Wow. The last 48 hours has been a little bit crazy, to say the least. Here's the rest of the story...
Cor triatriatum: First reported in 1868,[1] cor triatriatum, that is, a heart with 3 atria (triatrial heart), is a congenital anomaly in which the left atrium (cor triatriatum sinistrum) or right atrium (cor triatriatum dextrum) is divided into 2 parts by a fold of tissue, a membrane, or a fibromuscular band.
This is the diagnosis that has changed our plans a little bit this week.
The past couple weeks, Crew's color had been a little 'off'. He was a a yellow color, but not a jaundiced yellow color. Then about a week ago, we started noticing he would have short periods of time throughout the day while he was sleeping that he would be pale and clammy. 'I'll just watch him,' I thought, as a few minutes later he would return to baseline. I checked his temperature a few times, and he didn't have a fever. 'Maybe that's just him,' LJ and I continued to think.
However, over the weekend, he became a little more irritable than usual. And he wasn't eating quite as well, he would only eat while the milk came easily and then stop. L.J. set up a surprise visit from my mom and sister on Sunday to celebrate my birthday which was earlier in the week. I'm glad they came to see me, but looking back I know it was divine intervention. They spent the day with us and confirmed our suspisions that something was a little off with Crew, and I wasn't just being a paranoid mom. I called the clinic where we take him, and got an appointment for in the morning.
The morning went on as usual, and we went to his appointment at 11:00. I went, 90% sure they were going to check him out, say he was okay, just to watch him, and send us home. Afterall, there were just a few little things that concerned me, but nothing was blatantly wrong. I would have been okay with that, feeling better that he was checked out by the pediatritian.
The pediatritian checked him out and spent about 45 minutes with us. He said he heard a tiny heart murmur, but only because he listened really hard, and this wasn't too unusual for a newborn. He said with his coloring, he could have a liver issue, or with his irritability and lack of zeal to eat well, he could have some pyloric stenosis. He said, "it might just be nothing. But my gut is telling me that he needs to go to Primary's and get checked out." And I thank Heavenly Father everyday since that Dr. Gould listened to his gut.
We went home and I grabbed some lunch and a book knowing that the wait in the ER could take a while. L.J. and a neighbor gave Crew a blessing. How grateful I am that I have a husband and we have neighbors that are worthy and willing to administer a blessing at a moment's notice.
We arrived at the ER and talked with the doctor. He ordered lots of blood tests and a chest x-ray. The chest x-ray showed that Crew's little heart was very enlarged. They then did an echocardiogram to get a closer look at his heart. In the middle of the echo the cardiology fellow walked in to say hi, glanced at the screen for about 10 seconds, and asked the echo tech if it was 'cor.' She said that it was. He then explained to me that he was born with three atriums instead of two and there was a little hole in between two of the atriums. Due to the way the blood is pumped through the heart and lungs, his right ventricle (which does a lot of the pumping) was very sick, and a lot of the blood it was able to pump was not oxygenated. Blood was backing up and causing high pressures in the blood vessels to his lungs as well. They would admit him and do surgery on Wednesday. I asked the echo tech if this was common, and she said she had never seen it. I later asked the cardiology fellow how often he had seen this condition, and he said 'never.' I was so impressed that for having it be such a rare condition, they still knew exactly what is was.
Several hours later they took us to the cardiac intensive care unit (CICU) hooked him up to more monitors, and drew more labs. About an hour later after some concerning lab results, they decided to take him to surgery that night. They took him to surgery at 11:00 pm. The surgeon told me there was a 5% chance of complications in surgery, but 100% risk of mortality if the surgery was not done. So in 12 hours we went from thinking they would just send us home from the pediatrician's office to emergent open heart surgery.
We prayed and cried and prayed some more. How helpless you feel when your little baby is having his chest cracked open, and his heart stopped and circulation halted to his entire body. Knowing the only thing we could do was pray, that's what we did. We prayed and hugged and cried and prayed.
At 2:30 am, surgery was over. It was a success. They did have to shock his heart once after the extra membrane was removed to get his rhythm back to normal, but he responded well. He did have a big pleural effusion, but that was expected. He told me the extra membrane in his heart had a hole the size of the tip of a ballpoint pen that that the blood was flowing through. He told me there are about 200 documented cases of this heart defect since it was discovered in 1868. Crew was the third baby in 25 years he had seen with his condition. Most die of heart failure before it is caught. He said that Crew should make a full recovery. He should not need any further surgeries. Recovery would be a few weeks at least so his heart and lungs recover and learn to function how they should without the extra membrane. I hugged Dr. Gruber (who happened to be the chief of staff of cardiothoracic surgery who was on that week) and told him thank you for everything.
Post-op day 1.5, recovery is slow but sure. Crew is awake for short periods of time and making progess towards getting the breathing tube out. They are feeding him a tiny bit through a tube in his nose now that his GI system has enough blood to function properly. He is still on a lot of meds to help his heart function a little bit better, and control his pain, and has needed some blood transfusions. But he will do great. He know he is in capable hands. All of this is par for the course - of open heart surgery that is. They told me there is not really a par for him since his contition and surgery are rare. Every one new that comes in his room says something along the lines of, "oh, this is the special boy!" :) Yep, he sure is.
I know that he is still here for a reason. It's Heavenly Father's plan. Crew has such a noble spirit, and here to accomplish great things. We are overwhelmed with all of your love and concern and support. Thank you, from the bottom of our hearts, for your prayers in his behalf.
We love you little buddy, all 9 pounds of you. And we are so happy your broken heart is fixed. <3
