{Eli}

Monday morning Eli woke up late and was really sleepy.  I got the other kids off to school, ran three miles and he was still super sleepy.  He didn't want to get dressed, he didn't want to do much.  This is so out of character for him.  He is usually up first and ready for school before the other kids leave.  So I let him stay home.  Maybe he just needed some extra rest from the weekend.

Around 11, he threw up once.  It was mostly spit, but then I figured he was coming down with some sort of stomach bug.  Around 12:30 he threw up again.  He didn't have a fever or any other symptoms.  The doctor and staff at the first hospital we went to thought he must be getting sick and that brought on the seizure.  But looking back I don't think that was the case at all. (more on that later)

He wanted to watch netflix and lay in bed.  I sat in the tv room next to his bedroom and wrote a couple blog posts and scheduled some posts for My Reading Spot.  I could see him from where I was sitting.

Around 1:30 he made a sound like a cough. I thought maybe he had thrown up again so I asked from my seat if he was ok.  He didn't reply so I went in to check on him and he had thrown up some spit and was not responding.  He was seizing.

I yelled for Wade who came running down.  He told me later he was upstairs helping the big kids get started on their homework when he heard me yell and he had the though - either Eli has thrown up everywhere or he was having a seizure.  He wasn't sure why he thought that - but he was.

Wade took over and told me immediately to call 911.  We've never called 911 that fast for a seizure.  And while he doesn't have a history of one, I knew our other kids have had ones that last a super long time.  Wade said he wasn't going to mess around.  I talked to 911 and told the kids what was going on.  Seizures seem to last forever when you are watching them.  Eli was not stopping.  He didn't stop until EMS got here, gave him a nasal treatment of Midazolam.  (We have this emergency medication for Noah, but it didn't even cross my mind to give it to Eli, but we wouldn’t have known the dose anyway).

EMS took vitals but decided to take him to the hospital because by now the seizure had lasted about 10, maybe 15 minutes and it wasn't stopping.  It finally calmed down and stopped when we placed in him the ambulance.  He lost continence and his body was still and his eyes were shaking to the left side.  It was such a long time.  

I left Gage in charge of all the kids and rode in the ambulance with Eli.  Wade came in the car and I called his Dad to tell him what was going on and that the kids were at home by themselves, and a little freaked out.

At the hospital they ran some tests, blood work, urine sample, did a CAT scan.  They gave him some IV fluids.  I'm sure that is all you do for a seizure until the person wakes up.  I've been there before. There isn't much you can do but observe and wait. But he wasn't waking up.  Maybe about 2 hours later I noticed he was doing something funny with his mouth again and we noticed he wasn't responding again. His eyes were shaking to the left side again.  Wade ran out and told the nurse at the station and they told us they would get the Doctor.  I realize that a seizure feels like forever, but it really felt like forever for them to do anything.  We had to ask a second time if anyone was going to come help us. 

They weren't busy. I believe we were the only patients in the ED. (Maybe one other patient?)  We had made the choice to go to the brand new hospital closer to our house. It was a nice facility but with that you also get growing pains.  Later that day Wade told me that we very well could have been the first child they have ever seen with seizures.  I'm sure they were all figuring it out.  But we needed to give him the emergency drugs.  I feel like I typically am a person who takes the side of the doctor.  I always give them the benefit of the doubt, I know they are human, they try their best, they work hard and make fast decisions and are just doing the best they can.  I am married to one.  But I have never stood in an emergency room watching my child seize and felt so alone.  

If I am in the emergency department and my child is seizing, alone is NOT a feeling I should have.

It continued on for 10-15 minutes. In the mean-time his left side, particularly his hand was getting worse and worse. He also lost continence again.  They had to give him 2 doses of Ativan and a dose of Keppra.  Finally...if you've ever witnessed a seizure, you know it seems like an eternity - finally he stopped and was just sleeping.

The staff there kept complimenting us for keeping it all together.  I do NOT have it all together.  Trust me.  But I've seen Noah and Avery seize.  I've seen my own sister seize.  It's NEVER fun to witness a seizure.  It's even worse when it's your kid.  But I can cry about it later.  I can't lose it in the moment.  If I cry too, then who will take care of them?  I don't have it all together.  I cried a lot that day.  Trust me.  One of the nurses randomly gave me a hug when we left and I lost it.

The ED doctor then put together the orders to transfer us to Primary Children's hospital.  As much as I didn't want to do this, Wade said it was a good thing.  If she was not comfortable with us there, then we needed to be in the best place for Eli.  And that is Primary Children's.

The same EMS guys came back and transferred us to Primary's by ambulance.  They seemed a little disappointed to see us when they showed up.  They told us they hoped that we had gone home. We had too.

At this point Wade went home.  He took care of the kids, our neighbor brought in dinner and he put them to bed.

Eli got checked in to the ED at Primary Children's...where everyone helped me and checked on me so often.  They said all I had to do is yell if he had another seizure and they would all come running.  I saw so many doctors, nurses and staff I was hardly ever alone.  I felt so much better being there.

I always joke that Primary Children's is like a black hole, or a casino. If you’ve ever spent anytime there you probably understand.  Not many windows, not many clocks, they run on their own time table, you never know what time it is, or what time you will leave.  I didn't have any service on my phone.  Not one bit. My phone said “NO SERVICE” I had to use the hospital phone to call Wade to tell him we made it.  I didn't have anything but my purse, my phone (which was useless) and some extra pants for Eli.  So I sat.  I thought about writing some blog posts out in the notes app on my phone, but I couldn't wrap my head around anything.  I looked at the kindle app on my phone, but didn't have anything downloaded. I don't even have any good games on my phone, ask the kids. The only thing that would work was my scriptures.  So I read those. And I watched Eli sleep.

After a couple hours we were transferred to the Rapid Treatment Unit for the night.  And when the CNA checked me into the room she let me know I had the only room on the wing that had phone service!  I could have hugged her.  Hallelujah!  I had to sit right next to the window to get it, but it was better than nothing.

Wade came up after getting the kids to bed and brought me dinner and a bag full of essentials...clothes, toothbrush, and DIET COKE.  The nurses all agreed he is the best husband ever for bringing me a bag full of cans of diet coke.  He hung out with me until around 11.  Eli was still just sleeping away.  He did develop a fever in the evening once we got to Primary's.  This happened once with Noah too, a fever AFTER the seizure.  One neurologist in Washington explained it to us that that was common because the body is fighting back after the seizure, it's recovering.  I don’t' think Eli was getting sick with any flu or stomach bug.  He had a small fever that night for a couple hours but other than that he has shown no signs of being sick.

I think he was trying to wake up because throughout the night he would randomly sit up (even though his eyes were still closed) and then face plant into the side of the bed or whereever he would land.  They had padded the bedrails for him, which I was so thankful for.  I didn't sleep much because I tried to listen for him all night and would try to catch him and help him lay back down.  Around 4:30 the nurse came in and was taking his vitals and he woke up wondering where he was and what was going on.  He really wanted that IV out of his hand!

We spent from 4:30 on awake.  He ate some crackers and juice.  We watched some movies and the Disney channel.  He still was pretty uncoordinated.  For example he wanted to get out of his bed and walk down the hall to see the movies.  But when he got out of bed he walked right into a wall and looked at it like “Where did that wall come from” He was really hungry and couldn’t wait to order breakfast.  He ordered eggs, bacon, and 5 pancakes.  He ate almost every single bit of it all.  Then he had chocolate milk and juice and hot chocolate.  He also ate half a bagel with cream cheese from the snack cart.  I totally DON’T THINK he had the stomach bug or flu.  No one ever wakes up less than 12 hours from a stomach bug and eats all that food.  When we got home from the hospital he ate lunch and then 3 pieces of pizza for dinner! One of my best friends brought by donuts today and he has ate 3 so far – and is just eating so much!

In addition to that, I just don't have a gut feeling it was the flu or a big that caused this.  After reading though some of my older blog posts everything is so similar to Noah's story.  Noah had a prolonged seizure right after throwing up in his bed once.  I remember it wasn't really food throw up either, if that makes sense.  It was mostly spit.  A nurse yesterday said it could be the brain, the seizure causing him to throw up.  Also, Noah was 5 years old and 4 months when he started having them without a fever.  Eli is 5 years old and 3 months.

They did an EEG test which didn’t show much.  The neurology team said it shows some slowing in one part, but nothing major.  Noah’s EEG’s have always been inconclusive.  I would bet Eli’s are really similar.  Noah’s seizures were long in time like Eli’s and they were very similar in the way they looked too.  Noah was 5 when he started having them without a fever too.  The only difference is Noah had febrile seizures starting at 12 months.  Eli has NEVER had a problem with any seizures.  We joke that he was our little surprise baby – but the surprise baby that came with no health problems at all.

(they gave him play dough that he got to take home - he had such a good time playing with that)

By the end of the morning we were released with orders to start taking Keepra daily.  I am completely fine with this plan. I wasn’t going to leave the hospital until they gave me prescription for it anyway.  When Noah started having seizures similar to this we waited.  We didn’t want to start daily medications.  He had a couple ones a couple months apart before we realized that he did need daily medication.  We were slow to start it.  But he took it for 2 (almost 2 1/2 years) and was seizure free.  Almost a year ago we weened him off and he has done great.  Because of that the team of neurologist and I all agreed that this would be a good action plan for Eli too.

He will follow up in the next couple days with Noah’s neurologist to confirm this plan.

Because the seizure was pretty much on the left side of his body and he had so much medication he didn’t have the best coordination on Tuesday.  It is improving but he still wobbles a little bit walking.  He fell off the couch Tuesday afternoon and then jumped up and yelled ‘I’m okay mom!’  

I am a big believer that no matter how bad your day is that there is good in every single day.  If you look you can always find the Hand of God. 

This happened on Monday.  Wade’s office is closed on Monday and he was home.  This happened just 20 minutes after the big kids came home from school.  They are big enough and responsible enough to take over and watch Lucy.  Gage really did such a great job.  He later told Wade that night that Lucy was having a hard time during the afternoon and he couldn’t stop her from crying.  So he went outside and got some snow in a bowl and she played with that at the table for a long time.  He was such a great brother to step up and take care of everyone, even though he was worried and scared for Eli too.  That’s a lot to ask, but he did a good job. I am thankful that I didn’t go upstairs to talk to the kid after school on Monday. I had the thought to go talk to them and welcome them home, but I also had the thought that I needed to stay downstairs with Eli.

I am thankful for modern medicine. I am thankful this isn't our first time dealing with this.  It doesn't get easier and it's espcially hard this time because Eli's never had any problems. But I am thankful I have a prior knowlege to what is going on and how to handle this. I am thankful for the love and support we have felt.  Eli has been spoiled since being home.  He has had so many people ask about him and brought by treats, toys and balloons!  He says this is like his birthday!  He is so spoiled!  A friend dropped off a 12 pack of diet coke on my porch and it made me cry!  

This completely caught us off guard.  But I have felt prayers from family and friends all across the country and and I know that has strengthen us and helped us get through this.  Eli is home and will get to stay home with me for the week.  No doctors told me that, I just am not sure I want to let him out of my sight for a while.  He can be my little buddy while I watch him and see how he adjusts to this medication.  

(just a couple hours after being home I went to change laundry and came back and couldn't find him on the couch or anywhere - he was sitting at the table drawing this picture of Eli and Mom - holding hands. Since being in school he usually draws pictures of himself and Mrs. Gasser holding hands, so I'm glad to see I'm back in his life again.;)

I am so thankful that since he woke up his little funny little personality and happy temperament have shined through.  When the hospital employee gave us the choices from the snack cart Eli told her he wanted a bagel and hot chocolate.  Then he paused and said (with a funny sneaky little grin on his face) that he wanted a bagel and coffee.  Then he bust out laughing and said “I don’t even know what coffee is mom!”

(we don’t drink coffee for those who don’t know that)

Funny little guy.

We are so thankful for him and love him tons.


(if you want to read more you can click on the seizures label at the bottom of this post, or on the sidebar.  I'm not sure that shows up in the mobile view, but it will in normal web view.  I always need a tissue (or two) when I read through these posts)

{December}

It goes without saying - December is always a busy month.  This month flew by, I was a little sad we didn't get to everything on our Christmas to-do list, but it wasn't for lack of trying - we still managed to stay super busy.

Here is the monthly review post:

I took the older three kids to the ward Christmas party.  Eli and Lucy stayed home with Wade, we had so many different coughs/colds/sniffles/fevers going around our family/school/church this month.  They were actually ok the day of the party, but they aren't as good as washing their hands as the older ones and you never know what everyone else is bringing to the party too....I sound like a germ-a-phobe, but with Noah going off his meds I really wished we could lock ourselves in our house for a month or two until everything passed. 

I made a bazillion of these tiny charm hand outs for a Relief Society special Christmas lesson.  Ok...maybe 120, not a bazillion.  But once my hand started to cramp, it felt like a lot more than 120.

I am so thankful for Relief Society though it gives me an opportunity to grow, to serve and to be stretched in a good way...the program was good and we have such talented sisters in our ward.

My favorite thing to do in December - get up early when the house is super quiet and read by the Christmas tree.

I mentioned it before, but December was the month....we took Noah off his meds!  It was such a hard thing to decide to do, but we have to try it sometime. If we did it in the summer we would have to follow him around at the pool since he wouldn't be allowed to swim by himself...so we decided to taper him this month so he would be completely off it during Christmas break, when he is home with us all the time.  It's been 3 weeks Keppra free now and we are still going strong!

Avery had her first dance recital this month.  She is in a little dance/gymnastics combo class that meets once a week.  It's 3-5 year olds so she is one of the oldest girls.  She has such a fun time with her friends and loves it.  I apparently really need to figure out how to curl her hair.  I could never be a dance mom.

Gage had his school choir concert. (he's on the front row in red) It was amazing.  Seriously, such a great program considering these are elementary kids.  They have to go to school at 7:30 in the morning on choir days.  Talk about sacrifice!

We saw Santa...and a couple Star Wars guys at Walmart one Saturday.  

Eli thought this was AWESOME.

We held our first annual office Christmas party.  Don't laugh, it's a small party.  We have one awesome employee.  We couldn't do anything without her.  She is priceless to us.  And it might sound cheesy, but she really is an answer to our prayers, because we were praying and praying about finding the right employee.  Susan was my visiting teacher during our challenging year, and at the time and I had no idea she as an RN, and looking for a job using her medical background.  Then I told her we decided to open a practice and everything fell into place.   Who knew if you did your visiting teaching it would lead you to a job or an employee?  Heavenly Father has a hand in everything, I know this.  I can't say enough good things about her.

We hope to have many, many more office parties with these great people!

Our favorite thing to do during the month is to drive around a look at Christmas lights.  We found some really great displays this year. One house had a display that played the BYU fight song and the lights turned blue.  Another one we found had 12 million lights and such a great display to music.

Our good friend Santa Bear came to visit. He is our version of Elf on a Shelf.

He would occasionally bring us treats to share and move around.  Sometimes he would get into trouble.

And every year this sneaky bear decorates the tree with underwear and we always find him wearing some.  Silly bear.  

Lucy wearing my glasses.

The kids got out Wade's old record player one night and listened to stories on record by the Christmas tree.

The kids Christmas-sing at school was fun...and crowded.  Noah made silly-funny faces like he was an opera singer the entire time.  What a nut!

We made gingerbread houses with our cousin Charlotte.

And another sick little bug.  Poor Lucy.  I hate fevers.  I know some people don't worry about fevers, some people send kids out to activities and school with fevers.  But 2 of the kids have had numerous febrile seizures from fevers.  We don't mess with fevers at this house.

We had a Christmas party on the 23 with my sister's family.  We ate scones and chili and played the candy bar game and had the coke challenge.  Eli drank every coke, wrote some random numbers down on his paper and then rolled around on the ground saying his tummy hurt.

Lucy was feeling good enough to join the candy bar game...by eating candy and watching Bubble Guppies.

Christmas Eve was a packed day...we did Santa cookies, took naps, got a run in, did some cooking, did some grocery shopping and then headed to the Christiansen Christmas Party.

Chandra won the coke challenge at the Christiansen party.  She and Shamae tied and we had a tie breaker cup - they had to decide what it was without any choices.  She guess Pepsi for the win.

Avery decided the white elephant game was a pooper this year.

But Lucy thought it might be a good idea to keep around....

Then presents from grandpa...jammies for everyone!

And then Eli crashed on the floor so I decided to take all the kids home.  Besides, it was 10:30 and Santa was on his way!

Christmas day was a relaxing day, but my sister and I decided we still needed a "morning after" breakfast since we survived Christmas.

One of Wade's favorite mission companions and his family were in town and they stopped by for a visit.  It was so great to see them.  There are 12 kids between our families and everyone got along great.  It was fun to catch up and hear some funny mission stories about Wade.

And last, but not least, Lucy got this funny toy in her stocking.  

She thinks it's a good idea to take it to bed with her every night.

Crazy kids.

We are spending our last day of 2014 relaxing at home and taking naps, and helping some best friends move in....all while gearing up for the big New Year's Eve- AKA-silly string party of the year.

We are looking forward to 2015.

It's going to be a great one!

{Noah's two year appointment}

This May marked 2 years since Noah had his last seizure.  He has been on daily medication since then.  He is always very awesome and takes it without complaining. He says it tastes really gross so we have it flavored and in the beginning he used to pick a different flavor every month, but after being stuck with some pretty nasty flavors for a whole month (like banana) the last year he has just stuck to a couple of his favorite flavors.  I am always thankful he takes it every day without complaints.  He even reminds me if we forget.

At 2 years we were supposed to reevaluate with the possibility to go off meds.  I had mixed feelings about it, if we went off he could have another seizure.   But he wouldn't have to take daily medication.  If he stayed on meds I had a little reassurance every day. Yes, he could have another seizure, even with the medicine, but when he had the last one we gave him diazepam to stop the seizure and it didn't work.  The neurologist believed that with keppra in his system as a base, if he had another one and it didn't stop, the diazepam would work.  Luckily, I have never had to figure that out.  

So anyway, I was just mixed.  I finally decided the best thing to do was to see what the doctors said, and to trust them.  The worst that would happen is he would go off the medicine, have another seizure and then we would put him back on.

A couple weeks ago we took Noah to his appointment.  He doesn't actually see a neurologist.  We did in Washington, but since being refered here, he sees a great nurse practitioner at Primary Children's Neurology department.  We really love her. 

He did a great job at the appointment.  He is pointing to the hippocampus, which his cousin Ben (and Keppra taking buddy) had taken out a couple years ago.  

(link to blog here.  Wow, Ben sure has grown up since then!)

Anyway, the nurse practitioner said that we should do an EEG.  If it has normal results then we can taper him off the medicine.  If it doesn't, then we'll go from there.  She was really concerned about our family history. (my sister and my nephew have epilepsy, avery's had febrile seizures too)  She said that we should be all tapered off by the time school starts, or stay on by then.  She didn't want Noah to be in the middle of the transition when school started.  She also said if we tapered him off we could NOT let him go off with his friends at the swimming pool anymore.  We would need to follow him around.  He wasn't too crazy about that idea.

So, this week Noah had his EEG.  He kinda looks forward to this test, because he has to stay up till 10pm and then wake up at 4am.  Which means he can play video games with Dad until 10!  He was pretty happy about that part.

But then the 4am came pretty quickly and he wasn't too happy about getting up.  I suggested that we go get breakfast at McDonalds or go look at Legos at walmart, but he just wanted to watch Harry Potter Movies.  So that is what we did.  He couldn't have caffeine, or sugar.  But that didn't apply to me ....I had plenty of Diet Coke that day.  Plenty.

Wade actually took him to the appointment this time.  I had to work at the office.  Plus Wade pulled the card that I always have got to ride in the ambulance with Noah and he has to follow in the car.  He had a point.  I tried to let my control freak personality go for the day and Wade took him to the appointment.

  Wade said he was really pretty tired.  And he was acting pretty goofy, which means he was nervous.  But the technician complimented him on what a well behaved boy he was.

  

His least favorite part of the test, blowing on the pin wheel for 3 minutes.  Plus they give you that warm hospital blanket, but you can't fall asleep yet.  Poor guy.

So, yesterday we were able to call and get the results.

Inconclusive.

This is disappointing to us, but not really surprising.  Every other EEG he has had gets inconclusive results.  This time he showed some sensitivity to the light test and in the frontal lobe.  (which reading back today, is different than some of his other ones...I will need to have Wade read through all Noah's medical files and check) Because of family history, and this result, we get to stay on meds for now.  Noah is going to be referred to a different neurologist, this time in Provo, for more information and another opinion.  This is 3-4 months out.

Darn it, right?  

Not exactly what we were hoping for but it does take away a lot of my worry.  

And I like remind Wade anytime we take any of the kids to Primary Childrens: we take them home the same day (or pretty close).  Our kids come home.  

Some kids do not.  

And we are blessed to live in a time where we have medicine (and flavors!) that can help.

So that's where we are at.

the end.

~~~

(if you don't know the whole history, and want to know, you can click on the label and see all the fun details.  Labels don't show up on my mobile version, but you can always change to web version, find the label, click on it and read all your want)

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!)