Drip to Portland

It's been a busy week with appointments. Last week Natalie had another ECHO, swallow study, and went to OHSU in Portland. Our favorite pediatric cardiologist came back from a long vacation, so we're extremely happy she is back and taking care of Natalie. We are still waiting to get her ECHO results back. There is a slight possibility that her valves aren't growing, but right now it's a waiting game. Our doctor is going through the last three Echo's to see measure her valves, and Pulmonary Stenosis. We were sent home with a HOLT monitor which tracked her heart rate for 24 hours...and guess what? She is off her arrhythmia medication. There are no sign of any arrhythmia's.. I am so happy. We have another ECHO next week, and will be sent home with a HOLT monitor just to make sure. We also found out that her hearing loss is more severe than originally thought. Her right eye is still registering mild-to moderate, and her left is moderate to severe. We're doing another repeat test next month in hopes of finding the location of hearing loss so we can move forward and get her the appropriate hearing device. The plan is to have her using a device before she is 6 months old. Her Coloboma affecting both her retina and optic nerve. We have an option of patching her right eye to help strengthen her left eye, however , there is no "proof" that patching can help with optic nerve damage. She probably won't use her left eye much and will compensate with her right eye. She will wear glasses to protect her good eye..

Now the fun stuff. She is developing so much. My sweet girl loves her toys, especially her light up ones. No smiles yet, but I can see that she is starting to be more interested in interaction. Samuel adores her and loves being our little helper. She started bottle feeding, but does not want to latch. Hopefully she will learn soon. My hope is that she will be able to sit and keep her head up this month. She weighs 11lbs! I love that she is finally growing out of newborn clothes. She is equally sweet as she demanding. She refuses to nap in her bed during the day. She will nap all day long if I hold her. I'm hoping she will get used being in a sling or carrier...

As we all go through this journey and watch Natalie overcome so many challenges be reminded that God is bigger then it all. He is bigger then CHARGE, and made her perfect. I fall more deeply in love with this precious girl each day. I'm amazed already. God is faithful, and is holding her in his hands.