But after attempting to feed her a few times, my choice is clear. Wendy will not be able to eat anything else until she has a swallow study done.

It started the beginning of this week when I was feeding Wendy. It was just plain baby food. She got choked within the first few bites. I thought, maybe she’s excited and getting ahead of herself, so I tried another tiny spoonful. Same thing. So we did no more feeds by mouth that day. A day or so later (she still hadn’t had any food by mouth) she gets choked on her .6 mL of Pepcid. That used to happen some when she was 6-7 months old, but it hasn’t happened recently. Wendy has also developed a bit of a cough (which her nose is runny too, so that’s probably just allergies, but I would rather be safe than sorry).

So now, I am calling my pediatrician today to see if we can get a swallow study set up because I cannot continue to feed her, not knowing if it’s going into her lungs or not. I can’t let her get an infection because I was pushing her to learn to eat. I have accepted the fact that this feeding tube may be a part of our life forever and I’m okay with that. I want Wendy to be healthy but I also want her to be happy. I think letting her lick a little bit of food off my fingers every once in a while will keep her mouth satisfied, especially if it’s something yummy like ice cream. (You have to watch her though, because she bites!)

Tuesday, August 28, 2012

Mommy’s Heart-stopping Moment of the Week

Changing a G tube button is not the hardest thing in the world. But comprehending how a child can pull out said button without bursting the bubble at the end is a lot harder.

Wendy is famous for ripping out feeding tubes. She pulled out NG tubes in the hospital and ever since she's been home, she has been pulling out G tube buttons regularly. But how she got this one out, without popping the balloon at the end, is beyond me. When I saw it, my heart sank because I just knew she had pulled so hard that it had detached her stomach lining from abdomen wall or even ripped the hole in her belly open. Fortunately, that wasn't the case. It was as simple as her pulling her button out and mommy replacing it like normal.

I knew these past few days had been too uneventful! I guess Wendy decided without me that we needed a little excitement this morning. 

Saturday, August 25, 2012

A Few Crowns and a Little Disappointment

Today was pageant day. I didn’t really know what to expect going in. It’s been many years since I’ve competed. (I was 17 my last pageant, and things done in pageants with older girls can be so much different than a pageant with smaller children.) I truly wasn’t expecting Wendy to win. It was her first pageant after all. But I definitely was not expecting last place in her division either. (I know you’re all probably gasping at the thought of her being last, just like I was, because let’s face it, if you’re reading this blog, you're a WENDY FAN! and you want to see her succeed as much as I do!)

Initially, Wendy’s age group should have been 0-11 months. However, at the last minute a 15 month old got stuck in their group because she was alone. The only reason I mention this, is because that 15 month old could walk. My 10 month old can’t. The other 10 month old in the group couldn’t walk either. Nor could the tiny 5 lb preemie 6 week old. The 15 month old won. I’m definitely not saying she shouldn’t have, but it’s difficult to score a walking baby and a baby having to be carried on the same level.

Wendy’s lowest scores were in poise and personality. I completely understand her scoring low on personality. When she went out for beauty, she was overwhelmed. Wendy had never been in front of that many people before. I didn’t expect her to smile at everyone and wave. But I am very disturbed by her score in “poise”. I don’t feel that they should even have that category with such young children. It says they are scored on walk, confidence, and grace in that category, and I know for one, my 10 month old has none of the above. Outfit of choice went beautifully. Wendy grinned and everyone loved her mermaid costume (big pat on the back for mommy!). Wendy also won fan favorite. Big surprise there (note the sarcasm, Wendy is always a big hit with people).

Wendy is a winner in my book and several of the parents agreed with me. We had such a positive response from the audience and other contestant’s mothers that it was amazing. Especially people who have followed Wendy’s story were delighted to finally meet her. Wendy also had a blast with the other younger girls. She laid on a blanket on the floor and the other little girls sat around her and would touch her face and hand her toys. It was wonderful seeing the interaction.

As of now, I’m not sure pageants are our thing. My concern is that the judges have no idea of Wendy’s special needs; I didn’t want them to. But that’s also a disadvantage because the other children her age could be put down and bounce a bit and Wendy is physically not able. Our 6 month goal is to have her sitting. So still at 15 months old, I will have to carry her out. I don’t know that I want to continue going through disappointments because of her special circumstances. It’s a lot to think about and a lot for me to consider. Overall, I just want what’s best for my child.

Friday, August 24, 2012

Mommy can see!

This past week has been so incredibly busy that I have barely had time to breath, much less to blog. So I’m going to take a few minutes and try to get some thoughts down. Tuesday, we had Wendy’s BCW evaluation. Wednesday, I had an evaluation to see if I was a candidate for LASIK. It just so happened I was and they had an opening the next day to have it done. So yesterday I had LASIK. And today I had an appointment to check on my eyes. Tomorrow, of course, is finally Wendy’s pageant!

I said I would blog about my LASIK experience because I had many people ask me about it. So here goes. Once we got to the laser correction center in Gainesville, they remeasured my eyes, just like they do at a normal eye exam. Then I was called back to a room where they “check you in”. I signed consent forms, paid for the surgery, took the Valium, and went over the “kit” you get after surgery (which contains eye drops, a pain pill, and goggles).

After that you are supposed to go sit in a room for a bit while the Valium kicks in. However, the guy getting LASIK in front of me didn’t have his payments situated, so they asked if I was ready to go back or if I still needed to wait. I figured, the sooner the better, so I went back then, without the Valium working yet.

Once taken back to the room you are put on a surgical cap, given numbing drops, and have your eyelids cleaned. They then lay you back on a table and the doctor inserts something that feels like a circular piece of plastic in your eye. You feel some pressure, then they put the laser over your eye and cut the flap. They repeat this on the other eye.

Everything is now gray. They stand you up and have you take two steps and then lay back on another table. Your eyelids are taped open and a laser is put over you. You are told to look at a green dot. There is a bunch of red flashing. Then they repeat this on the other eye.

Dr. Blue then helped me up and asked me to tell him what time it was by looking at the clock on the wall. I could clearly tell it was 2:10. I was taken to an examination room and had my eyes looked at under a microscope and after having goggles put on, I was free to leave.

As soon as the surgery was over, I could see much better than before. It has been steadily improving since then. After about 20 minutes, the numbing drops wear off and your eyes become gritty and burn some. You can start using the numbing drops then. I was very light sensitive, so I hurt pretty bad the whole way home. But once I got home the 2 hours were up and I could take off my goggles. I used the numbing drops and took a pain pill and it helped tremendously. You also have to use a ton of different drops (for numbing, 2 antibiotics, and for dryness). And you have to sleep in the goggles for 5 days. I’m currently having a bit of throbbing pain around my right eye, but they said that’s normal and gave me more drops to help with pain.

LASIK can be pricey, and a bit uncomfortable, but I would do it a thousand times over! Best decision ever!

Monday, August 20, 2012

I’m touched.

I’ve had an enormous amount of people to tell me that they follow Wendy’s blog and they have been touched by her story. But I just want to let you all know how much of an impact y’all have made on our lives! I am so moved by the amount of support, love, gifts, and especially prayers that have been sent to sweet Wendy. I would love name each and every one of you, but I’m not going to attempt it because I’m afraid I’ll leave someone out! But please, know that if you are one of the people who came to my baby shower, who sent me a card while I was hospitalized, who visited me or Wendy in Nashville, who have sent her a gift of any sort, or who have just simply had a kind word I thank you so, so much! Wendy and I could not be more grateful! It has been a long, and sometimes very difficult, journey, but with each one of you, it gets a little easier every day. 

Sunday, August 19, 2012

Traveling with Wendy=Overstimulated Baby that Will Not Sleep

Wendy and I tend to stick to a relatively strict schedule on a daily basis. It has been this way ever since we brought her home from the hospital. Recently, after she turned 7-8 months old, we altered the schedule to better suit Georgia time. Other than that one change, we have pretty much done the same thing, every day, since December 18.

For babies, I think routines are great. For a special needs child, it’s a must. Wendy has to have medicine at certain times of day. Wendy has to be fed certain times of day. And Wendy almost always naps and goes to bed at a certain time every day. Sticking to a strict schedule is what works for us. It keeps my stress level down and helps me manage doing many things at one time. I even schedule Wendy’s doctor appointments around her schedule. I also grocery shop and run errands around her schedule. Mine and Wendy’s life revolves around a schedule.

This weekend, after being back in Georgia for 3 months, we finally made the short trip to Atlanta to visit Zed’s grandparents (Wendy’s great grands), Liz and Randall. I’m so glad they finally got to see Wendy again (they had only seen her once before when we made the trip from Kentucky when Wendy was a few months old). However, staying overnight with Wendy in a place that is not our home is not easy. It never has been. She likes her routine and she likes her schedule, and I like sleep. So if she doesn’t get her normal routine, I don’t get sleep.

Many babies get anxious and overstimulated while traveling and visiting relatives. With Wendy, it’s terrible. Last night we had dinner around 7:30-8:00 and Wendy is usually in bed by then. I could tell Wendy was over tired and needed to sleep, but I could not get that child to go to sleep for the life of me. It didn’t help that we were trying to get her to sleep in her travel pack ’n’ play. She hates that thing. Which is odd because when we lived in KY, she slept in a regular size pack ’n’ play, in the bassinet part in our bedroom. When I tried to get her to take her normal 30 minute to an hour nap at 3:30-4:00 she just screamed. It was frustrating and exhausting. After finally getting her to sleep last night, she woke up at 11:00. I tried cuddling with her and letting her sleep with me (which normally I would NEVER do, but I was desperate!) but she would not sleep. We ended up on the living room floor with pillows surrounding her sleeping in short intervals of 15-30 minutes.

Needless to say, I am happy she is asleep in her crib now!

Thursday, August 16, 2012

New Feeding Schedule… Success?

As all of you know, Wendy has never eaten by mouth. She started off with an NG tube when she was born and at 6 weeks old had a G tube put in and has fed by a pump ever since.

We introduced Wendy to baby food several months back and had recently worked up to about a jar a day, in 2-3 feeding sessions.

Yesterday, this mama decided she was tired of dragging around an IV pole all day, every day. It makes me simplest task of walking from room to room difficult. So I devised a plan. I added up the amount of calories Wendy was taking in every day and decided to figure out a new feeding plan so she would be taking in as many (or more) calories than she was and doing it in a more convenient time frame.

Before yesterday, Wendy was fed 85mL every 3 hours at 65mL an hour. Which meant she only had about an hour and a half between feeds and honestly, it wasn’t worth the trouble to turn the pump off, unhook her, hook her back up, and turn the pump back on during that amount of time. So I decided to go up to 100mL a feed and do 6 feeds a day every 3 hours between 3pm-6am. That put her up to 600mL of formula VS the 680mL she was getting before. I also added in a quick 30min 30mL feed at 11am, and also 2 feeds of baby food, at 9am and 1pm (which spaced it out so her tummy wasn’t still full of formula or fixing to be pumped full of formula). I also changed the caloric intake of each feed.

As the week goes on, I will weigh her and as long as she is gaining, we will continue on this schedule. If not, we will try something different. All I know is, I’m tired of losing quality time with my baby because of her feeding all the time.

Saturday, August 11, 2012

Nothing short of a miracle.

Conversation with random strangers:

Them: "Oh! Your baby's so cute! How old?"
Me: "Thank you. She's 10 months."
Them: "Was she premature?"
Me: "Yes."
Them: "Well, she'll be fine. She'll catch up in no time. My (insert relative here) was premature and he/she is 6 ft tall now."

You have no idea how many times I have heard this at the grocery store, at Walmart, etc.  Honestly it gets old. I know that these people that they have no idea about Wendy's abnormalities because she looks healthy. Sometimes they will notice her feeding pump but most of the time not, because I try to run to the store in between feeds. But I get so frustrated with people saying "Oh, she'll be fine." because we don't know what the future holds. Sometimes I just want to scream, "She was born without an anus, she needs 2 more surgeries, she has kidney reflux, gastrointestinal reflux, intestinal malrotation, microcephaly, and she can't eat by mouth!! What part of that is fine!?!" Usually I just smile, nod, my head and walk away.

Even people that know Wendy's story, don't fully understand what a miracle it is that she is here and doing so great. Miracle. That's the exact word her geneticist used. There are 25,000 genes in the human body. Each of the 23 pairs of chromosomes have a certain number of genes. There are people who are only missing a few genes that are wheelchair bound, have to use a ventilator, or have other health problems that are much more serious than Wendy's. I looked at Wendy's report of her translocation last night and saw she is missing 73 genes from her 7th chromosome. Yes, 73! That's a lot. 17 genes copied from her 10th chromosome are in place of some of the 73 missing. That's why hers is called an unbalanced translocation because even with genes from another chromosome being duplicated and in place of the missing genes, she still has 56 empty places.

I just wanted to share this with you all, so you all can understand how lucky Wendy is and how blessed I am that Wendy is doing so well and that she is even alive. My precious girl is definitely here by the grace of God.

Thursday, August 9, 2012

My (little) Big Girl!

Litte Miss Wendy turned 10 months old yesterday. It’s amazing just how fast the time has gone by. She’s growing (slowly) and learning new things (quickly!) every single day. Being a mother and watching your child grow is one miracle that God lets you experience. Being Wendy’s mommy, it’s heaven on earth.

Today we went to Wendy’s pediatrician, Dr. Melissa Martin. (Can I just mention that this is the most amazing pediatrician, ever. No seriously, she is!) It was time for Wendy to get more shots and she needed a weight check. Wendy has to go at least every 6 weeks for a weight check. At her last weight check, on 6/19, Wendy weighed 11lbs even. Today, 6 weeks later, she was 11lbs 9oz. 9 oz in 6 weeks isn’t great, but she’s not losing, so that’s a positive. Average babies gain anywhere from 1-2lbs a month. Wendy gained half a pound in 6 weeks, so that kind of gives you a comparison. Her height was last checked in May (she was 24in.) Today, 2 months later, she was 25in. Honestly, I don’t know how quickly normal babies increase in heights, but they said Wendy’s height to weight ratio was on track, so I’m assuming that she’s slow in that department too. Most of the time, when your baby goes to the pediatrician they tell you what percentile of weight and height your child is in. Wendy is so far below the charts, that we don’t get a percentile. She is literally below 1%.

But the weight/height is the only bad news we have! And honestly, that wasn’t terrible news. That’s just normal for Wendy. As far as where she is developmentally, other than eating, she’s doing great. She’s rolling over and smiling a ton. She’s grasping objects and learning to sit on her own. We couldn’t be more proud. She reminds me of the book “The Little Engine That Could”. I read that to Wendy just the other night. Every time Wendy accomplishes something new, I just want to sing “I thought she could, I thought she could, I thought she could.”

I know I haven’t been updating as much as I used to. But Wendy is doing so well, I don’t have as much to write about. I am wanting to do a blog post about how people react to Wendy and how it effects me, but that’s for another time. This blog, is a tribute to Wendy, to all of her hard work (and mommy’s) and all of her accomplishments.

Wednesday, August 1, 2012

Not The Easiest Of Days.

I am extremely exhausted due to Wendy’s later-than-usual bedtime yesterday. So I have been sleepy since I woke up this morning. On top of the sleepiness, Wendy has started vomiting again. I’m praying it’s from teething, upping her formula, a virus, or anything that would cause normal babies to vomit as long as it’s not an intestinal blockage! When I stopped her feed, she stopped vomiting, which makes me instantly think her intestines have twisted or she’s not tolerating the bigger volume of food, which was only increased by 5mLs. As she gets older and bigger, she needs more calories to thrive and grow. Our only solution is to increase the volume of food. She’s already on such a high caloric content, we can’t up it anymore because that can cause severe constipation. Constipation in a normal baby can be dealt with. Constipation in a baby with a colostomy can cause a hospital stay and possible surgery.  I’m just going to keep watching her and if she is vomiting up close to the same amount that is going in, we’ll be heading to the ER for an X-ray. Hopefully, it’s nothing and everything will be back to normal (or as normal as it ever was).

By the way, don’t forget to vote for Wendy for Fan Favorite. $1=1vote! To learn how to vote, go to this link…. Vote Wendy Fan Favorite

Tuesday, July 31, 2012

Fan Favorite

Okay, so we didn’t win a free entry to the pageant, but we get a head start on fan favorite! With fan favorite, each dollar donated counts as one vote.

 All you have to do is go to paypal, and login.  
Click Send Money.
Where it says “To” type in 
Where it says “Amount”, you can donate any amount, $1=1 vote.
Then click Personal and select Gift then click continue.
As the subject put Wendy Fan Favorite then click Send Money.

That’s all.
Please share this blog with your friends and let’s get this baby a crown!

Wow. Huge show of support!

First, can I just say, Wendy’s friends/followers/supporters are nothing short of AMAZING!  As you all know, Wendy is going to be in her first pageant August 25.  The pageants Facebook site decided to do a contest and whoever had the most friends like the page and comment the child’s name would get free entry or a prize. This contest started over a week ago (on the 22nd to be exact). I just put it out there for Wendy two days ago! And already she is in second place- with 145 votes and the lead only having 163. So I just had to share a blog to shout out to everyone that has liked the page and shared with your friends! Thank you. Thank you. Thank you.

And the contest isn’t over. We have until 5:00 to get Wendy in first place!

Acceptance:  favorable reception, approval.

We special needs parents crave acceptance for our children.  We want them to be welcomed with open arms and treated like any other child, which is one of the reasons I am putting Wendy in a pageant that isn’t just for special needs kids (and yes, there are pageants out there specifically for SN kids). I don’t want Wendy looked upon as being disadvantaged. She is a strong, beautiful baby girl that just happens to be a little different.

Saturday, July 28, 2012

Crazy Pageant Mom?

Everyone that knows me, knows that I have been involved in pageants since I was a baby myself up until the time I turned 18. The whole time I was pregnant, I said if I had a baby girl, she would be in pageants. But now the time has come. The new dress is in. The outfit of choice has been custom made. And pageant day is less than a month away. So why am I now feeling like a crazy pageant mom?

And when I say “crazy pageant mom” I don’t mean in the context that you’re thinking. I don’t mean the hit-the-kid-on-the-head-with-a-brush-because-they-won’t-stay-still crazy pageant mom. I mean, crazy pageant mom, as in, I’ve just entered my special needs daughter in a pageant where she will be competing with normal kids. I figure for the duration of the pageant, I will unhook her feeds. I don’t want to be dragging a feeding pump onstage. I also am hoping her costume will stay in place and no one will see her g tube button or her colostomy. I know my child is beautiful, I just don’t know how she’s going to act on stage.

For anyone who wants to be there to witness Wendy’s first pageant, it will be August 25. I will post time and place at a later date.

Tuesday, July 24, 2012

Top 5 Necessities For Raising A Child Like Wendy

5. A Good Video Monitor: If you have a child with special needs, they will most likely come with accessories. Whether it be a heart monitor, a pulse oximeter, feeding pump, etc., you want to be able to keep an eye on said child to make sure he/she hasn’t gotten tangled up in a cord or pulled something loose. Before I had a video monitor, I was getting up out of bed every few hours to check on Wendy. Now, I simply turn over and check my monitor.

4. Organization: This comes into play with many different aspects of Wendy’s life. I have all of her supplies in her closet in drawers that are labeled. When you need a new button or a colostomy bag, the last thing you have time for is to search for something. Also, I make all of Wendy’s food for the day every afternoon. I measure it out and put it in separate bottles in the refrigerator- that way when I have to get up at 3am to add more food, I don’t have to mix a bottle or measure it out.

3. Extras: You should never leave the house without extras. I will forget to bring diapers before I forget to bring an extra button, an extra colostomy bag, and an extra feeding pump bag. The difference in being prepared and not could mean an unneeded trip to the ER. If Wendy’s button comes out and I don’t have an extra, I’d have to take her to the nearest ER to get something put in ASAP. Also, number 4 applies to having extras. Make sure the diaper bag is super organized so you can get to what you need, when you need it.

2. Patience: There will be days when you want to scream at the top of your lungs and pull your hair out! But you can’t. You have to keep it together. That’s where patience comes in. Most days are hard. Some days are harder than others, but no matter what that’s still your child and you still have to take care of them. There are days that Wendy’s colostomy bag refuses to stay on. I’ve been through 5+ bags in one day! Wendy has ripped her button out on several occasions. On those days, I have to take a deep breath and get on with it.

1. Motherly Instincts: This may seem like a silly one, but to me, it’s the most important. I am Wendy’s voice. I am her only voice. And if I don’t think something is right I have to speak up, whether that be to an insurance company, a doctor, or whomever. Wendy is my child, and it’s my responsibility as her mother to be her advocate. If I think she is having a lot of reflux one day, I can up her dose of Pepcid. If I want a second opinion because I didn’t get the answers I wanted, I will take her to another doctor. Wendy’s pediatrician has always told me to use my instincts in raising Wendy because “mother knows best”.

Itsy Bitsy, Teenie Weenie

As I was dressing Wendy this morning, I realized I was putting her in a newborn size onesie. Most people that see her cannot believe she is 9 months old, especially since she weighs only 11lbs and is 24in long. But if you had seen her when she was born, you would see a tremendous growth!

My sweet bambina only weighed 3lbs 15oz, so she has gained 7lbs since birth! And has grown 7 inches! That’s fantastic!

I now understand why mothers start wanting another baby when their child starts getting close to a year old. (Don’t worry, I’m not having baby fever or anything! No more kids from this mama.) It’s just that these tiny creatures start turning into little people who don’t always want to snuggle anymore. They become more independent and self sufficient. Wendy still can’t crawl or walk, and she can’t yet sit on her own, but she thinks she’s grown. She wants to do things by herself and if you try to help her, she will push your hand away. My little girl is growing up.

As for an update on Wendy, she’s not vomiting anymore and I’ve put her back on formula after giving her Pedialyte last night. Her fever is also gone. I’m not sure if it was from teething or a small tummy bug, but whatever it was, she seems better today. She’s more active and not near as lethargic. I’m glad. Mommy hates seeing bambina sick.

Monday, July 23, 2012

Simple Stomach Bug?

People probably think I’m crazy when I post on Facebook that I’m really worried about Wendy vomiting for a day and running a slight fever. And most people thought I shouldn’t switch to clear liquids so soon.

But here’s the deal… Wendy has intestinal malrotation. Her intestines and bowels didn’t form in the proper place while she was in utero. She has had a surgery to help her intestines from rotating and cutting off blood supply, but that surgery only reduces her risk, it doesn’t eliminate it. Therefore, I switched Wendy to Pedialyte immediately after I noticed she was vomiting and running a slight fever. If it was just a tummy bug, she should be able to tolerate clear liquids. If her intestines are twisted, she will vomit everything.

Intestinal malrotation itself doesn’t cause any problems. However, if tissue (Ladd’s bands) blocks the first part of the small intestine or if a condition called volvulus (bowel twists on itself) occurs, it could be life threatening if not treated. The longer your intestines go with out blood supply the more they will have to remove because without blood your intestines will turn into dead tissue.

During Wendy’s g tube surgery, her surgeon noticed the malrotation. So she went ahead and preformed a Ladd’s Procedure. In this surgery, the Ladd’s bands are divided, they widen the small intestine’s mesentery (what connects parts of the small intestine to the back wall of the abdomen), and they preform an appendectomy. But this is not a fix and we will always have to watch for symptoms of her intestines being twisted and we have to make sure every doctor knows she has intestinal malrotation.

I just wanted you all to understand why I worry so much about some things that may seem minute to other mothers. Wendy is different, so I parent in a very different way than most.

Thursday, July 19, 2012

Growth, Development, and Milestones.

Note: all of my information is coming from the book "What To Expect The First Year".

I know all babies develop differently. Each individual child learns to do things on their own time frame. I am simply blogging this because I was reading "My Baby Rides The Short Bus" and one of the dads did this for his son, to see which milestones he hit "on time" and the ones he was "behind". I want to see Wendy compared to "normal" babies her age.

Month 1:
Your baby should be able to: lift head briefly, focus on a face
Wendy could focus on our face and she found her hands this month.

Month 2:
Your baby should be able to: smile in response to your smile, follow an object, vocalize in ways other than crying (cooing)
At 9 weeks old Wendy could lift her head.

Month 3:
Your baby should be able to: on stomach- lift head up 45 degrees, follow an object 6 inches past midline
Wendy came home from the hospital this month. She was already sleeping through the night. When we put her on her tummy in her boppy pillow, she could hold her head up, not very steadily though.

Month 4:
Your baby should be able to: on stomach- lift head up 90 degrees, laugh out loud, follow an object 180 degrees.
Wendy had no new developments this month.

Month 5:
Your baby should be able to: hold head steady when upright, on stomach- raise chest supported by arms, roller over (one way), pay attention to a very small object, squeal in delight, reach for an object, smile spontaneously, grasp a rattle
During this month, Wendy smiled for the first time. She also learned to grasp toys.

Month 6:
Your baby should be able to: keep head leveled with body when pulled to sitting, say ah-goo or similar vowel-consonant combinations.
Wendy's sixth month of life, she found her feet and learned to roll onto her side. She can also turn the page of a thick plastic book.

Month 7:
Your baby should be able to: sit without support, feed self a cracker
This month, Wendy laughed out loud and got in her first tooth.

Month 8:
Your baby should be able to: bear weight on legs when held upright, pass object from one hand to another, turn in the direction of a voice, look for a dropped object
Wendy had been bearing weight on her legs since she was 4-5 months old. This month Wendy got her second tooth and rolled over.

Month 9:
Your baby should be able to: work to get a toy out of reach, look for dropped object
Wendy said "mama" and is learning to wave bye-bye. She is also babbling a ton.

Month 10:
Your baby should be able to: stand holding on to something, pull up to standing from sitting position, object if you take away a toy, say mama or dada indiscriminately, play peekaboo
Wendy can bear some weight on her legs but not enough stand but she will cry if you take away my iPhone. She loves that thing.

Here's my reality. Wendy is 9 months old (in her 10th month of life). She still can't sit alone and she is nowhere near standing or crawling. But she's not they far behind mentally. As long as she's happy, I'm happy, no matter the future hold or what milestones she will or won't reach.

Tuesday, July 17, 2012

Have I unintentionally subjected my daughter to lifetime of pain?

Many of you that know me personally, know that I have had medical problems for quite some time. I even quite school my junior year because of all the issues I was having. And after being tested from the time I was 13, I still, until today, had no answers.

I went to a new rheumatologist today because ever since I have had Wendy, it seems my symptoms have been worsening. I have been to rheumatologists at the Medical College of GA, Emory University, and Vanderbilt University, and this new doctor- Dr. Agha, figured out more in 10 minutes than they did in 10 visits.

Dr. Agha says I have Hypermobility Syndrome (HMS). HMS is a condition in which joints easily move beyond the normal range. After examining me, Dr. Agha said my hands, particularly my fingers, my legs (knees and ankles), and my back are all extremely hyper mobile. He said there are other joints, such as my neck and shoulders that are hyper mobile, but not as badly as these others. Luckily, I have a diagnosis now and we are working on a solution to the problem. That means taking more medication, only doing very light exercise, and reducing stress in my life. He also suspects I may have an autoimmune disorder, which he will follow up on in 4 weeks when I go for another appointment.

My main concern with HMS is Wendy. It’s hereditary. Zed and I have both noticed Wendy is abnormally flexible and now knowing I have HMS I’m worried she will have it too. I would hate the thought of my baby being in pain because of my passing down a syndrome. And also, the whole time we thought it was Wendy’s fault for not swallowing which caused my water to break, I now know it could have been my body. Two symptoms of HMS are premature labor and a very fast progressing labor- both of which I had. 

Hopefully, I will start to feel better soon and get my joints stable and I will also be mentioning this to Wendy’s doctor, that way if she’s suspected to have it, we can take measures to prevent further injury.