Sunday, September 30, 2007

(Here's Caroline in her Sunday dress playing with her toys.)

(Here's Caroline - now sick of her Sunday dress!)

Caroline has had a few interesting appointments lately. We met again with the cranial surgeon about the surgery for her fused sutures (ridge in her forehead). He told us that, while he would like to perform the surgery soon, he has decided to postpone the surgery for a few more months after speaking with a pediatric anesthesiologist. The peds anest. said that her ASD (hole in heart) should really be corrected before her head surgery takes place; that specialist thinks that the surgery will be too much for her heart in its current condition. The cranial surgeon still wants to speak with Caro's cardiologist and a peds anesthesiologist who specializes in cardiology to confirm this opinion.

This update is good and bad news - we like to hear that the surgeon is willing to postpone the surgery to allow Caro to get stronger, but, to repair her heart, the cardiologist has told us that he will need to perform open-heart surgery, also very risky. I guess it will still be a few more weeks before we've made a decision on the surgery.

The surgeon did say that he thinks Caroline looks stronger than she did at her last appointment - he was very impressed with her improvement. I don't know if I've posted about her jaw before, but there was some discussion between the docs about operating on her jaw to bring it forward thus allowing her tongue to fall lower in her mouth and stopping it from blocking the airway. However, the surgeon thinks her jaw has now lowered and her tongue is coming forward enough to make that surgery unnecessary - good news!

We also met with Caroline's geneticist for the second time since she was born. Many of you know that the geneticist gave us very scary news at our first meeting with her; she told us that Caroline has a high risk of passing away within the first year of life because of how her translocation formed, mainly due to the increased risk of apnea, aspiration, or seizures. She did say that, if Caro makes it to her first bday, that will be a very good indicator of a longer life span.

So, with that background, we went into this appointment with trepidation but did receive good news. The geneticist said the risk is still there because she hasn't turned 1 yet, but the fact that she hasn't had any apnea episodes, aspiration, or seizure is a very positive sign. She thought Caroline looked better and stronger than at the last appt. and said B and I must be working a lot with her for her to have made that much progress. I know it's because all three of us have been blessed with resiliency, patience, hope, and faith.

Sunday Afternoon

Sunday, September 23, 2007

When I was cooking this afternoon, Bryce put Caroline up on the bar. She started laughing and giggling a lot - so fun!

"Dad, I'm on the counter!"

Playing hide-and-seek with her bunny

Updated Stats

Friday, September 21, 2007


She used to cry after two minutes on her tummy - now she smiles there.

No more posing, time to work!

The Tired One

Caroline is now 12.1 lbs. and 25" long! Also, she's lifting her head from off of the flat ground - no wedge helping here!

Many of you have asked us what the status is about her cranial surgery. Currently, we're still waiting for her doctors to come to a consensus and then we'll make a final decision. Thank you for your prayers - keep them coming.

Still Practicing Her Head Control

Wednesday, September 12, 2007

Earlier today, we worked a lot on head control. I can't stress enough how much effort these movements are for her. For instance, her ASD (Atrial Septal Defect, or hole in her heart) requires her heart to work twice as hard to get the same results a typical baby gets when lifting his or her head - and that's just one of the disabilities weighing on Caro.

I am constantly learning about the amount of strength and coordination it takes for our bodies to do even elementary tasks - yet another life element I had taken for granted. And the clear determination Caroline has to hit these milestones despite the hand she's been dealt... it's humbling.

I thought Caro's determination displayed itself only for my I'm-her-mom-so-I-accentuate-the-positive eyes, but a few weeks ago, a discussion with her OT changed that. The OT said Caroline is a special baby - she has a very strong will to improve - something she doesn't see in several of the babies that come into their therapy center. She said "I can't teach that. It's either there or it's not - she has it. She is a special, tender spirit."

Anyway, here are some pictures of her workout:

She held her head high like this for awhile - much longer than in previous sessions.

"I like these toys" (or is she actually enjoying the TV that's on in the distance?)

"Unfortunately, no photography is allowed at this time."

"What did I just say???"

"If I ignore her, maybe she'll go away."

Holding Her Bottle

Wednesday, September 5, 2007

When Bryce was feeding Caro this evening, she reached up and put both hands onto her bottle. Here are the pictures:


"Are you my mother?"

Caroline and Mommy

Saturday, September 1, 2007

All of this morning, Bryce took care of Caroline to let me get a few things done. So, the first time I held her today was early this afternoon. When I picked her up and talked to her, she seemed so happy to see me. She started smiling and laughing. Bryce grabbed the camera and took some perfect pictures - enjoy.

"So nice to be with you again!"

The little beauty


I like kisses!

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