Pizza Night!!

In response to an episode of Caillou Carson watched last week during one of the many snow days he had, we mixed dinner up a bit. All Carson has been talking about since seeing Caillou and his friends make pizzas with toppings in the shape of spiders and flies, is making his very own bug-filled delight. After Al came home from work yesterday we packed up the boys and headed over to the store for some grocery shopping. I decided to surprise the boys and let them pick out all of their own ingredients for baking pizzas! Carson was "super excited" and in no time he was calling himself Caillou and Eli, Rosie (Caillou's little sister!). They had a blast going through the grocery store pretending to be television characters and choosing what they needed to make pizzas. We ended up with black olives for spider and fly bodies and almond slivers for the legs. They insisted on a giant bag of cheese because then the spiders and flies would *stick* better to the pizza and not escape in the oven. We came home, unloaded our supplies, washed our hands, and started putting together pizzas like only little boys know how.



It was one of the best times we all have had making dinner in a long time. Al and I let them do everything themselves. Carson helped explain to Eli that the sauce went on the pizza crust and then the cheese. Seeing the different ways they each made their spiders and flies was fun too. They decided it was time to cook the bugs and eat so I popped their masterpieces into the oven (with a warning from Eli not to burn myself), and 10 minutes later the boys were gobbling down their dinner. See......watching TV can be good for kids.... :)

Semi - Speed Racer

Instead of spending my rare free time while the boys are napping today cleaning the house and getting dishes done, I played on the Internet and found this test. It is fun and had the added bonus of boosting my bragging rights when competing for the "Fastest Typer in the House" award***

How fast are your typing skills?

71 words

*** this award does not actually exist but the verbal boasting and bragging may ***

Profiler--updated

I was re-organizing my computer photo albums this past weekend in between work shifts (yes, I'm back to work...post on that later) and chasing the munchkins around and found some striking similarities in past pictures. Carson and Eli definately look similar from the front but their eyes are not only different colors (C-blue, E-hazel), but different shapes as well. Then in almost every profile pic I saw from Carson's earlier days I saw Eli's profile staring back at me. Here are two pics from the boys taken when they were both 29 months old.

Carson

Elias

After reading Billie's comment this morning, I decided to add a baby picture of myself to show everyone who the boys look like instead of just telling you. What do you think....do they look like me?

Me

Happy Valentine's Day!!

I have a lot to update on but for now I will just post two Vday pics from my two sweethearts. I'm being spoiled by construction paper hearts, incredibly tight hugs, and millions of kisses. This is what life is all about. What a truly blessed woman I am to have three amazing boys to love and to love me back!

Happy Valentine's Day!!

It's a WRAP

Eli had his esophageal manomatry testing today at Childrens as a follow-up to his impedence probe from the middle of December. The poor little man cried and I don't blame him. The tube for the probe was an 18 Fr (about the size of a pencil in diameter!) and he kept saying, "I don't want the tubie in my nose". I felt like the worst mother in the world. We made it through the 1.5 hours of testing and his motility team gathered the important information they were searching for. He definately has a delayed swallow with both liquids and solids but it looks like his motility all the way through his duodenum (the upper portion of your small intestine) is okay. With solids Eli cannot form a single bolus and swallow. He delays, forms 3-6 small swallows, and then takes forever to get them all down. This is leading to aspiration. He usually can get his liquid down in one bolus but the swallow is delayed.

I left the appointment trying to hold back tears so the boys didn't think mommy was crazy or that anything serious was wrong with Eli. I knew this moment was coming but it was SO HARD to actually HEAR it from the doctor. After compiling Eli's impedence probe results that did show aspiration with his reflux (yes, I did say reflux), his decrease in respiratory status since the early fall, the upper GI that showed no evidence of his fundo being intact, and the results of his esophageal manometry today......they are recommending Eli get his Nissen Fundoplication re-done as soon as possible. :( :( :( :( :( I knew those words were going to be spoken months ago. I knew Eli was refluxing again. I knew Eli's lungs were getting worse again. I knew Eli was choking, coughing, and wheezing. I knew I didn't want to ever hear those words again.

But I did. And it is a sad truth. But a truth we had to deal with because there is nothing left to do. Why does this have to be so hard? Another 5-6" incision down his abdomen through already scarred tissues. His surgeon will have to take out the mesh that is holding his abdominal wall together from the incisional hernia that developed after his first Nissen fundoplication surgery. Will they have to move his feeding tube site again? How will he react to anesthesia this time with his respiratory comprimise? He almost died from FTT after his last fundo, will it happen again?

All these questions and more won't stop running through my head. I just want to make everything better. But unfortunately a hug and kiss won't fix it all this time.

Get out your tissues....

... and go over to Bread Crumbs in the Butter and read this post on a mother's love for her children. It is beautifully written, touching, and yes....it might make you cry and go hug your kiddos even if they are already in bed for the night.

I am continually amazed at the amount of pure love I have for Carson and Elias. No one can prepare you for it. Explain it. Describe it. Until you have those perfect little human beings to call your own. Your children. Even when they aren't acting so perfect ;)

I love you boys. Forever and Always.

Being a mother has brought so many emotions from my own adoption up from the basement of my mind. I can't imagine how hard it was for my birth mother to make the decision to give me up for adoption because she knew she couldn't provide a good life for me. Does her heart still ache like a mother who can't hug her child? Or has she long since forgotten that 7lb 4.5oz baby delivered on February the 25th? The love my own mother has for me always astounds me as well. To wait for a child for 11 years through infertility, surgeries, and adoption processes is a pain I will never know or want to know. I can't imagine the emptyness longing for a baby and the overwhelming joy when that baby finally enters your life. My mother gave me a poem when I was young about adoption. It is one of my favorite poems and most treasured gifts. I believe the message holds true because a mother's love is endless and unable to be contained.

Not flesh of my flesh
Not bone of my bone,
But still miraculously my own.
Never forget for a single minute,
You didn't grow under my heart
But in it.

Feeling Lucky?

Okay, I must admit that I usually don't do these types of *tests* but this one over at DisappearingJohn RN caught my attention. Who doesn't want to know what color their lucky underware are? Well, since my lovely surgery is keeping me out of commission, I decided to find out for at least a little bit of fun. Check out my results and then find out your own lucky shade. I think the description matches me almost perfectly and Al agrees. Funny how quick internet quizzes based on a few questions can do that.

Your Lucky Underwear Is Red

You're confident and bold, and your lucky red underwear will only make you more sure of yourself. You have a great zest for life, and you tend to take on impossible goals - and succeed. When it comes to love, it's hard for you to take the time to open up. You're too busy conquering the world. So if you're looking for a little more romance, put on your red underpants. And see where their passion takes you!

What Color Is Your Lucky Underwear?

The end of a Great week

My mother in law just pulled out of the driveway to make the long drive home to Tennessee. She graciously took off an entire week of work to come help out with the boys while I recovered. Carson and Elias of course enjoyed every minute of Granny being here and ate up all the attention. They played trains, trucks, Play-Doh, firemen, make believe, made crafts, and did all kind of other fun little boy games. Even after much arguement from me and Al, she still did all the dishes and laundry in addition to help maintain the peace (or as much peace as we can have in our house). I basically felt like a lazy, couch potato which is pretty much what I have to be according to my post-op surgery appointment. I am only allowed to walk to and from the bathroom and the dinner table. Thank God for my wonderful MIL.



Carson burst into tears as soon as Granny walked out the door. He was an emotional wreck. You would have thought the poor kid's doggie had died. Following a long talk about how it's okay to feel sad when you miss someone and that Granny will be back again, Carson finally settled down and started teasing the crap out of Eli. Semi-normalcy in our household. Great. All joking aside, we will truly miss Mom and can't thank her enough for coming up and helping us out when we needed it. Thanks!

Five for Fighting

Please take a few minutes out of your day to stop by and watch this video on autism awareness. It will help raise money for autism research by just watching or you can choose to directly donate.

So many families are impacted by autism in this country and around the world that do not get the services needed for their children. Austism and spectrum disorders are becoming more and more frequently diagnosed in preemies, especially micropreemies. Unfortunately this is one of the areas that the neonatologists don't mention in "the talk" regarding possible long term effects of prematurity. Many parents of micropreemies today are not only finding that the horrid "catch-up by age 2" fantasy that most neonatologist and pediatricians feed us in the birth and NICU days is a blatant lie, but that neurological diagnoses like Autism are disproportionate in our children's population. We need more answers. We need more research. We need more services. We shouldn't have to fight tooth and nail to ensure our children get the appropriate medical and mental help to function and thrive.

I thank my little sister for working hard everyday with austic children. She is an inspiration to me as well as the families she touches each and every time she helps their beautiful children.

Rectus Abdominis Endometriomas -- BENIGN

All three masses (yes....two more grew since my MRI on 12/26) were BENIGN!! My surgeon had to take a lot more muscle out than he has anticipated due to the extra masses. The pathology came back today and all three were rectus abdominis endometriomas which mean they were a tumor growth of endometrial (uterine) tissue specifically confined to my abdominal muscle. There are different therories on why an endometrioma occurs including seeding from a prior abdominal operation or translocation of endometrial cells through the lymph system. Since I have had an emergency c-section under general for Eli's birth, a laparoscopy, and a complete abdominal hysterectomy, I definitely have the surgical history to invite endometrial tissue to spread. Unfortunately, according to a study in the British Journal of Radiology on rectus abdominis endometriomas since they were first described surgically in 1993, "Rectus abdominis endometrioma, wherein the endometrial focus is solely confined to within the body of the rectus abdominis muscle is rare and sparsely reported in literature with only 11 new cases since it was first described". I am sure there are more cases presenting in the literature than 11 with endometriomas confined specifically to the rectus abdominis muscle but research shows they are "highly unusual" and "very rare" occurrences. Leave it to me to develop a rare medical complication. Time to play the lotto :)

All joking aside, I am overjoyed that my masses were not malignant. Cancer is a scary word and disease. I have been in a state of haze in the past month worrying about all of the what-ifs of my future. Soft tissue sarcomas of the abdominal wall do not have great morbidity and mortality rates and having that possible diagnosis looming in the back of my mind (or in the front on some days!) was crazy at times. The pathology of my masses showed large levels of fibrotic tissue surrounding each mass. I haven't been able to talk to my surgeon specifically about the patho report but the fibrosis should not mean there was any desmoid tumor development at all. I can't wait to go to my post-op appointment on Wednesday and get a copy of my patho report and be able to ask questions and see what my long-term prognosis is. My surgeon did warn Al that I have a "extremely high risk" of herniation due to the large amount of muscle he needed to remove. I know prayers from so many people helped me get through this with a positive outcome and I will pray that I don't herniate and have to go under the knife yet again.

As far as recovery goes....things have been interesting. The whole left side of my abdomen is TIGHT. I am sore and can't move much at all. I have almost no core muscle strength for lifting my left left or trying to sit up/down. I can feel the muscle defect to the inside of my left hip and even through the swelling I can see that both sides most likely won't match up once I'm healed. It's a small price to pay though. My incision is about 3+ inches long vertically and about an inch to the left and down from my belly button. Al is taking wonderful care of me and I am living on the couch downstairs during the day and in bed upstairs at night. One trip of stairs each way per day. No more...I can't take it. So far I do have to say that it has been different kind of pain then my hysterectomy with less aching and more direct pain. Everything is connected to using your darn ab muscles!! The boys are loving on me and coloring me pictures to make me feel better (which of course does!). Thank God for Al's laptop or I would feel completely disconnected. I miss all of the babies at work and the amazing people I have the privilege of working with. Hopefully recovery will go smoothly and I will be back to health and work in no time.

Thanks again for all of the prayers and well-wishes. They worked! I'm home and healing and my masses were BENIGN!! Oh what a day!

Slice and Dice

Tomorrow morning I have to be at the hospital at 7:15. Bright and early. I only wish I could grab a nice raspberry white chocolate mocha from Starbucks on my way :) Too bad for that pesky NPO thing! Working five 12 hour shifts in the past six days definately helped keep me busy and keep my mind off of this surgery. I got to love on the babies at work and help nurse them into health. Seeing the care and concern my co-workers and families from work have for me was really touching. I will miss them all so much! I hope my recovery goes smoothly and I can be back to work in the NICU as soon as physically possible. But I am NERVOUS. N.E.R.V.O.U.S.

I remember all too well the recovery from this surgery. It was not fun then and they didn't even cut through muscle. This time they are cutting all of my muscle and the tumor OUT. Plus that pesky little "C" word won't stop lurking in the back of my mind. Al is going to want to strangle me (along with my nurses at the hospital I'm sure) until the pathology report is back post-op. Waiting for medical results is not something I'm good at. Neither is not knowing all of the exact details of an operation or outcome. Unfortunately I have to do all three in this situation. Life and God are teaching me through this trial and I am sure one day I will look back and be able to use these feelings in my work or life to help others. At least I hope so.

I most likely won't have an update until I am home from the hospital in 2-3 days because I don't think they have added wireless internet access there yet. My darling boys already have plans to make me "beautiful pictures" at school tomorrow and then bring them to the hospital to "make mommy's surgery boo-boos feel all better". God, where would I be without those two bright lights? Al is being great and holding me together and keeping up the all the boys' stuff. He is going to be one busy man in the coming weeks when I'm out of service. Thanks for all of the prayers and well wishes. They all mean so much. Give all of your kiddos hugs and kisses and I'll update once I have news and am home from the hospital.

Feeling like a Bad Parent?

This post from Finslippy will brighten any bad parenting day you may be having. Stop by but don't drink anything while reading each and every story and comment....I'm not responsible for any accidents if you do :)

Some days we just need to know other parents out there have those moments [and much worse] too!

The 3rd Degree and Other 2008 Happenings

Well, the new year has certainly been a busy one for our family. The boys have spent loads of time enjoying their gifts from Santa and all of our friends and family. Al and I have been tripping over trains and trucks for two weeks now. Work has kept us out of the house but having the opportunity to care the patients and families makes time spent away from the boys a bit easier. I finally got around to taking down all of the Christmas decorations on Monday before watching our poor Buckeyes loose to LSU :( Carson and Eli were sad to see the Christmas tree go away and my heart was breaking watching the game! We also have been blessed with several snowstorms over the past two weeks (in addition to absurd 70 degree weather and severe storms for a few days). C and E perfected their snowball techniques and seem to catch me off guard whenever my back is turned. Sneaky little men they are growing into.

A few sore spots in 2008 have also popped up in addition to all of our good times. Eli ended up with 2nd and 3rd degree burns on three of his fingers on his right had this past Sunday. We were at my parents' house and he touched the hot burner on the stove right after I took the tea pot off of it. He didn't cry once and calmly told the ER doctor that he "shouldn't touch the hot stove, only [his] playdough stove". I have been scrubbing the burns daily with soap and water, putting neosporin on them, and doing ROM since the burns are across his knuckles. He doesn't seem to notice any of it and is going about life as usual.

Carson's little rat also kicked the bucket this week. Wednesday Al and I were leaving to pick up the boys and I noticed Snow wasn't looking so hot. She looked deflated. Snow went to "doggie heaven" as Carson put it, shortly afterwards and when Al and I picked up the boys we told Carson the bad news. We gave him the option of getting a new rat or just sharing Eli's rat, Storm. He, of course, decided to got straight to the pet store and pick out a new rat. Our newest family member could be an even whiter clone of Snow appropriately named Blizzard by Carson. Storm and Blizzard are getting along well and Carson is healed from his grief.

I also have some bad medical news. I will be having surgery next Wednesday, 1/16. I have an abdominal wall tumor which is through my rectus abdominis muscle. They do not know what the tumor is but possible diagnosis are endometrioma, desmoid tumor, and soft tissue sarcoma. They will have to do a full thickness, wide, aggressive excision with >2cm margins due to the possibility of malignancy. I should have the pathology back within 48 hours. They may need to do a mesh graft of my abdominal wall due to the size of the muscle defect after the tumor is removed. They do not know how much tissue will need to be taken until they get in there and see how much it has grown since my MRI on 12/26. Wish me luck and pray that my recovery is fast and that it is not cancer. I need to get back to my family and my work as soon as possible.

Well, that is a wrap-up of 2008 so far. I have tons of great pictures to post but I need to upload them to my computer first. I have Sunday off of work so hopefully you will see some bright, shining Carson and Eli pics then.

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!