{Lucy's update}

Today Lucy had her yearly cardiology appointment and she totally rocked it!  We were both a little nervous going into this appointment.  She is so wigglily and doesn't really like strangers so we weren't sure how she would act.  You have to hold so still for the tests, it's not an easy task.  But one sucker, one stuffed animal bunny, the movie Tangled and holding her Daddy's hand did the trick.  She was a rock star baby and did fantastic! 

After the Echo and EKG we talked to the cardiologist and found out great news.  (We were also nervous about this because while she is growing and acting just fine...she was growing and developing fine at 6 months too, and it ended up we had to rush off to surgery).

But, like I said, we got great news!  She still has one small hole, one valve is still small and it leaks a small amount of blood backwards, all of which sounds bad to me...but apparently none of these are serious news!  She is now cleared for two more years! 

After her appointment she grabbed her new bunny and boots and decided it was time to break out of this place and find some well deserved french fries at the nearest drive thru. 

Way to go Baby Lucy.  We love you!

Your little heart is amazing!

~~

PS:  I have to say, day like today make me so grateful for so many things.  First, I am grateful we can walk out of Primary Children's holding our baby. That is a huge blessing.  I know this.

And I am so grateful for family and friends who help us.  Today it felt like it took a village/family/ward to raise our family.  One kid at the neighbors, one kid with my sister, another one with a neighbor who also was going to drop off and then pick up two kids after school.  I am so thankful for people who are amazing in my life.  It might not seem like a big deal, but it is.  Thank you!

(Click on the label "heart" if you want the background....or just want to blog stalk...or just want to see just how adorably chubby baby Lucy's cheeks used to be!)

{3 year cardiology}

Today Gage had his 3 year cardiology check up.

Gage was born with a heart murmur.  He and Lucy both have pulmonary vavle stenosis.  Gage also has pulmonary artery stenosis and was born with two other small holes that closed as he grew older.  His last appointment was the summer when he was seven and he was cleared for 3 more years.  Today was the big day.

First the echo:

Then the EKG:

And lots of gaming with his brother support team:

Then we got to talk with the cardiologist. 10 years and just a "few" moves later, we got into the same doctor he started with at Primary Children's when Gage was born! Lucy sees him too, and we really like him.  (Plus, he did his training in Arkansas (go hogs!), and has 17 kids!! Seriously. What a guy!)

Basically Gage's heart has pretty much stayed the same.  When Gage was a baby the gradient of his pulmonary valve measured 23.  Today it measured 23!  The exact same!  (Normal is 0, Lucy was 57 when she was born, then 107 when they did her surgery, you can read her posts by clicking the label "heart" at the end of the post or on the sidebar)

Today we found that Gage's pulmonary artery stenosis is pretty much gone.  Woo hoo!

But, the bad news is that they found something else today. Let me follow that statement by immediately saying, they found something else today, but not  something terribly wrong.  In a normal heart the aortic valve has 3 leaflets that open and close.  In a bicuspid aortic vavle the heart only has two leaflets and the third is fused together.  Gage's heart has a leaflet fused half way, so he has 2 1/2 leaflets.  It really isn't bad news, just different news.  The doctor believes he has probably had this his entire life, but we just couldn't get a good picture of it until today.  They got a really clear shot of it.  Probably because 1. Gage is older, so his heart is bigger and 2. He is older and can lay still much better than he could have even 3 years ago.  There isn't too much they do for this condition, so we'll just keep an eye on it while he is growing, like the pulmonary vavle.

So in the end, he did great and got cleared for another 3 years.

Once again I felt pretty blessed to be walking out of the hospital with my kids in  toe.  Because things can always be better.  But they could always be much worse too.

I'll take a 3 year check up and count my blessings.

Lucy's Heart

This last week, Lucy had her 6 month follow up appointment for her heart.

I was a little hesitant how she would behave for the echo.  I didn't want her to be put to sleep, but was really unsure of how to get her to lay so still for so long awake..  Luckily we were totally blessed and she did fantastic!  The tech was fast and Lucy just laid so still watching what was going on.

Then on to the good stuff...crinkly tissue paper in the exam room!

Lucy got great news!  Her heart is doing just fine.  She still has a couple holes but her gradient level is low and our cardiologist said she shouldn't have any more problems.  She doesn't have to be seen again for a year!

~~

Sidenote:  Our cardiologist moved since our last appointment so we had to switch.  We switched to the one Gage used to see when he was a baby.  We remembered that he had 10 kids - which made such a big impression on us when we were overwhelmed with our one, Gage.  So we told him he had seen our older son before and asked how his 10 kids were doing....he replied that he has 17 kids now!  Just when we thought we were halfway caught up! hahahaha!  I can't imagine 17...or even 10! Holy smokes!

{8 Months}

Little Lucy Lu is 8 months old!

(Actually she is almost 9, I am just behind)

She is a girl (trying) to be on the move.  She is our little bum scooter!  She will scoot from one side of the room to the other.  She still can't crawl, but I think she will pretty soon.  We like to say she's like a snail, if you sit and watch her, you might never see her move, but if you look away and look back, she's moved!  She wants to crawl and get faster because she gets so frustrated she can't keep up with everyone else.  It's just a matter of days now!

She is so funny and won't eat her baby food.  She loves to play with solid foods, but doesn't have the coordination to make much of it to her mouth yet.  She just looks at us with a horrible expression when we sit her down to eat every day.  We want her to eat what?  I am so mean - bananas, applesauce, baby puffs....yep, I am one mean mom.  It's gross stuff.

Lucy had her follow up appointment with the cardiologist this past month.  She passed with flying colors.  You can still hear her murmur, but you can't feel it anymore.  She is good until December!  Woo hoo!

Lucy still loves to play with any musical toys.  She loves the maracas and bells.  She loves to pound on the toy piano and if you play music she will bounce up and down dancing.  It's such a fun stage.

She loves to clap and wave.  

She is so attached to me right now.  Sometimes she doesn't even let me go out of her site without screaming.  She loves to play the "pass the baby" game.  When Wade is holding her she will lean to me, then I will take her and she will look at Wade, smile and then lean back to him.  We then "pass the baby" a couple times.  She thinks she is so cleaver.

She also loves to play the drop it game with the big kids.  They think it's pretty funny she will drop things on purpose just to have them pick them up for her.  

She has us all wrapped around her baby fingers.

We love our little Lucy May.

May 23. {Hearts & More}

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!)

Lucy's Heart

Finally after lots of waiting and rescheduling, Thursday this week Lucy had her appointment for a sedated echo on her heart.

Honestly, going into this I was more nervous about the fact that she couldn't eat for a couple hours before the test.  I wasn't sure how she would do with that.  I couldn't feed her after 5:30 that morning, and she usually eats at 7, so I was kinda nervous for her.  But she ended up being really good and not too grumpy till the very end.

Here we are right before the IV team came into the room.

She was such a trooper!  I couldn't believe how good she was for the IV team.  They had a therapist come with them and he had a baby app on his ipad that she watched the whole time.  She was mesmerized!   We downloaded the app too. (Baby View is the app)  It's just black, white, and red images, perfect for babies.  She really loves the one with little lady bugs crawling around the screen.  She didn't even flinch when they stuck her with a needle!

Some babies they can give just enough medicine to relax, but Lucy did not like the "in between" state at all.  She was pretty frustrated with it, and they had to give her extra medicine to make sure she was all the way out.

Sleeping away in post-op.

We got the results that day.  It wasn't good new, or really bad news.

Lucy has pulmonary valve stenosis.   We knew this information already. In January they measured the pressure going through that valve and it was a middle ground number - not too good, not too bad.  But she was upset, so her heart was working a little harder, so that was the reason we did the sedated echo.  With the sedated echo the number was a few points higher, but still middle ground.  So our cardiologist said we should do an EKG.

Good thing we downloaded that lady bug app, Lucy was now awake and we needed her to lay still again.  

After the EKG, we went back to talk to the cardiologist.

The muscle wall of her right ventricle has thickened a little bit from January and that isn't great news.  It means that her little heart is working harder than it should.  The right ventricle should have low pressure, but she has high pressure.

We got two choices.  Some kids do out grow this condition.  

So we could wait and come back in two months.

Or we could get an appointment with the cath lab and have a procedure to try and balloon the suprapulmonary.

Our cardiologist couldn't really say either way. So after a lot of questions, we decided to wait and have another echo done in 2 months.  If it's still bad then we can go to the cath lab.

I am so glad Wade was there with me.  I can never think of any questions to ask till I get home, but he started spouting off questions left and right.   I guess sometimes all that medical background can come in handy;)

Lucy is growing and acting normal, and our cardiologist gave us lots of signs and symptoms to watch for.  She has never had any of these.

I want to think that she will out grow it, since Gage has a similar murmur and we've never had to do anything for him but have it checked out every couple years.  It was also hard to make the decision to send her back in for another procedure, even if it was in a couple weeks,  after watching her be put to sleep that morning.

So we are kind in the same boat as before.  

Waiting for another couple months.  

And hoping she grows and her heart  and little body can fix itself.

~~

hopefully I described and explained things right.  I have to look at the diagram they give me and then it really makes sense, or have Wade explain it.  Sorry if I didn't do a great job.  Ask Wade if you really want to know.

Lucy's update

Another post about the pint size blog hog.

Last Friday I took Lucy to the cardiologist at Primary Children's to check out the heart murmur she was born with.  While she is growing and thriving, and deep down I wasn't too concerned, it still made for an emotional stressful day.

Lucy was super good and cute during her EKG.  She laid really still and kept lifting her arms up so show us her muscles.  As if she wanted to say - Look at me!  I am one tough girl!   

Look at all those darn cords!

The resident and cardiologist had a look at the EKG, took a listen and talked to me we decided she needed an echo cardiogram too.  She wasn't too cute during that test.  She was tired and she sleeps best when she is wrapped up tight in her blankets, but she couldn't be wrapped up and have the test done.  The only way they could get her to lay still was to give her sugar water on a binkie.  She doesn't even like a binkie!  And she doesn't like strangers.   One fellow had to hold her with the binkie feeding her sugar water while the other fellow did the test.  I'll let you just imagine how happy all this made her.  

In the end the results showed that she has the same exact heart murmur as Gage.  Pulmonary Valve Stenosis.

The cardiologist was a little concerned about the stenosis though and since Lucy didn't really corporate to well during the echo he wants us to come back next month for a sedated echo.

Boo.

I am not excited about this, but I understand he can get a better look at her heart and we will know more information this way. He suggests that (similar to what we did with Gage) we follow her pretty close this year while she is growing so much. Then, if everything is working correctly we can spread out the visits.

(Gage currently goes 3 years between visits. But at his last appointment it was brought up they would want closer visits during his teenage years because it's another time frame in which the body goes through growth spurts. It makes sense, you grow a ton as a baby, level out, then grow a ton as a teenager, then level out).

So we know some information and it's something that we were already familiar with. We will know more on the 19. But honestly, I am pretty nervous about the sedation. Noah was sedated once, but that whole experience was like the worst day ever. I am positive this one will be a better experience, but still. Little Lucy. She's been keeping me up at night since before she was even born.  

I suppose those chubby little cheeks are worth all the trouble. ;)

Here's hoping for good news next month!

Lucy Lu

Another post about Lucy.

And since she is a hog of my Instagram account (wadeanddebbi), 

she might as well be a blog hog too.

Sidebar: I do have good intentions of blogging about the other kids this week and the goals we have all made for this year.

(Good intentions does not mean I will get it done, right?)

Back to Princess Lu-Lu and a couple cute pictures from our phones.
(nickname courtesy Wade)

She had her 2 month appointment this morning.

She is 10 pounds on the dot.  I think maybe 3 pounds are in her cheeks.

The tiny little pint is in the 25% for weight.

She was 22 inches tall, putting her in the 25% for height too.

And her head was 14.2, which put her in the 3rd percentile.  She might have a small head, but her hair makes up for it, right?

Wade took this and he thought he was being so funny.  Like mother, like daughter?

Avery once approached me while I was nursing Lucy and said, 

"Mom, is that were the coke comes from?"

HA!  

The Dr. did notice that he can still hear her heart murmur.  She had one when she was born and we were all pretty sure it go away with time, but since he can still hear it now we agreed we better get it checked out.  So off we go Friday to Primary Children's for a cardiology appointment.  I would guess it's probably something very similar to Gage's heart murmur (background posts - here, here) and nothing too serious.  

(Avery has an innocent one too, that you can only really hear when you listen really well when she has a fever, she's been checked out and is fine)

Wade is already stressed about it.  I mentioned it to him when he came home for lunch and he said, "Why can't we just have a normal healthy child!"

I dissagree.  I tuck all five of them in bed each night and count my blessings they are at home with me and not in a hospital somewhere.  We have our challenges, like everyone does.  I think sometimes our problems are easier to find than they were 10, 20 years ago.  And that is a blessing.  I would rather know, than not know.  I wonder how many of us walk around with heart murmurs of health problems we don't know about every single day.  And saying our children are "not healthy" is always put into perspective for me when I visit Primary Children's and I am able to go home with them the same day.  I remember taking Gage (to the same department) 8 years ago for a check up and meeting a woman in the hall.  She then showed me pictures of her baby and told me about how they had lived there...THERE, in the hospital for the past couple months since the baby was born.  There are families who live there.  When we lived at the U our ward was in charge of helping with sacrament meetings held there every once in a while.  I went one time with Wade and one time was all my heart could handle.

I can count my blessings.

So Friday morning (bright and early) off we go.  

I feel pretty good about our appointment.  

Just look at those chubby little cheeks and all that crazy hair,

No matter what we hear, I think she is perfect.

He Passed!

Some of you might know or remember that Gage was born with a few heart murmurs.  A couple of them have fixed themselves, but he still has pulmonary valve stenosis and left pulmonary artery stenosis.  Relatively speaking, these aren't that bad and I always count my blessings because things can always be worse.

When he was a little baby they checked it quite often, then we moved to once a year check ups.  A few years ago he was cleared for every two years.

Today was that lucky day.

Gage told us he wasn't nervous at all and that he was so excited to go! I could tell he was a little big nervous though, because he was giggling a lot, being a little bit jumpy and (the best) holding my hand!  He did admit after it was done that his tummy didn't have butterflies anymore.

First up, his EKG:

Then, he got to play games and wait for the Dr.  I have to insert that we love our cardiologist here.  He trained in Iowa and knows a lot of the same people that we know!  What a small world!

Then time for this sonogram..or the best part because you get to lay down in a dark room and watch a movie!  Gage selected Scooby-Doo. (Although in my picture he is looking out the window, not at the movie?!)

Once again, he did awesome!

Then more games...and a final talk with the Dr.

We had great news, he is doing great (no surprise!) and that if nothing else, the valve stenosis is almost getting better.  Gage got a high five for that one and got cleared for 3 years this time!  YAY!

Looks like tonight we will be enjoying pizza at the park for dinner.  Gage's choice.

The Bravest Boy I Know

Gage had his annual visit to the cardiologist today and he is one of the most brave boys I know! He went without us for his x-ray and the technitian said he did very well and followed all the directions. He then sat so still for both the echo-cardiogram and the EKG. We found out that his patent foramen ovale (the hole between the two atriums) closed. He still has pulmonary valve stenosis and left pulmonary artery stenosis.