Back when Tracy and I were waiting from a call from Boston I had given them the “alarm” ringtone, and had told my wife that when we hear that sound, it’s Boston. This morning we were standing over Aiden, looking at what a beautiful gift God had given us the “alarm” went off.
“This is Dr. del Nido’s office, he’s out of the country but is on the line and would like to speak with you, do you have a moment?” — I about hit the floor because I honestly had no idea what to think. Was this an, “I’m sorry, we did everything we could too.” type conversation? We got into speaking about Aiden’s condition, see all of us have 4 chambers in our heart, Aiden has only 1 chamber. Aiden also has his pulmonary arteries far apart, where we have ours very close together. Then there is the real issue, his leaky valve. I swear, along with Tracy and the third party I had with me for reference had said Denver had told me they would have to “ignore” his leaky valve, Dr. del Nido said that wasn’t an option if we wanted to give Aiden a good quality life. Then we were told by Dr. Cambell that he would attempt to repair Aiden’s valve. I wanted to know the agressiveness that Denver would take as opposed to Boston in repairing his leaky valve but I know Dr. del Nido was out of the country. Dr. del Nido said Dr. Emani that works with him, they have dealt with 2 cases very similar to Aiden’s leaky valve + partial heterotaxy (his heart is in the correct location), in both cases they went in to remove leakage and repair the valve, leaving the sternum open, in both cases they were able to go back inside in a week and re-remove any extra leakage and re-repair the valve so the valve wasn’t leaking (or very very tiny), this lead to a good quality of life. The question is, how many has Denver seen very similar to Aiden’s, would be continue until it was repaired and how many of those were successful. Along with a slew of other questions I have with recovery time in Boston, how we’d get him home, follow up care in Denver, etc.
Let me make one thing very clear. Children’s Hospital of Denver is an AMAZING place. From the time we were referred we were treated with respect, compassion and honesty. We were given the greatest of coordinators, Shanna. This woman’s heart speaks volumes of her character. She has helped me orchestrate saving Aiden no matter what we have to do. Dr. Kaufman who is a cardiologist in the CICU is nothing short of a GENIUS (and has a very good sense of humor, a pleasure to be around) along with Dr. Adell who has to be one of the most compassionate cardiologists I have ever met. Every one of Aiden’s nurses are so sweet and caring and watchful over him, the entire CICU staff is so pleasant and helpful, even if your having a bad day, they lift your spirits. This place and the people that work there deserve medals. They also have one of the most amazing heart surgeons in the world, Dr. Cambell has saved thousands of lives and even though is a man of few words, has a great character.
I am however moved that a top world cardiologist took the time to personally call while out of the country to discuss for 25 minutes what routes he would take to repair my son, a personal interest, and we’re not even one of their patients. I can only hope that Boston has as caring of people as Children’s has in Denver. I would recommend CHoD to ANYONE… If your in for a CHD you’ve got a blessing in Shanna being your coordinator. I am thrilled to have been at Children’s Denver with such great care.
That said, the Dr’s in Boston we’d be having do Aiden’s surgery specialize in this valve repair. That’s something massive, and may be the difference to Aiden having a life. See in situations like this, we could have been from the beginning faithless with “Why god us? What did we do?”, We didn’t do anything. See we were chosen to be the parents of this Hero to many and we’re very thankful for the opportunity to not only save Aiden and show him the love of God and the love of people, how everyone is a miracle. We are also blessed to be bringing this much attention to Congenital Heart Defects and cannot wait until our journey slows, Aiden is home and we can agressively coordinate with the Children’s Heart Foundation and other projects to raise awareness and money to treat this condition. Our story is to show you, no matter what the odds, your faith in God can move MOUNTAINS, and when you are in your darkest hour the Lord will be beside you and guide you. This is our calling and I am more than happy to bear the pain of this to show how great the Lords work is.
With all of this said we have made the decision to cancel Monday’s operation at Denver. There are many questions yet to be answered before a decision is made. The CARD in the CICU said Aiden is doing great and there is no reason to rush a decision of where we make the surgery. Plus i’m going to make sure Dr. del Nido is personally in the operating room. He calms me about this situation and I know he can do it.
God will make the decision very clear to us. And when we make the call, if it would be Boston, i’d call his office and request Aiden to be transported to Boston for care, a chartered medical jet will be ordered out, equipped with a cardiac infant care team and Aiden will be medically flown from Children’s Hospital Denver to the Airport, once at Boston Airport, Air transported to Children’s Boston.
The rest of the day was amazing, both Tracy and I were able to do Kangaroo (skin-to-skin) contact care. Aiden fell asleep after looking at his daddy and oogling for a bit, then went to sleep, I fell asleep shortly thereafter. He is my little miracle and I love him so. We also have a volunteer organization known as “Now I lay me down to sleep” that is going to professionally photograph us for free. Here are some pictures for the day:
I’m glad so many get to witness such a huge miracle from God first hand. May he be with you in your daily journeys! God Bless.
Levi & Tracy
Matthew 17:19-20 "For truly I tell you, if you have faith the size of a mustard seed, you will say to this mountain, 'Move from here to there,' and it will move; and nothing will be impossible for you."We founded a Facebook group called "Praying for Children with Health Problems" - if you have a Facebook account and would like to receive notifications and praise reports on children with heath problems in need of prayer please visit us below:
HI TRACY,LEVI AND BEAUTIFUL LITTLE AIDEN,
WHICHEVER WAY YOU CHOOSE TO HAVE AIDEN REPAIRED, I AM SURE HE IS GOING TO BE OK.HE IS HERE FOR A REASON AND IN MY HEART I KNOW HE WILL BE HERE TO SHOW US ALL THAT MIRACLES DO HAPPEN.WHAT A GORGEOUS PERFECT LITTLE BOY HE IS.I HAVE EVERYTHING CROSSED FOR YOU ALL.LOTS OF LOVE AND PRAYERS,RONDA….AUSTRALIA
A very moving post. It truly is an example of hope when you put your trust in Him. “Dr Del Nido is your guy” was the exact words of Andre’s cardiologist, when other hospitals didn’t want to take the chance on Andre’s life. Dr Del Nido is the “guru” for valve repairs, something we learned when we met with him. Keep the peace within, keep the open communication with Him, the answers from Him will come along with this journey. If Boston is the place, our family will be there for you. I’ll send you our contact details. We’re praying for continuing hope and daily miracles. Isabelle.
Our thoughts, hearts and prayers are with you lil’ Aiden. and all my strength to the parents
I’m sure that denver is a great hospital. BUT going to a great place and going to the best place can be the difference between living like every other kid and having many physical limitations for your little one. Get to Boston! Good luck.
Levi, I haven’t been extremely present in your fight for little Aiden. But I know all too well what you are going through. My little Kaia passed away on July 2, 2009. Every word you write has touched my heart. When Kaia was in the hospital, literally thousands of people were reading my blog. So, in an effort to get as many prayers out there for you as I can, I posted about your son and what you are going through (www.outofanewhabit.blogspot.com). I believe God has a specific plan for all of us. Please feel free to read what I wrote. I am touched by your strength. It takes a village to help you through it. I know. And sometimes that village is made bigger by total strangers. God is listening. I pray for your strength and your son’s healing. Much love to you and Tracy for being so devoted and head strong. You are an inspiration to many.
Get all the facts, all your questions answered, then get alone and quiet with the Lord……. HE WILL SPEAK TO YOU and you WILL KNOW which route to take for Aiden! For Aiden’s steps are ordered of the Lord, and Aiden’s surgery will happen WHEN and WHERE the Lord has decided!! I love all three of you with all my heart, if Boston is the place….. it will be hard for me to let you go so far away……. BUT we KNOW there is NO distance in prayer!!! We will take care of your house and your “other baby” (Sierra the dog) and look forward to your return home to CO with a HEALTHY baby Aiden!!
Following little Aiden’s journey and hoping for the best. Hugging my own girls a little tighter, too.
Sending prayers….God will lead you down the right path for Aiden.
Kangaroo care was my favourite time with my little man! So many wonderful memories I have. Although I’m so sad for your loss, I am so happy you too got to make so many wonderful memories with your gorgeous son!