Eliza's Heart Story

(This post is long and has been quite a shock for our little family but I wanted to document it somewhere.)

          I was told in the hospital when Eliza was born that she had a heart murmur. Everyone told me not to worry though because most of these murmurs that show up in babies usually close up as they get older. Each time I took Eliza in for her well child visits they would hear this murmur but were not concerned about it. However, her doctor said if she ever had lack of energy, turned blue, or had a hard time breathing then this would be concerning. So he said to watch for that. Her doctor said they would continue to monitor this murmur as she gets older.

            Eliza turned three the end of November. So, naturally I scheduled her three year well child check. I hesitated on taking her in because she didn’t need any immunizations at this appointment because she was all caught up on her immunizations. However, I ended up taking her in and it was a good thing I did.

            At her appointment the nurse asked if I had any specific concerns about Eliza that I wanted to discuss with the doctor. I said I am always concerned about her growth so I wanted to see where she was at regarding her growth.

            She has always been in the very low percentiles on her growth and has never eaten very well since she was a newborn. In my head I have always been concerned about this-sometimes more than others-and had brought it up in many of her well child visits. The doctor said she is low on her growth scale but at each appointment she is growing and gaining some weight just very slowly. She is developing and meeting her milestones. She is just following her own little growth scale and may just be little. After all this I still in the back of my head have always wondered if there was more to her failure to gain weight. Maybe its mother’s instinct but we may just have the answer now.

            While at Eliza’s three year well child check her doctor listened to her heart still hearing the murmur and with her low growth decided to refer her to a pediatric cardiologist to just double check things out. We scheduled an appointment with the cardiologist for the next Monday morning December 2^nd.

            On the Sunday before her appointment Mike asked me if I thought he should come to this appointment. I told him I didn’t think he would need to but if he thinks he should then he should come. I was thinking it wasn’t going to be a big deal. Little did I know at the time.

            Monday morning I dropped Tyson off at Marci’s house and took Eliza to her pediatric cardiology appointment with Dr. James Hoffman. The nurse started off by getting her blood pressure and doing an EKG on her. Eliza was very nervous with them and especially with Dr. Hoffman but was cooperative and let them do everything they needed to do. Dr. Hoffman came in with her EKG and said that it is concerning to him. He showed me the EKG and told me his concerns, but do I remember exactly what he said? No. It all kind of went over my head even though he was trying to simply explain it to me. But what he did say that I remember was that she has a first degree AV block. He said that he would like to do an echocardiogram on her. He also listened to her heart for several minutes with her sitting up and laying down. As he was listening he said, “I can understand why your doctor didn’t send you in as it sounds to be a typical murmur.” He pulled out an example of the heart and explained what was happening to her heart. He said that it would be a 30 or so minute wait to do the echo in their office or he could call over to the hospital and see if they could do it sooner. He said it would probably be better to do it there anyway since he wanted her to wear a holter monitor for 24 hours and they would have to hook her up to it there at the hospital. I told him we would go to the hospital. He said they were waiting for us at the hospital. He said after they finished the echocardiogram on her he would come over to the hospital and talk to us about the echo and have them get her set up on the holter monitor.

            Eliza and I left his office and headed across the way to the hospital. Of course after hearing this I was in tears and a nervous wreck. I called Mike at work and said that he needed to leave work and meet us at the hospital. Then I called my sister Marci who was babysitting Ty and told her not to expect us back for a while.

            I walked into the hospital and found the cardiology department, checked in and waited for them to call us back. They took us back to the room and got her all hooked up for the echo. They had cartoons on for her to watch which helped ease her a little. She was very cooperative and held still for them to do the echo which took about 45 minutes. I am so glad to because otherwise she would have had to have been sedated to do the echo.  Mike joined us shortly after they started the echo which is good because I needed his support.

The tech finished the echo and went to call Dr. Hoffman so he could come and talk to us about the results. He walked in and looked at the echo on the screen. Mike asked him if it was what he thought or worse and Dr. Hoffman said it was worse than he thought. He told us that she has a congenital heart defect. She has a hole in her heart-a big hole and a smaller hole-as well as a cleft. He said that this all would take surgery to repair. He said that it would be open heart surgery and they would have to put her heart on bypass for about 45 minutes while they worked on her heart.  He said the whole right side of her heart was enlarged. He said as the surgery was completed this part of her heart would go back to normal. He said that it is a fairly routine procedure for the surgeons to do. He told us there is a 20% chance that when she got older there may be a chance she would have to have an additional operation. He explained in the procedure they would be putting a patch over the hole and stitching up the cleft.

 He said this was most likely the cause of her failure to gain weight. He gave us some information on what her heart condition and on what they would be doing in the heart surgery. He said that she has lived with this with no serious symptoms that it was not urgent for her to get this done but that we should probably do it within the next 4-6 weeks. He said her stay in the hospital will probably be 5-7 days. But we would be very surprised how fast she would bounce back. He said that because they cut through her sternum we would not be able to pick her up under her arms for about 6 weeks as it heals. He answered all of our questions we had and said to call his office with any further questions because as we went home and thought about it and researched it more questions would come up. He said she needed to wear a holter monitor for the next 24 hours. The holter monitor would show if there was more than a first degree AV block (which that is all it showed which is good). 

Eliza with her Holter Monitor. "AKA her purse"

When she came in the next day to have it taken off we would also need to have her do a chest x-ray and some blood work done. 

 I kept it together as he was explaining all this but as we left and were driving to pick up Ty I kind of lost it not really knowing what to think or expect or exactly what was going on. I told Marci the news as we picked up Ty and then when we got home I called and told my mom. She said that after the surgery is done Eliza is just going to be all new and it is going to be really good for her and we will probably see some good changes in her. I also called Cassy that night and told her about it as well and asked her to watch Ty the next day as we went back over to the hospital. Most of these conversations I couldn’t stop the tears from coming. I didn’t sleep well that night either as I was worried about Eliza with her holter monitor worried she would get tangled up in it or it would go off and we would have to start all over with it. I also couldn’t get my mind to stop thinking about all the details all the things I was unclear on and just Eliza having to have open heart surgery. I never thought one of my children would have to go through something like this. 

The next day we went and got her tests done and holter monitor taken off which she surprises me all the time and did so great with. We stopped at Dr. Hoffman’s office to also pick up some information on primary children’s hospital that they had put together. Dr. Hoffman’s nurse said that he would presenting Eliza’s case to the primary children’s cardiology surgeons the next day and someone would be calling to set up a surgery date. Also, his nurse said that someone was taking care of all the insurance stuff and getting everything preauthorized for us.

It was on Wednesday night that we were called and told to expect her surgery date to be on Wednesday, January 8^th. We were hoping it would be the first couple days in January while Mike was off of work for the holiday break but they didn’t have anything available. So Mike will go back to work on January 6^th and then we have to be up to primary children’s to do some preoperative testing on January 7^th and her surgery will be the next day by Dr. Eckhauser.  

Dr. Hoffman and his office have been so great to work with. This has all been so surreal

for us and they have been so good to give us all the information that we need and answer any questions we have had. Dr. Hoffman has been awesome as he has called me personally twice with additional results and information that we will need and to answer any questions that have come up.

After the complete shock of the news about Eliza has worn off, we have studied and learned a little bit about Eliza’s heart condition and got her test results back so we are better prepared and know what is going on. To technically explain it Eliza has a Primum ASD (Atrioventricular Septal Defect), a small secundum ASD and a cleft in the left AV valve. The first defect she has is a primum ASD which means that there is a hole in the septum (muscle wall) that seperates the right and left upper chambers of the heart (atria). The second defect she has is a cleft of the mitral valve. It is a malformation of the Mitral Valve, the one-way valve between the left atrium and left ventrical, or main pumping chamber of the heart. This consists of a cleft or notch in the “flaps’ or leaflets of the valve, preventing complete separation of the left ventrical from the left atrium.

We have been trying to explain it all to Tyson and Eliza and Tyson has been very good at blessing Eliza’s heart in every prayer that he says. We told Tyson that we are going to have to celebrate his birthday early since his birthday is January 9^th which is the day after Eliza’s surgery. He doesn’t care as long as he can get his Spiderman birthday.  Eliza just keeps saying she is going to have an owie. I don’t know how much she actually understands.

I have been agonizing over what is going to happen that week of the surgery. I have had many sleepless moments wondering how the surgery is going to go, how Eliza is going to do and recover, wanting to make sure Ty is being taken care of and who is going to take care of him at what times, arrangements for ourselves and many, many other thoughts.

We have had so much support from our friends and our ward asking what they can do which isn’t much besides prayers for right now. Those in the primary presidency with me told me not to worry about anything. They told me to show up when I can but don’t worry about sharing times or anything till after baby comes in March. The bishop is going to do a ward fast in January. Mike’s work has been very supportive to him. We have been very blessed from all our friends, family, ward, and neighbors.

Now all we can do is wait for the time to come and see what it all brings with it. I have heard it is a lot harder on the parents than the child. I constantly look at her and think what is about to come for her. Then I think how it is going to affect her afterwards and how beneficial it is going to be for her for her heart to finally work the way it is supposed to. I am so grateful that we caught the problem now. I am very grateful, scared, and overwhelmed all at the same time.