Friday, December 25, 2009

Merry Christmas!

A Year of Thanks…Christmas 2009

Once again, Christmas time is here…It’s time to recollect all that happened this year. Highs and lows, but no love was lost…Friends and family helped no matter the cost. The Rebels beat the Red Raiders as the year started out…Three short months later I was awakened by a shout. Early Monday morning on March 23…Lisha said those four little words. "My water just broke" is what she said…I jumped up in a flash and got out of bed. We packed our bags for what we thought to be a week… Put the dogs outside and cleaned the dishes in the sink. Sixteen hours later our new life would start…Little Eleanor Crosby was born with a broken heart. Nostrils to no where, syndromes, seizures and scans…We gave it all up to God, it is in his hands. Stents in her nose and a heart with a Gortex hose…We thought to ourselves "we have a long way to go." The Lord held her close and helped her get strong…He held us close too as we moved along. Two long months later with a feeding tube in…We were finally discharged and home life begins. Mommy, daddy and baby too…Reggie and Duchesse wondering "who the heck are you?" Four months flew by with one trip to the E.R…Then we were headed back to the hospital with a loaded car. It was time to have Elle Belle's little heart fixed…Lisha and I knew this time that it wouldn't be quick. Twelve hours of surgery and a six inch scar…Fifteen long days later we were back in our car. Home again, home again with tears of joy we sang…Two months later the TV crews came. The story of Elle is what they wanted to hear…And the Wee Dream fundraiser that was very near. Friends, family, golf and great food…It was also Elle Belle’s public debut Money was raised and trips were won…An unpayable debt for all that was done. Three Halloween costumes and a first Thanksgiving too…We stayed at home to avoid the flu. As we come to Christmas and the end of the year…We thank everyone that has become so dear. Prayers and letters from here and there…Simple gestures and calls from those who care. Many thanks for all your prayers and generosity…It means so much to our little family. Thank you Lord for my little baby and wife…Merry Christmas to all and to all a good night! Merry Christmas! Love, The Luphers Lee, Lisha, Elle, Reggie and Duchesse

Thursday, December 24, 2009

9 Monther

We have a 9 monther on our hands!! I can't believe our sweet baby Elle is 9 months old! How time flies!! What is Elle up to these days?

- She is weighing in at 16lbs 12oz
- She is wearing 6-9 month clothes and some 6-12 month clothes
- her favorite word is dada and she talks non stop all day long!
- she has 2 bottom teeth and chews on EVERYTHING
- She took 1 oz by straw during therapy the first time a cup was introduced but since then hasn't really taken anything by straw or sippy cup...but we're still working on getting this little lady to eat by mouth
- she loves her exersaucer, jumper and walker - she goes in town in all of them - my favorite is when she starts stomping those chubby little legs because she gets so excited at whatever toy she is playing with
- we have a roller on our hands - she rolls all across the floor - forget crawling - she is going steamroll her way around!
- she REALLY wants to sit up by herself - when she is lying down she is constantly trying to sit up
- she can sit up for about 30 seconds unsupported before falling over
- she loves to stand up - I think she would rather do that than sit up!
- She still hates her hearing aids and will only wear them for a few minutes at a time!
- she is signing "eat," "girl," and "smart." She recognizes "i love you" but hasn't signed it yet. She just started to wave too - the cutest little chubby handed wave ever!
- she sleeps with us and hates to be alone. Lee and I think it is because she is deaf that she hates to be alone at night - she can't hear anything and gets scared. Generally she has her hand on one of us all through the night - especially when she is trying to fall asleep - she wakes up if we move her hand away.
- She is still a no nap princess. her naps are about 15 minutes and she may take 2 a day if that. although, she shocked the heck out of me the other day and napped for 2 hours (still excited about that one)
- Daddy has the magic touch to get this little one to sleep.
- she is starting to become a little leery of strangers or people she doesn't see everyday. It's pretty funny watching her study newcomers - she stares them down until she is comfortable they are new friends and aren't going to be giving her shots!
- Elle loves her doctors and nurses - she is a ham at every single appointment we have (and we have a lot!)
- so far this Christmas season, she has experienced Hobby Lobby, Wal-Mart and Paper Daisy (stationary store). Each store had her mesmerized. She has never been around that many people before so she was people watching from the comfort of the shopping cart. In Wal-Mart - she was laid out in the shopping cart - one leg propped up on the handle - the other holding her pacifier.
- we are so thankful and blessed by this little princess!
Lee got a really nice camera as an early Christmas present. He has been snapping tons of pics of our little lady...more so than usual which is a lot of pictures!

Tuesday, December 22, 2009

Christmas Outfit # 22

Elle and I had a pretty scheduled day today. We had an 8am appointment here at our house for an evaluation with ECI. The evaluator just came in and watched Elle be her usual crazy self. She has seen Elle 3 times and was thrilled with how she has progressed over the last few weeks. We scheduled appointments for 3 (yes 3) more evaluations in the next month. After all the excitement of having a visitor this morning, Elle fell asleep for a whopping 2 hours. That was a first! I didn't know what to do with all my time! I kept going in and checking on her because I just couldn't believe she was still asleep. By the time she woke up, it was time to feed her again.

Oh but she was in no mood to be fed - she was wild and ready to go! The crazy kid spent an hour in her exersaucer while she was being fed - jumping up and down and hollering at all her toys. I rigged up a little loop to slide her feeding tube through so as she moves around in her exersaucer - her feeding tube moves with her. I know one of these days all her jumping up and down while she is feeding is going to be a recipe for disaster and I will be cleaning baby puke off of everything! When that was finished it was off to physical therapy. Elle is doing great - she still can't sit up on her own yet but we're working on it! From where she was even 2 weeks ago to where she is now is tremendous improvement. One thing is for sure - she has the rolling thing down!

I guess I noticed it on Sunday but Elle really will have her 2 front teeth for Christmas! There is another little fraggle coming in on the bottom!

There is so much to do between now and Christmas day! Elle still has a few more Christmas outfits left to wear so we will be having a few wardrobe changes a few times a day so we get in all her super cute outfits! I was going to share something that happened while I was out Christmas shopping this past Saturday. I was at a store where all 3 people working were men. It's a little store and they take pride in taking a few minutes to talk to each customer. When I was finished talking to the guys (one of them plays golf at New Mexico Military Institute so we were talking golf...) I told them to all have a Merry Christmas. One of the older gentlemen stopped and said "what did you just say?" I said "Merry Christmas." He said "thank you so much for saying that. Where my wife works - they aren't allowed to say that. It's nice to hear that." I told them man that I am a HR manager for a local company and we say Merry Christmas. We even have a big banner on the fence of our office that says Merry Christmas. It made me sad walking out of the store that people are too afraid or prohibited from saying Merry Christmas. From my work background, I understand why places have to do it but we fully believe "For unto us a child is born, unto us a son is given, and the government will be called upon his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace." (Isaiah 9:6) And while it may appear that all of Elle's outfits are the reason for the season - we truly know that Jesus is the REAL reason for the season!

Monday, December 21, 2009

You Better Watch Out

You better not cry

Better not pout I'm telling you why
Santa Claus is coming to town
He's making a list and checking it twice; Gonna find out Who's naughty and nice
Santa Claus is coming to town
He sees you when you're sleeping
He knows when you're awake
He knows if you've been bad or good So be good for goodness sake! O!
You better watch out! You better not cry Better not pout I'm telling you why
Santa Claus is coming to town
Our visit with Santa today was quite the experience. I've learned a few things after our little visit.
1) The American Cookie Company is right across from where Santa is for a reason. Next year I am going to give Santa a cookie and drink when it is Elle's turn to sit on his lap. (I can't take credit for this tip - it's a tip from one of my co-workers and I wish I would have remembered it today!)
2) I'm not going to put Elle on Santa's lap until the picture lady says she is ready. I put Elle on Santa's lap and that would have been the best picture because Elle looked up at Santa and was mesmerized and Santa looked at Elle and was smiling. It was a great moment that was NOT caught on film. The picture lady had to catch up on downloading pictures so Elle was on Santa's lap for a few minutes before they actually snapped a few shots.
3) Next year - I will remember my camera
As I was picking Elle off of Santa's lap, he asked if she had a hernia surgery. He could feel her button through her dress. I told him no - but she did have 2 heart surgeries, a nose surgery and a feeding tube put in all before she was 6 months old...and she is deaf and usually wears hearing aids. He was in shock. His reply touched me - he told me that she is beautiful. I couldn't agree more! Then Santa said something that made me so sad - his Mrs. Clause is battling the end stages of breast cancer. He is taking her to Mexico for her final trip. He was so sad and I couldn't help but feel sad for him too. My reply of "God bless you and your family" just doesn't seem adequate for this poor man and his family. We never know the struggles that the person walking next to us is going through. It is so easy to judge a book by it's cover - it would have been so easy for me to upset because Santa wasn't smiling in his picture with Elle. But now that I know his pain and his personal struggle, my heart hurts for him and his family. I pray that meeting Elle uplifted his spirits a little and he is able to enjoy this time of year with his wife and cherish the time they do have together.

Sunday, December 20, 2009

A Wee Bit Overwhelmed

I think right now that if someone could read my thoughts, I might be committed. Ok - maybe not committed but I would probably be put on some serious medication! My mind is on overdrive! I really need to start making to do lists because my mental to do lists have me going insane! I think the reason this is all culminating now is that in the past, I had my 15 minutes of uninterrupted pumping time 7x a day to sort my daily life out. If I got overwhelmed, I could take a breather for those few minutes and re-collect my self. Now, I'm very sad to say that my quiet time is coming to an end. Although, I am pretty proud of myself for lasting for 9 months - I wish (for Elle's sake) that I could have kept up with her daily nutritional demands but my body + life has just said no more. I'm also not too thrilled with the idea of not automatically burning 600 calories a day. That's a major bummer - especially this time of year! I wish desperately it was November and the month of December wasn't flying by. I can scarcely remember the past week and yet I nothing to show for it (other than a few pictures)!
This is what happens when you leave the room for literally a minute! Elle stuck under the ottoman - she's an explorer!

Elle and Lee playing

Elle and me after we took our family Christmas picture

Our little reindeer all dressed up on Animal Print Friday!
It has been so hard for me to get into the Christmas spirit this year. Really time has just flown by. I didn't even realize it had been a week since my last post! I think the term scatter brain does adequately describe my current state of mind. I just can't get it together - I'm in a fog! And our poor house is suffering the most from my lack of togetherness. Oh my - for the sake of my family - I really need to get it together! One day at a time and one battle at a time - i just need to keep telling myself that over and over and over again!
Please pray for our precious nephew Witt - he is back in the PICU at TCH. That poor little guy and his family have been through so much. We're praying for his complete recovery and for peace and strength for his amazing family.

Sunday, December 13, 2009

All I want for Christmas...

Are my two front teeth...ok - so maybe it's not her 2 front teeth - but there is definitely one little tooth trying to push through. That's right - our little Ellie Belly is getting her first tooth! Her occupational therapist noticed it during her therapy session on Animal Print Friday.

Our little reindeer (even her little socks have Rudolf on them!)
Each therapy session starts off with Yvonne, her therapist, doing exercises with Elle's lips and mouth. She felt it and I didn't believe her when she said Elle had a tooth because the day before - there was nothing there! Sure enough, I felt the little tooth coming in. Our little baby is growing up! Since the therapist from the swallow study said to bypass using the bottle and move right on to a sippy cup, Yvonne worked with Elle and a cup that had a straw. At first neither one of us though Elle would do good at all. I would have though that a straw would be so much harder to drink out of than a sippy cup. Elle proved us wrong! She took to the straw and kept drinking until almost the full ounce from the cup was finished! It was amazing - she hasn't taken that much orally since WAY before surgery. It was so encouraging to see her take the formula through the straw. As Lee put it when I called him after the therapy session, we've been praying for this moment for a very long time! When she first took the straw, I'm sure the entire hospital heard us as Yvonne and I were screaming in delight!

video

Please disregard my very high pitched voice! I was so excited for our little Elle Belle.

The weather in Houston has been absolutely disgusting the entire weekend. It hardly put us in the mood to decorate our house...plus...it is so hard to leave Elle even to go into the front room or outside to decorate. She loves to roll around on the floor between the dogs and we just love to watch her!

Thursday, December 10, 2009

Swallow Study

Elle had her second swallow study today at TCH. It went extremely well and put to rest some of my fears. Ever since surgery, she hasn't taken a bottle - at all. She may take 10cc by mouth and the rest she gets through her feeding tube. I was worried that being intubated for a little over a week had caused some damage to her throat that was hindering her swallowing. Thankfully, the swallow study showed that Elle's swallowing is great. She isn't aspirating (liquid or solid going into her lungs) which is a great thing. The therapist did note that her tongue is hindering her ability to eat - take a bottle - breast feed. She thinks that once she gets her frenlum snipped, she will be able to eat a lot more. Elle is exhibiting all the signs the therapist looks for - she started to eat the shoulder straps in the seat she was sitting on, she was holding her pacifier in her mouth, she was eager for the spoon and eager for the bottle...it's the ability that needs some work. It was so reassuring to hear that she thinks Elle is doing good for what she is working with. In her exact words "I've never seen a tongue more restricted." She suggested that we just skip the bottle all together and move to a sippy cup. She said that Elle is old enough and her swallowing is good - so we are going to give that a try along with continuing with baby food. Yeah for progress! When they were finished with the study, Elle was a mess! The barium they used for the x-rays was all over her! The therapist requested a picture of our little Elle Belle to use for a presentation. She thought Elle was just the cutest little girl. Of course, we do too!

After the swallow study, I had to pump so we headed to the milk bank. Elle was talking up a storm! I love that little voice and big smile!

video

When we finished there, I was starving so we went to the food court at the hospital. By this time it was after 2:30pm so the place was empty. In one area of the food court there is a water wall you can walk under. Elle was mesmerized. She was such a great little patient today!

Wednesday, December 9, 2009

A Perfect Nightcap

For a nursing mother....
Mexican Hot Chocolate
1 cup fat free milk
1 package of hot cocoa mix
1/4 teaspoon ground cinnamon
1/4 teaspoon vanilla extract
Heat milk to boiling and pour into mug; stir in cocoa mix, cinnamon and vanilla extract...yummo!!

Full of Wonder

Last night Lee and I loaded Elle up in his truck and headed to the nursery to buy our Christmas tree. Elle was mesmerized! Not only was it one of her first trips out of the house other then to the doctor, but we also went at night. She was mesmerized by the lights and the trees and the other people she saw walking around. It was such a fun experience- even though we were in and out in less than 30 minutes!

Monday morning I took Elle in to see her pediatrician for a follow up from our ER visit. She decided to take Elle off the tamiflu since it causes upset tummies in a small percentage of children- Elle is in that small percentage and that was what was most likely causing a lot of her vomiting. Since I stopped giving it to her on Sunday night- she hasn't thrown up. She still has a runny nose and cough but who doesn't this time of year?! It doesn't help that we live in a city where it snows one day and then is 78 the next! Monday afternoon we had our second evaluation with early childhood intervention. Four (yes 4) therapists showed up to our house to observe Elle. Sure enough, in true Elle fashion- she hammed it up big time. They were all sitting on the floor in our den and she was rolling to each of them- trying to eat their paperwork and smiling and talking to each of them. She talked the entire 2 hours they were at our house. At the end of the evaluation- they went over their observations of Elle. For the most part- she is functioning around the same age as a 5-6 month old (which we already knew)- however, her language development is right on target for her age! Sunday night we heard her say a very pronounced "dada" and she now talks in octaves. Her voice will get high and then low and then loud and soft. The therapists all said this is wonderful! Of course, Lee and I are super excited about her saying dada. We think we heard it for the first time on Halloween night but hadn't really heard it since. For the past week she has been talking in high pitches and then on Sunday- there was no mistaking her saying dada. It just amazes me at the progress she is making- it makes me full of wonder and delight!! I delight myself in the Lord and know what he is capable of...everytime I see the smiling, happy face of our precious Elle and see how far she has come! Glory to God!

Saturday, December 5, 2009

Life Is Better in the bathroom

We haven't dug all our Christmas decor out yet - but I am seriously thinking of re-doing some of our decorations after looking at all the beautiful Christmas trees on Kelly's Korner. I absolutely love her little touches of animal print she has on a few of her trees (she has 4!). My obsession with Elle and animal print is actually quite funny because I personally don't wear anything animal print unless they are accessories - most likely shoes or purses. I had a few too many bad animal print choices in my younger years that have haunted me to this day.

Elle all bundled up in her animal print and ready for the snow!
Elle and I spent Animal Print Friday waiting for the snow that was supposed to be coming in to Houston. It snowed in Houston alright - but hardly any of it came to our area of town! I was super bummed!! It snowed a little in our area of town but didn't stick to the ground. I canceled Elle's occupational therapy for Friday because she still has a cough. It was more precautionary than anything else. The only appointment we had on Friday was for her second RSV shot. After getting her shot, we headed home and watched the "snow" for the rest of the day. Elle is continuing to vomit which makes me so scared. Last night, between feeds - Elle started to cough so Lee picked her up. She started to gag and make those horrible puking noises and then proceeded to puke up and gag on snot and mucus. It was horrible. She was crying, Lee and I were worried - just a bad situation all around. This is all probably tmi but it transitions into how we spent today. This morning Lee and my dad left early for a training seminar with the dogs. Vickie was going to watch Elle while I went to a baby shower for my cousin's future bride. Almost all the way through her feed this morning (after I had given her the tamiflu) she threw up. I stopped the feed, wiped her all up and then re-started the feed. fifteen minutes after she finished, she threw everything else up. I cleaned her up and stopped her crying and then about 15 minutes later she did the whole puke on mucus thing again. Scary! I ran her to the bathroom and started a warm bath and scrubbed her down and wiped her face off with a warm wash cloth. My poor little baby! Vickie walked in as I was trying to get her dressed for the day. Elle was almost inconsolable. She is hardly EVER like that - in fact - the last time Elle acted the way she was acting this morning, we wound up in the emergency room with fear that I had pulled her tube out of place. Vickie was able to calm Elle down while I ran up to the pharmacy to pick up some of Elle's meds and to talk to the pharmacist. He was such a nice man and spent 30 minutes with me going over possible reasons for Elle's continuous puking and helping calm me down with reassurance that she will be ok. While I was gone, Vickie (and Meme and Granddad - who were at our house by this time) had Elle in our guest bathroom with the shower on hot - letting it steam up the bathroom - trying to unstuff her little nose. Elle spent a majority of the day in the bathroom. At one point, we even put down a blanket and she and I napped in there. Life was so much better in the bathroom because as soon as we would take her to any other room - the crying and carrying on would begin again. After my visit with the pharmacist and a emergency phone call to the nurse line for our pediatrician - we got a game plan together with how to battle Elle's puking and thankfully, she hasn't puked at all since this morning. By this afternoon, she was rolling all across the den floor and you would have never even known all the events of the morning. Needless to say, I couldn't leave her to go to the shower and am still in my pjs now as I write this. We're praying that she doesn't throw up anymore today and we will eventually be able to get back on a normal feeding schedule. Motherhood ain't for sissies that's for sure!

Friday, December 4, 2009

Quick Question

For those of you that have children with feeding tubes, how do you keep them still during the feeds? Elle is a wiggle worm and I can't keep her still for the 1.5 hours that it takes for each feed. She also has pretty bad reflux so I can't just let her roll around on the floor or else that is a guaranteed puking rally. We've tried propping her up on the boppy - elevating her head on pillows - using her sleeping wedge as an additional prop - but no matter what - she wiggles her way down and starts rolling around. I need something I can strap her in to but will still be comfortable for her. We've tried her stroller - reclined back and that was ok and my next idea is to put her in her high chair - but I don't think she will last in there for the entire feed. My nephew has a nap nanny and I've found a few used ones on ebay and craigslist that might be of some interest to us.

Another heart mom told us about the AR Pillow but I haven't talked to her in a while to see how it is working for them.

Any suggestions or ideas on how to feed our little wiggle worm?

Thursday, December 3, 2009

headed home

After an exhausting night at texas children's- we are headed home. All tests came back negative for any types of viruses which was such a huge relief. Drainage seems to be the culprit of all the puking so we are slowing her feeds way down until the drainage clears up. Her heart is good and the cardiologist said she looks fantastic. Elle didn't sleep much while we were at the hospital so I'm praying she will sleep somewhat peacefully for the next few hours. Thank you for all your prayers!! Elle belle will be back to her crazy little self in no time!

Wednesday, December 2, 2009

sick little elf

We are on our way to the hospital right now. Our little elf is under the weather. She woke up this morning with a 102 fever. This coupled with the fact that she didn't sleep at all last night because her nose was so stuffed up led us to call the on call cardiologist. He told us to make an appt with our pediatrician to test for flu and other things. Thankfully I was able to take elle to her pediatrician at 10 and even though her flu test came back negative- she decided to start her on tamiflu. We came home and no sooner had I given elle the medicine did the puking rally start. I waited a bit and began her feed and once again- puking rally. She kept down about 100cc of the 210 she gets. Thankfully she fell asleep and slept for several hours before her next feed. Just like before, 10 minutes into the feed- puking rally. When Lee and I were giving her a bath to wash all the puke off- we noticed that her hands were really blue. Her arms and legs had been splotchy all day but this was a first for them to be blue post surgery. I called the cardiologist on call and since she has only had 2 wet diapers today- he is more concerned with dehydration than anything else- so- here we are- in the car- on our way to the hospital. Of course, the 4 days we aren't covered by insurance- we wind up in the hospital! Lee's carrier is still processing our paperwork to add elle to his plan!! Let's pray they will reimburse us- which I'm pretty sure they will. Please pray for our little princess! I hurt for her and just want her to feel better!

Tuesday, December 1, 2009

Santa's Little Elf

I can't believe it is already December! I decked Elle out in her first of many Christmas outfits today.

The pants are a wee bit snug so I don't know if they will even last the month of December! Now that she is getting half milk and half formula - she has gained a lot of weight. It also helps that her heart is functioning properly now so her little heart isn't pumping nearly as hard as it was before surgery.

Elle and I had a pretty low key day. We did have big plans to go to my favorite resale shop and load up on clothes for her but it was too icky outside to do too much. We spent the day doing her exercises and listening to Christmas music. She was more entertained by the bow on her shirt than anything else. Since she is growing so much, her thumbs now get stuck inside her pacifiers! - it's like a perma - paci! I wish I could say that I am super productive during the day - but that is just not the case. Pre Baby - I had grand plans of having a clean house, with dinner always prepared for Lee and a clean baby already in pjs by the time he got home. I must have been delusional during my pregnancy because none of that happens now. Elle is a handful! She's not a bad baby - she just demands a lot of attention. I long to be the type of wife/mother that does have a clean house and dinner ready for my hubs. I pray that nightly - for the Lord to guide me in becoming a great mother and wife and to give me the strength to change into the person I want to become - the person I wish I was. After writing that- my prayer should really be for Him to mold me into the type of person HE wants me to be! I even made a list of rooms in our house and what days I would clean them. I've already gotten off track and it's only Tuesday. It's all so overwhelming! I will say that I am super envious of moms that have it all together. One day....one day...
This afternoon I took Elle to physical therapy. She is really making progress and doing so great. For her reward today for doing so well - she got to experience the ball pit. It was pretty awesome if I do say so myself. Michelle, her therapist, held her while she kicked her little legs and sat there in awe of everything that was around her. I snapped a pic and will upload it later when my phone decides to start working.
I am super excited about a phone call I received today from the Texas School for the Blind. Because of Elle's coloboma in her eye and because she is deaf - she qualifies for deafblind services. I'm not too sure what it all entails yet - but the ladies I spoke with today were so nice and so helpful. It was so refreshing to hear people that were willing/wanting to help after I spent the afternoon yesterday on the phone with a lady from the Department of Age and Disability Services. It is so discouraging to talk to someone on the phone who is so disdainful and difficult to communicate with when all I want to do is help my daughter. Ugh! I just want what every parent wants- whatever is best for their child!