Ruby had her sedated echocardiogram this past Thursday. She did well–it was sad with the IV and they had to try both hands and dig around a bit with the needle before they found one to give her the medicine. She had to go fasting but did really great with that as well. She’s a trooper. She was all smiles for the IV team when they came in but not when they were finished! My friend’s 7 month old baby just had her open heart surgery last Wednesday and she put it this way, “Grace now has a healthy fear of anyone in scrubs.” So I guess we can probably expect the same, which is too bad because she has actually enjoyed all her visits to the pediatrician every week! I remember thinking with Bailey how awful it was to watch her get her blood drawn and how it made me cry when we were done with the appointment and how on earth were we going to watch her have major surgery–I had very similar thoughts that day! The cardiologist said her heart murmur is very loud now and sounds like a washing machine. He originally came in and said they would do the surgery in a month. I told him her pediatrician’s concerns about her getting sick with siblings going to school and bringing things home, especially as we enter RSV and flu/cold season. Dillon calls them our petri dishes and I told him that–and it made him laugh. The reason he wanted to wait a month is because of her cold and ear infection she had a couple weeks ago. So he said maybe we can push it up to be 2 or 3 weeks from that day. On a good note, she was first denied (twice!) the RSV Synagis shots but the cardiologist nurse helped us appeal it and now she is approved! Yay! They put her under and the echo lasted about 1/2 an hour to 45 minutes long. Dr. Joo, our cardiologist, came in and spoke with the tech a bit about what they were seeing. Her saturation dropped once she was under and they put her on oxygen but they figured that would happen. She had 4 people in there with her, and Dillon and I were in there as well (Dillon had to come a bit late and lucky for him missed all the sadness and she was already out by the time he was able to get there). It worked out perfectly and she started to wake up a little right when they were done, but boy did she want to stay asleep for a bit longer! They started to move us to the recovery room the floor up, but the cardiologist decided that was a good time to talk. So we stood there with 3 people waiting on us trying to talk with Dr. Joo and it just didn’t work very well. He said, “Everything looks as expected, we’ll call you for the surgery. Any questions?” Yes, I do have questions! I almost panicked–I was hoping to get a lot of answers and here we were standing in the little hallway with people waiting to take us to recovery. I grabbed the picture of her heart the first cardiologist drew and asked him a couple questions as quick as I could think, but still left feeling pretty disappointed. I just want to know her heart inside and out. I want to know everything, whether it makes a difference or not in the outcome. I know it is what it is, but I want to know WHAT it is. I remember now that he did tell us if she comes out of her operation extubated or without a tube down her throat, (with a tube down her throat is called intubated) that is a good sign. So this past weekend I made a big list of questions to ask him, and called him yesterday. I missed the first return call from him (you have to just leave a message every time), but he called back about ten minutes later. And he was awesome. He was so kind and so patient and so great at explaining things. I just really needed to know what was going on and he was very willing to talk for as long as I wanted to. We were on the phone for at least 20 minutes. I’m so thankful he took the time to answer my questions. So here’s what I asked: Is her heart enlarged? It is thicker than it should be and getting thicker because it’s working harder, but it is not overly enlarged. Part of the reason they do the surgery at about 6 months is so this can reverse the damage done and her heart will become a normal heart after surgery, assuming that little or no work will be done on the pulmonary valve. What part are they shaving off her heart? They are shaving off part of the right ventricle Why else do they do the surgery at 6 months? Her heart is becoming more and more stressed. If they wait too long, her heart could possibly not ever reverse the damage to be a normal heart. They used to wait longer a few years ago but found that the heart had a harder time after being stressed for so long, and the damage was greater and didn’t always “fix” itself to be normal even after surgery. How many ASD’s (atrial septum defect) does she have (holes in the upper chamber of the heart)?: He said she has a couple smaller ASD’s, one of which is a PFO, or a patent foramen ovale–this is a hole in the heart that didn’t close the way it should after birth. The other ASD (or ASD’s, he wasn’t sure how many) they will patch during surgery, but they actually keep the PFO open to relieve pressure after surgery in the right side of the heart. I thought that was kind of cool. He said 25% of the population actually have a PFO and don’t even know it. During the echocardiogram, you and the tech discussed a number in the 60’s or 70’s–something you were measuring. What were you talking about? He said they were discussing the degree of narrowing in the right ventricle–I’m not sure if it is the right wall of the heart that is thickening (well, I know it is thickening, but that’s not the only reason why you would have narrowing in the right ventricle I don’t think–it could also have to do with the pulmonary artery). ANYWAYS, this was the thing that has me worried the most, and my feeling is that it worried him and was unexpected as well. So they were discussing the gradient pressure. Normal should be 0. Hers he was guessing to be a 60 or 70. The tech told him he was close. Yesterday on the phone he told me her gradient pressure was an 80 on the results. Which would mean that her right ventricle pressure is severe. Her last echo two months ago she was at a 50. Immediately after the tech told him, he started to ask about her oxygen saturation. I really believe that she has been very blessed to do so well. EVERYTHING that I read says 80 is severe and surgery needs to happen very soon. Thank goodness that is the case! Most of what I can read says that when the pressure is 80, they have a greater risk of having the blue spells where they can pass out. But Dr. Joo sees her and she appears to be doing great–he said that our reports on how she is doing, what he sees, and what the pediatrician sees is a huge indicator of how well she is doing. She is not passing out, she is not losing weight–she is doing so amazingly well. Especially with her right ventricular pressure being severe. She has been increasingly more tired. She has been sweating more. These are all signs of heart failure. I’ve learned to not freak out over those two words, even though they sound so awful. As long as a child is still gaining and doing well otherwise, heart failure is gradual. My comfort here is of course I see her and she is happy and seems to feel good other than tiring easily. My other comforting thought is that the surgeons will all be meeting together hopefully this week to look at her echo results and review her case and decide when is best for surgery. If they are alarmed at her pressure gradient number being an 80, well then I guess she’ll be having her surgery as soon as they want her to! That’s the great thing about PCH. I love that not just one surgeon is looking at it–I love that all of the cardiac surgeons are checking it out. We are so blessed to live where we do!! How have her EKG’s looked? Nothing has pointed to anything other than what they expected. What medicine will she come home on? Lasix (controls fluid on her heart) for sure, tylenol, and possibly oxygen to loosen up her heart–the right side of her heart is so stiff right now it might make her have a hard time getting enough oxygen after surgery. So the oxygen can help relax the heart and as the heart adapts they can maintain good levels of oxygen on their own. How long after her surgery is it important to keep her away from people? He said it is really hard to know what is going on if they get sick–if she gets a fever they will have to test for all sorts of things just in case it is an infection with her incision. He said it just complicates things and so they want her to stay healthy and keep people (including our kids) away from her as much as possible. He didn’t really give a time frame but I’m sure they will go over this in the hospital. How long of a stay can we expect? I actually didn’t ask this, but he just said to plan on 2-3 days in the CICU (cardiac intensive care unit–where we cannot stay overnight, sadly), and then 3-4 days on the 3rd floor where in CCU (cardia care unit). Does she have fluid on her lungs from her PDA (Patent Ductus Arteriosis–this is a small artery going to the lungs or wherever the PDA causes problems? In some babies, however, the ductus arteriosus remains open (patent). The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries. Her results have shown a little, but not bad at all. If she had fluid on her heart or lungs that was problematic, we would be able to tell just by how sick she was. Alright! Do you all feel like heart experts now? Ha! I don’t, but I’m learning all I possibly can! So for the surgery they will be patching the main VSD (the large hole in her lower chambers), patching any ASDs (holes in the upper chamber), shaving off the thickening of her heart at the right ventricular, and tying off the PDA. I *think* that is everything. Our new ward is fasting this Sunday for Ruby, and they have asked our old ward to fast for us as well. I asked them to specifically fast for Ruby to only have to have this one surgery, that her pulmonary valve will be ok and will have little to no work done on it. Dr. Joo said that her valve is looking good from this last echo…it looked good on the one before as well, but didn’t look as good on the first. So that is just amazing and awesome. :)