It’s been a while since I’ve blogged regularly! I decided that so many of you have been following along with Ruby’s heart journey that I would update you all on how she is doing these days :). Plus, she turned 2 and that’s pretty great. She’s such a fun little girl.
The end of April, Ruby had complained a few times about her heart hurting her. She’d be running around playing and come for a hug, pat her chest, and say “ow”. I called the on-call cardiologist at Primary’s on Saturday and she wanted Ruby to be seen that week and get an EKG done.
Tuesday was just spent trying to catch up a little on what I’d not been able to get done Monday, and handling little bouts of panic but also peace. PCH called in the afternoon and said she was scheduled for an echo Wednesday morning and we’d need to be there by 8:45 (her stop drinking clear liquids by 7:30). I had a church committment Tuesday night and felt pretty disconnected from it all.
We got up early Wednesday morning and I took my kiddos to my friend’s house and drove up to PCH. Ruby actually was doing quite awesome. I was happy she wasn’t so hungry as I thought she would be (I had given her apple juice so she could drink that in the morning). Got to PCH and checked her in. They took us right back and the anesthesiologist explained pros and cons of all the medicines they were going to give her. Surprisingly, Ruby was not that fussy at all. Another answer to prayers–I kept praying she would feel peace and comfort as well. Which she most definitely did NOT feel on Monday ;). She was not impressed with anyone that day, funny girl. Although she was exhausted that day, and starving since they had told us to hold off on feeding her in case they had to do anything that day.
The IV team came in. We laid Ruby on the table, which made her fuss for the first time. They tried once and the vein rolled, and then got it the second time. Ruby was making the most sad faces ever. It’s so sad to even see your kids get IV’s, honestly. They just don’t understand what’s going on and why we are all forcing her to lay still while they poke her :(. The saddest was after they left and she just snuggled so tightly into me, crying and holding her IV’d and bandaged hand up to my lips to kiss over and over.
They took us to another room and I held her while they sedated her. She was so funny–the first drug is a relaxant and she just started looking around a little crazy eyed at everyone and giggling. She looked right at me and just laughed so hard for a couple seconds. So cute. They were all chuckling in the room at that. Then the next drug put her out and I they kicked me out. It was a limited echo so it went quickly. Just about 25 minutes was all, but they didn’t get a good enough picture so they sent us to do a CT scan. She cooperated just fine, thankfully.
After the CT scan, Dr. Jou came and talked to me and said that yes, it was indeed an aneurysm, but that it isn’t large and so they can wait and watch. She will be monitored to make sure it isn’t getting bigger. He said we’ll go back in about 6 months time (eek! Seems like forever knowing what it is!) to check on it to see if it’s getting bigger. If it creates more of a pocket then she’d start aspirin or other medicines so that the blood won’t clot. My lawyer, who’s handling the Xarelto class action suit on our behalf, told me not to go into too many details about it. October is when we should go back unless we are concerned for any reason.
I’m so glad that it is a “wait and watch” right now. I know there is a very real possibility of it getting larger and ending up needing to be taken care of in the future. But I am SO so so happy that we found it now. I cannot imagine what might have happened. I just know that we are being watched out for, and I’m so incredibly thankful for the promptings I felt to take her in and check this out. And for the pediatrician ordering that xray!
I guess the one thing I’ve realized from this, is that no matter how well she’s been doing, her heart is not fixed to be a perfect heart. It won’t ever be a normal heart. It’s a hard pill to swallow when things go wrong, especially when we were pretty much told she was in the clear as far as open heart surgery goes, they hoped, but I know that she’s done incredibly well and what a blessing that is. Not that it will come to OHS, but it’s a possibility (aneurysms, from what I’m finding, don’t ever go away on their own). I guess it’s a constant reminder to enjoy the moments we have with each other. And so in some mixed way, it is a huge blessing to have that reminder. Not that I love the idea of fearing for her, or for any pain and suffering she has to go through, but more that we are learning to trust God through all of this and to realize that we wouldn’t be who we are if it wasn’t for her heart being the way it is. I want to learn to not live in fear. But I don’t want to forget to make the most of my time with my family either, so rather than living in fear I will do my best to live trusting and loving with all my energy!
I have read and read and read up on Ruby’s heart through her surgical records and all of her appointment notes and everything–there were over 100 pages I paid to have printed and I started organizing them in a binder for her and myself. I think it will be good for her as she gets older and especially when she moves out to have her care organized and understand her heart better. It has been totally fascinating to read and I’ve loved to learn more and know her heart better. I also probably know more than I wish I did. For instance, her pulmonary valve, mitral valve, and tricuspid valve all have regurgitation. It’s mild but it’s also something that wasn’t there a few months after surgery. What that means down the road, only time will tell. But I do know it’s not the best thing to have, as it can cause her heart to work harder, to enlarge, etc. It can cause blockage, it can cause thickening of the walls. I know of course they are watching it, but I do feel it’s something that would have been worth mentioning to me. Dr. Jou was awesome but he wasn’t one for over explaining things. We have been assigned to Dr. Su and I’m excited since I’ve heard wonderful things about him. I might just tell him to pretend that we don’t know very much about her heart and to explain what we can expect in the future for her. Since arrythmias are quite common when they grow older, that is something I would have wanted explained to me, rather than have to read it somewhere, ya know? I have no idea what to expect from this aneurysm. So I hope he is a better fit for us!
My friend told me about an app called Heartpedia. It’s so good to look at and understand everything better. Below is a normal heart.
Here is a heart with TOF:
And here is the outside of the heart with the repair. See that labeled the Transannular patch? That is where the aneurysm is. It was patched (I called and confirmed this) with the pericardial patch, meaning that they saved part of her heart and patched this spot with her heart. And the patch is weakened so that is why there was the bulge on the x-ray. We were not told (neither of us remember and I never wrote it down on anything–I took pretty good notes during the whole surgery and recovery so I think I would have done it with this) that they widened her pulmonary artery. In fact, when Dr. Jou said he thought that was the portion where the aneurysm was, I said, “Wait a minute, I was told they left her pulmonary valve alone and they did no work there.” Well they did. Her pulmonary artery is narrow still, but they did widen it during surgery. So the RVOT patch, or the Right Ventricular Outflow Tract patch, is where they cut into her heart to widen the pulmonary artery. I still need to ask Dr. Su when we go next what they did to widen it and if anything was left in there to keep it like that. I don’t think there is but it’s something I couldn’t decipher from the surgical notes. Those things are so hard to read but I learned a lot as I looked up terms of things.
This is a normal heart:
This just shows the VSD, along with the right ventricle being thickened. Because Ruby’s hole was so large, they actually had to sew into the tricuspid valve to patch it. Because of the VSD, the right ventricle was also really thickened we were told.
Pic of repaired VSD.
Unrepaired pic. If you compare with the picture above you can see the narrowing of the pulmonary artery:
Again, the waiting and watching is hard. I just hope it doesn’t get bad, and if so, it’s doing so slowly so that we aren’t missing anything!
I’ve since met about 5 other moms in a Tetralogy of Fallot Facebook group that have a heart baby with an RVOT patch aneurysm. Unfortunately, 3 of them have had to have another open heart surgery to fix the aneurysm. The other two are watching and waiting as well. One lady told me that her doctor said that the reason for surgery is almost always because the aneurysm is creating problems in the heart by making it work harder.
But until then, we pray and hope that we catch anything we need to.