Julianne's Journey

Disney Pictures (FINALLY!)

2011-12-09T23:20:00.004-06:00

Well, well, well, look who took way too long to post pictures from Disney World! Me! Better late than never I guess. Plus, not posting these pictures has been holding me up from posting Halloween and Thanksgiving pics!

First, a little about our trip:

It was AWESOME! I really feel that we couldn't have gone at a more perfect age for Julianne. She truly believed that was the actual Mickey Mouse, Minnie Mouse, Ariel and on and on. It was such a special week, I get emotional just watching the slideshow. My parents, Kent's parents, my sister, my brother and my Aunt Suzette all joined us at the most magical place on earth!! FYI...the slide shows are kind of long. You didn't think I'd just post "a few" pictures, did you?

The first night we just went to the Magic Kingdom for a little while. On Day 2, we went to Breakfast at the Cape May Cafe where Donald Duck forced Julianne to hug him and her fear of costumed characters was permanently erased! Ha ha! I sure was happy about that one. At this restarant and every sit-down restaurant we visited, the chef would come out and find out what Julianne wanted, then would go back and puree it! They're so wonderfully, accomodating! We spent the rest of the day at the Magic Kingdom, where Julianne fell in love with the spinning Tea Cups.

Day 3, we went to Epcot and she got to see more Characters, celebrate Papa's birthday (my father-in-law) and ride the Finding Nemo ride (another favorite). Later that evening, we went to Mickey's Halloween Party. SUPER FUN!! If you are at Disney World in Sept/Oct, you should definitely go. Julianne dressed as Toodles and had a great time! She really, really wanted to see the Queen of Hearts and WE FOUND HER at the last minute! Perfect. :)

Day 4, We had Breakfast at Donald's Safari Breakfast and spent the day at the Animal Kingdome where (thanks to some special friends) Julianne had VIP seating for the Lion King show and Nemo the musical! It was so special! Both Julianne and Papa got to be a part of the Lion King show!!! Both shows were BEAUTIFUL!

Day 5, we spent the day at Hollywood Studios and then had dinner at Cinderella's Castle. We ate there for the first time on our last trip to Disney World (almost 5 years ago) and now it's a must. So "magical"! Even I felt like a princess!! All of the major princesses were in attendance!

Day 6, we celebrated Julianne's birthday with more park time and dinner at Chef Mickey's! Oh, I should also mention that Julianne was given a birthday cupcake every time we ate dinner. We'd all sing happy birthday and she'd say "NOW I'M 4!!" and we'd say, not yet. Finally on the 6th day she was 4!! Mickey helped her blow out her birthday candles. :)

Day 7, we went back to the Magic Kingdom for more and more and more tea cup rides and finished out our trip with dinner at the Garden Grille with the much awaited Chip and Dale!

It was a beautiful, unforgettable, magical week. Julianne's far and away favorites were seeing all her "friends" (the characters) and the tea cups and carousel! I'm so grateful for the blessing that this trip was for our little princess. To us, it was not just about celebrating her birthday, but about celebrating all that God has carried her and us through over the last 4 years. I think it was everything she dreamed of. :) Like I said, I still get emotional about it!

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Happy Birthday To Toodles

2011-10-01T15:27:00.004-05:00

Well, I'm only 12 days late, but Happy Birthday to Julianne! She's 4 years old now! We celebrated in a big way this year, but more about that later. :) Julianne is quite the wild woman these days. She's also quite the interrogator...ha ha! Many of our conversations go something like this:

Me: "Julianne, do you want to help me water the plants?"
Julianne: "With what?"
Me: "The watering can."
Julianne: "What watering can?"
Me: "The green one."
Julianne: "Why?"
Me: "Because the plants need water to grow."
Julianne: "What plants?"
Me: "The plants outside."
Julianne: "What Plants outside?"
Me: "The green ones by the bench."
Julianne: "What green ones by the bench?"

And on and on and on...seriously, it could go on forever I think. I feel like Abbott and Costello sometimes...you know, "who's on first".

Julianne's heart rate still seems to be remaining stable! AWESOME!! Unfortunately, she's not eating too great these days. I'm praying it picks up before we have to start tube feeding her again.

She's still LOVING her dance class! Julianne makes a precious ballerina. It's such a joy to watch her having fun in there.

One of Julianne's favorite songs right now is "Blessings" by Laura Story. I hear her sweet little voice singing along with it in the car, in her room as she plays and while she's swinging on her swings. The song:

I love this song too. At first I thought it was too "simple" and didn't like it, but the more I heard it, the more I liked it. Toward the end of the song she sings, "The pain reminds this heart, that this is not, this is not our home". Over the last five years, God has really put that in my heart. I just didn't think about it like I do now...back before I'd experienced the pain of losing a loved one, or seen my child go through more in four years than most adults have experienced in a lifetime, or watched friends grieve as they've lost children. As much joy as we experience here on earth, there is still pain, but one day, when we are home with Jesus, that pain will be erased. Julianne will never have another IV stick, and we will shed no more tears. On September 5th, my grandfather passed away. That one line in this song kept ringing in my head. "The pain reminds this heart that this is not my home." It certainly did remind me. I hope that will hold true for Julianne as she grows. I pray that the trials and pain that she experiences will not make her bitter, but instead be a reminder that "this is not our home". I'm thankful that I know that my grandpa is home now.

We have carefully explained where "pawpaw" went to Julianne. We've been cautious to not make her scared at all of heaven or of the word "die". I guess we made it sound pretty good, because she has now told us multiple times, "I want to go to heaven!" :) Of course, we remind her that (God-willing) she'll be old, old, old when that day comes! She still asks off and on "where's pawpaw?" So, I know she doesn't entirely grasp what happened. That's ok though...

Now, for happier things...

How did we celebrate Julianne's birthday, you ask? IN DISNEY WORLD!!! We have WAY-HAY-HAY too many pictures! I will post some soon. :)

Happy Birthday, my sweet Julianne! We're so thankful God gave you to us!! Look how much you've grown this past year:

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Little Dancer

2011-08-22T20:37:00.003-05:00

Things have been going great for Julianne lately....well, aside from weekly lab draws. That's done now though! She finished her Cipro on Friday with no detectable side effects for the entire 30 days! Woo Hoo! Julianne had a Cardiologist appointment today. He wants to see her back in three months for an echo to make sure that there is no more fluid building up in the pericardial area...meaning the infection has continued and gotten worse. He said that, more than likely, if that were to happen she would show symptoms this time. So, we're praying that all will be well and this infection is a thing of the past. :)

Julianne started a new semester of dance class today! She loves it! It's such a joy to watch her. :)Here are a couple of videos of our precious dancer...nevermind all the talking in the background, those are other moms.

This first one is my favorite!

Staying Home

2011-07-22T23:05:00.005-05:00

Well, I'm only one day late, but here's the update. As you know, Julianne was freed on Wednesday. It was quite a surprise, considering we'd just heard an hour before that she likely wouldn't get out until at least Friday. Late Wednesday afternoon, Dr. Crapanzano came by and said Julianne could go home! Julianne's numbers had been stable and increasing and her platelets were up to 225,000 that morning. All they were doing was monitoring labs and that could definitely be done outpatient. So, today we headed to the lab for a CBC. We don't have the results yet, but there's no reason to think the results won't be good! She has a follow-up with the ped on Monday and labs and a follow-up with the Hematologist (who we REALLY liked...she was such a gentle and kind lady) next week.

Will Julianne ever take Bactrim again? NO, NO A THOUSAND TIMES NO!!!! Neither will I or Kent, for that matter. No Bactrim in this house please!

Julianne started the new antibiotic, Ciprofloxacin, yesterday. So far so good... She'll be monitored with weekly labs.

She's really happy to be home and keeps being "Nurse Julianne" or "Nurse Sweetums" or "Nurse Toodles." Speaking of Toodles, lately Julianne has been telling people that she IS Toodles. Here's a picture of Toodles (from Mickey Mouse Clubhouse), if you don't know who he is:

Last weekend was pretty tough, but God carried our family through, once again, and we are so very, very, beyond very, grateful! Thank you, everyone for your prayers and encouragement. We know that things could have been so much worse and we are so thankful that they weren't!

I'll leave you with this video of Nurse Julianne doing her assessment...

Much to our Surprise...

2011-07-20T23:44:00.002-05:00

...we're home! I will update further tomorrow. :-)

Another Day of Good News

2011-07-19T22:06:00.003-05:00

More good news today! Julianne's platelets have been above 100,000 for her last two lab draws. Her hemoglobin and RBC came up too! The hematologist said she considers that "stable" and we should be going home soon. Julianne is going to start the new antibiotic, aspirin and maybe plavix and if she does well, she should be home in the next day or so! She will need weekly lab checks and visits with the hematologist until she returns to "normal". She needs weekly labs on the Cipro anyway, so, while it won't be fun, that really isn't a huge deal. The hematologist believes this really did all stem from the Bactrim suppressing her bone marrow production.

We are so grateful for all of your prayers. We know God hears them and we are so thankful that He is healing our baby girl! :)

Up and Up

2011-07-18T21:49:00.003-05:00

Well, today has really been a day of good news. As of 5PM Julianne's platelets were up to 124,000. Its definitely on an upward trend. There are still some questions as to whether or not she will be able to continue to keep that number up when the IVIG wears off, which is 4 to 6 weeks from now. The thought is still that this was caused either by the Bactrim or something viral, so it is reasonable to think that the further away from the Bacrim/viral issue we get, the better her health will be.

As for when we'll get out of here...that is still up in the air. I know they want her to be able to MAINTAIN a platelet level of 150,000 or more. We also still need to deal with the issue of reintroducing the aspirin and plavix and starting her on the new antibiotic, Ciprofloxacin. Maybe we'll know more tomorow.

Tonight we're thanking God for protecting our little girl during this frightening experience and we're praying for continued healing and peace for our girl. Thank you so much for your prayers and love for our family. :)

Good News

2011-07-17T13:52:00.002-05:00

Just wanted to update quickly with some good news. Julianne's midnight labs showed her platelets at 45,000 and at noon they were up again to 65,000! Thank you, God! Praying for continued movement in this direction. :-)

Platelets, Blood and IVIG

2011-07-16T22:38:00.004-05:00

So, I realized I didn't really explain the source of the spots all over Julianne. The spots all over her, the petechia and purpura, are tiny bleeds all over under her skin. They're caused by the extremely low platelet count which, when combined with her daily aspirin and plavix, made a bad thing worse. Julianne received four units of platelets yesterday and her platelet count was up to 28,000 early this morning. By afternoon, it was back down to 3,000. Keep in mind, that normal is around 300,000. Anything under 20,000 is at risk for internal bleeding. Scary... Despite all that is going on, Julianne has remained quite stable throughout all of this, so that is great! She received more platelets today as well as red blood cells because her hemoglobin was low too. Her WBC is low, but not super low, so that's good too.

Julianne was started on something tonight called IVIG. The way I understood it is that Julianne's body for some reason, be it from the Bactrim, virus, whatever, is likely suppressing her bone marrow production because her immune system is fighting off everything...even the good cells. The IVIG will hopefully take over and make her body stop doing the bad stuff its doing and allow the bone marrow production to resume. Basically this will, hopefully, make her better more quickly than just waiting and watching would do. What we don't want is to just be waiting it out and she gets even more sick. So, IVIG it is.

Now some good news, everyone that looked at Julianne today thought she looked better than yesterday. Even though she still has all of those spots, she wasn't as red underneath all the spots. When she wasn't being messed with by anyone in scrubs, she was happy, watching mickey, coloring with markers, playing with her mickey number cards and being "Julianne". It makes us so happy to see that. Now, we need her insides to follow suit!! Please continue in prayer for our baby girl. Please pray that God will heal this and that he will continue to protect our precious baby.

I shared on facebook that yesterday, while in the ER, Julianne said, "These two need to go!!" as she pointed to the two ER doctors examining her. It wasn't funny yesterday, because she had so much going on, but I couldn't help but laugh a little as I thought of it today. She's not shy about saying what she's NOT OKAY with! I think that is a good thing in some ways. :)

Finally, here are a couple of pictures from today:

We are so grateful for all of your prayers for Julianne and for the rest of our family. Yesterday was a tough day, but today has been easier because we saw a little more normal "Julianne" AND now that she has a central line SHE DOESN'T HAVE TO BE POKED ANYMORE!!!!!! Its so hard to see Julianne go through all of this, and we do have times where we break down, but we know that God is in control of all of this and there is not a moment that Julianne or us are out of his care. Thank you for all of your prayers and encouragement. We're more than appreciative!!

In the PICU

2011-07-15T20:51:00.004-05:00

Well, we certainly didn't think Julianne would be in the PICU a week after getting home from Boston, but here we are. Here's what happened:

Late Wednesday afternoon - woke up from nap with a low grade fever and a red splotchy face and ears. Called local ped after hours and they felt it seemed like a Bactrim reaction but didn't want to tell us to stop it without Boston approval. Called 8 East and they said stop the Bactrim and see the pediatrician in the morning.

Thursday - went to local ped office and they felt it was indeed a Bactrim reaction. Told us to contact Dr. B in Boston for new RX. Emailed back and forth with Dr. B and sent pics of new dark red spots on back of her legs. He called in new RX and told me to watch for any changes in rash.

Today - Julianne woke up with a big black spot on her lip and red dots all over body (petechia). Emailed a pic and brought her in again. By the time we got to the dr. office tiny "bruises" started appearing (pupura). They didn't like how she looked at all and sent Julianne to the hospital. The spots continued to get worse and we spent the day with Julianne being poked and poked and poked for blood and failed IV attempts. They were finally able to get labs and found out Julianne's platelets were around 8,000 when they should be around 300,000...so really low! Her WBC were also low too. So, they got an EJ line in, but lost it before the platelets could even be given. Then put in another EJ, gave her platelets then put in a central line. Now we are just going to be waiting as they check labs frequently and try to figure out what's going on. It seems that the likely source is a Bactrim reaction, but it could also be viral, infection or Steven Johnson syndrome (brought on by Bactrim). She's being watched closely.

We really appreciate your prayers. It was a tough day for everybody but we are relieved that they're being so cautious. We thank God for protecting our baby girl and are praying for a much easier day tomorrow!

Home Sweet and Sweaty Home

2011-07-08T20:17:00.005-05:00

So, let's see...where did we leave off? Ah yes, we were awaiting a plan to treat Julianne's bacteria. Well, on Tuesday morning we were told by Julianne's doctors that she would need to recieve 4 to 6 weeks of IV antibiotics at home. Plans were then being made for a PICC line to be placed in her arm and for a visiting nurse to begin seeing Julianne at home. We were hopeful that we could be on our way home by the weekend. The Infectious Disease department was being consulted for their opinion, but we were told that they are even MORE conservative than Cardiology and they would likely agree with the IV plan.

Late Tuesday afternoon Infectious Disease (I.D.) doctors came by and told us that the type of bacteria Julianne has (a type of Enterobacter) can be very effectively treated with an oral antibiotic called Bactrim. You may recall that I had a pretty scary reaction to Bactrim back in April. I asked about that and the I.D. doctor said that it only increased Julianne's risk of having a reaction very slightly. She would be at a further increased risk if she had a sibling who had a reaction to the medication. The good news is that even if she does have some sort of reaction there is another oral antibiotic that would be a good option. If you would, please pray that she'd be free from any adverse reaction to this medication. Also, it's giving her a pretty upset tummy...

The I.D. doctor went on to say that they wanted Julianne's surgeon to go back in and totally remove the pacing wires. Yikes!

Later, we spoke with Julianne's Cardiologist, and he'd also spoken with the I.D. doctor, was pleased with their recommendation of no PICC line and reassured us that she would still be able to do oral antibiotics even if the surgeon wouldn't remove the wires. Which was a good thing because he didn't remove the wires. Its kind of a big deal to remove them and an even bigger deal to put new ones on the heart.

Speaking of pacing wires, Electrophysiology was consulted regarding whether or not Julianne needs to be put back on an anti-arrhythmic drug since now it will be even longer until she gets her pacemaker. They felt that since she's done so well (by so well, I mean no SVT episodes) over the last couple of months being off her med, that we should continue to keep her off of it for now. IF she has no episodes of SVT during the next couple of months of antibiotics and the following waiting period then we may need to reconsider the pacemaker altogether!!!! If she doesn't need to be on an anti-arrhthymic medication then she doesn't need a pacemaker to deal with the low heart rate caused by that medication!! Which, by the way, would be AWESOME! Maybe, God kept her from getting the pacemaker last week because she doesn't need one at all...we will see. :) Please be in prayer that God would protect Julianne from any SVT episodes...they're not fun and they're pretty scary to tell you the truth.

On Wednesday, Julianne's Boston Cardiologist came in and asked Julianne, "Do you want to go home?" She said, "YEAH!" We got a flight for the next day and headed out of there. :) Julianne was so happy to be back home.

Now, we're back home and back to normal life, normal food and sweating any time we walk out of the door. :) Julianne will have to wait 4-6 weeks to return to her gym class, take a real bath and to swim. She's pretty wild these days, so protecting her incision is a challenge, ha ha...

Thank you all for your prayers during this surgery and hospital stay. Your words of encouragement and faithfulness in praying for our family have meant so much to us...more than I can express.

Finally, here are a few pictures:

Julianne sleeping "with one eye open" because you never know what's coming

Oh my goodness...food delivery robots in the hospital!!!! How cool is that!

Coloring!

Talking on the phone to Aunt Laura

"Do you want to go home?"

Ready to go...except that mommy forgot to bring shoes to the hospital. Oops!

One last picture with everyone's favorite Boston Cardiologist

Playing with Daddy on the airplane

Home and blowing bubbles in the yard. :)
Thank you, God for protecting this little girl!

Great News!

2011-07-06T13:03:00.002-05:00

Julianne is being discharged today! I will update more later. :-D

See! We Really Are Taking Pictures!

2011-07-04T21:12:00.004-05:00

I finally managed to get the camera and the computer together in the same room and upload some pictures! But first, an update:

Julianne's cultures did "speciate". That means a specific type of bacteria is growing. Apparently, it would have been more desirable for this not to happen. We will find out the plan tomorrow as far as a longer term antibiotic goes. The main question is will she have 4 weeks of IV or oral antibiotics. The other question is does she need ANY more IV antibiotics at this point because she lost her EJ line last night...blagh! After 3 attempts at a new IV, it seemed like a lost cause. Today another nurse from the IV team came to evaluate Julianne's veins. Based on what she saw and looking at Julianne's history she felt that Julianne does not have anything available for a peripheral IV. This means that if Julianne needs an IV she will be transferred back to the CICU to get another line in her neck or a different type of IV. For tonight she got an antibiotic shot since she has no IV access. Like I said, we'll find out the plan tomrorrow.

Please be praying that God would give wisdom to the doctors caring for Julianne and that whatever plan gets put into place, it would be EXACTLY what she needs! Also, my parents are traveling home tomorrow. Please pray that their trip would be safe and uneventful. :)

Julianne is really in great spirits...as long as she's not being messed with. As soon as she sees a stranger at the door she says, "What are they gonna do, Mommy?" She's going for a lot of walks, playing with her stuffed toys, drawing, and watching WAY too much Mickey Mouse. She will need to go into TV rehab when we get home! HA! Julianne is eating and drinking almost like she would at home...maybe just a little less. The playroom was open today, so she was pretty happy about that. :)

Now the pictures...we'll start from 1 day post-op:

In CICU snuggling "Nemo's Daddy" watching Mickey

Drawing with Minnie

Playing with the old faithful clubhouse people, two days post-op

Blowing bubbles in Prouty Garden today

Watching the bouncing balls in the lobby

Looking at the real "Nemo's" with stuffed Nemo and his daddy

Going for a drive

Forgot the Camera...

2011-07-02T21:16:00.004-05:00

Ugh! I can't believe I forgot the camera at the hospital! Kent is with Julianne tonight and I'm back at the DNH. So, no pictures tonight...but here is a cute video my mom emailed from her phone:

Enjoy your long weekend everyone!! More tomorrow...

Quick Update With Some Good News

2011-07-02T13:12:00.003-05:00

We got some good news during rounds this morning. It appears, judging by Julianne's lack of symptoms and what the cultures are showing, that the area of concern is not a true infection started by some type of germ. Instead, it was more than likely her body reacting to a foreign object being placed inside of it (the pacing wires). The cultures are growing some bacteria but not a specific type yet. They will continue growing them for a week or more.

The great news is that because she's not "infected" she won't have to be on IV antibiotics for a month. She will have a couple more days of IV antibiotics and then switch to oral just to be on the safe side. The plan would still be to return in a few months for another attempt at pacemaker placement.

Like I said, quick update. :-) We will update more later! Thank you for your prayers and encouragement!

Hanging Around

2011-07-01T20:25:00.005-05:00

So, it looks like Julianne will be here until at least Tuesday. She will continue to get IV antibiotics to combat the infection they found today. She will need to be on antibiotics (most likely oral) for a month. In a few to several months we will return to Boston for Julianne to get a pacemaker. If you didn't see the last update, Julianne did not get a pacemaker today because when they opened her up they found infection around the pacing wires. More than likely they became infected after they were placed last Spring. Thankfully, the infection has remained contained all this time! She wasn't running fever or anything. Had the infection spread to her bloodstream, it could have been very dangerous. We thank God that was not the case! Also, there was no fluid around her heart and that's great news as well! As Lifesongs would say, "God is good all the time."

Julianne was pretty irritated to wake up with multiple IV lines, a drain and a breathing tube. The good news is that she was extubated this afternoon! She seems to be in a little better spirits tonight. Please pray that the antibiotics clear up this infection business and that Julianne can be contented while spending time in a place she doesn't really care for. Tonight she asked to go to her swings, go home and go to her "Boston bed" at the Devon Nicole house. We really are grateful for your prayers for all of us! How wonderful to know we are covered with your prayers as we go to sleep tonight. I will update again tomorrow WITH pictures! I couldn't get pics to upload from my phone. :-/

Change of Plans

2011-07-01T09:00:00.002-05:00

We just spoke with Julianne's surgeon and cardiologist. When they made the incision they found cloudy fluid around the pacing wires, indicating a possible infection. So cultures have been sent off to test for various bacteria and surgery is postponed for at least a couple of months. They're closing Julianne up now and preparing to send her to the CICU for the night and then to the floor. The possible infection will be treated with a combination of IV and oral antibiotics depending on what the cultures show.

We are thanking God for protecting our JuJuBee and showing the doctors what they needed to see! Please continue in Prayer for our girl!

Surgery Day

2011-07-01T06:33:00.002-05:00

Julianne just left us for her surgery. That is always the hardest part for us. It gives us a case of the "runny eyes" every time. God granted Julianne peace this morning and she did not shed a tear! Thank you, God! While we were sad to see her go, I think we both feel a sense of peace now and anxiously await our chance to see her when they're done. Thanks for the prayers!

A Fully Full Day

2011-06-30T19:55:00.002-05:00

As I said yesterday, we had to have Julianne at the hospital for 7:30 this morning. We figured it would be a really long day with a lot of appointments...and it was. Her echo was scheduled for 4PM today!!! Thankfully, a very sweet nurse who took care of Julianne while she was a newborn was able to get Julianne a MUCH earlier echo appointment and we were done with everything by 12:45!! Woo Hoo! Still, that was 5 hours of doctors appointments for Julianne. She did a great job today, but she was ready to be done.

As soon as the morning of appointments was over we had lunch, took a brief nap and hurried over to the swan boats. We certainly made the most of our free afternoon. We took the subway to the Boston Public Gardens where Julianne got to ride the swan boats....

On the boat

Then we walked around the Public Gardens and took some pictures with the duckling statues...

...next, we headed to Boston Commons and put our toes in the frog pond

(not really for frogs...its for kids)...

...finally, we finished off the afternoon with a carousel ride and a LONG walk for ice cream.

After a subway ride home, dinner and a bath, Grandpa and Grammy stopped by to say goodnight after their "adventure" from Baton Rouge to Boston. Julianne gave her night-night kisses and that was the end of a great day.

I think Julianne had a great pre-surgery-afternoon-of-fun! Boston is such a beautiful city and we were so happy to be able to enjoy a nice day today. :)

Tomorrow, Julianne is first case. That means we have to be at the hospital at 6 AM. The surgery should only last about 2 hours. She will likely spend one night in the CICU and then move to the floor. Please continue to pray that this surgery and recovery will be complication-free and that God would grant both Julianne and us peace tomorrow. I should get a chance to update tomorrow, so we'll keep y'all posted!

We Made It!

2011-06-29T20:30:00.003-05:00

Well, we made it to Boston! Julianne did WONDERFUL on the plane and in between flights. She's such a great travel buddy. She did great through security and made even the very straight-faced security agents bust out laughing as she insisted she was standing on a "peanut", which was supposed to be a picture of a footprint, and reached out to shake their hands saying "nice to meet you!". Our flight was delayed so we made it to Boston about two hours later than we planned. Unfortunately, we didn't make it to the swan boats before they closed today. Julianne was pretty bummed about it. We're hoping to make it happen tomorrow.

We have an early start tomorrow...7:30 AM. Julianne will have the pre-op usuals: EKG, Echo, labs, chest x-ray, meeting with surgeon, anesthesiologist, Dr. Breitbart, E.P. Last year this took a LOOOOONNNNNNNG time. I am really hoping we can finish no later than three so we can make it to the swan boats. Julianne has really been looking forward to riding them again.

We are so grateful, once again, to have a room at the Devon Nicole House (which is actually now "The House on Autumn"). Julianne is tucked into bed, but has yet to fall asleep despite our best attempts. She's just way to interested in what is going on outside of our room. This evening we walked down to Coolidge Corners and had dinner, then stopped at a park and let Julianne swing and play for while. After waking up at 6:00 this morning you would think she'd be exhausted!

Thank you all so very much for all of your prayers. Today was a busy, but great day! Please continue to pray as we get ready for this surgery. While its not nearly as complicated as the other surgeries have been, its still surgery. I don't think any mom or dad wants to see their child have to have a surgery...no matter how small. As you may or may not know, I have a tendency to struggle with worry. When I've found myself worrying over "what if" scenerios, God has put these verses in my heart:

"Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you." Phillipians 4:4-9

While I pray for peace everyday, I also have to physically remind myself to think about "whatever is true" and instead of thinking of all the crazy things I'm afraid of, I try to think of what God has done in our lives in the past and what He promises to do in His word. Please continue to pray for peace for us and also peace for our little girl. She will be pretty stressed tomorrow. Of course, we are also praying for protection and guidance for Julianne's doctors, surgeons and nurses. This surgery should be "easy". :)

I thought this was going to be a "quick" update! So much for that! Ha! Sleep tight all!

First Day of Dance Class

2011-06-10T23:46:00.005-05:00

Today was the big day! Julianne's first day of dance class at The Little Gym! It was such a joy to watch her and enjoy this day with her. After seeing the other little girls in this class last semester, in their pink tutus, Julianne decided she wanted an orange one. So, here she is, in her fabulous orange tutu, on her first day. :)

Getting ready to put on her tap shoes

She likes to get a closer look at what the teacher is doing :)

Our little ballerina

I wonder what Julianne was saying to her teacher in this video...

Of course you know I only posted the pictures of Julianne actually following the direction of the teacher. I would say about 50% of the time she spent doing her "own thing". Today was SUCH a great day! I'm so grateful that we're able to bring Julianne to The Little Gym AND that she loves it so much. :)

We Have Surgery Dates, a Gymnast and a Dancer

2011-06-04T00:41:00.005-05:00

First of all, sorry to leave you hanging since the last update about when we're heading to Boston. We leave on June 29th for pre-op on the 30th. Then, Julianne will have surgery to implant a pacemaker on July 1. Please be in prayer for Julianne's safety and peace as she prepares to undergo this surgery. We'd also love it if you could keep us in your prayers as well, that God's peace would surround as we prepare for Julianne's surgery. :)

Well, we've been having quite a fun, albeit hot, Summer! (I know it's not actually SUMMER yet, but hey, it was 100 degrees yesterday!) I've posted a lot of pictures for y'all! The first are a few of Julianne playing with bubbles with daddy:

Julianne is in love with everything having to do with the sky these days...especially airplanes and the moon:

"I see a airplane!"

"Right there"

Little Lady

Playing hide-and-seek with daddy..."You found me!"

Today we had SUCH a great day!!!! It was "show day" at The Little Gym. The kids get to show off what they've learned during the semester and can invite friends and family to come watch. Daddy, Mommy, Grandpa, Grammy and Aunt Laura were on hand for the show. Julianne was so excited to have an audience and was SUPER excited about show day. Check out just how excited in this video. She was REALLY anxious for class to start:

Action shot

Walking on the beam

Swinging from the bar...not too long ago she was not strong enough to hold herself up like this. So thankful for all that we've seen this girl accomplish. Thank you, God! :)

Getting her medal and certificate

Showing off the medal

Grandpa, Grammy and the gymnast

Two very thankful and pround parents. We love you, Julianne!

Next week Julianne moves up to the next age group at Little Gym. She'll be in a class that does tap, ballet and gym. Oh my goodness...she's growing up so fast. I know she'll do great! We're so greatful that we've been able to have her in the programs at the Little Gym. She's come so far. :)

We appreciate your prayers for the upcoming surgery and we hope that you'll join us in thanking God for the miracle of this little girl's life and for all He's brought her to accomplish!!

What Happened to Texas?

2011-05-02T21:22:00.004-05:00

When Julianne had a low heart rate episode the week before we were supposed to go to Texas, we began to wonder if it was safe to travel while we still weren't sure what was going on. We prayed that God would give us direction as to whether or not we should go. At the same time, we waited for Julianne's Cardiologist to give us his opinion.

I emailed the Cardiologist on Thursday. We waited throught the weekend with Julianne off of one of her meds. She seemed to do ok. Sunday night (Easter) I started feeling really sick...fever, heart palpitations, chills, body aches. The next morning wasn't any better. My mom went to the store for me and Kent came home from work early. I thought I was just getting a bad virus. I continued to have fever the next day and on Wednesday I finally went to the doctor. I woke up that morning COVERED in a red rash. My normal doctor was on vacation and the doctor who saw me felt that I had a bacterial infection in my sinuses or throat along with an allergic reaction to an antibiotic I was on for a mole I had removed from my foot. I went home with an antibiotic shot, another oral antibiotic and an antihistime. I didn't get any better that day. In fact, it got worse. By 2:30 AM I went to the ER. Turned out, all of the symptoms were from a reaction to the original antibiotic! I got a steroid shot at the ER, oral steriods, and a different antihistime. I'm now FINALLY feeling much better! Gee whiz! I would've never guessed a drug reaction could make you feel so bad.

While I was having my illness, Kent cracked a tooth!! He was in severe pain and after already taking two days off of work to take care of me, had to take another day off to get to the dentist. The dentist informed him he needed a root canal....which took place today.

In the mean time, we were still supposed to leave on Friday for our trip. Well, by Friday, we'd already decided the trip just wasn't happening.

Friday afternoon I got an email from Julianne's Cardiologist that we need to return to Boston for an Electrophysiology evaluation. Julianne's difficulity with the SVT preventing meds seems to mean that there aren't a whole lot of medication options right now. So, they're going to see her in Boston and we'll figure out the best treatment option from there. I should have more details on the trip soon. Oh, and you may be wondering how Julianne is actually feeling...SHE'S FEELING GREAT! She's been the healthiest one of all three of us lately! Ha ha! The only issue she seems to have going on is that she has nothing preventing her from going into SVT right now.

We were pretty disappointed to miss our trip, but soon realized that perhaps God was protecting us from spending the money and leave time on the Texas trip when He knew we'd need it for the upcoming Boston trip. So, while we are sad to miss out on time spent visiting with our families, we are grateful for God's direction in our lives.

Easter 2011

2011-04-26T12:12:00.004-05:00

We had a great day celebrating the reason for our hope. I'm so thankful to have spent a wonderful day with 1/2 of our wonderful family. :)

Now, a brief Julianne update: Julianne has been having some low heart rate episodes. Her heart rate will all of the sudden be in the low 50's. She's super tired when it happens, irritable and just generally miserable. She's also been more tired than usual for the last few weeks. Right now, we're going with the working diagnosis that one of her meds (Verapamil) has been causing these issues. She's been off of the med for 4 days now and so far so good. We're waiting to hear from Boston about a replacement med. We're also waiting to hear from Julianne's cardiologist about whether or not he feels its a good idea to go ahead with a trip we were planning. Please pray that we'll get this low heart rate thing figured out and that we'll know what we should do about this trip.

Heart Walk 2011

2011-03-28T22:58:00.009-05:00

T-shirts ready for delivery

Front and back Strolling Walking with Daddy The other sweet "Team Big Bow" leader, Emma Kate Emma Kate and her mommy, Rachel with us at after the walk

Hammin' it up

We had a wonderful time at the walk and got to see some of our precious heart friends. Even though she only actually walked about 20 steps, Julianne was pooped! Thank you all so much for your support for this year's Heart Walk! We can hardly wait until next year!

Sharing Julianne's Story

2011-03-15T21:03:00.007-05:00

In preparation for the upcoming heart walk, we've had the privilege of sharing Julianne's story, not once, but twice! The first was with a sweet group of ladies in Central and the second was with John Pastorek at WBRZ, in Baton Rouge. I'm always grateful for the opportunity to share Julianne's miraculous story and to show others how God has cared for our little girl and our family. There is, however one part that I'm always hesitant to share.

Don't worry. It's not a gruesome detail or anything.

When the Perinatologist first gave us the diagnosis she told us the baby "will probably either die or be severely handicapped". We've since learned that is simply not true! I think, had we already been with our current, Baton Rouge, doctors we would have never heard those words.

My hesitation about mentioning that detail is that I don't want to be a discouragement to other families facing the same diagnosis. One of the purposes in sharing her story in the first place is to ENCOURGAGE other families! However, I feel that if I don't share that detail, I can't adequately express how we felt getting that diagnosis, how hurt we were and how much hope God has instilled in our hearts since that day. So, we mentioned it. Whether or not its in the story is up to WBRZ. They are the ones editing it after all.

So, if you're in the Baton Rouge viewing area, check out Julianne on WBRZ on Friday, the 25th at 6:00PM! I will also post a link to the story after it airs. There was no way to share all that is in our hearts during that brief interview, but my prayer is that even through our nervous voices and my bulging, nervous eyeballs, God would be glorified through her story. :)

Guess who's sick...AGAIN? Good gravy, this has been quite a cold/flu season!

Silly Mommy...

2011-03-02T22:36:00.010-06:00

"My silly mommy keeps forgetting to call for my lab results!"

Yes, its true. I've put a reminder in my phone to remind me to call tomorrow. Ugh. I think they would've called me if there was a serious problem though. Labs went relatively well when we had them drawn. Thankfully, the lady drawing them found a vein on the first try! FIRST TRY!!! Yay! Julianne was pretty upset, but calmed down as soon as we got out of that chair. :) I hope to have some results to share tomorrow.

Things are going really well here. Julianne's eating is back on track and her G.I. doctor has reduced the tube feedings to two a day, and three water boluses. She's still only eating pureed textures, but eating is eating (sort of). I told him about the limited foods she eats and he said she could survive on that. Hard to believe, ha ha.

We had a wonderful Valentine's Day and Kent brought home a couple of roses for his girls. Julianne, despite her face in the picture below, really liked hers. This is her "smelling" face!!

HA!! I told her to smell the rose for a picture and this was her "smelling face". I cracked up...

We've really been enjoying these warm days and we've been trying to make the most of them. Here are some park pics.

Oh, goodness....she's growing up so fast. Someone please slow it down...

Speaking of growing up...Julianne spent the first night in her crib with the rail removed last night. It made me sad. It felt like that crib was her last little bit of babyness. We're very thankful that she's growing and maturing and doing all these things that she very well could have never accomplished. So, we thank God that Julianne is growing up...bittersweet as it may be. :)

Heart Walk 2011!! (and a Julianne update)

2011-02-19T10:08:00.006-06:00

First, let me give you a quick Julianne update. When I last posted I told y'all about all of the wonderful progress Julianne made with eating and potty training! I also mentioned that she was sick. Well, she just kept getting sicker. Julianne wouldn't eat or drink anything, had all-day stomach troubles, fever for days, heavy breathing, lethargic....she was pretty sick. We brought her to the ER on Saturday, the 5th, and they admitted her for dehydration, and low saturations. As it turned out, Julianne had Flu A (despite getting a flu shot) and RSV. She only stayed three nights and she was so brave! Its taken her a while to get back to normal, and her eating still isn't what it was before she got sick, but we're thankful to have our "normal" Juju back. :) She needs to have labs drawn on Tuesday, so please keep her in your prayers, that it will be quick and easy and we'll get good results.

Now, the heart walk...

We are so excited to join forces with our friend, Emma Kate and her lovely family, this year! Emma Kate and Julianne are "Team Big Bow" because both of these girls are rarely without a big bow. The American Heart Association Heart Walk is on Saturday, March 26th at the LSU Old Front Nine. Activities begin at 8:00 and the walk begins at 9:00. We are hoping that you'll join our team and join us in supporting the American Heart Association. I believe I posted, back in May, about Julianne being part of a study that was funded by a grant from the American Heart Association. That has made us all the more eager to suppport the AHA, having experienced, first hand, how they're helping kids just like Julianne!! Plus, all of us know and love someone with high blood pressure, high cholesterol, someone who had had a stroke or other heart disease. Supporting the AHA furthers research and awareness of heart disease and that is SO important! So, please, join us in supporting the American Heart Association at our TEAM PAGE We'd love for you to join our team, whether you'll be walking with us or joining us by helping to raise funds for a great orgainization!

We'll be wearing some fabulous t-shirts, designed by Emma Kate's mommy, this year! T-shirts are $10.53 and will be Navy blue with the design below. Youth and adult sizes are available. I'm happy to ship your shirt to you if you don't live in the Baton Rouge area! So, email me (or call or text, but I'm not posting my phone number on the internet, ha ha!) at jessicacaperton@yahoo.com if you'd like a shirt!

My Big Girl

2011-02-03T07:35:00.006-06:00

Things have been going really well here lately! Julianne is completely daytime potty trained! It happened really quick. We told her that when the Christmas tree was gone, so were the diapers. We gave her some Minnie Mouse undies and never looked back. :) Nighttime control will take a lot longer I think because she still gets a tube feeding after she goes to sleep and two more doses of diuretic. I don't think I could hold it all night with all of that! Ha ha!

Look how grown up she looks! Time goes way too quickly!

Julianne has also really picked up her eating. She's actually telling me she's hungry now!!!! I love, love, love hearing those words. She eats yogurt with flax seed every morning for breakfast, and throughout the day will eat some combination of baby food chicken noodle, baby food fruits, mashed potatoes, pudding, ice cream or more yogurt. If you can't tell by that list, she's still not chewing. We're happy with this major improvement, chewing or no chewing. :)

Unfortunately, Julianne is sick this week...coughing, congestion, upset stomach, fever. She's hasn't wanted to eat much today and is having a lot of difficulty tolerating her tube feedings. I spoke with her doctor today and he gave me some things to try, then we'll see how she is in the morning.

Another really great thing that happened around here is that Julianne completed her first semester of Little Gym. She really enjoys her time at Little Gym. I almost get emotional seeing the joy on her face when we go in there each week. :)

Watching through the window, waiting for her time to go into the gym. So happy!!!

"Everyone please shake your shakers..."

Getting her medal

So proud of our big, brave girl

I also wanted to let everyone know that we are joining forces with Julianne's friend and fellow heart patient, Emma Kate for the heart walk this year! We are really excited and we hope that you'll join us in supporting the American Heart Association! You can join our team here! I will post more information about the Heart Walk as it gets closer. For now, join the team, spread the word and save the date! March 26, 2011

Christmas Treasured

2011-01-10T23:08:00.006-06:00

Merry Christmas! Happy New Year! You should know by now that I took an over abundance of pictures during the holidays and there's just no way I could upload all that I wanted to upload into one post. So, I've uploaded just a few of my favorite of favorites and put the rest of my favorites in a slideshow. We had a faboulous Christmas and New Year celebration. We spent a big chunk of it driving, but we spent it together and that was the best. Julianne really enjoyed Christmas this year. She even got to be the star over the stable at our Christmas Eve service! We went caroling, did a cookie exchange, played with animals at The Christmas Forest and had a personal visit from Santa! Julianne helped decorate the Christmas presents this year and talked about Jesus more than ever. It just melts my heart to hear her talk about why Jesus is special. :) She's growing up in so many ways. This post is only about our Christmas adventures, but I have some exciting Julianne news to share in the next post...which will hopefully be this week! I hope your Christmases were just as joy-filled as ours! Please feel free to check out our Christmas fun in the photos and slideshow below:

Free photo slideshow made with Smilebox

Facebook

2010-12-13T15:11:00.002-06:00

Are you on Facebook? If so, please take a moment to vote for Julianne at The Capital Area American Heart Association's Page We are a little biased, of course, but we think she'd be a great "face" for the AHA in 2011. Thanks!!!

Happy Thanksgiving!

2010-12-11T14:42:00.006-06:00

I know, I know, I'm way late with this. I've been having trouble uploading photos to Blogger. I think its because the our new camera's images are a good bit larger than the old one. So, I have to upload one picture at a time. Its quite time consuming AND frustrating. There must be a better way...

Julianne was actually sick for Thanksgiving. She's still got something going on, but we're not sure what. I've brought her to the pediatrician twice in the last two weeks. She's really tired all the time. Today Julianne slept until 10:00! I don't think she's ever done that. Plus, she's still taking a 2 hour nap everyday. She's wobbly when she walks and just isn't really "Julianne". The Ped feels that she is just worn out from whatever viral thing she's got going on. We're staying on top of it though and will likely be in some doctor's office this week if things aren't better.

Here are some pictures from the last month. I hope you enjoy! I worked really hard to upload them, ha ha!

Modeling her "mommy-made" Halloween/Thanksgiving dress

Mickey head sugar cookies!

"I have flour in my eye!!!!"

Enjoying nice weather at the park

Thanksgiving day...sick but cute!!

Modeling the reverse side of her "mommy-made" dress :)

Three Weeks in Pictures

2010-11-02T21:16:00.009-05:00

Daddy Goes to Little Gym:

Julianne's First Football Game:

Feeding Birds with Grammie:

Pumpkin Patch: (There are actually more, and better, pumpkin patch pictures, but I'm having some camera/photo issues at the moment. The main issue being that our camera was stolen - from my car that I forgot to lock :/ - and I've had to borrow my parents' camera and then keep transferrring stuff to my computer and things get lost in the shuffle, you know? Anyway, we're trying to decide what camera to get now, but its hard to decide! I digress...)

She was really scared of this scarecrow...

Trick or Treat: (...with an AWESOME costume borrowed from a sweet heart friend! Julianne had been asking to be Donald Duck for a month and they don't sell Donald Duck costumes anymore! We were so excited to be able to borrow this one and Julianne LOVED being Donald!)

As we get closer to Thanksgiving I'm reminded even more of how much we have to be thankful for! God has given us so much more than we deserve. I love this sweet JuJuBee!

Julianne has been saying some really funny things lately. I thought I'd share a few. :)

Grammie: "Do you wanna get in your swing?"

Julianne: "Yep!"

Grammie: "Did you say yep?"

Julianne: " Daddy says that. I'm TRYING to be just like Daddy!"

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Julianne: "I wanna dress like Santa Claus, like Grandpa."

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Lady in a store: "Oh! Look at your fat cheeks! Oh you have fat cheeks!"

Julianne: "It is what it is"

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Therapist: (tapping with sticks on Juliannes feet and hands)"Julianne, now what do you want to tap?"

Julianne: "I wanna tap on your beeeee-hind"

Endoscopy is Behind Us!

2010-10-14T16:10:00.011-05:00

Julianne's endoscopy went really well. It was quick compared to her other surgeries!! HA! Everything looked good. Here esophagus was nice and pink and nothing looked abnormal. Dr. Alberty biopsied (is that how you spell that?) her stomach and intestines and we should have the results next week. For now, it seems that her eating problems are a psychological aversion to food/eating. We will continue to work on that. Julianne seemed a little out of sorts after the procedure, but after a long nap at home she's returned to normal. :)

Thank you for all of your prayers!! We're so thankful that God protected our JuJu once again! Oh! AND she didn't need to be on the ventilator!! They protected her airway, but she was able to breath on her own for the whole procedure. Julianne was relatively calm until she had to put on the mask with the gas. She watched Mickey and tried to do somersaults on the bed! We are so thankful that God not only protected her physically, but also calmed her fears. We pray with her every night that God would "help me not be scared". She still got upset everytime a person in scrubs came in, but I would say there were many more smiles than tears in pre-op. :)

I thought this was a cool picture! This is Julianne's Nissen Fundoplication. This is looking up from the bottom of her stomach.

Here's the picture flipped so you can get a better idea. That's where her esophagus meets her stomach and they did the fundoplication to prevent reflux. Pretty cool, right??

On the way to the hospital at 4:30 AM! Someone is a morning person...

Acting like a wild woman waiting to be taken to the procedure room

In recovery...grumpy, tired and ready to go home!

Tomorrow, Tomorrow...

2010-10-13T21:39:00.005-05:00

Endoscopy, tomorrow... We have an Endoscopy scheduled for Julianne. We scheduled it last week, but I haven't had a chance to update until now. At the recommendation of Julianne's GI doctor, we've decided to go ahead with an Endoscopy to check for any esophegitis, allergy or disease. She just can't seem to make progress with feeding and this is to rule out anything that may be causing it other than plain 'ol oral aversion. We weren't really on board with this a few months ago, but Kent and I both feel that God has put some things in place allowing us to feel more comfortable with going ahead with the surgery here in Baton Rouge. She will be under general anesthesia and on a ventilator during the Endoscopy. It will take place tomorrow at 7AM (We have to be there at 5AM though! YIKES!). We would really appreciate your prayers for safety for Julianne, wisdom and guidance for the doctors and nurses and also that anything that needs to be seen will be.

Now for more fun stuff. Here's what we've been up to lately:

We had the pleasure of visiting our wonderful friends Stacey and Jeremy in Florida a few weeks ago. We had a great time. Although Julianne really didn't like the beach much, she LOVED swimming in the pool and is still talking about the chickens!

Totally hating the water on her toes

Muuuuuuuch happier in the pool

Pretty awesome sunset

Checking out the big Mickey head "Mr. Jeremy" made for her

The chickens...kinda funny story...Julianne was SO TIRED one day that she fell asleep sitting up on this step (with no arm around her that time) watching the chickens eat. I saw her twitch all of the sudden and then realized she was asleep sitting up!! She went to bed at 4:30 that day!

Our fabulous hosts

We've been having lots of fun at home too:

Saints game with daddy

Waking up with Daisy

Swinging with Mommy

Now its Minnie's turn!

Julianne's 3rd Birthday Party

2010-09-27T22:47:00.002-05:00

Last Saturday we had a small birthday party for Julianne. It was a Mickey and friends theme, of course! My parents and sister, Kent's parents and my grandparents came over to celebrate with us and, for the first time ever, Julianne liked her birthday party! She didn't cry at all...even during "Happy Birthday". It was a special day for us and a pleasure to make it special for her. I hope you enjoy the pictures. Oh, and if you're wondering about the slideshow song, its one of Julianne's favorites right now..."The Marching Song" as she calls it. What can I say, she's patriotic. :)

Make photo slide shows at www.OneTrueMedia.com

She's Three!!

2010-09-20T21:02:00.003-05:00

Happy Birthday, Julianne!

You are 3 Years Old!

God has used you to bring so much joy to our lives. We love you!

Julianne turned three on Sunday! Check back this week for a slideshow of Julianne's birthday and third year of life!! (Sorry, I'm a little slow this year.)

It's All Good!

2010-08-24T21:12:00.007-05:00

I am so pleased to write that Julianne's swallow study went so much better than I ever imagined! She was calm and cooperative. My mom joined Julianne and I and she played entertainer while I spoke with the Speech therapist as she filled me in on what they would be doing and what I needed to do. We brought the portable dvd player and played Julianne's favorite Mickey episode, pausing when she would refuse to take a bite or sip and then starting it again after she did what we asked. They got a clear look at Julianne's swallow and everything looked fine. We don't have the official report yet though. At this point it seems that her gagging is more of a sensory issue. So, we'll keep on working on getting her to tolerate more foods and varying textures. Thank you so much for all of your prayers for that day. Julianne certainly had a peace that surpassed all understanding. Thank you, God! :)

We had a super-fun play date with Julianne's "heart sister", Emma Kate, and, yet again, I DIDN'T TAKE A SINGLE PICTURE!! What kind of slacker mom.... Anyway, Emma Kate's mommy suggested we bring Julianne's booster to the swallow study and I think that was a HUGE help! She would have freaked out being strapped in that chair. So, if you are about to take your toddler to a swallow study, bring your own chair! Oh, and your own cup and spoon!

Also, Little Gym went WONDERFUL! Julianne surprised me by being willing to try almost all of the activities and she loved it. It was just awesome to see her enjoying something that is so different from her usual activities. She even swung from the uneven bars! Can you believe that? We've signed her up for the fall semester and her next class is tomorrow. I'm so excited!!

Ready for her first day at The Little Gym

Now she's really ready!!

Swimming in the shade

Out with Daddy and Mommy

Bubbles with daddy

Where-Oh-Where Has All The Time Gone?

2010-08-17T20:30:00.006-05:00

Its been spent on fun. :) Things are going well. Julianne is doing much better as far as being afraid of everyday things are concerned. She's walking in the grass and on the concrete without holding our hands. She's taking baths and getting her hair washed without crying. She's playing in the pool. Therapies are going well and we are in the process of transitioning from the Early Steps program to the Zachary Community School system for therapy services. Eating is always a struggle, but that's ok. We're always working on it. In fact, she has a swallow study coming up on August 23rd. If you could pray that she'll calm down enough to eat/drink all that is needed for the test we would be grateful. :) Doctors offices, doctors, nurses, scales, measuring tapes are still pretty upsetting for her, so I'm not sure how this swallow study is going to go. Oh! And Julianne is attending her first class at the Little Gym tomorrow. If it goes well we might sign her up for their fall parent/child class.

Now, for pictures:

We've been having a blast swimming (when its not raining)...

...playing in the sand and water (mostly water)...

...pouring as much water into the grass as possible...

...swinging with great big bouncy balls...

...and swinging without great, big bouncy balls.

Julianne had fun playing with her friend Ava.

She's been dancing, dancing, dancing...

...and "running"...

...and snuggling.

She had a great time at the zoo with her friend Myles.

She got SERIOUS about drinking water at the zoo!

We took Julianne to her first movie...a free showing of VeggieTales, "Jonah. That lasted 10 minutes! Ha ha! She loved it, but she was a little loud for the other viewers.

Julianne has been busy looking way too grown-up...

...swimming in Grandpa and Grammie's pool...

...laughing and playing...

...and "jumping" to Daddy.

She's been a beautiful Hawaiian princess!!

Julianne's cousins came for a visit and we made them all play in this one corner! Just kidding...they were all playing in that one corner though, kinda funny.

They helped pick all of the pears before the raccoons took any more!

All of the Caperton Couisins
Left to Right: Canon, Cash, Jed, Story, Julianne and Riley

Watching Mickey with Cash and Canon (that's not some weirdo couch, we'd moved the futon mattress to another room for sleeping purposes)

We had a great time!

Today: Julianne and Coca coloring and waiting for Daddy to get home

It's been a wonderful month. I can hardly believe that in one more month our baby will be three years old. Its always bittersweet to watch Julianne grow. Bitter because she's ever-so-slowly becoming a little girl instead of a baby, but oh-so-sweet because she's here and she's growing. :) Thanks for checking in on our baby boo and thank you for all of your prayers and love for our family.

Before the Morning

2010-07-14T23:20:00.002-05:00

I LOVE LOVE LOVE this song and a friend shared with me the story behind the song today! It makes me think of Julianne every time I hear it. I was just telling Kent about this song the other day and telling him how I can hardly wait for the day that she'll understand that all she's going through is temporary. Julianne and I sing a lot in the car and she knows many of the KLOVE songs, but I can't get through this song without getting choked up. I had NO IDEA until today that this song was about a family with a child with HLHS and just how close to our story it really is! Here's the back-story for this song:

And here's the whole song:

"...the pain that you've been feeling can't compare to the joy that's coming"
Praying that God would give Julianne wisdom beyond her years to understand His love, mercy and promise of a hope and a future through Jesus. :) Hope you enjoyed the song!!!

Where Have We Been?

2010-07-10T14:21:00.007-05:00

We've been at home! And that's our favorite place. :)

Things have been going pretty well. We're back to Julianne's version of normal as far as feedings are concerned. Actually, it may be even a little better than Julianne normal. She has been basically just gagging here and there...very little retching...maybe once a day. That is surely an improvement. New G.I. doctor wants her to stay away from cow's milk products for a month so we've got her eating a little goat's milk yogurt, since one of the only foods she's ever seemed mildly fond of is yogurt. She seemed to like the honey flavor yogurt I found yesterday. She also drank a "fruit shake", a.k.a. fruit pureed into juice. She was excited to see it was purple just like Mickey and the Professor's fruit shake. I didn't measure, but I think she drank around an ounce of it. :) Oh! AND Julianne also bit off a little finger-tip sized piece of a biter biscuit then, at my urging, mashed it with her tongue and swallowed it. Improvement! Yay! Let's pray it continues! Sometimes (like today) I type a whole paragraph and realize that what I've written has so much unnecessary detail that it could be a food journal! Sorry...feeding consumes my thoughts sometimes.

Julianne is still scared of many, many things. She won't go outside without holding a hand, she screams during bath time, she kicks, screams and yells to get away from the doctors and nurses, she hates to have her diaper changed...it just breaks my heart. Thankfully we have about a one month break until the next doctor's appointment, as long as she doesn't get sick. Please continue to pray for Julianne's mental healing. She's kind of having a hard time with that. She'll all of the sudden look around the room and say, "No ladies! (nurses) Just Julianne and Mommy" or "No IV's, no blood (labs). Just Julianne and Mommy" So, I know she's still thinking about what's happened in the last month and a half. I pray that God would erase these memories from her mind.

We've been having a great time at home. Julianne has taken quite an interest in coloring and not just on paper, ha ha! She's also been swimming in her "kitchen pool" thanks to our hot, hot and also rainy days. She's been enjoying getting out more and just doing more of our usual activities. Julianne is singing more than ever!! Its so precious. I've made WAY-HAY too many videos!

Swimming in the kitchen pool

Dancing with her reflection in the oven

4th of July after church

More 4th of July

And more 4th of July

Like I said, I've been making way too many videos. Here's one of Julianne singing "Twinkle, Twinkle Little Star" and "Elmo's World".

Thanks for checking on Julianne. We're so thankful that she's doing well and STAYING HOME!! Thank you for all of your prayers. They are always appreciated. God is always good. :)

In Case You Were Wondering....

2010-06-30T08:21:00.003-05:00

We did make it home on Sunday!! It was a good day. :)

Sunday night Julianne promptly spiked another 101.5 fever. :/ She was also coughing like crazy and had a runny nose. When I called the doctor they agreed that it was probably a respiratory virus and to just watch her for now. Well, she's been coughing day and night for the last 3 days, but today she seems a lot better! There wasn't any coughing this morning. Maybe she's turned a corner.

Yesterday we had a follow-up appointment with G.I. This was with the new G.I. to whom the hospital referred Julianne. So far so good...I like him. When we first met him he stressed me out, but I appreciate that he's thorough. Julianne is doing SURPRISINGLY well with this cough! By "surprisingly well" I mean she's coughing all day, which sometimes turns to gagging, but hasn't been doing any retching and that's a BIG improvement from past colds. I'm so grateful for that because we've been able to get all of her feedings into her.

Julianne has been having a lot of anxiety issues and that's made Kent and I pretty sad for her. She hates to take a bath, take her shirt off, and really just about anything that involves holding a leg or an arm. My other "heart friends" have said their kids experienced the same/similar things after the Fontan. We'll have to just wait it out I guess. Every now and then she'll look around and say, "No ladies (nurses), no IV's...just Julianne and Mommy". We keep reminding her that no one is going to hurt her at home. No IV's, no blood (labs), no ladies...just daddy, mommy and Julianne. She seems to relax a little when we tell her that. Her bath was definitely something we're going to avoid for a little while though. It was THAT bad!

I think now she just needs to recover...mentally from all she's been through and physically from this new respiratory virus. Things are steadily heading back to "normal". Life is good and we are so thankful!! We are so happy to be home with Julianne and are enjoying everyday! Thank you so much for your prayers and I promise to have new pictures soon. :)

Not PLE!!

2010-06-26T21:29:00.004-05:00

We finally got the results of the test I've been so afraid of and PLE (Protein Losing Eteropathy) has been ruled out!! Thank you, God! I was pretty worried about that one. If you have a child who has had or will have a Fontan then you are probably at least somewhat familiar with PLE. Its a scary one and I'm glad that we're not on that road. So, that's great news!! Praise God!

All of her other blood, stool and urine tests (and there were A LOT) came back relatively normal. There were a couple of elevated or low numbers here and there but nothing to be alarmed over. Her EBV (Epstein-Barr Virus) numbers showed that she had this at some point, but most people have had this at some point. They don't know if that was last week or quite a while ago. This is the virus that can cause Mono and they said that can definitely give you an 11 day fever. As for the big belly...the abdominal x-ray showed that her organs are normal size and there are no visible obstructions. It does look like there is a lot of gas in her intestines though. Her stool today is being tested for various bacterial infections that can cause an excess of gas, but we don't have the results yet. New G.I. doctor asked me today if she passes a lot of gas. I told him I don't really know what A LOT is, I don't have any other kids....so...I guess compared to me.... The fast breathing is being caused by the big belly. Her heart looks great and lungs look "Julianne normal". Julianne's feedings are pretty much back to the way they were before we went to Boston...not great, but manageable. She'll cough/gag here and there and retch occasionally. Oh, and she does not have Tuberculosis either. :)

The consensus is that she needs to get out of here before she gets something else and we'll follow up with G.I. next week. So, the plan is for Julianne to be discharged tomorrow. Woo hoo! She will be so happy to be home. I hope it really happens.

Tonight we're thanking God for NO PLE, for Julianne's better tolerance of her feedings and for NO FEVER FOR MORE THAN 48 HOURS!! Please continue to pray that she heals and we can head home and stay there this time. I feel like we missed the whole month of June! I know there are many children who have spent a much, much longer amount of time in the hospital and I'm thankful that our stays are limited to weeks and days rather than months. I can't imagine...

Just Waiting for Things to Grow

2010-06-23T22:15:00.002-05:00

Julianne continued to spike fevers throughout the day. They have blood and urine cultures growing and a stool sample being evaluated. We still aren't sure what's going on. We are waiting for something to grow. The urine analysis showed a small amount of bacteria. Whether or not that will grow into something in the culture we'll find out in the next couple of days. We are on day 11 of these random fevers. Up until Sunday they were "low-grade". Now they are pretty much all over 101. That means she's confined to her room. G.I. came by today and we talked a little with him. He stressed me out. She had an echo yesterday and everything looked fine, so it doesn't look like a heart issue. That is a relief. Her chest x-ray looked normal for her and her labs were normal.

Julianne did eat some applesauce today, drank 110 ml total of water and 20 ml of milk! So she did pretty well on her oral intake...for Julianne. She's still on continuous tube feedings and has a few coughs and gags here and there. She is tolerating it for the most part though and that's good.

A funny thing happened last night. I had a nightmare of some sort...I think it may have involved a g-tube...Anyway, when I dream I cannot talk. Its like my tongue is paralyzed! I can't yell for help in my dreams. All I can get out is this high pitched whimper. So, that's what happened last night. In the midst of my whimpering I wake up to hear Julianne saying, "I hear Minnie (as in Minnie Mouse)." I didn't laugh last night because I was half awake, but this morning I sure did. Either she woke up and thought she heard Minnie or dreamed it into her dream and was talking in her sleep, which she does pretty often...just like her daddy. Those two can't have any secrets from me. :)

That's all for now. Tomorrow we'll watch more Mickey, blow bubbles till we're light-headed, do the hot-dog dance, read lots of books, and go "BOOM" on the bed. Oh, and probably get some labs drawn somewhere in there. Thank you so much for the prayers and encouragement. Y'all are so great to us! :)

Just When We Thought We Were Out...

2010-06-22T21:45:00.003-05:00

On Sunday I called Julianne's doctor because she had an elevated heart rate (not too bad, just 150's), fast breathing, a bloated tummy and wasn't doing well with her feedings. On Monday I brought Julianne to her Pediatrician for fast breathing, a bloated tummy, diarrhea and fever. He couldn't find anything particularly wrong with her. She's been having trouble with her tube feedings since last Sunday (6/13) and an off and on fever since that Sunday as well. So, today I brought her to Cardiology because I was really getting worried about the big tummy and feeding intolerance. They weren't comfortable sending her home not tolerating full feeds. Due to her delicate anatomy and rhythm issues, dehydration can be pretty dangerous. That landed us in Our Lady of the Lake again. She's now on continuous feeds and is being tested for various things including PLE (which is unlikely, but still possible and we are PRAYING that is not what's going on).

Today's hospitalization came as a surprise. Last week I knew before we left the house that we weren't coming home that night. Today...not so much. I was pretty sad about today's admission. I was sad to have to put Julianne through all of this again. I mean, she just got out! She kept saying "Ready to get back in car" "And now we go home?" "I wanna get back in carseat." I was really feeling down about the whole thing. Then my mom texted me and reminded me of my own words that God is always good and it made me realize I needed a change in perspective. He really is good all the time...even on "bad" days. As well as I like to think I know Julianne, He knows her better. If Julianne is in the hospital right now, then that's where she needs to be. We need to figure out what's going on and fix it. So we lied in her hospital bed together and watched Mickey, prayed and relaxed. We kept the big kid bed this time, rather than a crib, so I can hang out in bed with her more easily. Thankfully, they were ok with no IV for now, provided she continues to tolerate continues feedings. She's doing well with the continuous so far. She even drank 60ML of water through a straw. We're just going to wait and see what happens tomorrow. The G.I. doctor (who she has an appointment with on Tuesday) will be by to see her tomorrow. This is a new doctor for us. This admission will hopefully be no more than a few days.

Julianne is in surprisingly good spirits! She certainly doesn't look like she belongs in a hospital right now. You'll have to take my word for it because I forgot my camera. She was throwing herself around on the bed laughing and giggling. She still doesn't want anyone to touch her, but we are on the floor rather than in the PICU this time so its a little more relaxed. There aren't as many people in and out of the room and not nearly as often either.

Please pray that we'll figure out what's going on and that it will be easily correctable or go away on its own. Thank you so much for checking in on us and thank you for all of your prayers!

Just a Quick Note...

2010-06-19T22:23:00.001-05:00

...to say WE ARE HOME!

The Business

2010-06-18T17:25:00.003-05:00

Don't worry, I'll spare you. She needs to get busy doing some business. This girl and her g.i. system...its stubborn!

Anyway, Julianne had an upper G.I. today which led the surgeon to believe that her Nissen is still intact. That's good. The issue they saw in Julianne's lungs which they originally thought was a pneumonia is no longer thought to be a pneumonia because it went away really quick. It was more than likely a small Atelectasis (collapsed area), which she had in Boston. That seems to have cleared up. I was relieved that it wasn't an aspiration pneumonia...that scares me. We've never had pneumonia issues and certainly don't want to start now! It made me feel better that her Cardiologist, Dr. Crapanzano, wasn't very concerned about what he saw in the x-rays and I know he looks at heart patient x-rays all the time.

Julianne has done well on her first 4 doses of the new drug she's on. Its really just a watch, wait and pray kind of thing. Dr. Crapanzano feels that Julianne tolerates her SVT well and we would have plenty of time to get her to the hospital should she break through at home. We'll be praying it controls her arrhythmia adequately and there are no break throughs!

In the awesome department, we will likely go home tomorrow! YES! We'll see what tomorrow brings. Thank you for all of your prayers, comments and visits. We've appreciated them all. :)

Trying Something New

2010-06-17T22:24:00.005-05:00

After consulting with Boston, Dr. Crapanzano has started Julianne on a drug called Verapamil. It is a "calcium channel blocker" if anyone wants to know. Lisa (Dr. Crapanzano's PA) said they have some kids in their practice on Verapamil but not for arrhythmia control. However, Julianne's Electrophysiology doctor in Boston does use it for that purpose. Its relatively safe with few side effects...MUCH fewer and less serious side effects than our frenemy Amiodarone can cause. If Julianne could get on Verapamil and get off Amiodarone we would be pretty excited! I'm not one to count my chickens before they hatch (and even after they hatch I sometimes wait a few days) so we'll have to wait and see if she has any break through SVT. There's some room to up the dosage if needed and for now, the plan is that if she breaks through they'll up it. Julianne got her last dose of Amiodarone this morning. Now we'll just wait to see what happens with the new drug.

Julianne is having some real trouble with her feedings. We're not sure what's going on, but we had to use a pump to feed her over the course of an hour tonight. We haven't had to do that in probably a year and a half. There is some concern that her Nissen Fundoplication is no longer intact. Our fear is that the "possible" pneumonia (Oh yeah, now its just "possible". Its unclear whether or not its a true pneumonia, but they're treating it like one with antibiotics) may have been caused by aspiration of vomit that her Nissen allowed to get by. We have a consult with Dr. Hansborough (Julianne's surgeon) tomorrow. I'm not a big fan of more testing...really...not at all, but aspiration is a serious thing and we want to make sure Julianne is safe. If that means more testing (even though it might show us nothing) then we'll do it as long as its of possible benefit to Julianne and we'll pray that the results will be totally clear. Please pray that the source of her increased difficulty in feeding will be discovered and that any testing will clearly show whether or not the Nissen is intact.

It looks like we're hanging out here until at least Saturday. We've enjoyed our visitors who have stopped by in the last few days. Julianne has enjoyed Mickey Mouse and bubbles. This PICU room has the most comfortable hospital pull out bed I've ever slept in. It pulls out to a full size bed. I give it an 8. :) I do not have my camera with me. :( And I keep forgetting to ask Kent or my mom to bring it. So, I've only got one pic today...from my phone:

Have a great weekend! Thank you as always for all of your encouragement and prayers!

We Thought We Were Done For A While But...

2010-06-16T14:14:00.001-05:00

...apparently not. Julianne woke up this morning coughing a lot and was just really unhappy. I noticed the ruffle on her nightgown was vibrating so I checked her heart rate and, sure enough, it was over 220 BPM. We brought her to the Our Lady of the Lake ER and after a lot of struggle for IV access Julianne was converted back to a normal rhythm with Adenosine after about 3 hours of SVT. She woke up with it so we really don't know how long she was in it.

She also has a small pneumonia. Its possible that she aspirated and that caused the pneumonia. Being sick may have made her more susceptible to the arryhthmia and fast heart rate and that could be why this is just showing up.

It looks like Julianne will have to go back on Amiodarone and that the ablation didn't eliminate the arrhythmia. We really didn't want her to have to be on Amiodarone but we knew this was a possibility . The ablation was never a "sure thing".

So, Julianne is in the PICU now. She'll be started on Amiodarone and will be monitored for the next few days. She's also going to be getting anti-biotics for the pneumonia. She is not happy to be here! I'm sure you can imagine. :( I was pretty disappointed that she has to go through all of this again. I'm very thankful that God gave us the wisdom to check her heart rate and get her to the ER. I'm also thankful for Dr. Crapanzano and Lisa who are so wonderful at taking care of our girl. Most of all I'm grateful for God's constant care and watch over our little juju!

Please keep Julianne in your prayers as her meds are adjusted and she recovers. Thanks so much!! God is always good.
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Rewind

2010-06-11T21:53:00.005-05:00

So, I'm going to rewind here to Tuesday...the day after Julianne got discharged.

We'd heard from Miracle Flights and they said they could fly us home on Wednesday. Yay! We had a free day in Boston on Tuesday and decided to make the most of it. We decided to head over to the Public Gardens to ride the Swan Boats. We'd seen them when we visited while I was pregnant and they were so pretty. Julianne LOVED the Swan Boats! She is still saying, "I wanna ride on swan boat!" Its going to be a long time before we do that again, baby girl.

After the Swan Boats, a walk around Boston Common and lunch we decided to walk along the Freedom Trail. This is a marked path that takes you past many of the historic sites in Boston. It worked out perfectly. Julianne napped for a good part of it and was content in her stroller the rest of the time. We didn't actually finish the whole trail. We stopped when it lead across the Charles River and headed back to the Devon Nicole House. It was really great and a beautiful day for a long walk. I think Julianne was just happy to be out of the hospital. Speaking of that, I forgot to post what she said when we left the hospital! We were about a block away from the hospital on Monday when all of the sudden Julianne said, "I'm so happy!" I said, "Did you just say, 'I'm so happy'?" She said,"yeah!" Oh, it just was the the sweetest thing...almost made me cry.

We left Boston on Wednesday and it was, indeed, "bittersweet" as we'd been warned. Really, its just such a special place to me. I am so completely happy to be done with this surgery, but just a little sad to know that we will not be back for (God-willing) a long, long time. I can't explain it. If you've been in our situation, you probably know the feeling. I am, however, SUPER HAPPY, and not even a hint of sad, to be back home and sleeping in our own beds. God is good.

Our travel day was fairly uneventful. Julianne tried to run behind the counter where we checked our bags yelling, "GET THAT BOTTLE!!" She was trying to get the fire extinguisher hanging on the wall. Ha! Security was quite complicated this time because we had A LOT of liquid meds with us. They had to swab them all and then left one of my zip-locs open and the med leaked all over our bag. Note to self, check that all the zip-locs are closed after security inspects them. The first flight on Wednesday went...uhm....not so good. Julianne was in rare form. I'll leave it at that, ha ha! The second flight was much, much better and we arrived in New Orleans around 6 PM. We stayed at my aunt's house that night and then headed home for good yesterday. It was so great and my parents and grandparents even had a little welcome home party for us, complete with Raisin' Canes chicken!

Now, we're relaxing in our own living room. Julianne is sound asleep. She's been having a little fever pop up here and there and having some nasal congestion. Kent had the same thing yesterday, so we're thinking and hoping its just a cold/virus. Dr. Crapanzano felt we could probably ride it out and see him on Monday morning at her follow-up appointment which was already scheduled. So, we're just going to watch and wait. Julianne took a nearly 4 hour nap today! I think she's just "so happy" to be back in her own bed! We're so thankful that she's in there too. Thank you, God. Thank you all for your encouragement, prayers and love for our family. It has meant so much to us. More than I can say....

Its back to normal life now. Kent goes back to work on Monday and has a birthday on Wednesday. Julianne has a follow-up appointment on Monday and resumes therapy the following Monday. We're gradually memorizing the new med schedule (12 meds for now...should go down over time). Julianne is pretty scared of other people (besides her family) since the hospital. I think it will just take some time for her to forget all that has happened. She's also having a bit of a hard time adjusting to "real life". Julianne has been a little out-of-sorts about having to share her mommy and daddy with other people and about having to do what we ask her to do or not do. So if you hear wild screams coming from the back of church (or wal-mart, or winn-dixie) its probably Julianne. I'm confident this will just take time too. She's still sweet and precious, just with an extra shot of "two-ness" right now!

Its funny, but the first surgery required 35 days at Children's in Boston, then another 21 days at Ochsner. The second time encompassed 30 days at Children's. This time was only 18 days inpatient, but it sure felt longer than the others! Its so good to be home.

On Tuesday at The Boston Common Frog Pond

More at Boston Common...what a little lady

This is a Swan Boat. Someone sits inside the swan and peddles the boat.

Aren't they pretty!

Julianne loving the Swan Boat

"I'm as big as Boston!"

In front of the State House

Getting splashed with water from a fountain on the North End

The Old North Church. Notice the pew boxes...I would love to have those in church! Ha ha!
Each pew has an individual cubicle-like box.
Seriously, Julianne could play on the floor and I could just listen to the sermon. :)

A special place in our hearts. God is using this place to perform miracles everyday.

Sorry For The Lack Of Updates!

2010-06-10T09:47:00.000-05:00

I'm so sorry. We've had a pretty busy and long couple of days. All is well though and we have many pictures to post. :) For now we made it to New Orleans and now we're trying to get a rental car (they seem to be in short supply) and then we'll be headed home!!! Yay!
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It's True!

2010-06-07T21:28:00.002-05:00

It's really true. Julianne is out! She's free! She's wireless! Yay! We are so excited to have our baby girl back at the Devon Nicole House with us. The chest x-ray looked better, the labs looked good and we were on our way! Praise God! After waiting around awhile for discharge paperwork (which probably didn't take that long, but when you're waiting to be discharged it seems to take forever) we walked out of Children's Hospital around 2 PM. Dr. Breitbart has totally released Julianne and said we are free to return home and follow up with the local cardiologist, Dr. Crapanzano. Our plane tickets are for Friday, but we're trying to get them moved up. We flew through a group called Miracle Flights for Kids and they have to do all of the travel arrangements for us. We are supposed to hear from them tomorrow about whether or not they could change our travel date.

Julianne, Kent and I have been through so much at Children's Hospital...some of the best and worst days of our lives. The care she's received there has been truly amazing and we are blessed to have been able to experience such kindness and compassion from all of the doctors, nurses and staff. It's overwhelming to think that she's made it through three open-heart surgeries!! I know that she will never be "fixed" and other issues may come up in the future, but it sure is nice to have those three big days off of our calendars!

Tomorrow we're planning to take Julianne to Boston Common and the Public Gardens. It was a such a beautiful place to visit when we were here when I was pregnant. We wanted to take Julianne somewhere other than a hospital in Boston and thought that would be a great place!

We'll let you know when we're headed back, but for now we're just grateful to all be sleeping in the same place again. Thank you, God!

Julianne with everyone's favorite Dr. Breitbart

All dressed up and ready to go!

Waiting for the discharge paperwork (Julianne fell asleep)

We're Getting Out!!

2010-06-07T12:04:00.000-05:00

Yay!!!!!
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Lazy Sunday

2010-06-06T18:38:00.007-05:00

Here is some exciting news: JULIANNE MIGHT GET DISCHARGED TOMORROW! We would still have to stay in the area until her follow-up visit later in the week, but I think she'll be thrilled just to be out of the hospital!! We have our flight home scheduled for Friday, so hopefully we'll make that!! Tomorrow's discharge depends on her chest x-ray, lab results and if Dr. Breitbart says she's good to go! We certainly want to make sure she's ready. We don't want to leave just to come right back up here again. No matter how much we'd (that includes Julianne) like to head home, we want what's safest for Julianne. The fluid in her chest looked better again, so they were able to drop one dose of the Diurel (a diuretic). Please join us in praying that the fluid will continue to dry up and that tomorrow's chest x-ray will be even better.

We did more playing today and even met up with some "heart friends" from Louisiana when they arrived this evening. It was a rainy day here today so we didn't really get any garden time. We did walk out onto a smaller garden for a few minutes though.

Julianne showing us who this trip is all about :)

With mommy in another garden

Petting the wall dogs

Balancing on her ball (her therapists would be so proud)

Thanks for checking in on us! I hope that tomorrow at this time I'll be typing, "We're all at the Devon Nicole House!" We're thanking God for another great day and praying for continued healing for Julianne. Thank you for all of your sweet words! It always brightens our day.

2010-06-05T20:47:00.004-05:00

The chest x-ray looked better today! She may be able to get rid of one dose of the Diurel tomorrow. We'll find out after tomorrow's chest x-ray. Julianne's electrolytes looked better today, so that's good news as well!

I don't have much medical news to report today. We spent the day doing a lot of walking around. Julianne is no longer content to stay in her bed. We like it that way! It means she's feeling better. :) She walked around a lot by herself today. She wasn't feeling up to stepping up steps, but she just needs more time to recover. She was off her feet for almost 2 weeks. We looked at fish, went back to the garden, looked at the balls, went to the CVS that's in the hospital, played ball in the Patient Entertainment area, Julianne met friends in the halls, played ball in the garden, fed her mommy and daddy french fries, rode the elevator that stops at every floor, drank another 60ml through a straw and ate almost a whole jar of pears and a 1/2 jar applesauce. Now she's conked out!

Funny thing, it's another Louisiana gathering up here as we've already met 2 more families from Louisiana and we know 2 more that are on their way this week!

Below is a great picture. Its Julianne's monitor! Look at those Oxygen Saturations on ROOM AIR! I can't remember if I mentioned this or not, but Julianne has a non-fenestrated, extra-cardiac Fontan. Dr. Pigula ended up not giving Julianne a fenestration because her pressures were so good in the cath lab!! Apparently this is not something they do all that often here. It can mean a little extra fluid draining time, but it also means higher O2 sats sooner AND it means we won't need to have a fenestration closed via cath in a few years. The change came as somewhat of a surprise to us, but I'm really happy she's doing so well with it. :)

Taking a picture with Minnie

Watching the bouncing balls with daddy
(it looks like Kent and Julianne are almost transparent! Ha!)

Statue in Prouty Garden

Dr. Julianne...always on call, even when recovering from her own surgery. :)

Today was another good day! Julianne gets a day off from labs tomorrow!!! YAY!!! That will be great! We are thanking God for so much and praying for Julianne's continued recovery. He is always good. Have a wonderful Sunday!!

Staying Through the Weekend

2010-06-04T19:08:00.002-05:00

Julianne's chest x-ray looked "stable" today, which means it didn't really change. Dr. Breitbart and the others were happy that the fluid had not increased and we were too!! They're keeping her on the large amount of diuretics that she's getting now. That means we're definitely still in the hospital for the weekend as they are not comfortable discharging a patient on that amount of diuretics. Its possible that she'll be discharged next week. Julianne's Potassium is low again so they upped the dosage of Potassium. Its a huge amount of liquid! I seriously don't know how they can get a child without a feeding tube to take all of these meds. It must be really tough. I've been thankful that she has a g-tube we can put the meds through.

In the awesome news department, Julianne drank 60ml of water through a straw!!! She does not drink from straws normally. She doesn't have much of a "suck" but she seems to have figured the straw thing out. She may have a swallow study on Monday because of all of the coughing and gagging she does while eating. I have mixed feelings about this...please pray that it will go well.

Today Julianne is 2 weeks post-op. She looks great! Her belly button even came back! I can't remember if I posted that it had disappeared. She had so much fluid in her that her belly button turned into a slit! Ha ha! We did a lot more walking around today, went to playroom, saw the "bouncing balls" in the lobby and went to the garden.

Please continue to pray for Julianne's healing as we finish up our stay here. We are hopeful that she'll be out sometime next week! We'll keep you posted. Thanks again for checking in and, of course, thank you for your prayers!

Check out that belly button!

In the garden with her "lipstick"

The beautiful "Prouty Garden"...such a great place to have at a hospital!

The Word of the Day is: Playroom

2010-06-03T20:55:00.005-05:00

We went to the playroom twice today! Julianne really likes it in there. I guess she knows no one is going to come mess with her! Ha ha! She had a fun time coloring, playing with balls and puzzles and blocks and rolling around on a mat. She even had a visit from a special lady (see video below).

Julianne's chest x-ray looked a little better today. The Pneumothorax is not of much concern now. The main concern now is a line of fluid that she still has in her pleural area...that's the area between her lungs and chest wall. If the x-ray tomorrow shows that the fluid has decreased there is a chance Julianne could get discharged this weekend! If not, we'll be in at least until the beginning of next week. We've been told that when she is discharged we may have to stay a few extra days for a follow-up just depending on her status at the time of discharge. In addition to the chest x-ray, Julianne has an echo scheduled for tomorrow. I also wanted to mention that EP hasn't seen any rhythm issues come up since she's been on the floor! Thank you, God!! This has always been an area of concern for us, so hearing that was great news!

That's all I've got y'all...a pretty short update. I do have pictures and video though:

Playing with her "pool" again and listening to music

Then she wanted to get in

Look at those toes...

Is it just me, or has she gotten taller?

Seriously, why color with one crayon when you can use two?

A heart for daddy!

In case you couldn't tell, that was a clown in the video above. In typical Julianne fashion, she was happy to tell the clown what she did or didn't want to happen. I think the fatal error of the clown was in telling Julianne that her name was DOCTOR Dazzle. It was kind of over after that. I felt pretty bad about that. She did really like the bubbles though and wasn't nearly as scared as we thought she'd be.

Today was another great day with our baby. That is one great thing about being in the hospital with her. There's no job, no dishes, no errands...just time...time to spend with our JuJu. Such precious days. :)

No New Chest Tube

2010-06-03T10:39:00.001-05:00

This is just a quick update to tell you that Julianne did not need a new chest tube! We've heard that the Pneumothorax looked a little better this morning, so they're going to just keep watching her for now. I can't tell you how thankful I am that she didn't need another chest tube!!! Thank you, God. :)

Tube

2010-06-02T19:14:00.002-05:00

So, the great news...THE CHEST TUBE IS GONE!!!! This is such great news. Its so much easier to move Julianne around and so much more comfortable for her. For the first time since her surgery Julianne fell asleep while I held and rocked her today. She'd just been too uncomfortable for that with the chest tube. Julianne ended up draining only 60ml of fluid yesterday and the chest x-ray looked better so, out it went!! The removal was still pretty rough for Julianne, but the result was worth it.

The not so great news is the air pocket, or Pneumothorax, that she has in her chest has gotten bigger. It looked better at her morning chest x-ray, but by afternoon it was taking up 10% of the right side of her chest. She was also breathing heavier and had a faster heart rate at that time. In addition to that she had an elevated temperature...but not a fever. So, the breathing and heart rate could definitely be from a fever. Anyway, they repeated the chest x-ray at 7 and it looked the same. By this time she was feeling a lot better...her breathing settled out and her heart rate, so they're just going to watch her tonight and do another x-ray in the morning. Please pray that this thing goes away. If it doesn't go away it would mean another chest tube for Julianne and we REALLY, REALLY don't want that and we're pretty sure she doesn't want that either.

We did get to make a quick trip out to the garden today. Unfortunately, Julianne wasn't really into it. That was when she was feeling kind of bad. It was nice to have her out in the sunshine though. :)

We did get some play time in today! We played with her water bucket and blew lots of bubbles again!! Julianne is such a happy girl...even in a hospital. :) Thank you so much for checking in on us and for all of your prayers and encouragement! We are thanking God for a chest-tubeless baby tonight!! :)

Real Quick...

2010-06-02T10:19:00.001-05:00

The chest tube is out! Yay!
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Maybe Tomorrow?

2010-06-01T21:21:00.004-05:00

Julianne might, I repeat, might get her chest tube out tomorrow! That would be super great! We'll see what she drains overnight and how her chest x-ray looks in the morning. :)

She drained another 140ml last night, so the chest tube definitely wasn't getting removed today. It turns out Julianne also has an air pocket in her pleural area, which is the area between the chest wall and the lungs. The treatment for one if these is, guess what, a chest tube. She already has one so....we'll just watch it. She was put back on 1 liter of oxygen today as her doctors thought having the extra oxygen might help get rid of the air pocket. Julianne also has to stay hooked up to suction (which is what powers the chest drain) since she has this air pocket. That means that she can't leave her bed without being hooked up to portable suction, which is as loud as a lawnmower! Ha ha! I just told her its just like when daddy mows! She was ok with that. :)

They're still balancing Julianne's diuretics with her lab numbers. The theme seems to be "delicate balance." She's on some sodium and potassium supplements now. The good news is that her "dry-ish" kidney issue is definitely under control!

The highlight of today was going to the playroom! Julianne was so excited to finally get out of the cart and onto the floor! I asked her, "Do you want to get out?" and she said, "Ya! Ya! Ya!" She was so excited she was bouncing in her seat. We loved it! Once she was out we still had to keep her on a short leash...literally. The chest tube isn't all that long! It was fun. I think we pooped her out. She took an almost 3 1/2 hour nap this afternoon.

Today was another really great day with our baby boo! Everyday is a miracle! We are so thankful that God has provided for us to be here with Julianne everyday. I can't imagine how hard it must be for parents to leave their child here because they have to go back to work. I'm very grateful that we're able to stay with her 24 hours a day. Thank you so much for all of your help in making that happen! As I've said before, we've been blessed with so much more than we could ever deserve!

And now for pictures:

Uhm...we've got some serious bed-head going on. Thank goodness for detangler!

This is the look Julianne gives the doctors and nurses when the come near her! Ha ha!

Playing with her counting cards

This is Julianne's chest tube drain. It has bubbling blue water in it. In the playroom Julianne said, "I wanna touch water." So we told her she could. Then she said, "I wanna swim in it!" It is a pretty blue...but a little too small.

Drumming on a ball

So excited to play!

Playing "stack-em-up"

Today Is Not The Day

2010-05-31T13:43:00.002-05:00

Today is not the day we lose the chest tube. Julianne drained another 126ml yesterday and the surgeon (one of the same that has seen her since she was just a few days old) didn't feel comfortable pulling it with that kind of drainage. Having to put a drainage tube BACK IN would be a big setback. It would mean she'd go back to the CICU and have to be fully sedated. We don't want that! So, we will wait until she's dry enough to get the chest tube out. God's timing is perfect. Not to mention, we've had friends who have drained wayyyyyy longer than this! So, I'm thankful that her drainage does seem to be lessening even though its not enough to remove the tube yet.

Weird little bit here...a hospital volunteer just finished loudly singing "Danny Boy" in another language to our roommate. I mention that because Julianne is napping. Ahhhh...roommates. :) The volunteers are seriously great though. They rock and stroll babies who's parents can't be here all the time. Did I post that we got moved to a "B Space" the other day? Well, we did. Yay! Its a little bigger than the space we had and it has a window. Plus, our current roommates are a lot quieter than the previous ones. Thankful for a B Space!

Thanks for checking in on Memorial Day. We're so grateful for all of the prayers. :) I will try to post some pictures this evening!

Tomorrow Could Be The Day!

2010-05-30T19:54:00.006-05:00

It really could. If the chest x-ray looks good tomorrow then we might just lose this chest tube! That would be super! Julianne had a great day today. She stood up in her bed. We got her to take a few steps. She got rid of the oxygen and is staying in the 90's on room air! Julianne wanted to sit on my lap for a long time today and that was a such a sweet time together. She's been too uncomfortable to sit on our laps, but today she must've been feeling good. She went on 2 different strolls around 8 East today. We read a lot of books, played with playdoh, played in her "pool" and exercised those legs. She also took a 2 1/2 hour nap this afternoon! Kent and I went to church with John Piper while Julianne was napping (well, we watched a podcast of his sermon anyway) and had ice cream. God is good all the time...on good days and not so good days. Today was a good day for sure. :)

Well, we couldn't go without the rainbow legs

Play-doh time!

Hopefully, we'll post an update tomorrow that the chest tube has been removed! Please continue to pray for our JuJuBee. Please pray that the doctors will make wise decisions regarding her chest tube removal. We definitely don't want it to have to be put back in later! Thanks for checking in. :)

Saturday Evening Post

2010-05-29T16:32:00.002-05:00

We're still draining, but today's chest x-ray did look better than yesterday's and that's a good thing! Julianne is doing well today, nothing new to report. She is just being funny keeping us entertained, and asking to go home. Today she was listening to her "Sleep Sound in Jesus" CD and the first song is a male and female duet. When the lady would sing Julianne would say, "Minnie's singing!" (as in Minnie Mouse) and when the man would sing she'd say, "Daddy's singing". Finally Kent said, "I guess Minnie and I are doing a duet!" I thought that was really funny to picture. Last night as Kent and I were eating dinner, I realized I wouldn't need my fork. So I asked Julianne if she wanted it to put in her "pool" (pink bin of water). She said, "Ya ya ya!!" I gave it to her and then she said, "I wanna eat mommy's food". Of course, I was gonna jump on that! So I held out my little cup of guacamole and Julianne dug in with the fork. I was thinking "Wow! She wants to eat!" Well, she then proceeded to hold the fork up to my mouth and motion with her mouth for me to open wide. Apparently instead of "I wanna eat mommy's food" she meant "I wanna make mommy eat food". :)

Grandpa and Grammie had to leave today so Julianne made sure to get in some final bubble-blowing playtime with them:

Making sure she's thoroughly informed on after surgery home care

Out for another stroll around 8 East

Listening to the elevators "ding"

We are already ready to for Julianne to be out of here for sure but we are SO-VERY-THANKFUL that it seems this stay will be quite a bit shorter than her previous stays. We're just waiting for that chest tube to drain and then things will be moving toward home. Thank you for all the love and prayers. :)

Drainin', Drainin', Drainin'... Chest Tube Keeps on Drainin...

2010-05-28T21:15:00.004-05:00

FYI...that title should be read to the tune of "Rawhide".

Well, the chest tube didn't come out today and that's fine. We'd rather her get it out when she's ready than get it out too soon and have to put it back in. She ended up having too much drainage yesterday to even consider getting it out today. Julianne's chest x-ray this morning was about the same as the last one. We are shooting for removal this weekend. Once its removed she will still need to stay a couple more days. Then, depending on Julianne's status when we leave, we will either be able to head right home or stay a few more days and come back for a chest x-ray or clinic visit. We won't know until we get closer to discharge day. Julianne keeps asking to "go to new house", "get in carseat", "go swimming in blue pool". She's beyond ready to go! If she only knew how short this stay is in comparison to her other hospital stays! Ha ha!

Other than draining and a few lab numbers being off because of how much diuretic Julianne is getting, she's doing well! She's still dealing with some discomfort so we're back to giving her the Oxycodone. The constipation is officially under control! Who made it official? Kent and I did after changing the endless stream of poopy diapers. :)

Julianne lost both of her IV's on the same day. Blah... So, we're really praying and hoping she won't need another one before we leave. Labs so far have gone amazingly well! Tamara (our new favorite phlebotomy lady) has been able to get the blood on the first try every time! Please pray that this continues!

Thank you so much being with us on this leg of Julianne's journey! It has meant more than you know to read all of your comments and emails and to know that so many are praying for our sweet girl! What a blessing to have all of you! Please, if you would, keep my parents in your prayers as they travel back to Louisiana tomorrow. Also, please pray that Julianne's fluid will dry up (She's also got some fluid around her belly area. Her belly button is now a slit instead of a hole. Dr. Breitbart said he's pretty sure Dr. Pigula did not close it up in surgery, ha ha!) and that any pain she may have will be managed easily. Thanks for checking on Julianne!

Finally got some bows for those pigtails!

Smelling her flowers

"Can someone bust me outta here?"

Chest Tube Today, Gone Tomorrow?

2010-05-27T21:35:00.000-05:00

There is a possibility that Julianne's right chest tube will make its grand exit tomorrow. It just depends on how much she drains tonight and what the chest x-ray shows tomorrow. That would be awesome!! We shall see...

Thanks for checking on us! As always, thank you for your prayers. :)

Oh, and sorry this is so short. I just ran out of time tonight. Enjoy your holiday weekend!
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T.M.I.

2010-05-26T20:55:00.003-05:00

I often think there's no such thing as "T.M.I." (Too Much Information) because I'm an information hoarder. However, I am going to spare you the details because, I'm not kidding, I could make this entire post about Julianne's poop situation. I'll just leave it at, she's dealing with some uncomfortable constipation issues. It seemed to be MORE THAN remedied this morning but they came back...ugh. :/ Poor Jujubee. We're working on getting her feeling better again tonight.

This morning with Julianne was really, really good! She started off feeling out of sorts, just seeming uncomfortable so we gave her tylenol and a lower dose of oxy and she perked up! We had a wonderful time playing with a tub of water, ha ha! She saw a bathtub on Mickey Mouse Clubhouse and wanted to splash, so we gave her a little tub of water to play in. That soon turned in to Cookie Monster, Ernie, Elmo and all of the Mickey Mouse characters taking a bath. She had so much fun! It was the most "Julianne-ish" we've seen her since her surgery. It brought us so much joy to see her like that this morning. I'm so thankful that God gave us that wonderful play time with her.

After being awake and happy for a several hours it was time to get her left chest tube out (yay!) and make her really mad (boo!). I went with her for the chest tube removal. Just as a side note here, I used to have a really weak stomach for stuff like that. I can remember my Oma having had surgery and my mom and aunts were looking at the incision. I was on the other side of the room and just seeing them look at the incision made me so woozy that I had to leave! I was about to pass out! Now, there's not much that makes me queasy. So, seeing something like a chest tube removal is totally not a problem for me now. I guess God toughened me up over the last two and a half years. It's a good thing! Anyway, Julianne fought the sedation. She had a pretty hefty dose of Morphine and Versed and would not go to sleep. The chest tube removal was tough for her and tough for me (emotionally) to watch. We're glad it is out though.

After the removal she slept for a couple of hours then we went downstairs for a chest x-ray. After which, there was more sleeping. Then we put her in a cart and took her for a nice long walk around the 8th Floor (which is completely a cardiac floor now). She slept through some of it and gagged and retched through some of it, but it was good for her to sit up and get more of the fluid on the right side of her chest to drain. After the ride she went right back to sleep and has been ever since then.

We're hoping for more awake time tomorrow for sure! That was truly the highlight of the day! We're thanking God for such a treat! Except for the constipation and gagging, I would call today a good day! Please continue to pray for healing for Julianne as she continues to drain on her right side. Please pray for relief from her constipation issues and that we'll get enough liquid into her to combat the "slightly dry" kidneys. Every little issue that arises makes me worry. I'm really trying to just let it go because "Who of you by worrying can add a single hour to his life?" (Matthew 6:27). I try to remind myself of that everyday. Worrying won't help...prayer will. Please pray for peace for Kent and I and really, for all of our family who love Julianne. :) Sleep tight!

After her bath and hair detanglement last night.

"I wanna splash too"

After Julianne's two chest x-rays and a chest tube removal she was holding on to the side of the crib while she was sleeping. It was like she was saying, "you people are NOT bringing me anywhere else today!!"

Her stroll around 8 East. We'll be looking forward to that again tomorrow. :)

Just a Little Update

2010-05-25T21:40:00.001-05:00

I'm so sorry for not updating today. The main theme of the day was drainage. We are still waiting on those chest tubes to drain. The left one is just about done and may come out tomorrow! Yay! The right one still has a significant amount left to drain according to today's chest x-ray. So...we wait. It would be good if she could have more lasix to help dry things up but she can't because her kidneys are a little too dry. We're adding an extra feeding tonight to see if getting a little more fluid in her will help out the kidneys and then up her lasix...as I've said before, its a fine balance.

We got a few smiles today and that was awesome! She was pretty tired most of the day but we had a couple of hours of awake time from 4:30 to 6:30-ish. She got a bath and got her hair detangled. :)

Julianne is sleeping comfortably and has been for the last hour and a half without the last 2 doses of oxycodone. We're watching her closely to make sure she doesn't have pain but we're hoping to cut down on the oxy and rely more on tylenol. That way she'll wake up a little and we can get her moving and get that fluid draining. We definitely don't want her to be in pain though!! So as long as she needs the stronger stuff, we'll keep with it.

So, we have a few little obstacles (oh and she has a swollen belly from constipation...currently being remedied) but things are defintely progressing! We are SO thankful that Julianne's numbers are good and that she's making progress! God is always good! Thank you for praying!
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Floor Time

2010-05-24T20:11:00.002-05:00

We made it to the floor. This is good. Its another step toward home. However, being on the "floor" brings a small set of challenges of its own, one of them being noisy neighbors, but we're cranking Julianne's sound machine way up! Anyway...she's doing well. The chest tubes are still draining. They're increasing the diuretics tomorrow to try and get rid of more fluid. We got a few smiles and fun this morning, but after that she was just zonked out! The pain meds are making her REALLY sleepy. She's no longer on Morphine...just Oxycodone and Tylenol. Tonight they're decreasing one of the pain meds with the hope that it will give her a little more awake time, but still keep her comfortable.

Overall, things are good! We're so very thankful for all of the progress! It will be really nice to get those chest tubes out because they ARE NOT comfortable. They have to quit draining first though.

Thank you so much for all of your encouraging words and prayers for our family. Its so nice to read all of your comments and emails. We don't always get to respond, but we ALWAYS read them. Thank you, thank you! Please continue prayers for our baby boo.

Moving on

2010-05-24T12:02:00.001-05:00

Julianne is moving to the floor today! This is a good thing. She's doing well. More later. :)
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Sunday Morning

2010-05-23T13:38:00.003-05:00

Things are going pretty well. Julianne will be getting one of her chest tubes out today - 2 more to go after that one. Also, she will likely be getting the line out that goes directly to her heart. She was started, very slowly, on her tube feedings. So, its another productive day. She will more than likely move to the "floor" tomorrow. That means she's doing good. :)

She has been having some problems sleeping. She really didn't sleep at all last night. She just couldn't get settled and when she finally did, she'd dose off and then wake right back up. Today we've moved to a room all the way at the end of the hall that is much quieter. She is napping now.

That's all I've got for now! Thank you for checking in! Things seem to be moving along!

Great News!

2010-05-22T23:07:00.001-05:00

This is just a quick update to say, Julianne has been extubated! Yay! She was taken off of the vent at around 5:30 today and has done well. We were so excited that it happened sooner rather than later. :) She's still having a few rhythm issues and her temp was up again this evening, but nothing that's making them overly concerned. She got two of her lines out and they've very slowly started her feedings. Julianne is really doing well tonight! Thank you, God! He has given us so much more than we deserve. We will update more tomorrow.

Oh, and you know there are pictures:

She was (and still is) pretty drugged and groggy

But, not too groggy to realize we were trying to take pictures and try to smile!!
It just melted my heart. My little precious...what a ham. :)

Saturday Update and Pictures (some post-op)

2010-05-22T13:59:00.008-05:00

Pictures I took the Friday before we left:

We can't wait to see that smile again!

The night went pretty well. Nothing unexpected is what we're told. She continued to get a lot of volume overnight. For those who would like the medical details she got 1150 ml of albumin from the time she came back from surgery until about 6 AM today. This was to keep her blood pressure up. She also got some blood and platelets overnight and this morning and that has helped her out too. The chest tubes continue to drain, but seem to be lessening. She was started on Lasix around lunch time and that should help get some fluid off. Julianne is still intubated. She is still being paced with the external pacemaker and seems to be in an out of a "junctional rhythm". They still feel that all of this is relatively "normal" for a patient so recently post-op. She does have an elevated temp this afternoon of 100.2 F. They've told us that they don't get worried unless she's more than 24 hours post-op...which she's not. A fever within the first 24 hours is still considered normal.

Julianne has been trying to wake up again today. They started her on an IV med to keep her sedated and she's still trying to wake up. Of course the first thing she wants to do when she moves is pull out that ventilator tube! So, her hands are restrained now. I would love for her to wake up and start talking and giving us kisses, but its still too soon for that. We are anxious for that time though. :)

Thank you for all of your prayers for our family. We are so very, very thankful. Julianne is truckin' along and making progress. She hasn't gotten any more Albumin since this morning and her blood pressure is staying where it should. She's also tolerating the Lasix well. That is great! The nurse just told me she will probably be extubated late tonight or early tomorrow morning depending on the chest x-ray and drainage. We'll be looking forward to that! Please continue to pray that recovery goes well and that Julianne continues to make progress. Also, Kent's parents head back to Lafayette tomorrow, so prayers for safe travel would be appreciated.

Finally, we decided to post a picture of Julianne today. Please know that its not posted to make you worry, or to shock you or anything like that. We decided to post it because a picture can convey so much more about the seriousness of her heart defect and surgery than my words can. HLHS is one of the MOST complex heart defects known. It's actually a group of heart defects. So anyway, please don't feel like you have to look at it, but below is a post-op picture. Proceed with caution, but know that things are going well and she looks "good":

Beginning the road to recovery

2010-05-21T21:27:00.003-05:00

So, its about 10:30 here and things just started settling down in Julianne's room about 45 minutes-ish ago. Its really a delicate balance after surgery. Nothing is going on that they didn't anticipate. Julianne has been dealing with low blood pressures, temperature changes, rhythm issues, lots of drainage and some tachycardia. They've been giving her a lot of volume (albumin) and that seems to be helping with the blood pressure. They've kept her temp from going any higher using ice and tylenol so that's great! She is being paced right now using an external pacemaker that is attached to pacing wires coming out of her chest. She's still draining a lot and it really just varies how long that will continue. Overall, she's doing well. Like I said, we've been told its nothing that was not expected. She is starting to wake up a little and right now she needs to stay asleep. That's a pretty delicate balance as well. There is a possibility that she could be extubated by morning if all goes well. She's still got a ways to go so please continue the prayers for our JuJuBee. We are ever so grateful for them.

Kent and I ate dinner in the waiting room and when we came back one of the nurses (actually the same nurse that Julianne had before her first surgery) put Julianne's hair in pig-tails to deal with the knots. Its very cute. :) I am posting a post-op picture now so, be cautious when scrolling down. The picture I'm posting is really pretty mild. Julianne's nurse is still giving her constant care, so I didn't want to be flashing the camera in her face. Sooooo I just got a picture of her cute little pig-tailed head for now. Even with all of this stuff on and in her, she is still so beautiful to us. Its almost like I can't even see the wires and tubes...I just see my precious girl sleeping. We're thanking God for the skilled hands and minds that worked on our baby today and for his ever-present guidance for Julianne's doctors and nurses and comfort for Julianne, for us and for the rest of our family.

About 3 hours post-op...Sleep tight, boo boo. :)

Surgery Complete

2010-05-21T17:49:00.001-05:00

We just saw Dr. Pigula and the surgery is complete!!! Thank you, God! Everything went well. He was able to do the Extra-cardiac fontan. The echo looked good, pressures are good, sats are good. Now she just needs to recover. I will update in more detail later. Thank you, again for all of the prayers. God is always good! We should be able to see Julianne in about an hour.
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Surgery Update #5

2010-05-21T17:08:00.001-05:00

The repair is done. Julianne is off of bypass and her heart is beating. :) Now they're going to do some observing and start closing her up. Its been about 5 hours since we left her and we should see Dr. Pigula in 1/2 hour-ish. Then it will still be a while till they get her all set up on 8 South and we can see her again.
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Surgery Update #4

2010-05-21T16:23:00.001-05:00

Julianne's repair is wrapping up and then they will begin warming her up & will get her off bypass. After that they will do some testing and hopefully be done. Our next update is at 6:00.
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Surgery Update #3 AND New Pictures

2010-05-21T14:26:00.005-05:00

We just heard that Julianne is now on bypass. They had a lot of scar tissue to get through. So, now they're beginning the "work" on her heart. Thanks for checking and praying!

Well, I needed something to occupy my time and this sure seemed like something I'd enjoy...and it was. :)

The morning after her cath making Minnie do the hot dog dance

Getting an echo the morning after the cath. She has been so good for her echos here!

Holding Daddy's hand during the echo (sorry its blurry)

Julianne was so relaxed for her echo she fell asleep! Ha ha!
She used to do this when she was an infant.

Julianne made a friend at the Devin Nicole House!

Reading books with Mommy.

Dr. Julianne is ready for her shift

Better check Mommy's blood pressure, she's got a lot on her mind :)

The ears look good...just wax.

With Grammie and Grandpa this morning

With Papa and Mimi this morning

With Mommy and Daddy this morning. I love that face!

Snoozing in the pre-op waiting area. We're so thankful for this little girl.

Surgery Update #2

2010-05-21T14:11:00.001-05:00

Julianne is doing fine. They're still "picking away" through all the scar tissue. Apparently she has a lot from previous surgeries. She's not on bypass yet. We'll keep you posted. I'm going to try to get some pictures uploaded for y'all!

Surgery Update #1

2010-05-21T13:01:00.001-05:00

We just heard that Julianne is doing well. She is stable. Anesthsia went well. All the lines and tubes are in and they made the chest incision at 1:50 Eastern time. The next update will be to let us know when she's on Bypass. When we know you will know. Thank you for all of the encouraging messages. Please know that every one is read and appreciated. We are blessed to have such a wonderful support team. More later...
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Surgery Time

2010-05-21T11:54:00.000-05:00

We just left Julianne sleeping soundly as they wheeled her away. Man...that was hard. We will be getting updates throughout the surgery. Please continue your prayers...as if I even have to ask. :)

Surgery Tomorrow

2010-05-20T22:41:00.003-05:00

Hey everybody! This is just a quick update because I really need to get to bed. :)

Last night went fine. There was nothing unexpected. Julianne slept better than I thought she would, which allowed me to sleep better than I thought I would too. Julianne got a total of 6 hours last night and I got 4 1/2-ish. She did nap 3 times today though. One of those naps lasted 3 hours or more, so I think she's doing well sleeping. She's been sore today, which is to be expected. Tonight when I put my hand on her chest her heart felt a little fast so I checked her heart rate. It was in the 130's, which is a little high for her. She also had a slightly elevated temp. I called EP just to make sure he thought all was well and the heart rate was from the temp and he did think that. He thought she could be about to spike a fever. So, we're staying on top of the fever with Tylenol and watching for any changes in her cath sites. Please pray that she will be fever free tomorrow morning. Fever and surgery don't usually mix.

Julianne's surgery is still scheduled for tomorrow. She is 2nd case so we don't have to be there until 11. We spoke with Dr. Pigula today and he said that because of Julianne's size he may be able to do what's called an Extra-cardiac fontan as opposed to the Lateral Fontan that we'd expected. He would prefer to do the Extra-cardiac because he would not be cutting into her atrium as he would with the Lateral. He won't know for sure which one will be better for Julianne until he opens her up. The heart does not have to be stopped for the Extra-cardiac Fontan as it does for the Lateral. She will be on bypass regardless of which one he does.

We expect Julianne to be extubated probably on Saturday. She'll probably spend 2-ish nights in CICU and then head to the floor. The hospital recovery time is estimated as 5-10 days. Which would be AWESOME and quicker than we expected!

I do have some great pictures from today, but I didn't have a chance to upload them. I will try to get those on tomorrow. Thanks so much for all of your prayers and sweet words for us. We are blessed to have so many who care about our family. :) Please continue the prayers for our JuJuBee as a I know you will.

Cath Results

2010-05-19T21:39:00.003-05:00

We are so happy to report that Julianne's cath went really well. Her pressures looked good. There was nothing to balloon or stint. Her function looked good. The ablation seems to be successful and her AV Node was not damaged. They did coil 9 collateral veins. These are extra veins that formed between her last cath and now. Leaving them open can cause additional problems after the Fontan so they closed them off using coils.

Julianne has done well since the cath. It took her several hours to fully wake up. She was a little cranky but her nurse said Julianne's wake-up was very mild compared to others he's seen. She got to start sitting up around 7:30-ish and really starting returning to her old self then. Playing with her "Mickey Mouse Clubhouse People", reading books, laughing and making phone calls. What a joy it was to have her back and happy! She is, however, VERY UNHAPPY any time a nurse or doctor has to come in and do anything. Who can blame her though, right?

We are scheduled to be discharged tomorrow morning. Then she has a few pre-op items before we head back to the DNH for some relaxing. I know Julianne is ready to be out of this bed. Kent's parents will be arriving tomorrow, as well! :)

Today went really well. The cath was very long...it had been almost 7 hours from the time we left Julianne to the time we saw her again. When we did see her again she had 3 IV's...one in her neck and one in each foot and 3 catheter insertion sites...neck and in each side of the groin. As scary as all of this is, I really felt a peace today while she was away from us. We just waited. We talked and laughed and prayed and waited for it to be over. Kent and I passed the time mostly by playing chess on the computer (during which I was defeated over and over again) and eating. My mom and dad were here with us and that was great to have their support and company. :)

We are praising God for a successful cath with good news and no surprises and an ablation that seems to be successful, but definitely wasn't harmful!! We are thankful that our sweet girl awoke from her anesthesia without as much discomfort as she could have. Please continue to pray that Julianne will recover easily and without complication from the cath, that surgery on Friday will be straightforward and complication-free and that her fears would be calmed.

One more thing...I am able to get emails and facebook messages on my phone and it was so great to be able to receive all of your encouraging messages and comments through out the entire cath as you sent them. It really made us feel comforted. :) Thank you!

Finally, here are just a few pictures from today:

Waking up is so very, very hard to do...and this was 3-ish hours into waking up.

Trying to smile while waking up is very, very funny!

Feeling better, playing with "mickey mouse clubhouse people"

Cath Complete

2010-05-19T14:03:00.001-05:00

She's all done! It went really well. More later. :)
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Cath Update #4

2010-05-19T11:55:00.001-05:00

The ablation is done and they think it was successful! That's good news! We just spoke with Dr. Alexander and he said there was no damage to the AV Node and that's great news! Now they're working on the coiling. Thank you for all of your prayers and encouragement. It means so much!
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Cath Update #3

2010-05-19T10:25:00.004-05:00

Julianne is doing fine...no problems. They think they've found a spot to ablate and are preparing the ablation catheters now. Soooo... that's where we are. Please continue in prayer for our Julianne.

Cath Update #2

2010-05-19T09:16:00.002-05:00

Julianne is doing well! Hemodynamics done-that's pressures, artery sizes,etc. Nothing to balloon or stint (that's good!). Starting the EP study now. They will do coiling of collaterals at the end. She's doing good.

Cath Update

2010-05-19T08:05:00.000-05:00

Julianne is doing well. They are just now getting the catheters in because it took so long to get her IV's in. Thanfully, she was asleep for all of that. :)

Cath is Underway

2010-05-19T07:27:00.002-05:00

We left Julianne at about 7:45 for her cath. She got some medicine to relax her and drifted off to sleep while I sang...just like nap time. :) It was pretty sad to leave her. They told us the cath will take anywhere from 3 - 7 hours depending on whether or not they can do an ablation. We should be getting our first update soon. Thanks for checking and, of course, praying! As they say on Lifesongs..."God is good all the time" and He really is. :)

A Very Long Day

2010-05-18T20:50:00.006-05:00

Well, today has been a very long day. We had to be at the hospital for Julianne's pre-cath work-up at 7:30 AM. She had a chest x-ray, labs, echo, ekg, met with Anesthesia, EP, Cardiology, Neurology, Hematology, study doctors and the Cath-lab doctor! We were able to take a break for lunch and let Julianne have a 45 minute nap, but then headed back to the hospital and didn't finish appointments until 5:30. Our poor baby boo was worn out! She was oh-so-very-done with it all! We came back to the DNH. Julianne had her bath and dinner and then got to visit with Grandpa and Grammie for little while before heading off to bed.

Julianne's brain MRI that was scheduled for tomorrow has been canceled. Julianne has a permanent pacing wire which Dr. Pigula put in during her Glenn with the thought that she might have needed a pacemaker between then and now and having that wire would prevent them from having to open her chest again. Anyway...that wire makes the MRI more risky. For Julianne's situation the risk outweighed the benefit and the MRI was canceled. I am not disappointed about that in the slightest. :)

The cath is tomorrow. We arrive at the hospital at 7:00 AM. Julianne will be asleep before we leave her side. Hearing that was a HUGE relief for me. I was envisioning having to leave her scared and crying. Thankfully, that won't be the case. I tried to get an estimate of how long the cath is going to be and all I could get was, "very long." Apparently the EP study makes it a lot longer. What's a EP study? I'll tell you... An EP study or Electrophysiology Study is when they try to "stir up" Julianne's arrhythmia and, if they're able to precisely locate its pathway, they ablate it by either "zapping" it or freezing it. This is known as an ablation. They've told us they are going to be VERY cautious with the ablation tomorrow. Using the zapping option, there is very little room for error and an error could mean she'd need a pacemaker. A pacemaker would put a lot of strain on her one ventricle. So, they're going to go the freezing route. He said they've got about a 50/50 chance of ablating the pathway. If they aren't able to ablate it then we'll figure out what the next step will be later. Other than the possible ablation, they will be coiling any collaterals that need coiling and checking pressures and sizes of her aortic arch, pulmonary arteries, etc and ballooning or stenting anything that needs it. Depending on what is done in the cath lab, Julianne may or may not get out of the hospital on Thursday. Even if she does get out, we'll be back on Friday for surgery.

Like I said...a long day.

You're not going to believe this, but I didn't take a single picture today!! What a slacker mom. Julianne did amazingly well during her echo, but the rest of the day was pretty tough so there weren't many photo ops. :)

We'll be updating tomorrow as Julianne has her cath. Its going to be hard to hand her over. I already can hardly wait until she's back in my arms again...and this isn't even the surgery! But, I've said it before, and I'll say it a hundred times more, God's plan is perfect and it is that truth that we cling to. Please pray for a safe and uncomplicated cath and ablation tomorrow and that God's peace would fill our hearts and Julianne's. We are so thankful that God has provided for us to take Julianne to Boston for her surgeries! Children's Hospital is amazing and we are SO grateful to be here!

Oh, and one more thing! During the work-up today one of the doctor's talked with us about a study he's doing and asked if Julianne could be a part of it. This study is funded by a grant from the American Heart Association! Remember the heart walk? Well, there is just one example of where your money goes. :) Thanks for checking on us!

I can't resist...here's a picture from yesterday:

We Made It!

2010-05-17T21:59:00.002-05:00

We are in Boston all settled into our room at the Devon Nicole House or, as its now called, The House on Autumn. It's such a blessing that this place is available to families! I'm not exaggerating when I say it would have cost thousands more over the last 2 1/2 years for us to make these trips if we would have stayed in hotels.

The flights were fairly uneventful. Kicking toddler legs and a small poop incident were the only mishaps of the day. Have you ever tried to keep a 2 1/2 year old's legs still for 2 1/2 hours and then for another 1 hour and 20 minutes? Its next to impossible. I did my best to keep her from driving the person in front of us crazy. On the second flight I took Julianne's shoes off and that made things a little better. Mickey Mouse was the entertainment of the day. Mickey Mouse DVDs and then stuffed mickey during descent along with the classic "There's a Wocket in my Pocket" kept Julianne entertained.

I guess it was keeping Kent entertained too. :)

We arrived in Boston around 2:00 PM, stopped at a bathroom for a much needed diaper change, grabbed our luggage and got a cab. It was the quickest we've ever made our way from the arrival gate to our destination! Kent was very patient transporting the load he had today (my giant carry-on, a rolling carry on, a cooler, the computer AND a carseat...as I said, patient. I only had to carry Julianne and roll our checked suitcase when we picked it up. Thank you, Kent. :)

The Devon Nicole House is just as we remembered it. They did get new mattresses, yay! We quickly settled into our room and so did Julianne.

Having fun with daddy

Looking at the very sweet cards the children at our church made for her

Seriously, I did not TELL her to look at the cards. I had them in a little pile near her toys while I put things away. When I turned around she was looking through them. It was so sweet! I ran for the camera. :)

It was a good day... Busy, but good. We are thankful for a safe trip and a such a great place to stay. Tomorrow we have to be at the hospital at 7:30 (so I better go to sleep...its almost 11:30 here) for Julianne's pre-cath work-up. I believe it includes blood work, an echo, ekg and possibly a chest x-ray. Then at 4:00 we go back to the hospital for a Neurology appointment. My parents will be arriving tomorrow afternoon, as well.

Thank you so much for your prayers and encouragement and thanks for checking in on us! We'll keep you posted!

Great Days

2010-05-16T00:13:00.002-05:00

Well, the big day is nearing. We will be headed to Boston very soon and wanted to fill you in on what we've been doing with ourselves for the last couple of weeks. First of all, we have someone to fill in for Kent leading worship! Yay! Thanks to one of our "heart friends" and of course God's providence, a really great substitute has been found. :) We haven't been up to much of anything else lately. We've been packing and spending a lot of fun times with Julianne. We were really trying to make the most of everyday we have at home with her as her surgery date draws near. Well, you know me and the camera...I have way too many pictures of all our fun times!! So many pictures, in fact, that I figured I'd just put them into a sideshow:

Make an on-line slideshow at www.OneTrueMedia.com

God is always good and we are so thankful that we have such a wonderful time with our sweet girl. We are grateful that He has provided for us to travel to Boston yet again and we are praising Him for his perfect plan. We are, of course, praying for safe travel and protection for Julianne as she undergoes the various procedures and surgery. Thank you so much for joining us as we pray for our daughter and thanks for checking in!! We'll update when we're in Boston!

I have to share this...

2010-05-05T23:33:00.004-05:00

There is a Chris Tomlin song called, "How Can I Keep From Singing" and it is one of my favorite songs. When I was pregnant and we found out about Julianne's heart it was on the radio a lot. Often when I'd begin to feel down about what she would face I would make myself start singing this song. It would remind me that God is so awesome, how could I be worrying when I should be singing His praise. Even now, when I start feeling worried about it all, I frequently call this song to mind as a reminder. :) It brings joy to my heart to hear my baby girl belting out those words that are so true...

"How can I keep from singing your praise
How can I ever say enough
How amazing is your love
How can I keep from shouting your name
I know I am loved by the King
And it makes my heart wanna sing"

It has become one of Julianne's favorites and I love that we can share that:

And in case you want to hear the "real" song:

Thanks for checking in on us. All is well as we prepare for our trip. Thank you so much for all of your prayers and encouragement!

Anyone?

2010-04-29T14:55:00.002-05:00

Hi everyone! Our departure date is coming up quickly and we are having a bit of a problem. We've so far been unable to find anyone who will fill in for Kent leading worship at our church in Zachary while we're gone. If you or someone you know has experience and can fill in PLEASE let me know! It is paid and would include practice on Thursday nights and worship on Sunday mornings. We will probably need someone for at least three weeks. If you don't know anyone (or even if you do, really...) you can help by praying that God will lead Kent and ZCC to the right person to fill in for him. Thanks a bunch!!

A Change In Plans

2010-04-16T14:04:00.004-05:00

Well, as the title of this post reads...we've had a change in plans. We are no longer leaving for Boston on April 26th. I received a call from a lady in the scheduling department at Children's Hospital Boston last week. She said, "I'm afraid I'm calling with bad news." My first thought was that insurance said they wouldn't cover the surgery (we have a different insurance company than we had 2 years ago). I breathed a huge sigh of relief when she told me that she was calling to reschedule Julianne's surgery. It seems that Julianne's surgeon, Dr. Pigula, is unavailable to do surgery at the originally scheduled time. So, our new dates are:

May 18th Pre-Cath work-up
May 19th Cardiac Catheterization and Brain MRI
May 20th Pre-op work
May 21st Fontan Surgery

I was somewhat relieved to hear the change in plans because April 26th was coming up much too quickly for my liking. I've found myself drifting off to "what if" land in my head lately and that is not a fun place. Its a daily struggle for me not to worry. Sometimes I actually say, out loud, "STOP! You're not going to think about that! God's plan is perfect". If anyone saw me they'd think I am crazy. Its definitely harder this time knowing all that we know from our past experiences about what can happen. There are a lot of "what if's" but God knows what He has planned for Julianne and His perfect plan is what brings me peace.

And what's a blog post without pictures, right?

Doesn't she look so grown up here? Oh, I can't stand it!

Julianne's Egg Hunt

2010-04-05T13:57:00.005-05:00

We spent Easter Sunday with my parents and sister, my grandparents and Kent's cousin, Craig. I really didn't think Julianne would want to look for eggs, but she totally surprised me! Even with no nap, she had a great time. Of course she was WORN OUT last night and is still pretty tired today (she's napping as I type)! I took way too many pictures as usual. Here are a few favorites:

This squatting and standing is hard work!

Minnie Mouse!

This egg was pretty deep!

This was the best picture I got of the Easter outfit...she wasn't up for posed pictures.

A fun day!

Here's a video of Julianne after we got back home in her new Minne Mouse PJ's making Mickey say, "You wanna come inside my clubhouse? Alllright!"

It is such a joy to watch her grow. We are so incredibly thankful that we get to enjoy these special days and celebrations with Julianne. God has blessed us with more than we could have ever asked for and most importantly, He gave us His son! We hope all of you had a wonderful Easter!

A Laugh a Minute

2010-04-03T22:50:00.008-05:00

Lately Julianne has really kept us laughing. Here are a few precious moments:

Me: "Julianne, what does Scooby Doo say?" She has never watched Scooby Doo. She's only seen her Mommy's impression of Scooby Doo. I was totally expecting her to say, "hee-hee hee-hee" the way I always do it. She didn't. Instead...
Julianne: (in a deeper than normal voice) "Hi, Julianne...It's me...Scooby Doo."

Me: "Julianne, what's your rocking horse's name?"
Julianne: "Ride-on-it"
Me: "His name is Ride-on-it?"
Julianne: "Yes"

Yesterday as Kent was mowing the lawn I pointed out the window to hima
Me: "What's daddy doing?"
Julianne: "He's riding."
Me: "What's he riding on?"
Julianne: "A FIRETRUCK!!"

Then, on the way to New Orleans on Tuesday to meet up with my great-aunt Sarah and my cousins (which we did and had a wonderful time!!), we stopped at Tanger outlet so I could do Julianne's tube feeding. After we finished I decided to use the PUBLIC restroom before we got on the road. I gave Julianne my purse to hold, just like I always do, to keep her from touching anything (this bathroom was especially dirty). I turned around for one second and....SPLASH! My purse was in the toilet...awesome. After the 30 seconds of shock wore off all I could do was laugh. I "washed" everything in my purse with sanitizer and threw away the purse itself and anything made of paper. Fortunately, I don't carry cash. I guess I asked for it...We are now working on what does and does not belong in the toilet.

Julianne had a G.I. appointment where we found out she is in the 75th percentile for weight and about the 18th percentile for height. Ha ha...our little butterball. Her doctor said to keep her calories the same for now, but if she's still this disproportionate after she's recovered from surgery we'll decrease calories. They want Julianne to have some extra padding for surgery and also we want to see if there's a growth spurt coming.

We've been enjoying our days laughing with Julianne and trying very hard not to think about what is coming at the end of April. Here is some of what we've been up to:

We've cooked together

We've enjoyed lazy days with the windows open and the breeze blowing in (South LA friends, you know how few and far between THOSE days are)

We've enjoyed taking picture upon picture (oh wait...that's nothing new)

We went to Z-Fest at which Julianne's favorite ride was the "shuttle" from parking...a.k.a a school bus.

She rode the carousel with daddy

And took a picture with the Rasin' Canes dog....mmm...makes me want chicken! Seriously.

She talked, danced, sang, threw balls to, and pretended to be mickey mouse for her new mirror

She got wild and crazy with the maracas at aunt Suzette's house

Finally, we made Easter baskets for our sweet neighbors and spent yesterday and today delivering them and visiting with our neighbors.

We have had a wonderfully, comical couple of weeks. Including an incident on Thursday in which I pulled out Julianne's entire g-tube button by accident. Ahhhh....I'm so thankful that God gave me a sense of humor. Its a blessing for sure. Tomorrow we'll celebrate Jesus' resurrection by attending church and having Easter lunch with my family. Julianne will hunt some eggs somewhere in there, but she doesn't know that yet. People keep asking her, "Is the Easter Bunny coming to see you?" and she has no idea what they're talking about. I think if I told her a rabbit was coming to hide things in the yard she'd probably say, "Noooo...I stay inside." Tomorrow will be a great day and I am very thankful for what we're celebrating. We're celebrating God's gift of salvation. I know I post about a lot of things for which I'm thankful, but this is the thing for which I'm most grateful. I pray that all of you would know this same joy. I can't imagine my life without it.

Happy Easter!

Cardiology Update

2010-03-17T21:48:00.005-05:00

This is just a "quick" update about Julianne's Cardiology appointment today. She did pretty well. We talked a lot about what was going to happen before we got there and she seemed ok until it was time for the pulse ox reading...then it was all over. She did well with the echo and excellent when it was time to visit with Dr. Crapanzano. We are making some adjustments to her medication Amiodarone. She has to have most of it out of her system by the time of her cath on April 28th. The reason for this is that they will try to "stir up" her SVT causing Arrhythmia in the cath lab and, if they can find it, eliminate the pathyway by doing an ablation. Unfortunately, Amiodarone stays in the system for like 90 days! So....Amiodarone is being cut in half and we're adding Propranolol and Digoxin. That brings the total medication count to 11. The Propranolol and Digoxin are to help prevent any break through SVT. Seven days before we leave the Amiodarone will be stopped completely. Dr. Crapanzano said to just be prepared that an SVT episode would probably mean an ICU admit and IV meds. We DEFINITELY don't want that to happen. We are supposed to check Julianne's heart rate using the pulse oximeter every few days to make sure its where its supposed to be...not higher than 160 or lower than 65. Please pray that this Amiodarone wean will go smoothly, with no SVT issues and all will be well for the cath on April 28th.

In the awesome news department...Julianne drank - DRANK!!!! - 30ml of whole milk today!! That's 1 ounce! She took each sip totally on her own. Normally, I have to pour it in her mouth or squeeze the sides of the cup to get it to pour into her mouth. This time I told her to take a sip after each bite of baby food and she did! Now, she didn't really express any enjoyment in drinking the milk. She was pretty much ready to be done after like 10 sips, but she continued and drank 30ml from her little yellow cup in her own little hands. Wonderful. :) I tried it again this evening, however, and she wasn't really into it at all...hit or miss I guess. It was still a great accomplishment for her and I'm very thankful for it!

Its no secret that I love taking pictures of Julianne. The poor kid probably thinks the camera is an extension of my body! We have an unbelievable amount of pictures of Julianne. Well, today was no different:

I have these two basket-like floor cushions that I keep stacked up with a pillow on top of them. They look like this:

And yes, they often have a cute, bow-headed little girl climbing on them. I am loving that Julianne feels free to take the pillow off, take the floor cushions apart and make herself comfortable. Like this:

Its a great reading spot for her! Never would I have imagined they'd be so useful.

Zoo Pictures and The Trouble with Pinto Beans!

2010-03-14T22:02:00.001-05:00

As promised, here are some pictures from the recent visit to the zoo!

First of all, what is up with this scary goat!! Seriously, Baton Rouge Zoo goers, have you seen this one? He has seen better days...poor thing. He even had a bandaged horn!

We have often been told how "good" Julianne is, and she really does listen pretty well. However, she does have her moments and now we have video proof. One of Julianne's favorite toys is a bucket of dry pinto beans and a set of measuring cups that she uses to scoop and pour the beans. Originally it was to help strengthen her wrists, but it soon became a favorite activity. Recently I've been finding small piles of beans near Coca, our dog. I was sure Julianne was the culprit, but had never seen her do it. One day I was making a video of Julianne, because that's what I do for fun, and saw her about to get a bean to throw at Coca. That's what I thought I saw anyway. After further review of the video I realized that the very beginning not only catches Julianne throwing a bean at Coca, but Coca EATING the bean! There's no telling how many dried beans this dog has eaten! They are quite the team...

Quite the team, indeed...on Friday a friend and her little girl came over to play. I put Coca in her kennel because she's a little unpredictable. After a while Julianne disappeared into the kitchen while we were in the living room and suddenly Coca came running out. Yep...Julianne figured out how to let Coca out of her kennel. She normally enjoys putting various balls and toys in the kennel and telling them, "get in kennel!" then closing the door. Then Coca gets upset because there's a giant ball, or a guitar or whatever needed to be kenneled that day in her kennel and she can't get in. These girls...

We Have Surgery Dates

2010-03-08T22:31:00.002-06:00

Yup...we do. We will leave on April 26th for Julianne's Fontan surgery. She is scheduled to have her pre-cath work up on the 27th, a cath, brain MRI and Neurology appointment on the 28th and then surgery on Friday, the 30th of April. We are so thankful to have gotten a room at the Devon Nicole House again (now called Patient Family Housing and includes a beautiful new Yawkey Family Inn a few blocks away).

We ask for your prayers as we prepare to go back into "hospital mode". Please pray, of course, for an uneventful surgery and recovery for Julianne and also for peace for her sweet mind. I know she will be scared. She is not a fan of people in scrubs, gloves, white coats, stethescopes, scales, height measurements, thermometers...pretty much anything that happens in a medical facility. She does love to tell them "BYE BYE!" though. Please pray for peace for us as well. This is not something we're looking forward to, but we will be relieved to have it behind us.

In lighter news, we took Julianne to the zoo this weekend and had a great time! I will try to post some pictures this week. :) Thanks for checking in on us!