Sunday, March 23, 2008

Little Miss Spunky

I have often called my daughter Aria by the nickname, "Spunky". Since Liviana's arrival I have also realized that she too qualifies for the nickname. My mom looked up the definition to spunky and this is what she found: Showing courage; possessing or displaying courage; able to face and deal with danger without flinching. Yes, that is definitly Liviana and pretty much all CDH babies.

I apologize, once again for the delay in posting. I have many updates since it has been so long.

Liviana had an Orthopedic Surgeon appointment on March 13th. He said that she did not have any evident curvature in her spine at this point. He said she did have multiple areas of hemivertebrae on each side in her thoracic spine. If she ends up having an equal number on both sides they will cancel each other out and she won't have any curvature. We are redoing x-rays in 6 months when we will be able to tell more. She also has some anomolies in her cervical spine (which is up towards the neck.) He concurred that her head turning issue is likely torticollis and recommended physical therapy. We had to reschedule physical therapy because of childcare issues so her first session is this Friday. I have already been working with her at home and see minor improvements already. There is still a little part of me that worries that the neck issue is related to her vertebrae issues. We will know fairly quickly if she does not show improvement from the PT.

At our OS appointment Liviana weighed 9lbs. even! She was also 21.5 inches, although that is the least accurate measurement. At her 2 month appointment the next day she was 8lbs. 15oz. The difference I attribute to a digital scale vs. a manual scale and not weight loss. Either way she is gaining wonderfully, still about an ounce a day. She is still in the 5th percentile for height and weight. Our pediatrician is not worried at all. Given everything she went through in her first 4 weeks they would not expect her to be average or higher. Our doc thought she would eventually catch up because she would continue to go through a growth spurt at a point where other kids would not. She is perfect either way.

She breezed through her 2 month check-up. She is doing wonderfully, happy and healthy. She has some dry skin issues but that is easily remedied. She has been off of her prevacid for almost a month now and is doing fine. I decided to try her off of it because I suspected that some of her discomfort was from the medication and not the reflux. She does have minor reflux issues still but nothing to warrant medicating.

She spends most of her days in the sling accept when she is taking a long nap, at which time I will put her in her bouncy seat. She smiles so much and gets so excited when one of the kids is coming to chat with her. She has rolled over a couple of more times and is tolerating her tummy time. She is sleeping great and slept until 5am the other night before she woke up to eat. Lucky me!

I am so excited to see her growing up. She still has really blue eyes and I think, accept for shade changes, they will be staying that way. Now we have a blond haired/hazel eyed, brown hair/brown eyed and brown hair/blue eyed; Hmmm, what a strange, yet beautiful mix of children.

With spring approaching I am getting excited about taking the kids for walks and to the zoo. Liviana loves her sling and will do great hanging out seeing the world while I push the kids in the stroller. I have taken a couple of outings with all three kids and it was much easier than I imagined when I was pregnant. Like I said before, it seems like Liviana has always been with us and the transition has been pretty easy.

Now, onto other CDH babes.

Sofia Rose was born March 10th in Kansas City. She is currently on ECMO but is improving and hopes to have surgery in a couple of days. Please keep her in your thoughts and prayers. You can visit her blog through the link at the right.

Cadenne Hope was doing great at home after having g-tube surgery and taking full feeds by mouth, Yea Cadennne. This past week she started spitting up all of her feeds and is back in the hospital. She may have an infection, they are still investigating. Please keep her and her family in your thoughts. Her link is to the right also.

Ned has had his third surgery and is doing great. What a superstar to go through hernia repair, heart surgery and bowel surgery and be doing so well. He is starting feeds and on the road to going home. Yea Ned!

Please keep Emerson in your thoughts. She is at CHOP in Philadelphia and has recently started running a fever again. They have discovered that a previous infection (E-coli I believe) has attached to the patch used to repair her hernia. They are now deciding whether to do another repair surgery now or give her antibiotics for 18 months and do surgery after the course. Please, please pray for her family. They just want Emerson home. You can visit her page by going to and entering OliverUpdate.

There are so many other babes. I will be adding more links on the right with carepages so you can follow others.

Awareness Day

Congenital Diaphragmatic Awareness Day is March 31st. I will be adding more info on awareness day this week. I am waiting to organize myself :). I wanted to give everyone a heads up though. You don't have to wait until March 31st to spread awareness so get to it :).

That's all for now. We have to get dinner ready. More this week with more photo's also. Much love.....Amy, Brad, Aria, Miles and the angel Liviana.


Anonymous said...

What a gorgeous little doll. I am such a push-over for a baby's smile. Love reading your updates. Keeping your family in my prayers.

Linda B

kmm0305 said...

Amy--Livvi looks adorable and sounds like she is doing GREAT! :)

I am so envious that you are close to such a wonderful zoo. We used to go there once a year, and now being 3 hrs away it is more than a day-trip. I am toying with the idea of having Leah continue her surgical follow-up at Children's and make a weekend/long-trip out of it every August. (Otherwise we were going to have her do follow-ups closer to home).

Anyway, enjoy the zoo! Its one of our favorite places to go.

Anonymous said...

Hi Amy,

I just have to say hello. I've been addicted to Liviana's story since our doula (Kelly-I was her leap day client :-) shared the link with me two months ago or so. Liviana is just about the cutest thing I've ever seen! I'm so glad that she has been doing so well and I hope she continues to do so.

Missy T.