Little Heart

We visited the cardiologist this past Friday and received great news!! No heart surgery! We are so thrilled right now!

On Thursday we meet with the surgery team at CHOP to discuss getting a G-Tube yet again for Rylan. We are unsure if we are going to go through with it or not now that she doesn't need heart surgery, but figured we would talk to them and see what they say.

Dakota is fully crawling now. She does the army crawl with a little mix of belly off the floor crawling. She is quite the chatter box too! I love hearing her "talk." Dakota says "ba-ba", "ma-ma" and "da-da".

Rylan has also discovered her voice more recently and is saying "ahhh."

Yup, my girls are tutu models!!! I have started making some tutu's up and they are for sale at RD Hair Clips

VACTERL

Firstly, Rylan did not get her G-Tube due to her bowels covering her belly, so we need to meet with surgery so they can do the surgery in the OR.

Not sure who knows what, but Rylan has a syndrome called VACTERL. For a while I had a hard time believing this and more recently have started feeling comfortable talking to people about it. So hear goes.

VACTERL is an acronym for several anomalies. To be classified with VACTERL you need to have at least three of the characteristics.

Vertebral - Rylan has a few of her vertebrae fused as well as two of her ribs. This should cause her no issues in the long run.
Anus - Rylan has an imperforate anus. She has a loop colostomy in which she stools through. This will need corrective surgery. The surgery will consist of two or more procedures.
Cardiac - Rylan is dextrocardic and has an ASD and PDA. The ASD may or may not need surgery (we find out tomorrow)
Tracheoesophageal fistula - do not have
Esophageal atresia - do not have
Renal/Radial anomalies - do not have
Limb defects - do not have