Dylan's Echo

Dylan had his Echo this afternoon.  It was hopefully his last sedated Echo.  I went into it wondering if they tried doing the Echo with him not sedated if it would work.  Then the nurse laid him on the exam table to get a quick measurement and he cried.  I decided then that it was good they were sedating him. 

He took longer than usual today to calm down after getting the IV for the sedation.  I think it must have bothered him where they had it more this time.  He even complained when they were giving him the medicine.  The nurse did check the site and it was in correctly, so it was just bothering him. 

After the Echo and time in recovery, we met with his cardiologist, who came in carrying a toy car to give Dylan (he hit the jackpot this time...came home with 3 cars, a ball, a new sippy cup and a blanket).  His doctor commented on how happy Dylan was after he went over the results of the Echo and listened to Dylan's heart(he really is getting better about interacting with adults.  He will actually talk to adults now and not cry if they touch him). 

The doctor told us that his pulmonary arteries are getting a little more narrow and so will need to go sometime next month to the cath lab and get that fixed.  Said the main problem with the narrowing is that if it isn't fixed, the vein has a tendency to not grow.  Getting it fixed in the cath lab is relatively simple.  They will take a catheter and go up through a vein in his leg to the narrow veins where they will balloon them open and, if necessary, use a stent to hold them open.  He said that generally it's an overnight stay.  (Not always, but best to plan on it being overnight.)  He obviously still has the leakiness, but his heart is still handling it well.  Russ asked him when we should plan on that needing to be fixed.  He said, "That's the million dollar question."  Went on to say that he would say that the average for it to be fixed would be early teens.  Some earlier, some later. 

After the cath we will talk with his doctor again to see when we need to take Dylan back for his next Echo.  The way he talked today, I assume he will have us come back in about a year. 

The Heart World

Dylan has an appointment coming up at the end of the month for an Echo cardiogram.  I'm sure those who have heart kids understand how even though things appear great from our end, there's always the worry that lingers in the background that this time will be the time they say that it looks like it's time for the next surgery, or that things aren't looking as good as they have in the past.  It's not a constant conscious worry, but as the time gets closer it creeps more and more to the forefront and in the quiet moments I find myself thinking about the appointment and wondering how it will go.  Mostly I think of how Dylan's cardiologist said at one appointment that he hopes to get him to 3 before he needs his next surgery and how he will be 3 this summer.  Then I will think of his last echo and how Dylan had the MRI after it because his pulmonary arteries looked like they were getting pretty narrow and his cardiologist said he wouldn't worry about it if he thought he would need the surgery any time soon and would just fix it with the surgery if he did. 

As I think about these things, I think of my ignorance of this whole heart world before Dylan was born.  I was aware that such a world existed.  I have family and friends who are part of the heart world.  I saw their worry and heartbreak and hope but it wasn't until I found myself living it that I realized that I really only saw a small part of it. 

I read on a blog (I wish I could remember whose at this point so I could give the proper credit) recently where the author wrote that her husband said that we live with fear and not in fear with our heart kids.  I totally get that.  I find that when my heart healthy kids are sick that I don't worry about them quite the same as I worry about Dylan when he gets sick.  I'm sure it's easy for others to "forget" that Dylan even has a problem with his heart because he is doing so well and seems so normal.  I think of it every time I help Dylan get dressed for the day and for bed and every time he gets in the bath.  I think of it every time he's sad or hurt and won't let anyone besides me help him and think of how eventually he will need to have more surgery and how hard it is going to be on him (and on me) when he will be in the hospital recovering and in pain.

I think of these things and then I think of how this heart world has really opened my eyes and my heart.  I think of all the women who were at the luncheon and how strong they all are.  I think of Intermountain Healing Hearts and what a great service the group provides in bringing together people who are going through the same life journey.  I know I've said it before, but as much as I wish Dylan didn't have a CHD, I am grateful for the blessings that have come into my life because of it.  A whole world of hope and strength and compassion mixed in with the worry and heartache.  I hope that I have become a better person because of it.

Heart Mom Luncheon

A little over a week ago Intermountain Healing Hearts held its second Heart Mom Luncheon.  Being on the governing board, I had some small part in helping with it this year.  The one last year was so good we knew we didn't want to even try to compete with it so we kept it simple.  Knowing that the biggest part of having the luncheon is to get together with women going through a similar life journey, we made sure to have part of it introductions where everyone could stand up and say who they are, where they live, and which type of CHD their child(ren) has.  We also had a video from pictures everyone sent in of their heart kids and glitter toes for those who wanted it.  Lunch was catered by Cafe Rio (thanks to a member of the group who works for their corporate offices we got a nice discount on the food). 

Each "Heart Mom" was allowed to bring one guest.  I brought my mom.  I know she couldn't hear most of what everyone said, but I'm glad she was there with me anyway.  I hope she enjoyed it as well as I did. 

Even though we didn't try to compete with last year's, I think it turned out every bit as good.  From what I could tell, everyone had a good time.  The introductions part was full of emotion as people described the issues for each child (I was the only one there whose child has truncus), especially for those whose children have passed away.  The parts of the video showing the pictures of those heart angels was also heart-wrenching.

For some reason my computer doesn't want to upload all of the pictures that I took at the luncheon, but I did manage to get these two.  They are mostly of the decorations for the event before people started to arrive.  I'm grateful that we have this group and glad that I was able to help out with the event this year. 

Rachel's 6 Month Check-up

I took Rachel this week for her 6 month check-up. She had been sick with RSV and a double ear infection earlier so it was kind of nice that her check-up was later in the month instead of closer to her birthday. Just nice to know that she was over it.

I had decided to keep Lys home from school that day because I also had a hair appointment and with gas prices being what they are, I really didn't feel like driving back and forth all day. Plus there was always the chance that the appointment would run late and I wouldn't be able to pick her up on time anyway. When I told the girls that Lys would be staying home because of Rachel's appointment they weren't thrilled. I didn't really expect them to be. But in talking with them, I happened to mention how Dylan is thrilled whenever someone else had a doctor appointment. They grinned and said that they know. When he has something they want, they often say, "If you don't give that to me you'll have to go to the doctor." I think it's funny that they would come up with saying something like that. Mean, but funny.

Anyway, Rachel's appointment went well. She's over her RSV (which I knew only because she wasn't coughing any more. She was always happy even being sick) and is a "picture of health." She didn't much like the nurses. Cried with them and getting weighed tried to hold onto me for dear life. Smiled and smiled at the doctor though.

She now weighs 17 pounds, 4 ounces and is 27 inches long. That puts her about the 75% for weight and 90% for height.  So far she's staying my biggest.   And she is a very happy baby. 

Her siblings all love her and almost fight over whose turn it is to hold her.  She will go to them and be happy but doesn't usually take long before she's reaching back to me.  She just really likes her mom. 

Thought I'd throw in two more pictures.  The first one is of Emma holding Rachel. The second is just showing her sitting up.

Performances

This month Jimmy performed in the 6th grade play. They did "Into the Woods."  Jimmy was one of two boys who played the role of the prince's steward in the performance.  Here he is in costume:

The kids worked hard to learn ttheir parts and did a pretty good job.  As usual, we were later in getting to the school than I hoped (same story with Emma's 3rd grade program, but I'll get to that) so had to sit in the back.  So the pictures we got weren't the best.  But sitting in the back has its advantages when one has to take a 2 year old to the bathroom in the middle of the show.  Jimmy was excited and nervous about the performance and only forgot one line, but I think that was more out of confusion on whose turn it was to speak.

Here's a picture of Jimmy on stage:

The next week it was Emma's turn.  The third grade put on a program about how people can make a difference.  Emma had been excited about the program and was often talking about for weeks before the program.  She quickly and easily memorized her line for it.  Unfortunately, my camera ran out of batteries so I wasn't able to take any good pictures.  This one I have posted is the best one I was able to get.  Emma is standing in the front row.  They all wore dark clothes because they used black lights for one song. 

As I said about Jimmy's play, sitting in the back sometimes has its advantages.  I had to take Dylan out a couple of times and Lys out once.  This time though I was right by the doors.  Made it that much easier to take them out.

After the program, my mom took the kids to get ice cream.  Since getting a new car, we were all able to go together.  Which was nice.  After going almost 6 months with not being able to fit the whole family in one car, it's still almost strange to think that we can all fit now.  Anyway, the kids had fun getting the ice cream.  Probably went a little overboard since it was a serve yourself kind of ice cream place where they charge by weight.  Amazingly, they ate almost all of it.

Happy (Belated) Birthday Jimmy!

Last week was Jimmy's 12th birthday.  Usually birthday parties bring a little bit of stress into my life.  Mostly in the part of figuring out what we are going to do for the parties.  This year Jimmy's party was a breeze on my side.  Jimmy did all the planning and made the invitations and passed them out.  He asked me if I could make a cake to look like an Xbox console.  I figured it sounded easy enough, but Rachel had been sick with RSV and wasn't often happy when I wasn't the one holding her.  Made for a kind of rushed job on the cake, so it wasn't as clean as I could have made it otherwise.  But all in all, I was happy how it turned out.  Jimmy said it wasn't as good as the turkey cake I made several years ago, but he was happy with it too.  I think this one probably tasted better than that turkey cake.  Just because I used a from scratch recipe instead of a boxed cake mix.

Jimmy had his party the day before his birthday and that night went to his grandparent's for a birthday sleepover.  He had told his friends that all he wanted was cash.  Even told my mom that instead of the usual candy box for birthdays that he wanted money instead.  With the money he got from his friends, his grandparents and us, he bought himself a digital camera and a small video camera and a tripod.  Not surprisingly, he informed me yesterday that he is now the historian in his scout troop.

After he came home from his birthday sleepover, I took him shopping and bought him a suit since he would be ordained a deacon the next day.  Still strange to think that I have a son in the Young Men's group now instead of Primary.

Anyway, here's a picture of his cake and one taken during his party.  Some of the candles on the cake were the kind where the flame is the same color as the candle, the rest were the trick candles.  Really was funny watching him with the trick candles.

Dylan's Famous!

Well, sort of.  Before CHD week, I sent an email to the county newspaper suggesting a story of IHH as part of CHD week.  I was kind of surprised when I got an email back asking if the group has members who live in the county as they mostly focus on county issues and people.  I emailed back saying that we do have several members in the county and that I also live in the county.  I received another email asking for a phone number to reach me for a story.  Several days passed and last Monday while I was up at Primary's with the table IHH had, the lady who had been emailing me called. Unfortunately, my cell phone was beeping at me because the battery was basically empty.  I asked her if I could call her back.  When I was leaving the hospital I plugged my phone in the car charger and sat in the parking stall and called her back.  Which might not have been the best idea since I kept unplugging it accidentally and reception in the parking isn't the greatest.  After losing connection toward the end of our conversation, I decided to drive to a better location for reception before calling her back.  She asked a few questions and I told her a little about my own experience with IHH and with having a child with a heart defect.  I later emailed her a few pictures of Dylan for them to use with the article. 

This past weekend's edition had the article. I was surprised how big they had the pictures.  I thought the article turned out well.  Her opening wasn't quite what I had said (she wrote that I call IHH "the best group no one wants to join."  I had actually said it was the best group people wish they didn't have to be a part of, but I guess that's close enough), but I was just glad that I didn't sound like as big of a dork as I felt when I had talked to her.  When I looked at the article online, about 250 people had looked at it.  Not too bad.

And yes, I am keeping a copy of the article to put in Dylan's baby book.  Assuming I ever actually get around to making his baby book.  Surely one of these days I'll do it.  Surely.