The new pacer...

Today Micah went in to surgery for his new pacing system. The pacer he had before had only one lead going into his right ventricle and his heart was no longer tolerating the abnormal rhythm. His left ventricle was showing sign of weakness with the lack of use. Today he received a bi-ventricular pacing system that put a lead into both his left and right ventricle to mimic a more natural rhythm. This will, hopefully, give his heart a more natural beat and move the blood in his body with more force and get the extra fluid out of his lungs and liver and make his breathing much easier. He woke up around 3:00pm and showed he had a lot of fight still in him. We have had some trouble finding that right balance of medicines to keep him comfortable, but he hasn't shown any signs of distress and though he's uncomfortable at times he is still cooperative. (Amazing for a 2 year old) Hopefully tomorrow his drainage tube will come out and we will move to the main cardiac floor. The "plan" is for him to stay in the hospital for a couple/few days and then go home at the beginning of the week. If you think of us during your weekend, please say a prayer or think a happy thought for him and his recovery. it would be wonderful if he were at 80% by Thanksgiving so he could enjoy it with his family. Thank you all for your thought, prayers and support as we travel down Micah's path.

2 Years!!!

Imagine yourself in a brightly colored room, there are a lot of busy people moving this way and that, talking to each other about many important thing. There are pictures and paintings on the walls of animals and cartoon characters, all aimed at children. Imagine trying to feel comfort in this room but are unable to shake the fear squeezing at your heart. The busy people walk back and forth in front of your little curtained cubicle. They look in and meet your eyes and give you genuine, caring smiles, trying to reassure you that everything will be okay. This is their life's work and they do it with great love. Imagine smiling back and knowing that smile is no where near your eyes. It is completely fake. You smile as you choke on fear and tears. Trying desperately to hide your fear for the sweet baby that you pass between you and his Daddy. Imagine looking at his tiny face trying to remember everything about it. Every smooth curve of his cheeks, the shape and color of his eyes, the curve of his mouth and they way he smiles back up at you.

Imagine feeling panic every time someone walks in to your curtain cubicle and talk to you about what is going to happen and what will be done in the next few minutes to ease the separation process. Imagine signing sheet after sheet of consent papers while listening to the risks of the coming procedure. Imagine hating yourself as you read you name on those papers knowing you have somehow signed your baby's life away. Put your baby into someone else's hands. Imagine squeezing your baby tight and silently begging them to forgive you for what you were allowing to happen to them. Imagine begging God to make it not hurt.

Imagine seeing a doctor with kind eyes ask you to give your baby a mystery liquid that will help your baby fall asleep. You watch your baby drink it so fast because he is so thirsty from not being fed for more than 12 hours. Imagine looking up and seeing a nurse smiling at you, telling you "It's time to go". The doctor holds his arms out to take the sweet, sleepy baby from you. Imagine feeling the muscles in your arms and legs tighten, ready to hold onto your baby for dear life and run for the door. Imagine forcing your body to extend your arms and place your baby into the doctor's arms. Feeling panic tearing at your chest, trying to burst out of you. Fighting back tears so your sleepy baby does leave seeing your crying. Kissing his sweet head and smelling his sweet baby smell, trying to force the memory to burn itself into your brain.

Imagine watch Daddy kissing your baby and wanting nothing more that to wish all of this away and have everything be perfect. Then looking the nurse in the eye and asking her to give you back your baby when all is done. Begging God to give you back your baby. Begging God to put your baby back into your arms. Following your baby with your eyes as the doctor walks behind the double doors to the OR, then following another nurse to the waiting room to wait for 6 hours to finally hear the words, "Everything went great. There are a couple of small issues but they should go away in time." And then "As soon as he's settled you can go in to see him."

Two years ago my husband Jason and I went through this exact thing with our son Micah. Two years ago, Micah had his Tetrology of Fallot repair at Children's Hospital Boston. It was one of the hardest days of our lives and with the prayers and support of family, friends and the wonderful staff at the hospital we got through it. Micah came out if surgery with a full repair and although his had Complete Heart Block he looks so pink and healthy and his oxygen level was at 100% for the first time in his life. Dr. Fynn Thompson did an amazing job fixing his heart and Dr.s Brown and Gauthier have been doing a fabulous job keeping him as healthy as they can ever since. Micah is a happy, healthy 2 year old now and even with all of the hiccups in his health and many surgeries he is still a sweet and caring baby who cares more about other's BooBoos than his own. He is an incredible little man and I could not be more proud of him than I am right now.