I might be the worst person to ever do a blog. I always plan on updating, but time escapes me these days. I often wonder how parents with 2+ kids can do it, or twins...yikes. Some weeks are more difficult than others. I can't imagine what Natalie feels like, going from one appointment to the next. Our new "normal" has become a routine now, and we seem to be getting the hang of everything. Most of the clinics know us by first name basis, and accommodate our needs. Natalie has seen a ton of doctors, and they have a really good idea of her symptoms and future interventions. I am so grateful for our doctors in Bend, Portland, and Palo Alto. It makes it so much easier knowing that Natalie is in good hands. I know many of them have a special interest in her, and watch her closely.
We are in holding pattern for now. It could be anytime when we go back to Palo Alto for her next open heart surgery. She is not in any obvious heart failure and growing strong. I'm hopeful that she will continue to grow and get strong before we go back. We are also waiting to hear back about getting Natalie a helmet. It seems intimidating to commit to it, but if our insurance will cover some of it we will likely move forward and get her one. She will have to wear it 23 hours a day for 3 to 4 months. Between wearing her BAHA, eye patch, and helmet she wont have any time without something attached to her.
I wish I could describe how cute she is. Her voice quality is improving so much. She isn't cooing as much as we would like, but each day she is vocalizing more and more. She loves to watch Samuel run around. He is becoming more and more interested in playing with her. He likes to show her all of his cars, trains and planes. He still has moments of jealousy, but it's obvious he adores her to pieces. He constantly says " I love my baby", and "my baby is alright". She is rolling side to side, and is still working on her head control. She doesn't mind tummy time and reaches out for toys. Feeding is still a slow process, but we are making progress. She can handle a tablespoon per feed. We are hoping to get her to 2 tablespoons twice a day before her next swallow study, which will probably be late next month. I don't want to rush into a swallow study unless I know she is can pass it.
I am constantly reminded of how blessed we are. She is our little miracle baby. I laugh when therapists and doctors are so surprised to see her progressing as much as she is. I just say that is my girl, and you watch! There is nothing this little one can't accomplish!
The power of prayer and faith keeps us going. I don't know what the Lord plans for this little one, but I do know he has his hands are on her. I am excited to see God mightily at work with her, and our family. There are many moments where I question God, and the craziness of our lives, but after each day passes I reflect and have such peace and assurance that God is in control. He knows Natalie better than anyone else and is giving us the wisdom and skills to take of her. What a privilege it is to take care of her, and Samuel.
I know so many of you wonder how we are doing, and managing everything. To be honest we are tired, and overwhelmed, but keep on going knowing that we have so many supportive family and friends helping us. It's truly incredible, and I know we simply could not take care of Natalie without the support from you! Thank you a million times for your thoughts, prayers, encouragement.
Love,
The Pierce Family
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