Sunday, March 30, 2008

Appointment Updates

Julianne had her Cardiology follow-up and her 6 month pediatrician appointments on Friday. Cardiology went REALLY well! They did an echo and said that her function has improved considerably (thank you, God!). Her doctor said that if he didn't know she was already having problems he probably wouldn't have noticed the amount of dysfunction she's having now. She was taken off of one of her doses of Lasix (diuretic), so she's down to once a day on Lasix. Julianne's next appointment with Cardiology is in 2 weeks. Her Cardiologist's office is also working on scheduling the Neurology appointment.

Julianne's pediatrician appointment went pretty well too. She weighed 15lbs, 11oz and was 26 inches long. So, that puts her in the 34th percentile for weight and the 48th percentile for height. She got her 6 month immunizations. Julianne gagged and vomited her way all the way through her rotavirus vaccine. They wanted to start talking about scheduling a Nissen surgery and g-tube. I told the doctor that we were under the impression that Julianne needed to get big and strong for her Glenn surgery and after the surgery we'd really be able to start working on her feeding. Her doctor understood and said that since we've come this far with the NJ tube that we'd be able to work on it for a little while. He did say that if her follow-up swallow study (this Wednesday) reveals that she's still aspirating then there won't be much to work on. He said we'd probably need to go ahead with a g-tube.

Julianne went more than a week without vomiting. Since Friday she's been vomiting 4-6 times a day, so that's pretty discouraging. We made an ER run, on the advice or her Cardiologist, today. Once again, they couldn't find anything wrong. They said it might just be her old friend...REFLUX.

Other than that, we're enjoying everyday with Julianne. She's so sweet and funny. She loves to grab our hair, hear "Itsy Bitsy Spider", and giggle like crazy when we pull a long-sleeved shirt off of her arms. Julianne is learning new things everyday. Its wonderful to watch. We're so thankful for her. :)


Allison said...

For weeks after his Glenn, Joshua vomited like crazy! We were very worried & then one day, about 5 weeks post-op he totally quit! He doesn't even take any reflux meds! I can't explain it, but the vomiting was worse than ever & then all of a sudden it was over! I hope the same for you!

Anonymous said...

She is doing so well. It was great to see her this weekend. She is getting to be such a big girl.

She will get over her little bumps in the road.

We're thrilled to have you all home and look forward to watching her grow and progress.

Hugs & Kisses

A. Stac

Anonymous said...

Yay Baby! Glad to read her heart is doing so well! Hope the reflux gets better-CLaire

Anonymous said...

I know you're glad to be home. We're so happy for you. We'll keep praying for you all. sherry and paul z.

Anonymous said...

I'm so thankful that her heart function is better-answers to many prayers. I will continue pray for her eating issues. God hears a lot about those issues from me for Julianne and Emma Kate!! Enjoy being home and what a beautiful spring you came home to.

God bless,
M White

Scott, Rebecca, Wyatt & Annabelle Butcher said...

We are so happy to hear of Julianne's good appointments! She is so special to us. I was beyond words to see the beautiful arrangement you sent to our family. We continue to praise God for every moment He blessed us with Annabelle. We are praying for Julianne & her continued good health. In His love~ Rebecca

Julie Miles said...

I'm so glad to hear that Julianne's heart function has improved! I'm praying for the swallow study to go well today too. Have they given you the option to try thickening her bottles to work on feeding with the silent aspiration? That's what we have to do with Ethan - add a little rice cereal to help him not aspirate. I know every situation is different so that may not be an option for her but just wanted to mention it, just in case. Whatever the outcome, I've come to accept that it's in the Lord's hands and He knows what's best for our little ones.


Suzie said...

Hi Jule-
My name is Suzie Dean and I have been following Juliannes's story from Annabelle's blog. I thought I would extend my excitement to you and your family on the progress that she has been making and hoping the vomiting will stop soon. I am praying hard for that. Our unborn daughter was diagnosed with HLHS about 2 1/2 months ago and I will be delivering baby Lindsay at University of Michigan sometime around the second week of June. Obviously finding all of you and getting answers to some of our questions has been absolutely wonderful because it is what is real, not just from a doctor if you know what I mean. I am still at a loss for words over Rebecca and Scott loosing Annabelle. That really hit me hard. I would like it if we stayed in contact with one another and share our experiences and knowledge of our little sweethearts. I hope the days to come for Julianne are the steps in the right direction and she, along with others, will be in our prayers everyday.
Talk soon,

Suzie said...

I meant
Hi Jessica by the way, not Jule.