Lilly's Diagnosis
I have tried close to a hundred times to come up with a good way to start this blog post...there really is not a good word, line, nor paragraph to start with sharing your story about your child's heart defect and her need for surgery. Sometimes the best way to start a post like this is just to jump right on in, pull off the band-aid, rip out the stitches. You get the idea.
I do wish to start off by saying that this post is in no way a search for pity or sympathy. Through research, I have found out that there are MANY babies that have had open heart surgery, and TWICE as many parents that go through such an experience. You wouldn't think that open heart surgery is common in such young children, I sure thought that way. This is more of an informative message of our experience, to help parents and loved ones to know that they are not alone in their fears and concerns. To know that they have someone (or many people) that they can turn to for help and comfort.
My daughter and I were at her 4 month wellness check up. Everything was completely fine, until the doctor listened to Lilly's heart. He said that he noticed a murmur and wanted a second opinion to see if it's a murmur to worry about. I suddenly got very anxious, thinking something was indeed medically wrong with my daughter. I felt myself tearing up and wanting to just bawl my eyes out...but I had no idea if there was even anything to worry about. So I tried to hold back the tears. We set up an appointment with a local Pediatric Cardiologist and left to go home. I explained to Justin what had happened that day at Lilly's appointment, and we both decided to not worry until we needed to worry.
I have a tendency to almost immediately think of the negative "what if" with upcoming things. I know that's not the healthiest thing to do...but heck I am human! I was having all sorts of thoughts leading up to our appointment with the cardiologist. I was worried that there was a fatal diagnosis, I was worried that a big procedure was needed, I was a slight mess. But I knew that I could not think that way. I knew that I just needed to, as mentioned earlier, not worry until I needed to worry.
The day of the appointment came and my anxiety came back like a tsunami...just in a huge rush. And the appointment was not until 7:00 pm...so that day was very very long. Justin had to work so Lilly and I went to Utah Valley Hospital, got checked in and my anxiety from that day was gone. I felt that we were in the right place at the right time. Such a weird feeling to have when you don't know what is going on with your child. We met the cardiologist and answered some of his questions. He noticed that Lilly was breathing very fast. He had asked if that occurred often, I answered "yes". He then asked if Lilly's hands and feet were often cold. Another question with the answer of "yes". Lilly then had an EKG and an Echo. Almost immediately after the Echo was done, the cardiologist came in and said that Lilly needed open heart surgery. Yup. OPEN. HEART. SURGERY.
HUGE shock! I NEVER thought in a million years that my own child would need open heart surgery. I asked the cardiologist multiple times to make sure I had heard him right. He confirmed with me that Lilly needed surgery.
Que the tears...I felt so embarrassed to even show much emotion in front of the cardiologist. I tried so hard to hold things back, did not do such a good job. But how was I to react? Silent treatment? Full on rage episode? Get up and walk out without further information on the diagnosis? I felt there was no other logical reaction for that moment. I am sure the cardiologist has had many different and many similar reactions from parents.
The cardiologist said that Lilly had Tetralogy of Fallot (TOF), a congenital heart defect of the following: "...a combination of four congenital abnormalities. The four defects include a ventricular septal defect [(a whole in the ventricle wall)], pulmonary valve stenosis, a misplaced aorta and a thickened right ventricular wall (right ventricular hypertrophy)."
https://www.mayoclinic.org/diseases-conditions/tetralogy-of-fallot/symptoms-causes/syc-20353477
Lots of medical terms. Believe me, I thoroughly studied the paperwork the cardiologist gave, explaining in detail this particular heart defect. I was a bit confused at first. Basically the heart defect was preventing Lilly's blood to travel through her body properly. The cardiologist went on to say that surgery was unavoidable and that Lilly would need it in the next 2 months. Two months is fast...Que the fear and the returning anxiety. I was still in shock at the news and could not process my thoughts too well. I didn't even think to ask many questions that night, I wish I had. I did ask the cardiologist what causes TOF, since it is a congenital defect. I was worried that maybe I had too much caffeine while pregnant, did that give my daughter this abnormality? Was there anything I could have done to prevent it?
His answer? There was NOTHING I could have done to cause this!!! The heart defect simply is a freak of nature. By a very small chance, the heart did not fully develop during my pregnancy. While I did find some comfort in that answer, it did not help me in the slightest.
Let me back up a little bit. Exactly ONE WEEK before Lilly's appointment with the Pediatric Cardiologist, Justin was in a car accident (he was not at fault) and had suffered a concussion. Then, just hours before the appointment, I received news that my Grandma had passed away. So to say I was a mess after receiving Lilly's diagnosis was an understatement. Adding on this SCARY event that was about to change our family's life was the "cherry on top" to our lives at the time.
Before the appointment ended, I asked the cardiologist why he asked me about Lilly's breathing and her cold hands and feet. I answered his questions honestly, I simply did not think much of them. The cardiologist told me that Lilly's constant quick breathing was her body trying to get the air it needed! And the cold hands and feet were from poor circulation...her current heart state was not providing blood to her entire body. I felt SO stupid as a mom...why did I not see that something was wrong? I thought the quick breathing was typical; I've babysat MANY babies, I am the oldest child in my family and remember helping with my youngest brothers. Babies breathe quickly SOMETIMES, not all the time as my daughter did. I thought her cold hands and feet were nothing to worry about...people have cold hands and feet without a heart defect right?!
The appointment finished and I met up with my husband outside of the hospital. I related to him the events of the evening; I blurted out "Lilly needs open heart surgery" and went straight to our car without much of a further explanation. I feel horrible that I had given the news to Justin in an insensitive manner, but I was coping. I was trying to deal. That night, many tears were shed between my husband and I. We shared the news with our families and tried to think of what to do next. The following day we further discussed our daughter's upcoming surgery and found a little bit of comfort. We knew that things would be okay. We knew that our family would be able to get through this. Above all, we knew that we had each other to lean on, and Heavenly Father was watching over us through this trial.
I do wish to start off by saying that this post is in no way a search for pity or sympathy. Through research, I have found out that there are MANY babies that have had open heart surgery, and TWICE as many parents that go through such an experience. You wouldn't think that open heart surgery is common in such young children, I sure thought that way. This is more of an informative message of our experience, to help parents and loved ones to know that they are not alone in their fears and concerns. To know that they have someone (or many people) that they can turn to for help and comfort.
My daughter and I were at her 4 month wellness check up. Everything was completely fine, until the doctor listened to Lilly's heart. He said that he noticed a murmur and wanted a second opinion to see if it's a murmur to worry about. I suddenly got very anxious, thinking something was indeed medically wrong with my daughter. I felt myself tearing up and wanting to just bawl my eyes out...but I had no idea if there was even anything to worry about. So I tried to hold back the tears. We set up an appointment with a local Pediatric Cardiologist and left to go home. I explained to Justin what had happened that day at Lilly's appointment, and we both decided to not worry until we needed to worry.
I have a tendency to almost immediately think of the negative "what if" with upcoming things. I know that's not the healthiest thing to do...but heck I am human! I was having all sorts of thoughts leading up to our appointment with the cardiologist. I was worried that there was a fatal diagnosis, I was worried that a big procedure was needed, I was a slight mess. But I knew that I could not think that way. I knew that I just needed to, as mentioned earlier, not worry until I needed to worry.
The day of the appointment came and my anxiety came back like a tsunami...just in a huge rush. And the appointment was not until 7:00 pm...so that day was very very long. Justin had to work so Lilly and I went to Utah Valley Hospital, got checked in and my anxiety from that day was gone. I felt that we were in the right place at the right time. Such a weird feeling to have when you don't know what is going on with your child. We met the cardiologist and answered some of his questions. He noticed that Lilly was breathing very fast. He had asked if that occurred often, I answered "yes". He then asked if Lilly's hands and feet were often cold. Another question with the answer of "yes". Lilly then had an EKG and an Echo. Almost immediately after the Echo was done, the cardiologist came in and said that Lilly needed open heart surgery. Yup. OPEN. HEART. SURGERY.
HUGE shock! I NEVER thought in a million years that my own child would need open heart surgery. I asked the cardiologist multiple times to make sure I had heard him right. He confirmed with me that Lilly needed surgery.
Que the tears...I felt so embarrassed to even show much emotion in front of the cardiologist. I tried so hard to hold things back, did not do such a good job. But how was I to react? Silent treatment? Full on rage episode? Get up and walk out without further information on the diagnosis? I felt there was no other logical reaction for that moment. I am sure the cardiologist has had many different and many similar reactions from parents.
The cardiologist said that Lilly had Tetralogy of Fallot (TOF), a congenital heart defect of the following: "...a combination of four congenital abnormalities. The four defects include a ventricular septal defect [(a whole in the ventricle wall)], pulmonary valve stenosis, a misplaced aorta and a thickened right ventricular wall (right ventricular hypertrophy)."
https://www.mayoclinic.org/diseases-conditions/tetralogy-of-fallot/symptoms-causes/syc-20353477
Lots of medical terms. Believe me, I thoroughly studied the paperwork the cardiologist gave, explaining in detail this particular heart defect. I was a bit confused at first. Basically the heart defect was preventing Lilly's blood to travel through her body properly. The cardiologist went on to say that surgery was unavoidable and that Lilly would need it in the next 2 months. Two months is fast...Que the fear and the returning anxiety. I was still in shock at the news and could not process my thoughts too well. I didn't even think to ask many questions that night, I wish I had. I did ask the cardiologist what causes TOF, since it is a congenital defect. I was worried that maybe I had too much caffeine while pregnant, did that give my daughter this abnormality? Was there anything I could have done to prevent it?
His answer? There was NOTHING I could have done to cause this!!! The heart defect simply is a freak of nature. By a very small chance, the heart did not fully develop during my pregnancy. While I did find some comfort in that answer, it did not help me in the slightest.
Let me back up a little bit. Exactly ONE WEEK before Lilly's appointment with the Pediatric Cardiologist, Justin was in a car accident (he was not at fault) and had suffered a concussion. Then, just hours before the appointment, I received news that my Grandma had passed away. So to say I was a mess after receiving Lilly's diagnosis was an understatement. Adding on this SCARY event that was about to change our family's life was the "cherry on top" to our lives at the time.
Before the appointment ended, I asked the cardiologist why he asked me about Lilly's breathing and her cold hands and feet. I answered his questions honestly, I simply did not think much of them. The cardiologist told me that Lilly's constant quick breathing was her body trying to get the air it needed! And the cold hands and feet were from poor circulation...her current heart state was not providing blood to her entire body. I felt SO stupid as a mom...why did I not see that something was wrong? I thought the quick breathing was typical; I've babysat MANY babies, I am the oldest child in my family and remember helping with my youngest brothers. Babies breathe quickly SOMETIMES, not all the time as my daughter did. I thought her cold hands and feet were nothing to worry about...people have cold hands and feet without a heart defect right?!
The appointment finished and I met up with my husband outside of the hospital. I related to him the events of the evening; I blurted out "Lilly needs open heart surgery" and went straight to our car without much of a further explanation. I feel horrible that I had given the news to Justin in an insensitive manner, but I was coping. I was trying to deal. That night, many tears were shed between my husband and I. We shared the news with our families and tried to think of what to do next. The following day we further discussed our daughter's upcoming surgery and found a little bit of comfort. We knew that things would be okay. We knew that our family would be able to get through this. Above all, we knew that we had each other to lean on, and Heavenly Father was watching over us through this trial.
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