1st update

Our case manager just updated us and they are doing great in surgery. They put his CVC line (central line) in his neck. And his art line in his left wrist. The surgeon has done the initial incision and has started looking at the scar tissue. They said that he is doing great. Keep praying.

Day 1 Emmanuel: Surgery

So... we've been here since 6:45 and the surgeon and anesthesiologist came to get Chris about 15 minutes ago. They explained how Chris' shunt will be removed and said that the surgery typically lasts about 5 hours. We will be getting an update on the progress in about an hour. I will let you know what the update is when they let us know. Keep little man in your prayers. He is a fighter but I know he needs our help. Please pray for the surgeon and mom and dad too. Pray very hard for us.

Hard days ahead.

Hello all. I don't write very many posts like this, but today, I have to. I am feeling very sad. I don't know why. I have know reason to be. I have the best husband. He makes me laugh so much and I can never stay mad at him when he gives me his puppy dog eyes. It sounds stupid but it's true. I have the best three boys any mom could ever have. They do drive me crazy from time to time. But they all bring so much joy and love into my heart. I can't even remember my life before all my boys. I have so much love and support from the best group of family and friends anyone could ask for. We have so much, and want for nothing. And I am thankful, everyday.

But today sadness has come over me. A feeling of deep sorrow. I am so scared for my little son. I love him more than words can ever express in any language on any planet in any universe. He is my precious angel, and I am not ready for what lies ahead. He is supposed to be in our family and he is supposed to be my son. He brings so much life to us. He brightens my heart every day. He will open his sleepy eyes, and the first thing he does is give me a huge bashful smile.

I need all your prayers now more than ever. I am thankful to have so many Christian friends and family. Please pray for him, please pray for us. I don't know if I have ever needed strength more than I do now. Please pray for the surgeons, and the perfusionist, and the anesthesiologist, all the nurses who will be caring for him. Pray like you have never prayed before. I believe in the power of prayer. I know our prayers are heard. I love you all. I hope that this image that has brought me some comfort today doesn't offend anyone. And if it does, I really don't care, its my blog.

Ere you left your room this morning, did you think to pray? Oh, how praying rests the weary, Prayer will change the night to day. So, when life seems dark and dreary, don't forget to pray.

More video of a very happy little man!

4 day countdown photos

Inquiring minds want to know......

I just thought I would post this now, since I know I will be asked in the upcoming days, what is exactly done during Chris' surgery.

I posted a diagram of a healthy heart and one of Chris' heart pre-op, so you can all see the very underdeveloped left side components. On the diagram of the HLHS heart you will notice the PDA which is the only way Chris' body was getting blood at birth. This is a ductus which typically closes during the first hours or days of life, which is why you will not see it on the healthy heart.

Now that Chris has had the Norwood procedure his body is getting oxygen rich blood via the Sano shunt. This is the shunt that was put in so that Chris would be able to be taken off medications that kept his PDA open. This shunt ultimately does what the PDA did without the use of medication. The workload on the heart is still double that of a healthy heart.

During the Glenn Procedure, the Sano shunt will be removed, and the blood to the body will be redirected through the Pulmonary, removing about 50% of the workload. After this surgery Chris should be able to put on more weight and function fairly normally without tiring as easily

After the Fontan, (3rd surgery, between 18 months and 5 years) the right ventricle will pump only oxygen rich blood to the body, and the pulmonary (with the help of a new shunt) will essentially bi-pass the heart completely, keeping a steady flow of oxygen deprived blood going directly to the lungs.

Hopefully I did okay describing that, it is fairly confusing, I know. The way I normally describe it is, his heart is broken and has to be jimmy-rigged to work right (not to be too light-hearted no pun intended).

So he has a hard road ahead, but I hope we can raise him so that he doesn't feel different than any other kid. My goal is, since he won't know how it feels to have a fully healthy heart, that he won't feel deprived or like he's been cheated, but to be thankful everyday, and be able to have a normal childhood and adulthood. ( I hope the same for my other children too.) His heart defect is the norm for him... even if it's been a roller coaster for us. Besides, he will always have Uncle Luke to relate to and talk to about his defect. I know they will be close. I love you all, and am grateful for all your love and support.

Second stage reconstructive open-heart surgery: The Glenn Procedure

Hello all. I wanted to update everyone on Chris' Wednesday check-up with the cardiologist. Dr. Chang was kinda regular, meaning not pleased, but not overly concerned. Chris' heart function is good, and his tricuspid valve is still leaking moderately, as expected, but it is no more worse off than it was a month ago. As you all know, he has been struggling to put on weight. This is one area that seems to be a reoccurring problem. Dr. Chang was not very pleased with his weight gain at all. I have truly tried very hard to help little man to eat but he is not that interested. Dr. Chang also informed me that poor growth is a sign of heart failure. Great.

Dr. Chang let me know that we are ready for the second surgery, but that he needed to present Chris to the team. This is a meeting where everyone involved with surgery reviews his progress, and all his echo's and makes sure everyone is on the same page with moving forward. Prior to this meeting, which took place on Thursday, Chris' surgery was scheduled for the 21st. Now, due to scheduling conflicts, we chose to move the surgery to the 13th. This coming Tuesday. Please pray for our little family, as it will be one of the hardest things we will have to face. Mom and Dad are definitely having a hard time, knowing what lies ahead, and that we will have to hand our precious little one over to the capable hands of Dr. Iguidbashian and Dr. Axel. We love you all. I will be periodically updating facebook and the blog during the days to come and on surgery day. I appreciate all your love and support.