POST #5

Sunday morning...

John brought Mary and Aaron to the hospital early today--they arrived at around 8 am. Mary and Aaron wanted to spend the morning with Helena since she is being vented this afternoon. The medical staff has assured Aaron that this is a pre-emptive move since Helena will have to be vented before the surgery anyway; they just wanted to do it now to control her breathing, and to make sure that there is no fluid build-up in her lungs. Even so, this is pretty tough, and it makes the whole situation even more real. When they return tomorrow, there will be more machines in Helena's room.

Dorothy, Karla and David came to visit Helena at about 10 am, before K & D headed back to Decorah.

Helena was really at the top of her game today--she was so alert, and was able to look around at her visitors and her surroundings. She has big, beautiful eyes. It's likely they'll be blue, which shouldn't come as much of a surprise to most of you.

I (Karla) talked to Aaron this morning, and he wanted to pass on greetings to all of you who are praying for them and keeping tabs on Helena's progress. He and Mary have just been too exhausted to write directly--the last few days have been "like running a marathon"--but they are reading your comments and really, really appreciate your prayer and support. Aaron says that your "prayers have been helping--[they've] kept us going," and that being on the receiving end, he is getting a glimpse of "the true meaning of prayer." He sends special thanks to the LSTC (Lutheran School of Theology) community, Salem Lutheran Church in Sandwich, IL, St. John's in Somonauk, IL, Zion Lutheran in Buffalo, MN, and Good Shepherd Lutheran in Moorhead, MN. [Editor's note: I wonder if we should make this prayer effort more ecumenical! :)] He realizes that this list is not exclusive, and that there are so many of you out there thinking about them. Aaron says that family has been invaluable this week--they have really been a major source of support.

Aaron also says that the nursing staff at Christ "has been wonderful...They really love the babies here." He added that "the doctors have been reassuring and helpful," and that he knows they "are at a good place. Dr. Ilbawi [the surgeon who will operate on Helena] is one of the best in the world—He’s like the Bono of the surgical world.”

Aaron hopes that he and Mary can rest and relax this afternoon and evening, because tomorrow is going to be a big day at the hospital. They will be meeting with the surgical team to get a detailed care plan, talk about the number of surgeries Helena will need, and go through the process of this week’s surgery. They will also receive confirmation as to the date of Helena's surgery this week (they think it might be Thursday or Friday, but the doctors have said that it might be as early as Tuesday). In addition, they plan to do a blessing service for Helena tomorrow with their pastors, John, Judy, and Dorothy.

"We hope to be able to say more as the week goes on," said Aaron, "but in the meantime, our address is: 1100 E. 55^th Street, Chicago, IL 60615."

Just to recap the situation, Aaron outlined what he knows so far. In the surgery this week, the first of two or three this year, doctors will: 1) reconstruct Helena's aortic valve with “spare parts from another valve”, and they will use artificial parts to fix the valve from which they’ve taken the parts; 2) fix the aortic arch which is interrupted--this is what brings blood to the lower extremities. This whole process is called the Norwood Procedure, and they will perform a variant form of this operation (they don’t need to rebuild a new ventricle because of the hole (8mm) in her septum, which separates the two lower ventricles. Surprisingly the hole has actually been a good thing right now--it will be fixed when Helena is about a year old.)

NORWOOD PROCEDURE

The Norwood procedure is the first in a series of three open-heart surgeries that gradually improve certain heart defects that are present at birth (congenital heart disease). It is most often used to treat congenital defects in which one or both of the lower chambers of the heart (ventricles) are defective. The Norwood procedure cannot cure the underlying heart defects, but may enable young patients to regain their health. The term "Norwood procedure" is sometimes used to refer to all three stages of the surgeries together.

Each of the three surgeries is done at a different age, beginning from infancy and continuing into the toddler years. The first two surgeries (Stages I and II) are used to temporarily relieve blood flow problems to and from the lungs. The third surgery (Stage III) is used to further improve circulation.

The Norwood procedure re-routes the blood flow around some of the defective areas of the heart by creating new pathways for blood circulation to and from the lungs. Despite the complexity of the procedure, many children go on to live a relatively normal lifestyle after completing all three stages.

Excerpted from: http://heart.healthcentersonline.com/pediatricheartsurgery/norwoodprocedure.cfm