Friday, June 19, 2009

Julianne Update ... Late

First, I wanted to say that baby Lindsay is doing better. She's off of ECMO and is still on the vent. She's just resting and recovering and rebuilding her strength now. Please continue to keep her in your prayers.

21 Months

Wow! I can't believe that Julianne is 21 months old. Its hard to believe that in just 3 months our little baby boo will be 2 years old! Its just going way too fast. At 21 months Julianne is EATING (more detail later in the blog), is "all done" with everything and everyone, is learning to "ask nicely," and is sweeter and cuter everyday. She crawls, she cruises, she bear crawls, she pretends to sleep and snore, she pretends to fall down and loves to "sit down pool" (i.e. sit on the steps in the pool). Thank you for continuing this journey with us and thank you for all of your prayers for our baby girl during the last 21 months plus! God has given us more than we could ever deserve or ask for and we are so very, very thankful.

Well, we've had a lot going on recently. We made a trip to the Our Lady of the Lake ER around 10 PM Sunday. We decided to give Julianne her last feeding before she went to bed Sunday night. She gagged on the first bite and then really wasn't into eating much so we gave it up and tube fed the rest of the feeding. She cried and fussed THE WHOLE TIME. We thought she was probably just tired so we brought her to her room to go to bed, read her books and then picked her up to rock her to sleep. She fell asleep not even 30 seconds after I picked her up...which is totally not normal. So, I laid Julianne down in her bed and she immediately opened her eyes. I hurried out of the room so she wouldn't try to convince me to rescue her from her bed. About 5 minutes later I went back to check on her like I usually do and she was still awake and breathing really heavy and fast. After this went on for a little while we realized it wasn't going to go away and we called Cardiology. They had me check her respiratory rate which was 54 breaths per minute. They felt that was too fast and were concerned, as we were, that she may have aspirated some of her feeding. to the ER. By the time we got there around 10:30-ish she had a fever of 100.4. They gave her some Tylenol and as soon as the fever went down her breathing returned to normal. They did an EKG just because she was there and it was good. Everyone was satisfied with the thought this was just something viral and would play itself out in the next several days, so we went home with a promise to see Dr. Chris (pediatrician) in the morning. As it turns out, it appears that she has something...possibly a sore throat, nasal congestion issue, cold of some sort. She's been kind of gaggy during her feedings. Not gaggy/retchy gaggy, just a little gaggy. Definitely nothing like it used to be. The gagginess seems to be resolving, but now she has some sort of conjunctivitis...awesome. Dr. Chris called in a prescription for some drops and I've been putting them in since last night. Her eye is so pitiful looking. Yesterday after her nap it was 1/3 full of yellow goop. Yesterday morning it was really swollen and bloody red. Its still red, but less swollen and not so bloody red. Hopefully it will be much improved by Monday or we'll be headed back to Dr. Chris.

The Ophthalmologist appointment earlier this month went revealed some good news. Julianne's astigmatism has improved! She went from 3 diopters in February to 2 diopters now. So, she'll have her next appointment in December and if her eyes continue to improve she'll avoid glasses for now. If they haven't improved then we'll get her some super cute glasses. We're very thankful for the good news.

Julianne went to the Cardiologist and it went pretty well too. She did much better than I thought she would during the Echo. Of course she cried but I was able to get her calmed down long enough for them to get some good pictures. Dr. Crapanzano said her heart looked good! The EKG on pulse ox were good. No blood pressure was taken because she was screaming and it would not have been accurate. Julianne also had labs drawn and we should find out the results Monday. If the results are good then she'll have no more labs drawn for 6 months! YAY! The blood work is to test for liver and thyroid function. Among many others, these are some of the side effects of Amiodarone. Amiodarone can also damage the eyes over time...the vessels in the eyes to be more specific. Dr. Crapanzano said we needed to get Julianne checked by an Ophthalmologist. God must've put that thought in my mind when we were at the Ophthalmologist because I just mentioned it to the doctor and he said he saw no evidence of any damage. So, we avoided a second trip to the Ophthalmologist. Less doctor's appointments = happy Julianne. Julianne's next Cardiologist appointment will be in six months, in December. That will be her last appointment before going to Boston for the next surgery, the Fontan. Julianne will likely have her Fontan around April of next year. Ugh...I'm not ready to think about that. I can't even imagine turning her over to the surgical team again...especially as "healthy" as she is now. :(

Julianne is still eating. YAY! YAY! YAY! As I mentioned, the eating has slowed due her current cold/virus, but is still WAY-HAY-HAY better than it used to be. She had been eating ALL of the food portion of each feeding. I was just tube feeding her liquids. Now that she's not feeling well she's less consistent as far as eating all of the food, but I think that's to be expected.

First container of baby food EVER finished by Julianne!!! AWESOME!!!

Julianne is still amazing us with her speech and understanding. Her newest thing is when someone says something is cute Julianne follows it up with, "it's cute...really cute" and IT IS cute. Check out the video. Be sure to note her messy bed-head. She better learn that the camera is always rolling here...even right after you wake up. :)

We've been enjoying the Summer and so has Julianne. She's been swimming, sprinkler playing and even tasted her first cake flavor of course! We've got plenty of pictures. Julianne says, "Picture you, mommy?" when she wants me to take her picture. Its pretty funny because if she's swinging or swimming she thinks we HAVE TO be taking pictures of her. If we don't she just keeps saying, "picture you, picture you, picture you." Maybe we take too many way!




Ready for church

"Picture you, mommy?"

More fun than one baby can handle


Anonymous said...

I am glad to hear the good news about Julianne's great medical visit. I was a little concerned about her viral infection but hopefully that won't materialize.

On a different subject altogether, the outfits that she gets her pictures in are simply adorable! Each one is more beautiful than the previous. She is a beautiful baby!


The Butcher Family said...

Thanks for the great update, Jessica! We love checking in on Julianne and seeing how much she's growing! Those pictures are precious...I especially love the one of her on the sprinkler pad looking up! TOO CUTE (or in Julianne's words, cute...really cute!)!
Praying this cold/congestion clears up quickly & Julianne continues to do well! Praising God for her great eating, too!!!
Love to y'all~ Rebecca

Anonymous said...

What a great update. Praising our God for a beautiful baby! Love all your pics,, but always especially love the videos of her. She is just darling and has special parents, too.

Jan Tompkins
SC via Annabelle's blog

Emma Kate said...

Oh, my...those pictures are too much! She IS cute...really cute :)I am so happy that she continues to eat so well. I must know where you found that little sprinkler pad. I think EK would LOVE that! Love y'all!

Anonymous said...

Every picture of her gets cuter and cuter "really" cute.

She looks like she is going to be a summer girl:)

I sure wish I could see her more often but cant wait to see all of you soon!!

Don't even think about April it is a looonnng way off and I know that God will continue to bless her and keep her in his tender care.


Love to all of you!

Aunt\Great Aunt Suzette

Anonymous said...

Wait till she she gets a little bigger and asks grammie if she can play in the mud puddle between the houses that you, Aunt Laura, Uncle Daniel, and cousins Jeff and Tyler played in! I'll have to dig up those pictures so we can all have a good laugh. What a bathing beauty on the raft in the sparkling pool. We love you all. We'll see you all in a few weeks. YAY!

Anonymous said...

I love the pictures of Julianne. She is quite a bathing beauty. Her comments are priceless. So glad she got good results on her tests.


Anonymous said...

I love the pictures-the pool shots are priceless!!! What a beautiful princess and I am so glad to hear the reports. God is so good and His grace is sufficient.

God bless,

Lindsay Dean said...

Thank you for the wonderful update on your sweetheart and also for the continuing prayers for ours. She doing it......just very slowly. ;-)
Love to you~

Jen said...

I know I don't have to tell you how thrilled I am to see her eating progress continue. She is doing great! Keep up the good work.

Jason, Denyse, Hannah and Carter said...

Too Sweet!! She is just adorable! What a special little one you have!

Kristy said...

Beautiful pictures! I'm so glad to hear that things are going so well for Julianne. Can't wait to see you guys again!

Anonymous said...

Hi Julianne,

We love your blog and hope that Mommie will update soon!

We miss your sweet face.

Love, Jan Tompkins
VIA Annabelle's Blog

Nichole Stanford said...

She's so pretty! Congratulations on your great week! That must feel aw-aw-aw-awesome.