A million presents!

Christmas morning I awake to hear footsteps to two small boys creeping UP the stairs and little voices whispering.


C- Shhhh Eli, it's not daylight outside yet and mommy said last night that we couldn't get up until daylight. Just hold on a few minutes and then we can wake them up.

E- Carson, I want my presents now! Can we get mommy now?

C- No Eli....be quiet. It's not time yet. We have to be quiet and watch for the sun.


Enter me.......


K- Boys, did Santa come last night and bring you presents?

C & E- Yes, yes, yes!


The boys come running into our room and jump onto our bed. Al is still most of the way asleep and groggy but the boys are W-I-D-E awake!


C- Santa brought a MILLION presents mommy! You should see them. There are so many more than last year. We must have been REALLY good!

K- He did? Wow....you didn't open any did you?

C- No, I woke up really early and went downstairs. I saw all of the wonderful presents and was so excited. I looked at them for awhile and then was really sneaky and went upstairs. I got down beside Eli's firetruck bed and whispered in his ear that Santa had been here and that he needed to GET UP. Then we went downstairs and looked at the presents some more. I could read the names on the presents so I started seperating them into piles for you. Mommy......get up....we need to go open them!

K- Did Santa eat the cookies we left him and give the carrots to the reindeer?

C- Hold on, let me go check.

* He took off running down the stairs and came back in less than 30 seconds.


C- Yes, Santa ate ALL the cookies and gave ALL the carrots to the reindeer! He even drank the white milk we left him in the mug. He must have been super hungry from bringing all of those super-cool presents to us.

K- Yes Carson. I bet he was hungry. Do you boys want to go open presents?

C & E- YES, YES, YES Mommy and Daddy.....can we p-l-e-a-s-e go downstairs now???

K & A- We certainly can.....

Christmas Eve...Is it Time yet???

The boys have been brimming over with exciting all day long and tonight Carson was about to burst. We spent the evening at my parents with Grandma Helen and Papaw Wes. It was relaxing and certainly filling to say the least. The food was yummy and I can't wait to go back tomorrow for more holiday goodness. Once we brought the boys home Carson got straight to work teaching Eli all of the proper traditions of Christmas Eve.

1.) Get the cookies out for Santa.
2.) Get the carrots out for Santa's reindeer.

3.) Get the special Christmas plate out to put them on.

4.) Get the extra special mug for Santa's milk.

5.) Fill it with white milk this year (last year was chocolate...we must have grown up in our tastes this year!).
6.) Get to work composing the all important letter to Santa.

******BUT WAIT*****

This year my baby, my first born, my Carson wanted to WRITE his own Santa letter. BY HIMSELF!!!! When did my baby grow up into a writing, spelling, articulate CHILD????

I am a proud but shocked mommy and one of my mommy jobs has been officially taken over by my very capable 4.5 year old boy. What a moment.

Christmas Meme

I picked this up from Laura over at Adventures in Juggling. Work has been crazy lately along with the usual hustle and bustle of the Christmas season and blogging has not been on the top of my To Do list. This meme looked like fun and I hope some of you will do it too so I can learn more about your holiday fun. I need a bit of cheer right about now ;)

Favorite traditional Christmas song: "Silent Night"

Favorite contemporary or modern Christmas song: "Rudolph the Red Nosed Reindeer"

Least favorite Christmas song: I like them all....gotta love wrapping gifts and listening to Christmas music!

Christmas song that makes you cry: None make me cry but "Away in a Manger" is sentimental.

Real or artificial tree: Artificial. The boys had fun this year finding the right colored branches to put into the base. Educational and not messy ;)

Favorite Christmas edible treat: All of them! We have had so many baked goods and treats and fudge brought into work and put in the break room that I can't decide which thing to shove in my mouth in that rare 5 minutes I get to myself during a 12 hour shift!

White lights or multi-colored: Multicolored.

How many Christmas parties will you go to this year: Probably no parties, just family get-togethers.

Favorite act of kindness to perform during this season: Giving to charity, helping families get to do "1st things" with their babies in the hospital, teaching my kiddos that giving is so very important.

Favorite sounds of Christmas: Snow falling on a quiet night, the tea kettle singing, the oven buzzing when the cookies are done, Christmas music, the sounds of my boys excitingly opening their presents.

Favorite things to wear: Warm sweaters, cozy slippers, and the arms of those I love.

Favorite Christmas movie/TV special: Rudolph.

Favorite Christmas episode of a TV Series. Ummm......do I have time for tv right now?

Eggnog or hot chocolate: Eggnog, definitely.

Favorite Christmas book: Polar Express.

Christmas books on my “to read” list: Any suggestions?

Peppermint or cinnamon: Peppermint

What’s on the top of your tree: An angel.

Traditional Christmas meal growing up: Ham, my grandma's baked macaroni, cheeseball, veggies, corn pudding, beans, and a variety of yummy desserts.

Online shopping or traditional “go to the store” shopping: Both...

Something you received as a Christmas gift as a child that you still have: A beautiful painting from my late Grandpa Bob.

How many Christmas cards you have mailed so far: None (I'm hoping for New Year's Cards)

Favorite source for Christmas ideas: Listening to people throughout the year when they don't think that I could possibly be thinking of Christmas ideas....very sneaky.

Coordinated/themed or hodge-podge tree decorations: very hodge podge and sentimental. I love each and every ornament on our tree and value it endlessly.

What’s on the top of YOUR Christmas wish list: For my abdominal wall mass to not be cancer and my surgery to go smoothly so I can get back to work and my family ASAP.

Roles you’ve played in Christmas plays/programs: I can't recall but I'm sure I wasn't singing!!

Wrapping paper or gift bags: Wrapping paper....I love it!

When do you put up the tree: The week after Turkey Day.

When do you take the tree down: The week after Christmas.

Do you have a nativity scene: Yes, a precious moments one my Aunt Ty gave me.

Hardest person to buy for: My husband.

Easiest person to buy for: The boys.

Worst Christmas gift you ever received: Some of the White Elephant gifts that I've received over the years....all in good fun though.

When do you start shopping for Christmas: Depends on the year.

Have you ever recycled a Christmas present: The boxes yes.

Travel at Christmas or stay home: Travel if we can make it to TN but not this year.

Can you name all of Santa’s reindeer: Dasher and Dancer, Comet and Vixen, Comet and Cupid, Donner and Blitzen. And I do recall the most famous reindeer of all….Rudolph! (okay, I stole this from you Laura!)

Open the presents Christmas Eve or morning: One present Christmas Eve at my parent's house and then everything else Christmas morning.

Most annoying thing about this time of year: People becoming rude and disrespectful.


What I love most about Christmas: That wonderful twinkle in young children's eyes when they think about Christmas and "baby Jesus" (as Eli and Carson say). It is all just so pure and innocent and exciting to them. I wish that wonderment never wore off.

Leave a comment if you play along so I can check out your answers.

Frosty: by C & E

The boys had an amazing time the other day with my dad outside in the snow. Carson, Eli, and Bob Pop all worked hard and built a huge snowman in the front yard. Gigi was busy snapping pictures of all the action including a few butt baring shots of little Mr. E. He had an accident earlier in the afternoon in his pants and the only extra pair available was too big so Eli's little tushy kept sneaking out of them during the snowman building process. It made for some good pics and fun memories though. Enjoy my two snowmen and their Frosty.

Some answers.....more questions

We are home and catching up on some rest after a long two days at Childrens. Eli did very well through it all and flirted with all the nurses and doctors like always. The nurse was having trouble placing the probe for his impedance study (like an NG tube) because Eli was fighting her so I stepped in and did it. Thankfully Eli wasn't mad at me at all and said, "Thank you mommy. Can I have a hug?" afterwards. We had a "constant" for the 24 hours of the impedance study to record every time Eli had any symptoms like coughing, burping, retching, gagging, choking, or vomiting. It was amazing how many times Eli coughed during those 24 hours. The doctors were right.....we do tune it out because it is just such a familiar thing at our house that we don't even notice most of the time that Eli is coughing. Eli called his NG probe his "tubie" and didn't mess with it the entire stay. I was quite impressed because most kiddos yank them out any chance they get.



We went down to the sleep lab around 5:30 Wednesday to get Eli wired up for his EEG, ECG, O2, CO, breathing movement, and sat monitoring. Eli could not figure out what was happening but he loved looking in the mirror at all of the new wires his head and body were accumulating. He held on to my compact for half an hour just staring at it all. Al left to go pick up Carson from my parents around 7:00 and Eli and I settled in for bedtime stories. He fell asleep around 7:30. Unfortunately he kept waking himself up every 15 minutes or so for the first 3 hours coughing. He would cough, wake up (sort of), look around, see me in the other bed, see the constant by the computer, look drugged and half asleep, and then pass out again. The little many snored most of the time too. In the morning they woke us up at 5:15 to start getting all of the leads off and ready to go back upstairs to our room. He did great throughout the whole ordeal. We had great constant and nurses but the day took forever!!



By 3pm they were ready to pull his impedance probe and send the results to his GI/motility specialist. His normal GI doc stopped by to chat and play with Eli for a bit in the late afternoon and by 6:30pm his motility doc and her team came in to share their preliminary results. We were out the door and home by 7:30 to see our buddy man Carson.



The results were okay.....

Impedance Study:

1.) No acid reflux, only non-acidic reflux episodes.
2.) After reflux episodes, E's esophagus empties very slowly.
3.) E coughs A LOT and they believe it is associated with his reflux.
4.) The coughing is most likely tied to aspiration.

Recommendation- Continue with the 15mg Prevacid Solutabs. We will be going back for more extensive motility testing of Eli's entire GI system in 2-4 weeks (as soon as scheduling permits). They will focus on his esophageal motility especially with reflux episodes. They believe this slow esophageal motility after refluxing could be contributing to his aspiration and declining respiratory status because the refluxed contents just sit there at the esophageal/tracheal junction. They said another option could be that the upper GI was somehow wrong and his Nissen fundoplication is not unwrapped, but instead too tight. They will investigate this during his testing in the coming weeks. We will see if fundo #2 is happening post-motility testing.

Sleep study:

1.) No apnea, bradycardia, or obstructive breathing.
2.) No spike waves indicating seizure activities on the EEG.
3.) PLM index of 3, meaning he moves his legs rhythmically at night but not often enough to be classified at a sleep disorder or RLS.
4.) Mean oxygen sats of 94% (YEAH for this one!!!! WHHOOHOHOOO)
5.) 10 episodes of coughing that awakened Eli from stage 4 sleep (the deepest sleep).
6.) 15% of the night slept supine.
7.) 50% of the night spent snoring.

Recommendations: Review the impedance study and evaluate the extensive coughing during stage 4 sleep that is intrusive and interrupting. No oxygen needed at night.

Testing, testing, 1, 2, 3...

Eli heads back to the hospital today for another round of testing. He will be admitted today at lunch and discharged tomorrow about dinnertime. Due to his upper GI that showed no evidence of his Nissen being intact, increasing symptoms of refluxing at night again since late summer (i.e. coughing and restlessness), and worsening respiratory status, they are doing a 24 hour impedance study. This will consist of putting a special NG tube down Eli's nose that has two sensors on it to measure the levels of acidity in his stomach and esophagus. A computer with analyze these levels and the symptoms associated with them and help his GI doctor determine if Eli will be going under the knife again for Nissen Fundoplication round #2. We are hoping to avoid another fundo since Eli did so poorly after the first surgery. It is a large incision (~ 6 inches) and due to Eli's multiple abdominal surgeries and the wire mesh he has embedded in his abdominal wall, it will be complicated and a long time under anesthesia. If it is the only thing left to save his lungs from aspirating his reflux again though, we will go ahead with the surgery. He is maxed out on his respiratory meds and has been on oral or IV steroids almost constantly since August.

They will also be doing a sleep study tonight with Eli. This involves many tests all rolled into one. First they will glue EEG leads all over Eli's head and neck to monitor for seizure activity while he sleeps. Then he will wear ECG leads on his chest and tummy to monitor his heart function and see if he is having any brady episodes like he was during his hospitalization in August. They will put a CO detector on his nose and sat probe on his foot to monitor his respiratory status while he is sleeping. They are looking to see if he needs oxygen at home during the nighttime and to see if he desats during the night. The doctors will also watch his sleep patterns to see if he is following the correct flow of sleep and not having restless or interrupted sleep patterns for any particular reasons. It should provide us with lots of (mainly) benign information.

Al and I will get to stay with him until he goes to the sleep lab and then only one of us is allowed to spend the night due to space purposes. Al is going to head home and have a special boys night with Carson and I will stay at the hospital with the E-man. I hope it is a quick night because Carson's sleep study last spring with not a restful evening! I have worked 68 hours in the past 8 days and am TIRED. Our NICU has been hopping but I don't have to work until Saturday so it will give me some night TLC time with the boys (and my big boy too!). Wish us luck with Eli's testing and I'll try to update tomorrow with the results if I'm not too exhausted.

Boys with be Boys....

Carson and Eli were playing Play-Doh at my parent's house this weekend while Al and I were working when my dad snapped these shots.





Carson is happily smiling with a snotty nose and Eli is, of course, being his mischievous self. Take a closer look at the little man Eli created with his Play-Doh. Anyone know why my child thinks Play-Doh men have THREE legs??

AAAhhhhh.....I see Carson and Eli playing "swords" in the bathroom and cracking thousands of poop jokes in my future. Help!

Turkey Trot 5K

Carson, Al, Keith, Lori, Eli, Brooke, Dad

On Thanksgiving morning in the cold, freezing rain, Al, my little sister, her boyfriend Keith, her best friend Brooke, and my Dad all ran in the Turkey Trot 5K. My mom, Carson, Eli, and I all cheered them on wearing our thick coats, hats, gloves, and scarves. While the enthusiastic people were running, the boys were able to sit in one of the local police men's patrol cars and pretend like they were driving it! You should have seen their smiles.

As for the actual event.....the race started bright and early and everyone did great! Al came in 3rd in his age group and won a trophy and a well deserved turkey dinner. I can't tell you how proud we were of my dad who finished under 30 minutes after having heart surgery and a stint placed this past June. Keith shaved over 5 minutes off his last 5K time and Lori and Brooke crossed the finish line smiling and laughing like always. Carson and Eli ran across the finish line with Daddy at the end and were both beaming with pride for "running" the race. It was a great morning and the perfect start to our Thanksgiving day celebration. We truly have so much to be thankful for this year.

Waiting for the race to start

The gun goes off!

Daddy at the finish line!!

Fire Station Field Trip

November 14th Eli's class got to go on a field trip to one of the local fire stations. His teacher arranged the whole trip because Eli has been talking about being a fireman for the past two months and her father retired from being a fireman a few years ago. Thankfully Al and I were both off of work so we were able to join the class downtown and witness all of the firetruck madness. Eli had a blast and wanted to do everything at the firestation. The guys were amazing and let the kids get into anything and everything they could get their hands on. Miss Catie (Eli's teacher) had her father meet us there since it was his old station and we could not have asked for a better experience. The guys got out the big truck with the giant ladder. The kids got to slide down the poll, spray the fire hoses, get in the trucks, and try on real gear. It was such a FUN morning. The fire chief said we could come back anytime we wanted for an hour or two and let the boys play again.

Fall Leaves and Crazy Brothers

My sister snapped some action pics of the boys today while they were outside playing in the leaves. A cold front is coming through tonight and this is most likely the last day for them to play outside without coats and they had a BLAST. Enjoy the pics of my two munchkins covering each other in leaves and reaching the summit of Mt. Leaflet in the back yard.

Update....good news!

Well, after yet another trip to the ped this morning and more changes to his regimen, we are finally peering into a healthier future (I hope!). His lungs still sound crappy but not as bad. He now has a viral ear infection in his left ear. We finished the Zithromax this morning and will finish the Ceftin tomorrow. Today they decided to bump his Orapred back up to twice a day and add Pulmicort to his list of breathing treatments. They also did a quick Pertussis swab since Carson's preschool has had cases (even though Carson's swab on Thursday came back negative and E just finished the treatment for Whooping cough - Zithromax). We also ran over to get another chest x-ray to compare to his from two Saturdays ago. Thankfully the x-ray looks improved so things are finally going in the right direction. Now we just need to stop wheezing, coughing non-stop, having a mild runny nose, and not eating.

Whew. And it's only the beginning of November!

I am waiting to hear what the pulmonologist has to say when we go on 11-21. Hopefully he will have some answers or at least a game plan to get us through the winter months. For now I am happy Eli is on the upswing of this disaster and that we got by without a long hospitalization. I am definitely going to go lay down and relax while the boys nap since Carson brought me home a cold Thursday and I even missed work yesterday because of it! Thanks for keeping tabs on our sick little man. I have fun pictures to post of Eli with a giant snake around his neck soon. Just let me get some R&R first.

Not much improvement

Well, it has been a week since Eli's pneumonia started and we aren't seeing the progress the doctors hoped for. Yesterday (Thursday) we headed back to the ped for another check-up. Unfortunately Eli still has terrible lung sounds, isn't eating, is acting lethargic, waking all night, coughing, and having fevers on and off. They added Zithromax on top of the Ceftin, Orapred, Flovent, Albuterol, Singulair, and Prevacid he is on already. He ped wants to admit him tomorrow if he is still wheezing badly and not showing improvement from Thursday.

Tonight his fever is 102.9 and his lung sounds are a mix of crackles and wheezes. He hasn't eaten today except for a few small bites of fruit (his fav) tonight after dinner. Bedtime was at 5:30 and Eli hit the sheets hard and hasn't stirred since. I am hoping he turns the corner tonight and will sound better in the a.m. but my nurse/mommy instincts are telling me to go ahead and pack our hospital bags tonight. I work all weekend but Al is off but at least I work at Children's Hospital where he will be. Please keep us in your thoughts so we can stay out of the hospital and kick this pneumonia's butt. I hate seeing my happy, crazy boy without energy and a bad 'tude.

I will try to update tomorrow night on our progress and whether the antibiotics/steriods finally kicked in. Thanks for all the well wishes and comments. You guys are the best.

Pneumonia

Day 4 for little Mr. Eli. After a trip to the ER on Saturday for high fevers, lethargy, and a lovely cough, his x-ray looked oh so pretty. Diagnosis: Aspiration pneumonia and cardiomegaly. Fun times. Sent home with increased Flovent treatments (how can you increase 110mg 2 puffs BID???), Albuterol q2hrs, and the antibiotic Ceftin which is a broad spectrum and should kill just about everything. Monday was still having fevers off and on so we headed to the ped for a check-up. Stats: weight- 28lbs 2oz, height- 37.75". More crackles, sats are *okay*, told to stay on our current regimen and push any and all foods with high calorie/fat that we can.

Last night Eli starts sounding more wet with every cough and his lungs are full of crackles. Then Carson starts throwing up all-night-long. Lovely. Two sick kiddos. Al stayed home this week to tend to the two sickos. They layed around and slept most of the day. When I got home I took Eli to the urgent care to check out the increase in crackles and the nasty, wet cough. They try Atrovent and Albuterol nebs along with some good respiratory assessment. The nebs didn't help and only broke up some of the congestion to INCREASE his wheezing to a beautiful level. The attending hated to put Eli on another round of steriods since he has been on four rounds in the past 2 months but his lungs just were too bad. We are now home on a ten day taper of Orapred (hey, at least it's not Dex this time!) with instructions to see his pulmonologist in two days for a follow-up.

Fun times at our house.

Oh, and Eli is having an impedance study and sleep study to determine if he needs nighttime oxygen and another Nissen fundoplication surgery. I look at my happy, intellegent, coy toddler and know that the outcome of his extreme prematurity could be SO-MUCH-WORSE but it is times like these that I wish I could give him my lungs and take away the struggle to do one of life's basic functions. How I wish I could take it all away and make it better.

New Family Members

Sorry for the long span between posts but work is keeping me busy-busy-busy! Al has changed jobs and the boys are constantly on the move with school. This has made for a hectic October to say the least. I'm going to cheat and update through bullets....

Carson:

* obsessed with drawing and coloring (and quite good at it too)
* going to be the ring bearer in Uncle Aaron's wedding 10/27
* growing like crazy
* eating us out of house and home
* had his 1st post-tube ear infection and it was YUCKY
* has a new best friend at school
* also has a new girlfriend at school....quite serious ;)

Elias:

* doing fabulous in school
* talking up a storm all day, every day...must get it from his mama
* getting taller
* maintaining weight (maybe even gaining a little!!)
* on round 4 of steroids in the past 8 weeks :(
* lungs not so hot
* upper GI was inconclusive for fundo...possible need for a re-do
* impedance study to be done in the next two weeks
* mommy and daddy seeing massive signs of reflux back (coughing all night, retching, yucky reflux face at night, increase in lung issues....all BAD)


Now on to the newest members of the family. Today we took Carson and Eli to get pet rats. They each picked out their own. Carson chose an all white one with reddish-orange eyes. He named her "Snow". Eli wanted a smokey gray one with a white belly. At first he said she would be called Dusty but then Carson and Daddy said she looked like a storm cloud and Eli shouted, "Storm, Dusty Storm". So, Eli's rat is now "Storm". Rats are wonderful pets. Very clean and smart. They are much heartier than hamsters. They don't stink like hamsters, gerbils, or guinea pigs. You can also teach them tricks! I had many rats as pets growing up and loved them all. Our beloved dog Macy took some time convincing when we arrived home with our two new companions but the dog treats we brought her at the pet store quickly convinced her the rats were okay. Here are some pics of our new friends, Storm and Snow.