Sunday, September 28, 2014
Fall is in full swing. I am so glad that we are home to experience Fall in Bend. Although summer went by too fast, I am looking forward to the holidays. There is something about the crisp air, and fallen leaves that brings me joy. Although we were only gone for a few weeks, driving up to our house was a wonderful feeling. Samuel jumped out and said " I love my house"! Natalie was equally happy kicking her legs, and clapping. There is nothing more fulfilling than seeing your kids light up when they are home. Michael and I are overjoyed to be back with the kids. It's still hard to believe Natalie was discharged just 6 days after her surgery. This is nothing short of a miracle. God heard our prayers, and gave our family mercy. He protected Natalie every moment!
The weeks and days leading up to Natalie's surgery was incredibly hard. I feared losing Natalie. I couldn't imagine a day without her. It would have been easy to allow fear and worry consume every thought, but God's peace and guidance was our source of hope. God gave us the strength, wisdom and peace to know he ultimately is in control. As I write this I am reminded of all the other sick children right now fighting for their lives. Some of them waiting for organ transplants, going through chemo, struggling to breathe, and struggling with a multitude of health issues. This last week the CHARGE community lost two precious CHARGE babies. I can't imagine the pain and sorrow ripping through these families lives this very moment. I am not sure why some kids survive and others don't. It breaks my heart, and reminds me to hold dear to every moment with my precious children. In a moment it can be gone. Please take the time to love on the families you know with sick children. I can't tell you how much the support Michael and I have received has helped our family.
The first 48 hours after Natalie's surgery seemed to take forever. Thank goodness we took her to Lucile Packard. Dr. Reddy did yet another "first time" repair on her. She needed a patch to fix her pulmonary valve, however because her anatomy is not typical he couldn't place a patch in the typical place. Dr. Reddy managed to go through the back of heart and place a patch. This repair confirmed that if we had not gone to Lucile Packard for her birth and first repair she would have ended up with a one-ventricle repair (half of a functioning heart). Dr. Reddy has given Natalie a normal functioning heart. Although it is never a guarantee with a heart repair, I am hopeful she will not need another heart surgery for many years. The patch could last anywhere between 5-30 years. Dr. Reddy is a miracle worker, and my hero.
Of course Natalie's strong will and determination brought her through this surgery. After her first extubation Natalie's airway began to swell immediately. Michael and I watched as the doctor's decided what the next course of action was going to be. The odd thing is that Natalie managed to still have almost perfect oxygenation with just a small airway! The resilience and strength this girl has amazes me. After she was reintubated, Natalie went on steroids to help with the airway swelling. Of course all interventions end up with further interventions. The steroids caused a weekend immune system, which led to a tracheal infection. Luckily the infection was caught quickly, and she was given antibiotics. She bounced back quickly, and was ready to leave the CVICU. Did I mention my little hero only needed pain medication for the first three days! Spending just a few days in the step down unit we were sent home! What a different experience compared to the first time.
Now that we are back we are simply slowly getting back into a routine. Natalie has a cold, so we are watching her closely. Our primary care doctor and cardiologist could not be more happy with Natalie's health. She will continue to see the cardiologist for the next few months, and than hopefully every 6 months.
Michael and I have been encouraged from the support of all of our family and friends. It's not easy, yet somehow knowing we have so many amazing people loving our family makes these incredibly hard journeys a little easier. Thank you for everything!
The Pierce Family
Sunday, September 7, 2014
What a busy month around the Pierce household. Natalie is set to get heart surgery on September 15th. We have known she would need it for awhile now, but it still seems as though we are not ready. Maybe we will never be ready to take her. Giving her over to the surgical team is going to be gut wrenching, yet we know she needs the surgery. Last week she had one more echocardiogram, which showed an enlarged left ventricle. The plan is to either use a patch to fix her valve, or use a conduit. A patch is much more favorable as it will allow more time between her future repairs. A conduit will guarantee more repairs throughout her life.
She is bubbly, and as sweet as ever. Sometimes we can't get enough of her. She must be kissed a million times in a day. Her little toddler attitude is coming out, and we just love how demanding she is. Natalie is all about play, and is understanding simple instructions. She can clap when you ask, and is starting to give high fives. Signing is a slow process, but we are hopeful it will become more natural for all of us. Samuel seems to pick it up the fastest.
The next few months are going to be difficult, but we hold on to our hope in God. He has given us such an amazing daughter. We don't take a day for granted, and believe in his power. Please pray with us for wisdom and strength, and health for our princess. Pray that Samuel adapts quickly to his new routine, and Michael and I get the rest we need.Thank you for everyone who has supported and encouraged us. Natalie is such a joy and blessing to many. We will try to keep updates on the blog.
The Pierce Family