Maverys Heart

We did not get the news we had expected today at Maverys first appointment with the heart doctor. She is ok, she will be ok, just not what we expected.

Everything was fine when we got there. She let the nurse listen to her heart and then the doctor was able to listen. He explained to us exactly what Tetralogy of Fallot is, and he told us what could happen with leaky valves etc.. He said he thought it sounded very good and so we were encouraged before we even had the tests done.

We went to a room to have the echocardiogram done (ultrasound of the heart) and Mavery did great. They had her sitting on me which I think helped a ton. Mark fed her snacks, the lady gave her bubbles, and she was fine till almost the end. Which should have been an indicator. The doctor told us 10 minutes. 20 minutes later she said she would quit but he might want more pictures. After the echo they did an EKG. Which did involve a little bit of pinning her down while they stuck stickers all over her little body, but at least it was very quick. The doctor came in and said he wanted us to come back to the room to explain things. Hmmm..

So we went back to our room and he starts talking and Mavery decided she has to potty which means she automatically pulls her pants down in the middle of the room so you are forced to take her even though you know she is just bored and does not need to go. He kept talking and when I came in the room I could tell by Marks face it was not just a "yep, it sounds great" report. Dr Goel started explaining to me that there are 2 things wrong. Which immediately made my heart drop. And he is so sweet and must have realized that those words did not go well with me because he immediately said "she is going to be fine, everything is going to be ok, you do not need to worry about this." He went on to explain what is wrong and bear with me as I try to explain this, because if you can remember, I am NOT into some details and while I tried intently to listen and understand, I was having a hard time getting past the 2 things wrong part still.

If you would like to know what exactly Tetralogy of Fallot is, click here. I thought this site had a good explanation. He said her repair was good, and that sometimes even with a good repair there are things wrong afterwards. But he said that typically this would have been caught right away with follow up. So we assume she did not receive follow up after her surgery. What he told us is that her left pulmonary artery is narrow. Typically this would be widened in surgery for the blood flow. Sometimes the doctors leave it in hopes that it will enlarge on its own. We of course have no idea why they did it or what their thinking was. But it now needs to be enlarged because it is putting pressure on the heart and could keep the lung on that side from developing correctly as she grows. He is 90% sure that the stress is caused from the pulmonary artery being to narrow. The other 10% chance is that there is an obstruction between the pulmonary artery and the right ventricle from the TOF repair. He will not be able to know this unless we do a Heart Catheritization to enlarge the ventricle. If the Heart Cath works, then we know it was just that the artery needed enlarged and we are done. If it does not work, then we will have to talk about heart surgery to remove the obstruction. We did not talk details about a surgery, he was not letting me go down that road yet and he said he feels pretty sure that we will not have to worry about it. We talked about the heart cath a little bit and I think it will be done with in the next month. He will consult with a team of doctors and then we will set a date. He also said they will do some lung test to check her levels before and after but he lost me there. He said the heart cath will be one day, she will be sedated, and it will be done at Childrens Hospital.

As for the bump, he said that is purely cosmetic as we assumed. He said that when they close up the chest, if the bones are not put together well, they will do that. Sometimes it will get worse, sometimes it will get better as they grow. There is nothing to be done till she is done growing(because her bones must be done growing), then she can make a decision if she wants it fixed. If she would need surgery now, they would fix it then.

This was our first time to meet this doctor. We were given his name from our friends who also adopted a daughter with TOF. He really was wonderful, took so much time explaining things. Told me NOT to go home and get on the Internet, if I was worried or confused to just call him and he would talk to me and explain things. We were both impressed with him. He was calming, which we needed. He told us how beautiful and smart Mavery was, which was very sweet. He said "I can see she is very smart, very good brain. That is good, I can't fix her brain, but I will fix her heart!". He told us she is healthy and to treat her like any child, no restrictions, nothing to worry about. He said we would not see any symptoms for these problems she has, till she is about 10, then we would see her winded and tired because of the affect on her lungs.

So, all that technical stuff aside... To say we were shocked is an understatement. You know we expected to walk in there and hear she is fine and be on our way. Neither of us ever expected any different. Which is silly I suppose. And I think that is the thing with heart babies. From the outside, you would never know anything is wrong with them. So my emotions have been all over the place today. The thought of putting her under scares me to death. The fear of something going wrong during the procedure. The what if's, whys.... But I am trying not to dwell on any of those. I am trying to rest in the verse in Psalms, 147:3 HE HEALS the broken hearted. I know that Mavery is going to be fine. I really trust that God is going to take care of her. We know that this procedure is very common and even if it came to heart surgery, she will be ok. It is just the mommy part of me that knows she has already been through enough in her 3 little years. I want to protect her, I want to keep her tears away. I do not want her to have to go through any of this. And yet then I think, at least this way I can hold her and comfort her. Who would have done that in China? As he talked about her heart today and I pictured that first surgery, my heart broke all over again. Who cared for her after that? Did a nanny that she knew stay with her, or was she sent alone to the hospital. It is to hard for me to visit those thoughts. So in many ways I am thankful that this problem was found now I suppose. Still hard though.

We ask for your prayers as we prepare for the heart cath. Our prayer of course is that this will fix it and we will not have to think of surgery at all. I will let you know when it is scheduled. Thank you for thinking of us.