Fontan time

Sorry I have not written in so long, but life has been moving so fast. Aharon you have grown so much and you are so smart. You can add things together, you can read letters and numbers. You know the entire alphabet and can count to 30 in english and 10 in Spanish and we don't even speak Spanish. You are a little chatterbox with big ideas and even bigger opinions. You are kinda a big deal. The time has come for your Fontan procedure to help your funky little heart. You had your surgery on Monday and you are doing great. All of the chest tubes have been removed and most of the lines. They are talking about discharging you to the step down unit today. Your kinda a celebrity and nurses from all over come to see the cute little boy with the long hair. Everyone has fallen in love with you from the housekeepers to central supply to nurses and doctors. You have touched so many hearts with your warrior spirit. You barely even need pain meds anymore except when we take you for your walking parade down the unit. I am so proud of you Tinki Boi and I love you so much. God is so good to us and he has been so good to you. I am really grateful for the love that God has shown our family. I love you so much Aharon and I am so priveledged to be your mommie. I see nothing, but greatness in your future. God bless you Aharon and God Bless our family. Always

Every Heart has a Story. This is Aharon's story.

I found out I was pregnant on Father's day. I was super excited to be having another child. At my 12 week ultrasound appointment the doctor saw that there was something wrong with my babies heart. He was not sure what it was and was not offering much positive information in the beginning. We were totally lost. We needed answers. I was referred to a leading fetal cardiologist at Childrens Hospital. He was able to diagnosis my son in utero. He offered us so much hope and guidance. I looked forward to seeing him and so did my baby boy.
The pregnancy was mostly uneventful, a heart defect is enough. I was followed closely and was scheduled for induction on Feb 15. Aharon had a mind of his own. On February 13th 2010, the morning of my 34th birthday, I went into labor. I was so blessed to have the best doctors by my side. I delivered Aharon that evening. He was 18 inches long and 6lbs and 6.4 oz. He was perfectly pink and he let out the healthiest cry when he arrived. Sadly he was wisked away from me after a quick glance. He stayed in the NICU for a couple of hours while he was awaiting transfer next door to childrens hospital. My wonderful husband followed him every step of the way. He was doing so well and had absolutely no signs of his complex heart defects except for a heart murmur. His oxygen saturations, respirations, heart rate, and blood pressure were perfect for a healthy boy, but for a child with DILV, small right ventricle, congenitally corrected TGA, PS, dextrocardia, his perfect saturations were a bad thing. He was in the NICU for 9 days when the medical team felt it was best to do a BT shunt and pulmonary artery banding, to preserve his lungs and prevent overcirculation and CHF. It was truly heartbreaking to hand over the son we convinced ourselves was so healthy and accept the truth about his special little heart. Thankfully the surgery went well and Aharon was home 5 days later.
He has had the most amazing 6+ months. He healed beautifully from the surgery. He is developing normally. His growth is on the low end of the charts, but thankfully the little booger is on them. He is truly amazing and when I look at him I feel so much joy in my heart and I am truly thankful for God's blessing. Thank you to God for giving us these gifts and thank you to God for blessing the doctors with the skills they have to save lives. I know that God is holding Aharon in his arms and hugging him every step of the way.
Aharon is scheduled to have his Glenn Surgery September 27th. We are scared, but we know that God is with us. Aharon may not have a perfect heart, but he has the heart of a lion. He is stronger than we ever imagined. I can see him in my future. I can see a normal boy with the same hopes and dreams as everyone else. I am so grateful that God felt I was a good enough mother that he gave me such a precious gift. I can only hope that Aharon grows up knowing how special he really is.