Wednesday, July 20, 2011

Unexpected News from Yesterday

We went to the doctor yesterday for what was supposed to be a team meeting. We were going to meet with a doctor from the practice where we have been transferred and a cardiologist from the practice where they have been looking at his heart and they were going to discuss what will happen once Levi is born and talk to us about all of our plans and what to expect. Before we went back to see the doctor the nurse was going to do a "quick ultrasound" to take some measurements but when she finished she said the doctor might want to look also. We went into another room and the doctor did another ultrasound and asked the nurse to pull up the pictures from earlier in the pregnancy. He determined that Levi doesn't have just situs inversus with a heart condition. Now they have discovered that he has a diaphragmatic hernia. He said he may also have some situs inversus with this but we don't know. Basically there is a missing part or hole in the muscle that keeps his organs where they need to be and some of his organs are going up into his chest. They could be pushing his heart to the wrong side and putting pressure on it, we don't know yet if this is why his heart is on the wrong side. The heart condition that they have planned for surgery for after he is born (coarctation of the aorta) could just be pressure on his heart from the organs pushing against it but that's something else we won't know until he is born. This is a very serious condition. The doctor said it is one of the most serious things they can see up there.
So now instead of us having a heart surgery when he is about a week old that they expected him to do completely fine with, we will have to have him sent from UAB to Children's within a couple of hours after he is born and hook him up to machines because his lungs will not be developed properly due to the other organs pushing against them as well. They will have to do a surgery on him and possibly multiple surgeries.
The doctor said at best he will be in the hospital for 4-6 weeks. At best usually means that the baby has nothing else wrong except the diaphragmatic hernia and our baby may have a heart condition to go with it. He said that 50% of babies at best with this condition survive. He said that we have less that a 50% chance and that our baby has a long road ahead. But I really don't care what they say. I am devastated to hear this news but I am having faith that we can get everyone we know praying for our little guy and God will show them who is boss. We are putting this in His hands and hoping that our little fighter will be a miracle that brings God glory. Please get EVERYONE you know praying for Levi. People we don't know, prayer chains, anything. We have got to cover him in prayer for the next few weeks or even months!

Friday, July 8, 2011

7-7 Appointment

Yesterday we had our third fetal echo with the cardiologist. He was able to see things a good bit better than previously. We still do not have any for sure answers about what is going on but Dr. C feels very confident that it is coarctation of the aorta. We will deliver at UAB and they will do an echo on our baby sometime after he is born(most likely a few hours after birth so that we have our time to bond first, etc.). If the echo shows that what Dr. C thinks is going on is correct then we will most likely have a surgery take place sometime in the first week of life.

Again, this is all what we are thinking as of now, we will not know anything for sure until he is born but this is what we are going with to try and prepare.

Dr. C says that if this is what happens then he expects our baby will do well with the surgery and most babies with this go on to lead a normal life. He will have to see a caridologist periodically for the rest of his life though with this. The surgery will correct the problem, but it could reoccur. It is basically a narrowing in the aortic arch and it could re-narrow over time. This is definately not what we were hoping for but I have mostly been hoping that whatever happens, it will be something we can correct with surgery and I am very pleased that it is not something that the doctors are afraid will threaten his life.

This is not the worst case, it could be much worse, but it is by no means something small. It is just something we have to prepare for and pray and hope for the best. I am having to trust the doctors with our baby's life and trust that they will do what is best.

Please join us in prayer for a smooth delivery. I really want a calm, natural birth. And please pray for the doctors that we will be working with. Pray that they will be open to my wants and that God will give them wisdom while taking care of our baby boy. Thank you all for your prayers so far and for keeping up with us and caring! I have so many emotions going on right now and I can definately tell a difference when people are praying for us.

Friday, July 1, 2011