Finn's Baptism

On a non-medical related note, Finn was baptized yesterday and we are all so blessed to have him in our family! The baptism was at First Presbyterian here in Greensboro, the same church where Craig and I were married, as well as where Adelaide and Fletcher were baptized. There hasn't been many dull moments since that Saturday in June of 2006... and I can't help but think about just how lucky the kids and I are to have Craig! I went back and found some of the old pictures, its amazing how fast time goes by!

Adleaide, Fletcher & Finn Sept 23, 2012

Adelaide September 21, 2008

Fletcher September 20, 2010

Adelaide & Fletcher

Update from Tuesday 9/18

I am so sorry this took so long, but here it is...

We did go to UNC on Tuesday and found out a few things. First, big ol' hoss Finn now weighs 17.2 lbs.! All the nurses can't believe how big he has gotten since June and he has them all wrapped around his tiny finger. You can already tell that he is going to take after his dad and be quite the ladies man!

His levels had changed to hemoglobin 7.2, ritics 3.6 and bilirubin 2.2 so Dr. Gold decided it would be best to give him another transfusion. It really is so much easier now that the broviac is in and it makes a world of difference! The only problem is going to be keeping him healthy through flu season with two siblings in the house. We also did get the report back from Mayo and unfortunately it did not tell us much. It showed that he has an acute enzyme deficiency in his RBC's caused by low levels of G6PD. But Dr. Gold is not certain that this is THE or SOLE cause of what's going on in his body.

Finn's condition is really quite a mystery for everyone. If you look at him, he is the healthiest, happiest baby in the world. He is growing and advancing just like nothing is wrong, but underneath there is something that is causing his body to break apart his cells. We asked Dr. Gold the big question that is on everyone's mind...where do we go from here? Unfortunately there is no answer other than to keep having transfusions. At the age of five, children with blood disorders can have their spleens removed. You can remove it earlier, but the spleen plays a big part of your immune system during early development. This doesn't mean a guaranteed cure, but the spleen is the part of your body that breaks apart your blood cells. There is still a chance that is body will start to slow down the hemolysis or stop it all together. That's mainly because we still don't know whats causing it or that there is no obvious answer after all the tests. If you are praying for anything, pray for this to happen or for the doctors to find a reason why.

In the meantime, I have been in contact with the Red Cross here in Greensboro and we are going to host a blood drive in Finn's honor this Fall. I hate to think about the situation we would be in if it weren't for people constantly giving blood donations. The blood collected won't be for Finn's use, but for the Red Cross in general and will hopefully raise awareness of their need as well.. I will let everyone know the details when they are finalized and hope that people can participate!

Sorry for the long post! Thanks for everything!

Beau and Craig

Not much has changed

As of today, there is still no word back from the Mayo clinc and not much has changed...meaning it still appears Finn's blood cells are breaking down at the same rate as before. Tamara, our wonderful nurse that comes once  a week for home care, took labs on Tuesday. They showed that his Hemoglobin has dropped to 7.8, his bilirubin increased to 1.5 and his reticulocyte level increased to 3.5. I will explain the numbers for those who haven't had the biology lesson yet.

Hemoglobin is the part of a red blood cell that carries oxygen through our body. A normal range for a baby is 9-15. When he received his first transfusion back in June he was at 4. A trend downward means the cells are dying off faster than they are being produced (hemolytic anemia).

The bilirubin is what is left over after a red blood cell is destroyed, I call it the "ash". A normal level for him would be .5 to 1. When he was born it went to 21 in the NICU. If the bilirubin is trending upward it confirms that hemolysis is occurring.

Your reticulocytes are your immature blood cells that are produced in your bone marrow. The bone marrow test came back normal, so we know that he is procuing retics the way he should be. The crazy thing about our body is that it can sense when something isn't right and will try to compensate for it. Therefore, a normal level for him would be 1-2.5, but his body can tell that it doesn't have enough mature red blood cells so it starts producing a whole lot of immature ones. At his first transfusion he was over 6.

So after all that...we are going to UNC on Tuesday and he will most likely get another transfusion to get his levels temporarily back to normal. The hope of his body jump starting or eventually growing out of this is still there, but it will be more clear as to what we are dealing with when we get the results back from Mayo. Until then, all we can do is treat his symptoms. Thanks for everyone's prayers and support!

Beau & Craig

Still waiting...

Not much to report, but wanted to post an update for everyone. We got to take the week off from going to Chapel Hill b/c he just had a transfusion last week and his levels should still be stable. Dr. Gold just emailed us and he has not received any reports back from the Mayo Clinic. Since they usually do all tests in house (at UNC), he is unsure of the time frame. He did examine the bone marrow results and everything looked good. So that means he does have the capability of producing red blood cells, but his body is destroying them for some reason. Thanks for everyone's thoughts and prayers and show of support! We are so fortunate to have such great friends and family! Will post more when we know more...

Beau and Craig