Thursday, October 10, 2013

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.

Sunday, October 6, 2013

the begining

So our story begins. After a lot of thought I've decided to write about Natalie in hopes that her journey will inspire others. She is my inspiration, heart, and world. Bringing her home has been the most joyous time of my life. Although there are the challenges of bringing home a new baby, I adore every moment with her. I love holding her on my chest as we dance, kissing her cheeks, watching her stick her tongue out, playing, bathing her, and most of all watching her grow. I didn't know if I was going to be bringing her home. Before she was born I imagined what life was going to be like with her. I truly had no idea that my baby girl would open my eyes up to a whole new world. I had no idea that God would use her to teach me the depth of faith, absolute love and grace. I am blessed, and cherish my days with her.

God is our strength and healer. I think back through our hospital stay, and I remember moments of complete and utter peace. Sitting and looking at my baby who just came out of open heart surgery I knew that her guardian angels were with her. There was a lot of chaos with getting her set up in the room, doctors coming and going, and a ton of machines, and yet there was peace. Nothing prepares you for seeing your child in so much pain. It's crazy how being in the Cardiovascular Intensive Care Unit becomes normal. Day, by day we waited for Natalie to get better. It felt like every time we got close to discharge something crazy happened. Her sugars crashed, possible seizures, increased work of breathing, infection, feeding issues, etc.One day she would be doing great, and then the next she required some sort of intervention. It felt like it was never going to end. Luckily, Natalie was diagnosed with CHARGE early on so the doctors were prepared for many of the unique symptoms associated with the syndrome.....

That brings to me to second part of our story and our new life. Natalie was born with a rare and complex syndrome called CHARGE.
"CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations".

Natalie was born with both major and minor characteristics of CHARGE. As we continue to meet with doctors she may exhibit other symptoms associated with CHARGE. She currently has vision loss, hearing loss, increased work of breathing, chornae atresia, facial palsy, vocal chord paralysis,  and a repaired heart. She is our little fighter, my overcomer. She is one strong and determined little girl. I can tell you that she is like any other baby. She cries when she is hungry, dirty, tired, and over stimulated....and let me tell you she lets you know when she is not happy. She is at peace when she is loved. She loves her spa time, and loves her pacifier.

I hope this blog brings you inspiration. Our journey just begun. This blog with chronicle her triumphs and challenges.