Growing...Sort of

She's seven! I can hardly believe it!

Fall 2014

Our tiny princess is 42 inches and 40 pounds. She's growing on her own growth curve according to her pediatrician and he's not worried about her size.

She plays piano with both hands in her weekly music class, dances ballet with a sweet and wonderful ballet teacher, goes to swim lessons every other week, goes to physical and occupational therapy once a week each and Classical Conversations (home school group) once a week. She keeps us busy!

Spring 2014

When Julianne is not doing school work or one of her weekly activities, she loves to pretend! Seriously, I have to remind her to tell people that she's pretending when she starts talking about her "children". Otherwise we get some pretty strange looks. Her imagination is HUGE! We love it!


She still loves to sing and is especially fond of For King and Country, Mandisa, Taylor Swift and anything her daddy is singing. Just recently she started enjoying Elvis music! We owe that to Lilo and Stitch. Being an Elvis fan myself, I'm not complaining!

Julianne LOVES dresses, especially Hawaiian dresses, and basically refuses to wear shorts, shirts or pants (unless they're UNDER a dress).

She also started watching the Star Wars movies with Kent and has enjoyed them so much that she just might be getting a light saber for Christmas (Don't worry...she doesn't read this!)!

She is enjoying reading more and more and her favorite books to read right now are the Frog and Toad books.  They're so funny! Really! You should read them!

Halloween 2014

G-tube closure surgery, May 2014

Our last real Julianne update was when she got her g-tube out (woo hoo!!). The hole was supposed to close on its own, but it did not. So, she had a quick surgery in May to close it.  Aside from returning to the ER for pain issues, she recovered easily and has completely ended the tube feeding chapter of her life!!!!!!!!!! Thank you, God!! She's eating well and is totally obsessed with bacon. But, who isn't really?

Julianne sees her Ophthalmologist this Friday and Cardiology again in February.  Medical-wise she's doing great! We are so very, very  thankful! This month marks two years with no over-night hospital stays!

God has filled Julianne's precious heart with love for Him and others and we pray that that will only continue to grow! We hope that her 8th year brings as much joy as the 7th did!

 Julianne, we are SO happy that you are our big seven-year-old and we love you more than you could know! 

The G-Tube Has Left the Body!!

Yup! You read that correctly! After nearly 6 years of having a g-tube poking out of that precious belly, getting hung on shirts, cramping her belly-sliding style, it is gone!! Gosh, I really just can't even believe we're at this point.  It seems like just yesterday I was crying over not being able to feed my baby like "normal", cleaning up a bed full of formula after a pump feeding disconnected in the middle of the night, and stopping gravity feeds because she just couldn't stop gagging and retching! Ok, who am I kidding? It does NOT seem like yesterday! This took a LOOOOOONNNNNNNGG time! It took a lot of work.  It took a lot of therapy. It took a lot of tears. It took a lot of prayer! But on Wednesday, February 5th 2014 we walked into Dr. A's office and told him Julianne hasn't used her g-tube since January 22nd, 2013.  It was a day I thought I'd never see! I used to joke that I didn't want to have to puree her wedding cake and it looks like I won't have to after all! Julianne now eats all solid foods.  No more purees.  The no purees thing started I guess around May-ish.  We started doing solid lunches. Then in August/September it was boom, bang all solid food.  It really surprised me how fast she went from a little solid food to all solids considering how long it took everything else feeding related. God has carried Julianne such a long way from where she started.  We are so very, very, thankful for this huge milestone!!!! Seriously....this is huge.

Julianne was not scared about her appointment at all.  She could hardly wait for February 5th to get here!

Excitement building in the elevator!

Waiting...

 waiting...

 waiting...

 still waiting.

It's gone!!!!!!

 She was so ready for that g-tube to be gone.  But you know what she wasn't ready for?  The gas that gets expelled through that hole now! I'm sorry, but I have no other way to describe it besides "tooting". Yes, her belly is tooting.  I was cracking up laughing. CRACKING UP! Julianne was disturbed to say the least.  "WHY IS IT DOING THAT!!!!"  This continued all day on Wednesday, a little yesterday and only once today. Poor girl...it was pretty funny though. I tried to make her feel better by telling her she's the only person I've ever know who can toot through her belly!! She was pretty excited when the toots returned to their usual location this morning ha ha! She also hates getting the gauze changed, but there's nothing we can do about that.  It's either keep it covered or have gross shirts all day long.  Dr. A said if it is still leaking in two weeks that she will need to see a surgeon to have it closed.  We are praying that will not be the case! Please join us in praying that it will close easily on its own. 

G-tube removal was such a big deal for us we spent the whole day celebrating.

 We went to the mall and she picked out a new dress!

 We met daddy for lunch!

 We rode the carousel!

 We picked up daddy from work and headed to...

 CHUCKEE CHEESE!

Happy G-tube removal day Julianne! 

We love you so much and we're so very proud of you!!

February has, thus far, been an amazing month!!! We have something else pretty unbelievable to share, but you'll have to wait until the time is right!!!! It's good. I promise. :-)

8 Months Old!

Ahhhhhh! It's the attack of the killer baby! (I couldn't resist posting this pic)

8 Months old

Yesterday, Julianne turned 8 months old! She celebrated the occasion with coming closer than ever to finally rolling over! She was so close. I was cheering like a cheerleader...but she couldn't get that big baby bottom over (please ignore the aftermath of the "baby toy bomb" that went off in our living room and also, the toy that you see me toss DID NOT hit Julianne in the head even though it looks like it did...ok, disclaimer complete).


She has one tooth and another one on its way through the gums.

She's been eating sweet potatoes and LOVING them.

Tonight she ate prunes and didn't love them nearly as much.

Julianne currently enjoys jumping and playing in her Jumparoo...


...grabbing her daddy's and mommy's faces, scratching and slapping things...arms, tables, toys, heads...and playing with her toys.

She goes to bed around 8 or 9 PM...

...and has been waking up around 8 AM...

... and takes a short nap in the morning and about a 1 hour nap in the afternoon. The gagging isn't any better, but it isn't any worse either.

The Early Steps Therapists should start next week. She'll have a Physical Therapist, and Occupational Therapist and a Special Instructor. From what I understand, they will each come to our house once a week. Julianne will also be seen by Vision Services. They will come to us once a month.

Today Julianne had a Neurologist appointment. The doctor was very happy with what she saw. She said everything she checked was normal except for the weakness in Julianne's shoulders and upper body. She said that she doesn't feel that is due to a neurological problem because she has EXCELLENT head control. If she didn't have that head control then the doctor would be concerned. The weakness is more likely due to having spent 3 of the last 8 months lying in a hospital bed and then having a Nissen Surgery and not being able to be pulled up comfortably. The doctor did say that she'd like Julianne to see an Ophthalmologist just to make sure that everything is ok with her vision since the stroke.

Julianne does have a suture abscess on her chest incision line, which we noticed on Saturday. Her doctor prescribed some anti-biotic cream and it seems to be going away. This morning I undressed her for her bath and noticed her chest was all red and splotchy around the incision line. The doctor checked it out and said it was a contact dermatitis and prescribed another cream. Its great that Julianne's doctors are all in one building. We were able to stop by the Pediatrician's office on the way up to the Neurologist's office.

Phew, that was a long update. :) Thank you, as always, for all of your prayers and encouragement. They get us through the difficult days and make the wonderful days that much more wonderful. We are so thankful.

Cardiology Appointment

Julianne had her Cardiologist appointment this afternoon. She made everybody laugh with her new nodding trick (she nods up and down as if to say, "Yes, yes, I've heard all this before"). She did fine at the appointment. Julianne now weighs about 18 pounds! Her Amiodorone dosage was increased due to her weight and she came home with a Holter monitor. She has to wear one for 24 hours every so often due to the arrhythmia. We'll head back over there in 2 weeks for an echo.

That's about it! Thank you for your prayers! We hope everyone has a WONDERFUL weekend! We have some visitors coming this weekend and are very much looking forward to it. :)

7 Months Old

I'm HOW old??!!

Yes, Julianne, you are 7 months old. We cannot believe it either! We enjoyed comparing pictures of Julianne around the 19th of every month to today's picture and we thought you might like to see how she's changed as well.

In tummy news...

Julianne did A LOT of gagging/retching today. Its disheartening, but at least we were prepared that this was a possibility thanks to a friend whose little boy has gone through very similar tummy/eating issues. We're hoping and praying it gets better soon. She doesn't vomit anything up because its physically impossible for her to vomit now that she's had the Nissen surgery. That's a good thing, it means there's nothing for her to aspirate. Julianne has a Pediatrician appointment on Tuesday, so we'll definitely be asking him about this. I'll spare you all the details, but we're able to check and see if she's digesting her feedings and she seems to be doing fine with digestion. We're very happy about that!

Julianne has started doing something very cute. She laughs when we laugh. All we have to do is just look at her and laugh (or sometimes not even when we're looking at her) and she'll imitate our laughs! It's very cute! We can never get her to perform on command, so I guess everyone will just have to take our word on it.

Well, thanks for checking in on our 7 month old baby boo! Please continue to keep Julianne in your prayers as we work with her on the feeding issues. Here are just a few more pictures that we took today.

Relaxin' with my daddy

Home Again!

Just wanted to let everyone know that Julianne was discharged from the hospital late yesterday afternoon. We are definitely glad to be back home. :)

Julianne had a pretty uncomfortable night, but we think it was due to some constipation issues.

She still seems to be a little sore from the surgery, but who wouldn't be, right? Tylenol is helping with that.

Now we're just working on a feeding schedule. We're slowly decreasing the amount of time it takes for her to get 3 hours worth of formula (120ML). Its a pretty slow process because she's got one sensitive belly!

Julianne has both a Pediatrician and Cardiologist appointment next week. We're hoping for a good report from both!

Thank you so much for all of the prayers and encouragement. We are continually grateful. :)

1 Day Post-Op

Julianne is sound asleep so I thought this would be a good time to post a longer update.

Julianne is doing well. Yesterday was a pretty uncomfortable day for her. Even with Morphine, she just couldn't get comfortable. She was doing a lot of gagging, coughing, crying, startling and just being restless. By the time we left at about 9:00 last night (you're not allowed to spend the night in the PICU here) she already seemed more comfortable and was sound asleep. She'd gotten some Tylenol, in suppository form, and it seemed to help. We called to check on Julianne during the night and got good reports. She slept all night and started to get uncomfortable again this morning. She got more Tylenol and did well after that. She's spent the day napping and doing some usual "Julianne stuff"... grabbing her mommy's hair, flailing her legs around and chewing on her fingers. She's still a little tired and swollen and, as I'm sure you can imagine, seems like she's sore from the surgery.

At about noon they started Julianne on some Pedialyte through her g-tube. Its running really slowly right now. Since she hasn't had a large amount of "food" in her belly since November, they're starting her pretty slow. It will be increased every 4 hours and eventually be switched to formula. The goal is to eventually get her on bolus feeds. A bolus feed is when she'd get her full feeding all at once, rather than gradually over 3 to 4 hours. With bolus feeds, she'd be fed every 3 to 4 hours rather than continuously, as she has been since her release from Ochsner in November. She'll also begin getting her home medications through her tube today. Her lasix dosage has been upped, so that will definitely help with her "puffiness."

Julianne is expected to spend one more night (tonight) in the PICU and be moved to the floor tomorrow. We're still hoping for her to be discharged either Friday or Saturday.

Other than that, there's not much going on. Thank you so much for your prayers for Julianne. We are always grateful that Julianne has so many people who pray for her and who care so much about her. Please continue to pray for her recovery.

Since I'm finished with the post and Julianne is still asleep, I thought I'd post a few pictures that I haven't had a chance to post:

Julianne had her first play date on Monday. We went over to see my friend, Heather and her baby boy, Sebastion. He will be 2 months old tomorrow! He's VERY CUTE!

Julianne says, "I'll hold you up Sebastion."

"Don't fall over!"

"Uh-oh, you're getting kinda heavy..."

"Oops...I couldn't hold him up any longer."

Julianne playing with her favorite toy...her fingers

"Look! I can reach my toes!"

"Give me that ice cream."


"Dresses are so much fun to play with!"

"You can put me on my tummy, but I'm not going to do anything but eat my hand."

Finally catching the camera strap, Julianne decided to eat it.

Just a few hours post-op

About 28 hours post-op

Out of Surgery

She's out! They just rolled Julianne past us on her way to the Pediatric ICU. She was not too happy. The surgeon said that everything went well, no surprises. They're getting Julianne all situated in her PICU room and then we'll go back to see her.

Thank you for your continued prayers for our little girl!