Friday, April 3, 2009

Elle Belle Swell Bell

Friday, April 3, 2009 - We finally received word this afternoon that Elle can start eating again! She received 18 cc at 3:00pm and promptly fell asleep. They will continue to bump up her feedings until surgery when they will have to stop feeding her again. She received her catscan today and Dr. Edmonds just came by her bed to show me the images. Technology is amazing! He showed me on the images where Elle's blockages are. Her right nasal passage is blocked by some sort of membrane. Her left nasal passage is blocked by bone. The plans are still the same - for Dr. Edmonds to go in and drill holes where they should have been to connect her nasal passage way to her throat. He will insert the stints and after that - Elle should be able to breathe out of her nose. He showed me on the scans that Elle's entire nasal area right now is clogged with mucus. Pretty gross - no wonder they have to suction out her nose about 100 times a day! While Dr. Edmonds was here - he called Dr. Morales, the Cardiologist that will be doing Elle's surgery. I guess he talked to Dr. M's nurse - but Dr. Edmonds recommendations are to do nose surgery first and then to fix her little heart. If Dr. Morales needs Dr. Edmonds to do the surgery earlier in the week - he will do it...but right now - plans are for nose surgery to take place on Thursday and heart surgery will follow. The heart surgery Elle will be having isn't the "big" surgery. Dr. Morales will be going in from Elle's right rib cage, moving her lung out of the way and installing a BT Shunt into her heart. In a normal heart, oxygen poor blood is pumped into the right atrium - it flows to the right ventricle - it leaves the right ventricle, flows through the pulmonary valve into the pulmonary artery and into the lungs where it gets oxygenated. After the blood gets oxygenated it flows back into the heart into the left atrium, down into the left ventricle and then out the aorta into the body. Elle's heart is functioning a little bit differently. She has a form of Congenital Heart Disease called Tetralogy of Fallot. The American Heart Association's website has a great explanation of the disease - but I will do my best to explain her situation. In Elle's heart, oxygen poor blood flows into the right atrium, into the right ventricle where it mixes with oxygen rich blood from the left ventricle. Elle's right ventricle and left ventricle didn't completely separate. I believe the correct term is a ventricle spetal defect. This means that oxygen poor blood is mixing with oxygen righ blood - essentially canceling each other out. Elle's pulmonary valve is almost completely restricted so the blood can't go out her pulmonary artery and into the lungs to get oxygenated. Her half and half blood (oxygen poor from the right ventricle and oxygen rich from the left ventricle) flow up her aorta and then out into her body. In order that she may have more oxygen rich blood being pumped into her body - she is receiving prostaglandin (her PGE). The PGE is keeping her Pulmonary Ductus Artery (PDA) open. In a "healthy" baby - the PDA usually closes after childbirth. In Elle's case, the PDA has to stay open so that it can help funnel some of her blood back into her pulmonary artery so that it may flow to the lungs to get oxygenated. This means that some of her blood is basically flowing backwards and into her lungs. In order to fix the problems, Dr. Morales will be installing the BT Shunt. The BT Shunt is made out of gore-tex and it is a little tube that will connect her pulmonary artery and aorta. It will basically be working the same way that the PDA is working for her now - but on a larger scale. In Elle's case, the oxygen poor blood will flow into her right atrium, into her right ventricle where it will continue to mix with the oxygen right blood from her left ventricle - the half and half blood will then flow into the aorta where some of it will be re-directed through the BT Shunt and into the pulmonary valve where it will flow out to her lungs to be oxygenated. After it receives oxygen, it will flow back to her heart - into the left atrium, into the left ventricle and the whole process will begin again. This is all very confusing - I am sitting here looking at the picture in order to be able to write it all down. This is actually the second time we have had this exact same picture drawn for us and explained. Lee understands the whole thing a heck of a lot better than I do. My eyes usually glaze over when the doctors start talking about ventricles and atriums and stuff like that. The installation of the BT Shunt is only temporary. Eventually, Elle will have to undergo open heart surgery where the surgeon will repair her pulmonary valve so blood can move through it and he will also separate the right ventricle from the left ventricle. This surgery will take place in 4 to 6 months - depending on how fast Elle grows. As I am sitting here, next to Elle's bed - one of the scriptures fell off and landed in my lap. I don't know how it fell in my lap because it was taped on the top of her crib on the other side of where I am sitting. It fell through Elle's crib to get to me. I am confident it is the Lord's way of telling me he is here - watching over Elle and us. The scripture that fell down is Psalm 139: 13-14 - "For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." His works are wonderful!


mrsrubly said...

o my~that was the lords way of telling you he is there with you my friend. i have no net access at home so i will pray like crazy for miss elle~

nana said...

This is one of my favorite scriptures. I have been praying that God would assure you He is holding Elle in His arms and is there to comfort you and Lee. Another passage is from Jeremiah 29/11-13 for Elle and you. I am praying constantly and have put Elle's name in our Book of Intentions at church so many will be praying there too.