Ethan: Mom, does Liam have a broken heart?
Me: Well, kind of sweetie, his heart doesn't work like ours does, but we are going to get him to the doctor and try to fix that heart of his.
This morning I took Liam to the cardiologist, Dr. Kumar, at CDH Children's Memorial. Dr. Chris, his pediatrician wanted to follow up more closely on his heart murmur noticed first at Rush. I thought, quick trip over there, leaving Matt home with triplets and a little helper named E. Having had a harmless heart murmur myself, I didn't think it would materialize into much, although I was interested if it would help explain his A's and B's (apnea and heart rate drops).
Liam was a little trooper for his exam and EKG. After talking to Dr. Kumar and going over his brady episodes and the times he has looked a bit "dusky," she order an echo. While it's not typical to give the test, she felt all the details we discussed warranted a closer look. It certainly would have been nice to know the test was going to last about 1.5 hours, with Liam having to try to lie still as much as possible...not easy for a 2 month old/3 weeks corrected age. He did so good and as we were nearing the end of the test she noticed an enlarged right ventricle. After a full 90 minutes of testing, Liam decided he needed a break. Dr. Kumar really didn't want us to leave until she was able to verify that the enlargement was not due to any other issue. After a break, we tried again and Liam did a great job staying still do get the pictures we needed. Shortly after she wrapped up with the echo, Dr. Kumar gave off an anxious energy asking me to talk with her in the next room. Of course, I felt it was something serious and had flashbacks to a similar moment when we were told of Ethan's tumor. I was feeling the exact same thing and wondering why in these moments I am always alone with my child! (Then quickly reminded myself that I am never alone and God's hands are always on me and my children).
Dr. Kumar explained what she believed could be an issue with Liam's heart. He was missing a coronary artery. One artery supplies blood to the body from the heart, the other vice-versa. Well, how could one artery be doing both jobs?! Thankfully, the muscle itself appeared to be just fine and without damage. Concerns filled my head as I was told how serious this condition is and we would need to get more tests ASAP to better determine what was happening. Of course I asked a million questions that went unanswered until we had more information. More than anything it was difficult to not have confirmation that this would be ok, that it wasn't life threatening. It is rare, it could cause Liam to have a heart attack and that's all I would know...
We waited a couple more hours for coordination efforts and were ready to take an ambulance to Children's Memorial in Chicago. Thankfully the transport team was already out and it would be a few hours before they returned back so Liam and I were able to head back home, pack up, get things ready for family and friends taking care of the rest of our boys, and head down to the city. It was somewhat of a blessing that we had spent lots of time at Children's before for Ethan and we knew where to go and what to do.
Liam was admitted to the Cardiology Unit, and I am typing from his bedside now. He has had a LONG, LONG day. Oh, what brave boys we have, so proud of him. We grabbed Matt from home and he's trying to catch some z's before we switch duty ;) The doctors here did a thorough job answering our MANY questions as best they could. Essentially, Liam's heart is operating off one coronary artery. I said to the doctor, it sounds like his arteries made a detour and he said that's exactly what we think is happening.
The scenarios are that there is only one coronary artery. If this artery has a clear flow and clear path, we would need to continue to monitor him closely, there may be a few restrictions in his life, and he would really need to watch his health especially as he got older given the history on my father's side of the family (his sudden death from a 3rd heart attack 5 years ago and my grandmother's/his mother's as well). If the artery is restricted in any way it may mean creating a new path through surgery. The final scenario is the artery is feeding back into itself so to speak in which oxygen-poor blood is being circulated through Liam's body. This would require immediate action and be the most concerning of all.
In any case hearing something is wrong with your child's heart is in itself heart-breaking. After working through Ethan's cancer, testing, surgery, etc. and the boys' time in the NICU, we hoped to never visit a hospital again, yet we are thankful to have such great hospitals close to home.
Tomorrow morning Liam will have another echo with sedation. We hope we can get ALL the information we need to confirm that while he does only have one main artery, it is flowing well, clear paths, and his heart muscle is not damaged in any way. If we cannot confirm it through this testing then he will require full sedation under general anesthesia and a cardiac catheter, a much more invasive procedure in which a catheter is fed through his main artery. There are many more complications possible for this procedure.
Please join us in praying for the best scenario possible. Although we have heard the worst possible news today, please pray for the best outcome. Please pray for our strength.
We know God is with us, we have no doubt. We know His hands are on Liam.
Tonight when we arrived we saw a friendly face. Miss Cheryl, who we got to know on the 4th floor here with Ethan (has now moved to the 5th floor) and haven't seen in over a year was sitting at the desk. We caught her up on the quad news, new pictures of E, etc. I know God put her there for us.
We will update here as we can. Thank you for your prayers.
If you would like to leave a prayer or note for Liam, please do. We will save them for him to read one day with his healthy heart ;)