Expect the Unexpected

Many of you know that I tend to be very type A and that I love to plan... well I have quickly learned that when your child is diagnosed with a very serious heart defect that you have to learn to roll with the punches.

Our little guy is still very stable. He is taking pretty much all the milk that I pump and is completely off TPN (Total Parenteral Nutrition). He is a little jaundice just like his brother and sister were but at this point far below the threshold for him to go under the lights. The CVICU team decided to start him on a diuretic yesterday to help with fluid retention and tachypnea (fast breathing), but he is doing really well. He finally is out of the deep newborn slumber and is alert and awake. He is a super happy baby and as sweet as can be. Brad and I keep remarking how "normal" and good he looks but we know his little heart is anything but normal.

Yesterday morning a large team of pediatric cardiologists and pediatric cardiothoracic surgeons met to discuss the surgical plan for little Max. At rounds yesterday morning Brad and I were shocked to find out that his surgical plan has changed pretty drastically. When we met with our surgeon, Dr. Frank Hanley, he informed us that he wanted to do Max's arterial switch surgery (physically switching the aorta and pulmonary artery) within the first week of life and that he thought our little guy would need one surgery and be done. Well as of yesterday that is no longer the plan. After doing the ECHO outside the womb they were able to see the mitral valve a little better. The mitral valve is the valve on the left side of the heart that separates the left atrium from the left ventricle in order to control blood flow. Well Max's mitral valve is working wonderfully but it straddles the right side of the heart and has some strong attachments. Basically because Max has a large ventricular septal defect or hole in between the left and right ventricles, the mitral valve doesn't have a wall to attach to so it has made some rather strange attachments that have complicated his repair. I was told that Dr. Hanley went back and forth many times looking at the pictures of the mitral valve attachments. He ultimately decided that it is safest to hold off on Max's arterial switch surgery until he is a little bit older and bigger. The plan now is to do his repair in two phases. Hopefully this Friday or next week little Max will have an open chest surgery (but not open heart) where they will put a band on the pulmonary artery. Because Max's aorta is on the far right side of the heart (when it should be on the left) they need to decrease blood flow to the pulmonary artery in order to increase blood flow to the aorta. Basically this surgery will be a temporary fix to better balance his oxygenated (red blood) and deoxygenated blood (blue blood). The plan then is to go home to Orange County after recovering from his pulmonary band surgery where we will be followed closely by Dr. Doshi at CHOC. Then when he is around 4-6 months of age old we will head back up to Stanford for his full open heart surgery and arterial switch. The hope is that in waiting a little longer to do the major surgery that they can preserve the mitral valve and avoid giving Max an artificial one.

This information was hard to take. We were hoping to just be done and have his heart fixed quickly and now we know it is going to be a process. On top of that we now have to watch little Max have at least two major surgeries where they have to crack open his chest. As a parent you only want what is best for your child but it is still so hard to see them suffer. I wish I could have the surgery for him but obviously that is not a possibility. We were taken aback but not totally shocked as Dr. Doshi had originally told us that more than likely he would have a more minor procedure, go home, and then have his major surgery when he was a little older. I left rounds yesterday morning feeling defeated with more questions than answers. Fortunately for us Max has an amazing cardiologist at CHOC that has really been such a blessing to our family. Dr. Doshi proactively reached out to multiple doctors at Stanford to get all the information from the surgical consult meeting and called me to discuss everything. She reassured us that she really thinks this is what is best for Max in the long term. She applauded Dr. Hanley for taking the conservative approach and really giving Max the best shot at a bi-ventricular repair.

We are still waiting on a surgery date for the pulmonary band. We are hoping this Friday or sometime early next week. The surgery should take about 30 minutes and they anticipate him to only be in the hospital for about a week give or take after his surgery. And then we will head home and enjoy some time as a family of 5!

Thank you for all of prayers. Please pray that first surgery goes smoothly and that Max's mom and dad have enough strength to get through the next few months...

And I'm Out!