Sunday, July 19, 2015

Take Heart!

Earlier this month, we saw Amelia's cardiologist and I'm very happy to report that it was a great visit!  She was all smiles when we got there, but when it was time for the EKG, she slowly realized what was going on and when she did, she wanted nothing to do with it.  We made it through even though she wanted to keep pulling the cords off.  We were worried the echocardiogram would not go well either, but she did great!  I was so proud of her!
A little re-cap first since I didn't blog about this...Amelia had a heart catherization at the University of Michigan in May.  She was born with a PDA (Patent Ductus Arteriosus).  Every baby is born with this, but under normal circumstances, it closes shortly after birth.  Sometimes, as in Amelia's case, they don't close on their own and this is very common in kids with LDS (Loeys Dietz Syndrome).  Since Amelia's aorta is already dilated, her cardiologist was hoping that by closing it, it would take some pressure off the aorta and stop it from growing.  During the heart cath, her cardiologist used a coil to plug the hole so that blood would not flow through there anymore.   

When Dr. G discharged Amelia later that night from the hospital, he also mentioned that her pulmonary artery was dilated as well (in fact, he said it was 50% larger than normal).  At the time, I asked him what that meant, and he explained it to me, but said he would get a better picture of it at the echo (in July).  I couldn't stop thinking about it though.  At the appointment he said that it is very common for any of Amelia's vessels to dilate because of her LDS and the pulmonary artery is one of them.  When the aorta dilates, it has to be watched very closely because it can not handle that kind of growth and if it dissects, it can be fatal, but with the pulmonary artery, it can dilate quite a bit before there's any cause for concern.  That put me at ease.  But, he said Amelia will have an MRI at least annually to look at the arteries throughout her body to watch for any growth that is would require treatment. 
As far as the PDA, he explained that the coil he used to close it looks great!  He said they worry about the coil protruding into the aorta or pulmonary artery, but hers is sitting perfectly in between the two!  Praise the Lord!!  He then gave us a run down of the aorta itself as well.  It has grown a little, which we were hoping would stop with the PDA now closed, but he said that may take some time to kick in and make a difference.  So, the slight growth did not concern him.  We'll check it again in 4 months.  For now, we can breath again and say many prayers of thanks!  God has been so good to us!  

Dr. G telling Amelia what a good job she did!

Thank you so much for all your thoughts and prayers for Amelia and our family!  It means so much to us!  She continues to amaze us!

"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit."  Romans 15:13

Patent Ductus Arteriosus (PDA): "...persistent opening between two major blood vessels leading from the heart. The opening, called the ductus arteriosus, is a normal part of a baby's circulatory system before birth that usually closes shortly after birth. If it remains open, however, it's called a patent ductus arteriosus."  Mayo Clinic definition

Aortic Dissection:  "An aortic dissection is a serious condition in which the inner layer of the aorta, the large blood vessel branching off the heart, tears. Blood surges through the tear, causing the inner and middle layers of the aorta to separate (dissect). If the blood-filled channel ruptures through the outside aortic wall, aortic dissection is often fatal."  Mayo Clinic definition

Loeys-Dietz syndrome (LDS): "...genetic disorder that affects the connective tissue in the body.  Individuals with LDS exhibit a variety of medical features in the cardiovascular, musculoskeletal, skin and gastrointestinal systems. Information about the natural history and management of individuals with LDS continues to evolve."

1 comment:

Dustin Ver Beek said...

Julie and Nelson, we continue to follow your families journey. We pray that you continue to get good news and that you see God move as you continue Amelia's treatments.