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