Tuesday, July 28, 2009

A Classic chevELLE

Lee is now the proud new owner of a 1964 Chevelle! I didn't think he would actually ever break down and buy it - but he surprised me this evening and bought it. It is a total fixer upper - but he loves it and that is what makes me so happy!! Elle is a total daddy's girl - I can't wait for the two of them to go cruising in the chevELLE!

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I can't figure out how to rotate the video - so - sorry it's sideways!

Here are a few pictures from Animal Print Friday...Elle hanging out with her daddy

Saturday, July 25, 2009

I'm Horrible

Ever since we found out I was pregnant and have been blogging about it, I have become a slight "blog stalker." There is one blog in particular that I'm pretty sure if I actually knew the writer, we would be wonderful friends. She hosts a weekly "get to know other bloggers" and the newest way to get to know each other is based off of wedding dresses/pictures. Well - I wanted to join in on this blog adventure but there is one slight little problem. Lee and I have been married for 3 1/2 wonderful years. One would think that in those 3 1/2 years (1224 days to be exact) I would have found time to choose our wedding pictures and have them available for all to see. Technically, I do have them chosen, but I have yet found the time to sit down with our wonderful photographer and place the order for the prints. Since our photographer went to digital after Lee and I were married - I had to flip through hundreds of proofs (which I just did this past Thanksgiving). So, after viewing some of the beautiful wedding dress pictures from Kelly's Korner (http://www.kellyskornerblog.com/) I started looking through the pictures I have on our computer. I was looking at my bridal portraits and some of the pictures my cousin sent me from our wedding and I realized how desperately I want to get our wedding pictures developed and displayed in our home. Plus - I look skinny in some of the pictures and after going through my closet today - it was a good boost to get my butt moving to lose the baby weight! Here is my inspiration picture from my bridal portraits...
I worked so hard to have awesome shoulder blades on our wedding day!

Inspiration pic to pick the golf clubs back up!

It was cold the day I took my portraits - this is one of my favorites

The young'uns (all of us - even Reggie)

THE BEST INSPIRATION OF ALL!

Friday, July 24, 2009

Semi CHARGEd

Several weeks ago the nurse from the Genetics department at Texas Children's called me and told me that Elle's blood test was back from when they tested her for CHARGE syndrome. They tested the CHD7 gene which (so far) is the only gene that has been linked to CHARGE syndrome. We've always known that Elle is a one of a kind and truly she is because her CHD7 test came back with an "unidentified mutation of the CHD7 gene." Hmmm. The nurse told us that the next step would be for Lee and I to have our blood drawn and tested to see if either one of us is a carrier of the mutated gene. Lee got the phone call today with our results and neither one of us is a carrier of the mutated gene. Another hmmmm. As of right now, the doctors can't really say too much about our little princess. Yes she has an unidentified mutation of the CHD7 gene but no one knows how that will affect her or if they can truly call her a CHARGE baby. I am waiting on a phone call from Genetics to schedule our appointment. I am actually kind of nervous/excited/interested to hear what they have to say about Elle. They told Lee this morning that they will definitely be following her progress because she is a rare case. All afternoon since Lee told me about the phone call I have been thanking the Lord for what he has given us. I keep going back to the first time Elle failed her hearing test and I told Lee I was upset because I wanted a miracle baby with deformed ear canals but perfect hearing. His response to me was - "she is a miracle baby and the best part about it - is that she is OUR miracle baby"...Amen to that!!

Thursday, July 23, 2009

A Day in the Life Of

A 4 MONTH OLD!!

Happy Birthday to our little princess!!
This morning Elle woke up in a super mood. She talked her entire way through breakfast which I absolutely loved. I had to put Good Morning America on mute because she was talking so much! After breakfast, I gave little miss a bath which she loved up until I took her out of the water. After her bath, Elle played with her mobile while I got everything ready for her doctor visit today. It's pretty funny to watch on the monitor we have in the kitchen. All you see in the screen is the mobile swinging back and forth as Elle swats and grabs at the animals as they turn by. Most of them are also covered in slobber as she grabs them and puts them right into her mouth.

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I think the reason it takes me so long to get ready in the morning is because I stand by Elle's crib and just watch her play with her mobile...or I play with her on her changing table - she loves to be on her changing table - her arms and legs start going a mile a minute and she just smiles and her eyes get so big - she loves it (and so do I)! After getting everything ready for the day, we headed over to my parent's house. This afternoon Elle had her 4 month visit with her pediatrician. It was the first time I got to meet our pediatrician since she has been out of town for the past 2 months.

I can say that she was worth the wait. She spent over an hour with us examining an Elle and going over her complete history. I was very impressed. The exam went well and Dr. S put the order in for us to follow up with a Gastro doctor. Elle's screaming matches during her feeds haven't stopped so her pediatrician suggested we see the tummy doctor. Also, Elle isn't really gaining the weight she needs to be. She is in the bottom third for both head size and weight and in the 50th percentile for height. They aren't worried about her stats, but Dr. S does want to get her feeding and weight gain under control. Of course, Elle had to get her 4 month vaccinations today. It was horrible but the nurse was quick about it and gave Elle silver band aids. Elle spent the remainder of the day sleeping and watching Baby Einstein. This evening, Lee's mom, dad and brother came over to help celebrate Elle's 4 month birthday. She slept through it, but we all enjoyed some great BBQ!

One of my favorite things are Elle's big bows. Lee absolutely hates them so we had to take picture with her bow and without her bow. Her bow today said "Happy Birthday" all over it. Just too cute for our little girly girl.
Some milestones for our big 4 month old...
* Elle has started to grab onto things and put them straight into her mouth. She grabbed the stethoscope today from the doctor and tried to put it in her mouth!
* She has started grunting when she is going to the bathroom. I think it is absolutely hilarious!
* She talks and talks and talks. I am waiting on the laughing to start soon!
* We have been working on her head control and strengthening her neck with exercises from the occupational therapist - with the use of an exercise ball (I knew I bought that thing for a reason)
* She sleeps on her tummy - but only during nap time
* She is our perfect little angel and we are so blessed!!!

It's Official...

I officially placed the order for Elle's hearing aids. She should get them in about 2 months. The most exciting part about Elle's hearing aids is...
THEY'RE PINK!!
Actually, they are baby pink and the ear molds are clear with sparkles! The hearing aids Elle will be the proud new owner of are super slim and low profile. They are called the Oticon Vigo. The pink ones we are getting are the second from the right in the picture. I can't wait to see our little princess sporting her pink hearing aids. More importantly, I can't wait for her to get to experience the world being able to hear. It will be a whole new world to our little angel.

Sunday, July 19, 2009

A Week Without Doctors...yeah right!

A week in review Monday July 13, 2009 - Sunday, July 19, 2009 - Monday through Thursday we were doctor free and it was wonderful! On Monday morning, I took Elle for her first walk around our neighborhood and she absolutely loved it! The dogs loved it too!!

Monday evening, Lee's mom, granddad and grandmother came over to help with Elle. We usually go to our church class on Monday night, but we had to skip this one because Lee's heart monitor was transmitting all the data it had collected during the 3 weeks he wore it. Needless to say, we couldn't stray too far from the house. While we had so many helpers with Elle, I was able to work on Elle's closest. Our little chunky monkey has already grown out of some of her outfits!!

I received a phone call on Wednesday that Elle was approved for occupational therapy. So instead of a week without doctors, we went and saw the occupational therapist on Friday. Elle did wonderful and the therapist was so nice. She gave us some exercises to do with Elle to strengthen her neck and mouth muscles. We will be going back every Friday so Elle can work with the therapist. Friday afternoon, after I went into work for a few hours, I picked up Elle from my parent's house and went home to pack. We were supposed to be going to my parent's bay house in Matagorda, Texas for our first family trip. While I was driving home, I had hooked Elle up to her feeding tube. She ate while I drove home and everything was perfectly wonderful. Everything changed when I got home. Elle and I talked with some neighbors before I headed inside to unhook Elle and start packing. As soon as I unhooked Elle from the feeding tube, all hell broke loose. Elle was crying and screaming uncontrollably for 2 1/2 hours straight. I texted Lee and told him to come home as soon as possible because I couldn't get Elle to calm down and I was starting to get scared. I was crying. Elle was screaming - it was not a good situation. Lee got home and as soon as he did, I called our pediatrician's after hours line. An on call nurse called me back and really couldn't offer any suggestions so he had the on call doctor call me back. By this time, it was time to feed Elle again. We hooked her up to her feeding tube and 10 minutes in, Elle was screaming and arching her back. We stopped her feed. I was on the phone with the on call doctor and she told us to take Elle into the emergency room. The screaming and arching her back was no bueno. We decided to wait and see how Elle would react to her 10:00pm feeding because she stopped crying once her feed was stopped. Before Elle's 10:00 feeding, Lee checked Elle's tummy to see if there were any residuals in her tummy. It's one of the things we have to do with Elle's button to be sure it is in her stomach. If it is in the correct position, milk will be pulled back into the syringe. When Lee checked it - he couldn't even pull the syringe back. He re-positioned Elle and nothing came out. We immediately packed Elle up and headed for Texas Children's. We got to the emergency room at 11:30pm. We were taken to a room and several hours later, Elle was taken back for x-rays to check the position of the tube. Lee stayed with Elle while she was having her x-rays done (hence the cool pink vest).

After x-rays, we fed Elle to see if she would have the same reaction as she had earlier. She slept through the feeding.

After feeding her Lee and I noticed that Elle's toe nails were turning blue. I asked the nurse to put a pulse ox on Elle and when she was first hooked up, her oxygen saturation level was in the 60s. That warrants an emergency situation! It slowly started to come up but stayed in the low 70s. Again, that is a horrible situation. The lowest Elle's oxygen saturation level should be is 75. Because of the problems with her heart, Elle doesn't get too much oxygen rich blood pumped throughout her little body. The shunt they put into her heart when she was less than a month old helps give her more oxygen Rich blood. Because the shunt isn't growing as she grows, she will eventually outgrow the shunt and her body won't be getting enough oxygen rich blood. It will be at that point that Elle will have her complete heart repair. So - Elle's oxygen saturation level is vital. The nurse put a warmer on Elle's foot and that helped bring it up a little. It stayed around 78 for the remainder of our stay in the ER. The doctor finally came in and said Elle's x-rays looked good. The tube is in the correct place. He said just to watch Elle and give her mylicon for gas. He also told us to follow up with Elle's cardiologist because of her drop in oxygen saturation level. Her next appt is next Friday so he said that was good. We finally walked out of the emergency room at 7:00am and made it home around 8:00am. What a terrible night! During our whole stay in the ER, Elle was asleep except while she was getting x-rays. She was a perfect angel..what happened to the 2 1/2 hour screaming match from earlier?! Needless to say, our plans to go to Matagorda didn't happen.
Saturday, Lee and I took turns with Elle. Since she had a good night sleep while we were in the ER (and Lee and I didn't) - she was wide awake when we got home...and miraculously tolerated her 8:30am feed. Lee slept while I stayed up with Elle. She was wonderful! He woke up and took over while I slept the afternoon away. It was pretty much a wasted day - but Elle did great. She had such a good day - much better than Friday afternoon and evening. She tolerated all her feeds.
Sunday, Elle tolerated her 2:30am feeding. She got a little fussy - but it wasn't anything that being held by mom didn't cure. A few feedings later, I was holding Elle and all hell broke loose again. She cried and screamed for 30 minutes. I tried everything to comfort her and she finally calmed down after we turned her feed off and disconnected her. I put her in her lamb swing and she was a happy camper. We decided to hook her back up and she did great! We realized that Elle hates being held while she is eating. As long as she is in her lamb, or sitting in bed, or in her boppy - she is fine. As soon as we pick her up while she is eating - it is a super size screaming match! Once we figured that out - Sunday has been easy! Elle spent a good amount of time in her lamb swing today. She is grabbing onto things now and the toys we have hanging from her lamb swing have kept her mesmerized for hours!

This coming week we have a few doctor's visits. The one I am dreading the most is to her pediatrician for her 4 month shots. That will be horrible! I can't believe our little princess will be 4 months old on Thursday! Time really does fly by so quickly!!

Sunday, July 12, 2009

Busy Weekend

Elle had a lot of fun this weekend! Saturday, July 11, 2009 evening she got to experience her first restaurant. We met Lee's parents and brother at Palio's Pizza for a great dinner of pizza and spaghetti. Elle loved it! It just so happens that as we were walking in, there was a couple at the next table over with twin 9 month old daughters. One of the little girls is a cardiac baby. They were happy, beautiful little girls. It just goes to show the resilience of these little babies and the work of the Lord! Our little Elle Belle was not aAlign Left happy camper when it was time to go. She was having too much fun with Vivi, Big Daddy and Uncle Jake! Sunday, July 12, 2009 was a huge day for Miss Priss! We were anxiously awaiting the arrival of another one of our Mississippi friends..our favorite artist came to visit...Shannon Jex! Elle was so excited to see her Aunt Shannon!
Elle spent the afternoon being held by Aunt Shannon, smiling and making funny faces at her new friend, and trying to suck on her finger while taking her bottle. We had so much fun and we even got a surprise visit from one of my friends from junior high. Jackson "Dee" and he girlfriend, Andra came over to visit for a little bit. Dee is scared of babies - so the closest he got to Elle was sitting at Andra's feet while she held Elle. After eating a fabulous lunch and catching up with everyone, Shannon and I took Elle over to my parents house to go swimming. This was only Elle's second time to go swimming, so we are still testing the waters - literally. Just like before, we went swimming before dinner time so I wasn't' too sure how she would react - but she had a good time! She had her eyes closed for most of the little swim but towards the end, she opened up her eyes and enjoyed the water and kept looking at the big trees that surround the pool.

After our quick swim, it was time to go home and get our little princess fed. We got to visit a little more with Shannon before she had to head back to her parents house. I miss my wonderful friends so much, but weekends like last weekend and this weekend make me realize just how special true friends are. Elle is so incredibly lucky to be surrounded and loved by strong, Christian, smart, vibrant, funny, loving and amazing people. We are so blessed to have these people in our lives. It was such a wonderful weekend!

This coming week is our first week in a long time without any doctor appointments. I am praying for a very quiet week. Elle's cousin, Witt, underwent heart surgery this past week. We are praying for his recovery and for his wonderful family's peace and strength.
Psalm 18:2
"The Lord is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower."

Friday, July 10, 2009

More pics from the weekend and a Visit with Dr. E

Elle (and her new bow) and Aunt Shannon on July 5, 2009

Elle and ViVi on July 5, 2009
Monday, July 6, 2009 we had a follow up visit with Dr. E - Elle's Ear, Nose and Throat doctor. I just knew for sure we would be scheduling Elle's second nose job at this visit because her breathing has become a little more labored. Poor thing sounds like she has a perma cold. She always sounds stuffed up. We made it to Dr. E's without too much trouble - we were right on time for our appointment and not late which was unusual! The first thing Dr. E had to do was put numbing stuff down Elle's nose so that her nostrils would become numb so he could put a scope down her nose. She hated it! She hates anything getting close to her nose - I think that stems from having a "nose ring" for 4 weeks and Lee and I constantly having to suction out her nose. By the way - those bulb things to get stuff out of kids nose and mouths do not work...I wish we had been given a suction machine when we left the hospital. While Dr. E was waiting on the numbing stuff to do its magic, he had to look in Elle's ears. Yet another thing she did not enjoy. I was holding down her arms and his assistant was holding her head. My poor baby was being run through the ringer! Finally, Dr. E looked down Elle's nose - the left side is still open and the right side actually looked a little bit better than it had a month ago. He feels that it is open enough to allow her to breathe and he feels that for the time being - we don't have to rush into surgery. That was such good news to hear. As much as I want her to breathe normally without all the snotty sounds - I don't want to push her into another surgery if she can function without it. We also talked about Elle's hearing. Surgery isn't an option to fix her hearing - so the order will be placed for hearing aids. My vote is still on the pink sparkle hearing aids! Dr. E said that once she gets her aids, she should be able to hear at about 80% which will be remarkable! After this whole tortuous doctor visit, my mom, Elle and I were walking out the door and she puked all over me and all over herself. Poor thing got so upset with all the poking that she made herself sick. Thank goodness for Dreft pens and Tide to Go pens is all I have to say about that! In other news, our precious nephew, Witt, will be having heart surgery tomorrow. Please pray for him, his mom and dad, his family, the surgeons, the nurses, and all the caregivers at TCH. I pray for their strength and peace during his operation and afterward. Please Lord, please protect and heal little Witt!

Sunday, July 5, 2009

Happy Birthday America!

HAPPY 4TH OF JULY! This past weekend has been one for the record books! Friday afternoon Lee, Elle and I anxiously awaited our guests. Not only did Matt and Laura come in from Mississippi, but Lauren and Madison made the trek in from Baton Rouge too! Lauren and Madison were visiting family in Kingwood, so they made the trip to Cypress on Friday afternoon for lunch. It was so good to see our wonderful friends. We may live hundreds of miles apart, but every time we get together it's like we never left each other. The boys mastered the BBQ while us girls hung out in the AC.

Aunt Lauren and Elle

Aunt Laura and a very sleepy Elle
It was a sad sad time of the day when Lauren and Madison had to leave to go back to Kingwood - but it was so much fun visiting with them for a few hours.

Saturday, July 4 Matt and Lee went and played golf with my dad so Laura and I had the day to spend with Elle. I really wanted to take Elle swimming for the first time, so we loaded up and went to my mom and dad's house. Their neighborhood pool is across the street from their house and it is almost always empty. Before we made it to their house, Elle got to experience Wal-Mart for the first time. I was so nervous taking her in there!! I didn't take in her carrier - so I was just holding her and I had to draped in a blanket - like that would keep all the germies off her! We were looking for a 3month bathing suit - but no luck. Instead we stocked up on baby sunblock and a beach towel for me (our towels have all gone to the dogs...literally). Luckily Elle had been given a 12 month swimsuit from one of my co-workers...it was a little big - but it did the trick! I liked that it had a top like a wet suit because it covered up all her scars and her button on her stomach.

After Little Miss Sunshine was dressed and ready to go - we headed over to the pool for about 30 minutes. Elle was ok as long as she had her pacifier - it was lunch time so that was my mistake. All she really wanted was to eat! After her little jaunt in the pool, she was ready for some lounging! Please don't laugh at how pale I am - I haven't seen the sun since August 1, 2008 - and that isn't an exaggeration. That's the day I found out I was pregnant!

Later on that evening Laura, Matt, Lee, Elle and myself grilled out and then set up shop in the backyard to watch the fireworks. All I wanted to do on 4th of July was see fireworks and I was so disappointed! The neighborhood behind ours was supposed to have a massive display and instead of doing it at the community center where they normally do it - they moved it down to the park which was too far away for us to see. Elle was so excited to see fireworks! She took a few cat naps during the evening but come 9:00pm - she was up and ready to go. I stuck her in the baby bjorn and we watched a few from our backyard and then we walked out front to see what we could. Maybe next year she (I) will get see to more fireworks! Sunday, July 5, 2009 - Laura and Matt had to head back home. We were so sad to see them go - but we had so much fun with them! Our friends Shannon and Chris stopped by to visit with our little firecracker a little later on in the day. I will post those pictures once I get them uploaded! It was such a fun filled weekend - and it was filled with a few "firsts." Elle's first trip to Wal-Mart, Elle's first swim, Elle's first 4th of July - and our first over night guests since Elle was born. This week we have a follow up with Dr. E about Elle's hearing and nose. I'm praying for good news!