Thursday, June 19, 2008

9 Months Old & A Long Update

9 months old

Getting pretty good at sitting!

Daddy is so funny!

Well, Julianne is 9 months old today! I can hardly believe it. It seems like she's still a newborn (one huge newborn, that is). She had her 9 month check-up with the pediatrician today and weighed 22lbs, 10oz! She is 27 inches long and has a head circumference of 46 cm. Julianne's doctor says she's in the 50th percentile for head growth (he was really happy about that), 35th percentile for height, and 95th percentile for weight. As I mentioned before, her weight goes up in almost a straight line on her growth chart. Julianne's doctor feels that she's getting a little too big. While they'd rather her be on the heavier rather than lighter side because of her heart, they don't want her to be huge. He also felt that Julianne's weight may contribute to gross motor delays as its more difficult to support a larger body. So he's decreased the volume of formula that she receives each day. Hopefully this will create more of a diagonal increase in weight on the growth chart. Julianne had labs drawn again today. This time it was to test whether or not she has cow's milk and soy anti-bodies. The results will affect the decision of whether or not she should be switched to a less elemental formula now.

Julianne had her cardiologist appointment on Friday. She did really well. Her tricuspid valve is actually less leaky than it was in the previous echo. The ventricular function is better than the previous echo as well. We are so thankful to God for all of these improvements! The aorta is still narrowed, but no more than on the last echo, so it's not a concern right now. Julianne's blood work from Friday did show a slightly higher than normal thyroid level. This is more than likely due to the Amiodorone. Julianne's pediatrician, cardiologist and the endocrinologist will be discussing how to treat her and will let me know in the next couple of days. It will probably just be another medication. Today she is wearing a Holter Monitor to record what's going on with her heart over the next 24 hours. This is just a routine test that Julianne has every couple of months. The next cardiologist appointment isn't for 2 months!

Therapy is going well. Julianne seems to be showing a little more interest in the rice cereal and her motor skills are improving daily! Right now, the occupational therapist is working with Julianne's pediatrician to form a plan to get her off of continuous night time feeds and onto a feeding schedule more similar to that of a "normal" 9 month old. She's still gagging and retching with the Bolus feedings. It has been less over the last few days though. We've tried some different positions for her while getting fed. While it's not perfect at least she's not gagging and retching with EVERY feeding now. Usually she'd gag/retch 8-10 times a day. Over the last few days we haven't had more than 6 per day. Its not much, but its an improvement and we'll take it!

We celebrated Kent's birthday on Monday! It was a great time and Julianne entertained people at the restaurant. :)

Happy Birthday Daddy!

Tonight, in an effort to keep Julianne awake for her final bolus feeding of the night, I put her in her Jumperoo. That idea didn't work very well:

Thanks for checking in. We're hoping and praying that we'll see continued improvements in development and eating and less gagging. :) Thank you so much for your prayers!!


Elysmom said...

You, my Elyse couldn't tolerate bolus feeding even with a G/J tube. She gagged allot, so finally we had to do continues feedings. We started her off 22 hours long and slowly decreased it to the point that she could tolerate it without gagging.

Elyse couldn't have a nissen due to her stomach blockage, so the continues feeding worked for her.

It may be that Julianne might do better on it over night feeding vs the bolus and as she gets older, depending on your pump... they do have mini backpacks that she'll be able to wear as she gets more active.


Anonymous said...

Thank you for the update and wonderful pics. Happy 9 month to Julianne and 29th to Kent :)

Love Aunt Sarah

Anonymous said...

She looks soooooo adorable in those pics.....Love the one with Kent........We're glad to hear everything is progressing. We will continue to pray that she gets stronger and stronger every day!!

It was great to see ya this past weekend!! Hope to see ya Sunday!!

A. Stac

Anonymous said...

Thanks so much for all of your up dates. She is a precious little Angel. The rolling over and talking to her Dad video was priceless. Always in my prayers
Cheryl Ory

Anonymous said...

I am so happy to hear that Julianne is doing so well.

The doctors must be very pleased if they don't need to see her for 2 months!!

I am sure that the goods news was the best Birthday present Kent could get and she even came with a bow.

I continue to thank God for blessing Julianne and the both of you.

Love Aunt\Great Aunt Suzette

Scott, Rebecca, Wyatt & Annabelle said...

That is so cute...little jumparoo didn't do the trick! I am so in love with those chubby cheeks (I secretly hope they don't slow down in growth!).
Thanks for taking the time to keep us all updated! We love checking in on her!
Heart hugs~ Rebecca

Anonymous said...

That cutie little baby is such a big girl sittin up on her own! I'm sure she'll be drinking regular formula and eating more baby food soon. She adapts so easily. Love you all.