Sunday, April 14, 2013

Long Overdue Post

Because it has been so long since my last update, there is a lot to cover. I'll use bullet points so you can read what is interesting to you and skip the rest.

Surgery - Caleb and I head to Ann Arbor on Tuesday morning. He will have pre-op testing on Tuesday (chest x-ray, echocardiogram, EKG, etc). On Wednesday, he will have a heart catheterization so they can get detailed pictures of his heart and major vessels. If everything looks good on Tuesday and Wednesday, Caleb will have surgery on Thursday. Caleb has had a little cold, but it is nearly over. We found last Tuesday that he has an ear infection (he gets an ear infection with nearly every cold, just like his older brother). I called the nurse in Ann Arbor and she said that the cold may delay surgery, but he is doing really well now, so hopefully that will not be an issue.

What the Surgery Will Do - This surgery will re-route the major vein from the lower part of Caleb's body (the Inferior Vena Cava) so that it will flow directly to Caleb's lungs. The surgery should increase the amount of oxygen in Caleb's blood because all of his blood will now flow through his lungs. Currently, only a portion of Caleb's blood goes through his lungs. This results in lower oxygen levels and causes him to be bluish. It is especially noticeable in his lips, fingers and toes. The estimated hospital time for this surgery is 10 days to three weeks. The length of time is dependent on how long it takes for his chest tubes to stop draining. You will probably learn alot about chest tubes in the next couple of weeks.

Caleb in General - Caleb is doing great. He is talking and knows hundreds of words, most of them appropriate to say in public. His heart does not seem to limit him at all. He loves to play outside, even in the cold. He runs and climbs and does all the stuff that little boys do.

Updates - I will be updating the blog again at least daily starting Tuesday. I will try to post updates on Thursday as we get information during the surgery.

My Excuse for Not Updating Sooner - Several other heart moms and I have started a support group for families in West Michigan. We have been very busy working on connecting with families and developing our support network. We have delivered bags to Helen DeVos Children's Hospital for distribution to families whose children are hospitalized for treatment for heart defects. To raise money, Phil, another heart dad and I are running the Fifth Third River Bank Run on May 11th. To date, the three of us have raised over $1600. This is what has allowed us to get all of the materials for our care bags. Training for the River Bank Run has been taking up some of my time too - the run is 15.5 miles. Not the best excuse, but I am sticking to it!

How the Big Three Are Doing - They are nervous, but doing well. They aren't necessarily worried about Caleb dying, but they are really worried about missing him. The last surgeries were when Caleb was so young and boring, they didn't really play with him at that point. Things are really different now, he is their little buddy.

Thanks - We are so very fortunate to have a tremendous support system. We have been surrounded by love and prayers from every direction and that has given us an amazing amount of comfort and strength as we head into this next phase. We truly appreciate everyone that is thinking of us and keeping us in their prayers.


  1. I hope you know that we will be praying all the time for this entire process. Thanks for the update!

  2. Many prayers being lifted for Caleb's strength, and the families patients and strength, and of course the knowledge and technique of the doctors and nurses. Prayer is such a powerful thing. Matthew 19:26, "Jesus looked at them and said, 'With man this is impossible, but with God all things are possible.'" God is so good and I trust that he will provide the very best of the best for Caleb.

  3. Sending up prayers for Caleb and the family.

  4. We are also thinking of you all. Caleb is a strong, brave, and very precious little boy. Sending you tons of love from Stuttgart, Germany, Sara, Jochen & Tatiana xxooxx