Two years ago today, my oldest daughter was in surgery at Primary Children's in Salt Lake.
But for journaling purposes (and those who have a few extra minutes to read), I'm gonna start before that.
Lauren started acting sort of strange in Dec of 06. She never wanted to go to recess. Her Kindergarten teacher and I were trying to figure out if it was a bully or something social. In mid-January of '07 she started coming home saying she was tired. I couldn't figure it out. She didn't want to do some of the things she usually did like dance to music. Dancing basically stopped completely. Towards the end of January she came down with fevers in the afternoon. She'd be fine in the morning, come home from school with a fever, sleep for a little while, and then seem a little better. I kept getting more and more confused and WORRIED.
Finally, I called an made an appt with the pediatrician not knowing really what he could tell me. I was at a loss. Jan 31, 2007 we saw Dr. Pettit and the Pediatric Center. She weighed in @ 39 lbs. Keep in mind that she was 6 at this point. My 5 year old already weighs more than that. The Doctor listened to my concerns and then began his normal exam. As he listened to her heart, he turned to me with his stethoscope still in his ears and asked me what type of heart disease she had? I must have had a baffled look on my face and I said, "She doesn't." He apologized and listened to her heart again and then sat down. He told me that he heard a heart murmur. I could tell that he was trying to stay calm and not alarm me. Dr. Pettit said we needed to see a pediatric cardiologist and that he'd see when he could make an appointment for her and Primary Children's. He must have pulled some strings because we had an appointment for the next morning.
We were blindsided, but in a weird way grateful that maybe her behavior could be explained. So the whole fam piled into the van and took a trip to SLC. We were trying to make it sound fun to our 6 and 3 year old so we booked a hotel and told them we could ride the tram and build-a-bear. The Pediatric Cardiologist listened to her heart, said he definitely could hear the murmur and ordered an ECHO. During this appt, the tension rose as the guy doing the echo couldn't say much. The Doc came back in after looking at the ECHO remotely and told us she needed heart surgery.
I though Jason was going to pass out. It was shocking. Only thing they knew at this point was that her aortic valve was leaking due to bacteria "buildup" on it. I remember looking at the screen as he explained it. It reminded me of the kitchen door on the Cosby show that swung both ways. Instead of "sticking" closed, it never completely shut and was causing a lot of problems. The doctor told us she needed to be admitted to the hospital immediately so they could get things figured out.
They moved us into a tiny room to wait for further instructions basically. They needed to find her a room and get things organized. I think we were in that room for 3 hours. It was torture. This picture was taken inside the tiny room. I had no idea that she looked so ill.
In the meantime, I had to call my parents (my mom, cuz my dad was in legislative session) and tell her that their 6 year old granddaughter was in line to have heart surgery. CRAZY. Telling my Mom made it real and scary! My mom, who was in Boise, immediately got in her car to be there with us. That was a HUGE blessing! I had a 6 year old in the hospital, a 3 year old who was confused, and a 4 month old who I was still nursing. Thank goodness for Jason's job that allowed him to take his vacation days so we could all stay together.
They had to perform a lot of tests to discover what caused the infection and valve damage. She was seen by a lot of doctors. Infectious Disease and Cardiologists were the main groups of doctors looking at her case. After being in the hospital on antibiotics for several days, they decided it was safe enough to do the openheart surgery. Feb 8 was supposed to be surgery. It got pushed back every day until the 13th. She was the first surgery of the morning so that was good. The hardest thing was taking her down to the anesthiologist and "turning her over" to him. We could only go so far and then we had to watch her go it alone. That was absolutely heart-wrenching! She was in surgery for about 8 hours. When they opened her up to do the valve replacement, they discovered some damage on her mitral valve as well. So what they actually did was replace her aortic valve with her own pulmonary valve. Her pulmonary valve was replaced with a donor valve. Her mitral valve was repaired. Maybe this picture will help.
She was in and out of the PICU, on antibiotics constantly, on heart medication, had a PICC line put in so that they didn't have to stick her every time they needed blood. She was really put through the ringer but through it all she was so strong. I think she broke down and cried only a couple of times. That was when they postponed the surgery cuz each time they scheduled it she had to go without food or drink for a long period of time so it was all for nothing.
Needless to say she started dancing 5 or 6 days after being in the hospital. Her poor heart was so tired that she didn't have the energy to hardly move let alone play at recess or dance at home. She was released Feb 18, 2007. She went home with a backpack and her picc line still in because she had to have 6 more weeks of antibiotics to cure the endocarditis. They still never figured out what caused it. Their best guess was dental work, but who knows. Here's a couple more pictures from the hospital.
I know this post is long. I apologize, but I need to remember. I am so grateful for my daughter's strength. I am grateful for doctors who spend years studying and practicing to save lives! I am grateful for the gospel in my life. I am grateful for my family who took such great care of us through this whole thing. I am grateful for a husband who honors his priesthood. This experience drew us closer as a family. One trial "down", plenty more to come, but if I have my family by my side, and the Lord's comfort and guidance, I can get through anything.
