Saturday, August 23, 2014

Summer fun

The last few months have been wonderful. Natalie turned one, and we had one amazing birthday party. It was such a huge celebration for us. A year ago today Natalie was discharged from the Lucile Packard Children's Hospital. I can't tell you how proud we are of our little girl. She has overcome so many challenges, and she still has the biggest smile on her face.

I am not even sure where to begin. She is doing really well. Natalie is almost 20lbs, which puts her in the 40th percentile. She says Dada, Mom, and a few other sounds. She rolls all over now, and stands assisted. These are huge milestones for her. As long as she continues to show such strong determination the sky is the limit.  She still does not love tummy time, but with incentive she will do it. Hopefully she will get herself into the crawl position soon. She is very determined and manages to find ways to get things she wants. She loves to dance and listen to music. She is even starting to sign a little. She is a Daddy's girl too. Michael adores every moment, and treats her like a princess. Samuel is still the best big brother we could ask for. He is all about helping baby sister now. He is asking more questions about Natalie's "boo boos", and I think he is understanding more about her impairments.

She failed her last swallow study, however we have decided to continue to feed her. She does great on thick puree, and wants to eat. She likes most food, and especially chocolate and whip cream! I hope to continue weaning her off the G-tube in the Fall.

The sad news is that were are heading back to California for another heart surgery. It's never going to be easy for us. Of course I keep thinking she won't ever need the surgery, but it's obvious her little heart can only tolerate so much. It's a good thing that we are going before flu season begins. Natalie is still not showing signs of heart failure that are obvious to us, however, the doctor's think her stamina should improve greatly. It's undecided what procedure will be done. There are few options, one of which will not require further surgeries. Michael and I are trusting her team of doctors. I remind myself that they have all done these procedures a thousand times, and know exactly what they are doing. I am not anticipating a long recovery, however, we are preparing to stay for an extended time.

Natalie is much more healthy, and we know how to manage her care. I hope we know all of her diagnosis, and have no major surprises.

Our summer has been full of wonderful memories. Natalie loves going on walks and to the park. It's sad summer is coming to an end, but we have taken advantage of all the fun Bend has to offer.

Thank you everyone for your support and encouragement. I know Natalie is such a joy to many. She is our inspiration and strength. I think about how much I love my baby girl, and I am reminded of God's love for his children. God's love is unfathomable to me, and I am ever so grateful for his kindness and grace. Many of you may ask how we are doing and how we cope. Our source of strength is from God. As we prepare to go to California, know that Michael and I believe God is faithful, and will guide us.


The Pierce Family 


1 comment:

  1. LOVED loved loved seeing these birthday pictures and what a year to celebrate. Sorry to hear that the time has come for that ominous heart surgery but I admire your faith and as you know, she's in the best hands...hear on earth and from above.