June Update

A lot has happened since the last visit with the NEONATAL doctor. We met with our regular OB doctor where he checked Lilly’s heart rate. It seemed when he listened to her heart it was slower and he listened for a longer period of time. This of course sent bells and whistles off in my brain even though he said she sounded great. At the conclusion of the visit he said he wanted us to meet with the fetal cardiologist at St. Joseph’s hospital and have an echo cardiogram on Lilly’s heart.

We had the opportunity to go to the Scott and Laura Eller Congenital Heart Center on Friday June 18^th. It was a long afternoon as we went from an echo cardiogram to meeting with the doctor to then meeting with the surgeon. Lilly hated the echo cardiogram test and so did I. She hated them pushing and poking on my tummy. They would push the ultrasound wand into my stomach and she would try to push them away. VERY VERY uncomfortable. During the echo cardiogram it was discovered that Lilly’s heart is not as severely damage as once was predicted. It is hard to explain exactly what is wrong with Lilly’s heart so I am going to try my best. It seems that the aortic valve is either too small, too thick or the valve is not open. Lilly also has an extra vena calva on the left side of her heart. There are other valves that seem to be small which can cause a problem once she is born. They said that it is possible that when she is born she will need a surgery within the first to second week of life to help manage her heart. Another surgery that will be more difficult but help repair her heart will be done between 4 and six months of age. A final surgery to finish the process will be done between 2 and four years old. At this appointment they mentioned that they needed a MRI done. The MRI would tell them more about her brain, heart, and kidneys.

Fast forward 5 day to Wednesday June 23^rd. I received a call in the morning asking me to come to the MRI office at St. Joseph’s hospital that afternoon. I was completely terrified as I am scared of small confined places. The test took over an hour. We had to redo shots because Lilly was having a tizzy!!!! She didn’t like it when they told me to not breathe. They said we would have results within the next few days.

TODAY:

Today I received some of the results from the MRI. The MRI confirmed that Lilly’s brain is abnormal. The extent of the damage is unknown at this time. They have a neurologist reviewing the scans and we will meet with her on Tuesday. I was sad but not surprised to hear that her brain was abnormal. The cyst on that back of Lilly’s head is gone. IT burst at some time since the last ultrasound. Lilly heart does have the tiny valves. Unfortunately both of Lilly’s kidneys are now struggling to do their job. It was a hard phone call.

We will be meeting with the neurologist next week and hopefully she will be able to tell us more about the damage to Lilly’s brain. Hopefully in two weeks we will have a meeting with the entire medical staff that will help with Lilly’s birth. At this meeting we will set a plan in motion and hopefully have date for the delivery. We do know that her delivery will be at St. Joseph’s hospital.

Thank you for your continued support and prayers. Check back next week for another update.