Wade and I have now vowed to spend next year - May 23, 2014 in a better place. The past two years in a row we have spent that day in hospitals with kids. Despite the stressful week, we have have seen blessings in our lives through both experiences.
Bring on the news:
{Noah}
This Thursday, May 23, marked one year seizure free! (
read link here) And while none of us enjoy the daily medication he is on, one year (even with medication) is a great accomplishment! One more year to go and then we can go without medication. Way to go Noah!
{Lucy Lu Lu}
Tuesday was Lucy's 6 month cardiology appointment. This was just a regular follow up appointment and they were going to do an echo (non sedated) and EKG. We felt pretty good going into this appointment. Lucy is super healthy looking. She passed her 6 month appointment with our family physician with flying colors. She is growing, developing, acting just like a normal 6 month old should. I even have strangers tell me how cute and healthy she looks all the time. With cheeks like these you wouldn't think that she had a crazy heart.
So like I said, we didn't expect bad news. At 2 months the gradient of her pulmonary valve measured 57. (it's supposed to be 0) When we did the sedated echo at 4 months, we were hoping for a smaller number because she would be asleep. It was actually few points higher. But we still had the option of waiting or doing a procedure right then. We both felt good about waiting and prayed that it would start to work it's self out.
Tuesday she was super good for her echo. She wasn't asleep, and of course, she could have laid completely still, but for a 6 month old, I felt she did really well. She was super calm and laid there and watched us and looked around. She didn't really cry and certainly wasn't upset. I thought for sure we would get a good reading!
Totally expecting to hear good news, it was a shock when our cardiologist came in and explained to us that Lucy's heart gradient was actually worse. A LOT worse. The measurement they got Tuesday was 107. WHAT??!! He was debating if we should be admitted that day or not. He said she would in fact need the balloon procedure on her heart to fix that valve and we needed to do it this week. After he consulted the cardiologist in the cath lab we were told she would have the procedure Thursday morning.
Basically, they take a catheter containing a balloon, is placed across the pulmonary valve. The balloon is inflated for a short time to stretch open the valve. For Lucy,the cardiologist went one time to take a look and get a true accurate measurement of the gradient and went a second time with the balloon.
Thursday we checked in at 8, for a 9:30 surgery. She couldn't eat anything past 5:30am. The surgery before her had some compilations (the little girl ended up ok, we asked) and we ended up waiting until 12:15 till we left her with the surgery team. Such a long time for the little girl and her little tummy to wait. But she was so good! Kids all around us in pre-op were losing it left and right. But Lucy Lu was a good girl. What a tender mercy!
We got to walk all the way into the cath lab with her and then had to leave. Then we had to wait. They gave us a pager and told us there was a big comfy waiting room on the 3rd floor that we could hang out in if we wanted. We basically walked down the hall to the first chairs we came to and sat there almost the entire time. It was supposed to take 2 hours and ended up taking close to 3 hours. (I think because she was so dehydrated) They had a hard time getting her iv in. They tried 2 times in one hand, and another time in the other hand. They were supposed to go through her femoral artery in her leg. After unsuccessfully trying both her legs, they had to go through her carotid artery in her neck. The poor girl is covered in bruises. She has horrible bruises on both her legs, her neck, her hands and they also took some blood from her foot too.
Despite all that, she did great and they were able to balloon her valve. We were able to watch some of the video of the surgery.
Because of the late start, and complications we had to stay overnight. I was able to stay with her. We knew from her sedated echo that she doesn't come out of sedation well. She was pretty sleepy and out of it until about 2 am. I fed her anytime she woke up, and she was loving that! She had to stay on oxygen for quite a while because she was sleeping so deeply she was forgetting to breath. I spent a lot of the night rocking and reading. I am glad we didn't come home like we wanted too, because I couldn't have helped her oxygen at home.
Friday morning she woke up feeling and acting much more like herself!
She was pretty happy to see her Daddy when Wade got there, and even more happy when we were finally able to get rid of all the stinkin' cords!
Our friends that were watching the kids had to leave Friday morning, and we were so thankful that our sister in law had the day off work and could come up to help. We were welcomed home by a cute wall of pictures that Chandra had the kids make.
And has hard and as stressful as this week has been, we have seen miracles and blessings.
Tuesday morning before we took her for her appointment, Wade gave her a priesthood blessing. He blessed her that she would be fine, and have a healthy heart. When we heart her gradient was so high, it was very challenging to have faith that everything would still be alright. But I knew that she would. I always have known since we first heard about her heart that she would be fine. I have known, before we had Lucy, that she was supposed to be in our family. She's given us a couple scares, but no matter how short or long that time is, she is supposed to be here with us. I really was at peace throughout this crazy week.
When they took measurements of her heart before ballooning it, the gradient was actually 31. Thirty-one! The surgeon asked if she had been upset during her echo. She hadn't. He asked if she was getting sick, she isn't. He said those could give her a higher reading during the echo. The doctor couldn't tell us why she had a gradient of 107 Tuesday and 31 Thursday, but I believe that we had some little miracles involved. Her heart gradient is now 8. Which (if it stays that way) should just be similar to Gage and require minimal follow up.
At 4 months, during her sedated echo, the cardiologist told us she also had suprapulmonary valve stenosis. Which means the area right past her valve was smaller. This is harder part to fix, compared to just the valve and was a concern. This week, it was completely gone. They didn't see it Tuesday in the echo, and they didn't see it Thursday in the procedure. Gone. Blessing. Miracle. Call it what you want. But it's gone.
Our best friends from Washington have been here visiting all week. We have been counting down the days till they come for a visit basically since the day we drove out of Washington. When they scheduled Lucy's Tuesday appointment, I called Courtney and asked if she minded watching the whole brood for a couple hours. Of course, she didn't. She is as good as a second mom to them. But when we came home Tuesday, with a Thursday surgery scheduled, she didn't even bat an eye. Not many people want to babysit on their vacation. But Courtney and Doug went above and beyond. Who takes 6 kids (our 4, their 2) to Tracy Aviary, for the day, and ends it all with a trip to a buffet!? My kids love buffet restaurants. But my idea of fun is NOT taking 6 kids 9 and under to a buffet. It is chaos. But she said they all had a blast. And they checked it off Noah's list. (He made a list of things he wanted to do with them...going to a buffet was one of them!) It was a coincident that Doug and Courtney came to visit the week this all went down with Lucy. But it was such a blessing. Having other people take care of my kids is always such a stress to me. But I don't worry when they are with them.
I am so thankful for our attentive family physician who heard her heart murmur in the first place and followed up on it. I am thankful that if it truly were getting that sever that we caught it this month...before she starting crawling, or walking. We have our baby home with us. And after seeing other families at Primary Children's I am always thankful we can bring our baby home.
After such a crazy week that we were not expecting we are home now and happy. She is bruised all over, but doing great. We will have a follow up appointment in a month, hopefully things will be the same. Because it was a stretching balloon procedure there is a possibility it could go back. We are pretty confident she will be just fine.
We love our little Lucy.
Here's hoping May 23, 2014 will go unnoticed.
(I have all posts about heart murmurs tagged, as well as seizures. From my phone this doesn't come up, but from your computer you can click on the tag and read each post. If you want all that fun background and more!)
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