In your one week of life, you have endured more than anyone typically experiences. Luka, you are so strong and brave. I love you so very much. Today, you are one week old. Yesterday, you had your first of 3 open heart surgeries. The procedure was called the Norwood. Here's a little info on what the surgery is about...
Results with staged reconstruction for children with The Norwood operation is the most complex and highest risk procedure in the sequence of staged reconstruction for Hypoplastic Left Heart Syndrome. Current management at major pediatric heart centers has resulted in survival rates of 75 percent or better.
The recovery period in the hospital following the Norwood operation is often unpredictable and complicated, averaging about 3 to 4 weeks. A small percentage of patients who leave the hospital may continue to experience significant problems in the first months of life.
Occasionally, the right ventricle does not function well following the Norwood operation and in some case, cardiac transplantation may need to be considered.
If a child with Hypoplastic Left Heart Syndrome reaches the time for the second stage (about 4 to 6 months of age) without major complications, the survival through the Glenn and Fontan operations are much better, exceeding 90 percent with current methods.
Almost all children with Hypoplastic Left Heart Syndrome will continue to need some cardiac medications to maximize the efficient function of their heart, and all will require regular periodic follow-up visits with their cardiologist to evaluate their cardiac function and detect late complications such as arrhythmias.
http://www.cincinnatichildrens.org/health/h/hlhs/
So, basically, you just went through the most complex surgery out there. And you're still here with us. That is so awesome! You're still on the ECMO. Here's some info on that...
What is ECMO?
ECMO stands for Extracorporeal Membrane Oxygenation. ECMO is used only after medicine and a breathing machine (ventilator) have failed to make your loved one better. During ECMO, patients appear to be better, but you need to know that the person is still very sick. Your loved one needs the ECMO machine for life support.
The ECMO machine works for the heart and lungs. It is the same heart/lung machine used for open-heart surgery. When your loved one is placed on ECMO, blood will flow through the ECMO tubing where it receives oxygen from the machine’s lung. This happens until the heart and/or lungs are able to work on their own.
The ECMO Machine
Blood flows through the tubes, by gravity, and is pushed along by the turning motion of the pump. How fast the blood goes depends on how fast the pump turns. This flow number may be high at the beginning meaning the machine is doing most of the work. As your loved one gets better, the flow will slowly be decreased because less support is needed. The amount of time this takes depends on how the heart and lungs heal. Beyond the pump, the blood goes to the machine’s lung that puts oxygen in the blood and takes out carbon dioxide. The blood is then warmed to body temperature and given back to your loved one through the arterial or one portion of the tube. You will notice that the blood coming from your loved one will be dark because it contains little oxygen. The blood going back in will be bright red because it carries lots of oxygen. The blood is taken out and given back at the same speed so your loved one’s body doesn’t miss the blood going through the tubing.
http://www.uwhealth.org/healthfacts/B_EXTRANET_HEALTH_INFORMATION-FlexMember-Show_Public_HFFY_1109725221094.html
Right now, things are quite scary. You have tubes and wires everywhere and your room is full of machines that are keeping you alive. Mommy wondered if she was doing the right thing...By making you suffer. Your chest is wide open...They won't close it for a few days because the risks of surgery include your heart swelling and bleeding...Plus, if for any reason they need to do more surgery, your little tiny chest is already open so they can get in there quick to try and save you. I am allowing doctors to do all this stuff to you because I want you to live. You can't tell me if that's what you want, so I am choosing life for you and hoping that this is what you want as well. I had the options to terminate the pregnancy...Which, even if they said you'd live 2 hours, I would have never terminated my pregnancy. That was never an option in my mind. The other option was to give birth and let nature run its course and allow you to peacefully pass away. I couldn't do that because the doctors told me there was a chance you could be saved...The process would be a long and difficult one but your chances of survival were fairly decent. These surgeries are mostly done while you are very little and won't likely remember so we chose to give you a shot at life...Because really, what parent wouldn't want their baby to live? Very few choose abortion or compassionate care.
One of these days, Mommy will get around to writing your birth story. Today just isn't that day. Today...I am just hanging out at the Ronald McDonald House and the hospital. Daddy and I relocated down here to be near you because I couldn't stand to be away from you. Ashton and Zephyr are staying with your Grandparents and I will pick them up once you are off ECMO and breathing on your own. I can't wait until that day comes.
Baby boy, Mommy and Daddy love you so so much. Keep up the great work. Continue to fight because I miss holding you.
