We have a Date!

The hospital called with a surgery date.  It's going to be Tue. May 13th.  I was pretty disappointed at first because Bryce's Mom was going to leave on the 15th.  It turns out that she is able to extend her flight for free.  We are so grateful she'll be able to help out and be here for a week longer than expected.

What a great day! We planted a seed experiment, threw raw eggs off the porch with different paddings to see if they'd break, lots of reading and even fit in a fast field trip to The Ladybug Nursery.  The kids had worked hard on a coloring contest before the "heart" weekend and really wanted their strawberry plant prize.  It was a quick, in-n-out trip at a low traffic (low germ) time but was nice to get out for a minute.  We planted them as soon as we got home!  I'm trying to make the days as normal as possible.  I think Elina is embarrassed with all the attention she is getting and does not want to talk about the surgery at all.  I'm sure she'll have more questions as it gets closer.  We did talk about painting little hearts on her nails for the surgery.  She was pretty excited about that!
Tomorrow her writing/art project is going to be to draw and write a bunch of thank you notes!  We have definitely felt so much support from everyone near and far!
Also, the hospital called and took a few of our preferred dates and will coordinate with the surgeons.  We'll hopefully have the exact date by the end of the week!

This note describes Elina's Sunday & Monday.  I was on the phone a ton & trying to figure out medical stuff so the kids were left to themselves & Wild Kratts (I know...so not me :) If you can't read it, it says,  "I'm Bored! I'm really really (seriously) bored! I'm really, really, really, really, really, really, really, really bored!!!!!!

Elina had a much better day and didn't even mention the "B" word once (Bored). I wasn't as busy and we even had "school". I asked each of the kids to come up with a project with an Easter theme.  Elina wrote out a list of math problems and taught the boys how to count marshmallows into plastic Easter eggs. Later, two different visitors from her class stopped in & brought some great activities/gifts/cards/candy. She is such a sweetheart and immediately shared with her brothers. The only neg. experience was when I tried to put the oxygen nose piece on her. She cried, "It's going to make me look old. Like I'm 25. I mean 52!!

Elina's Story - The Day Our Lives Changed

Years ago, my Stake Pres. challenged us to look for Heavenly Father’s hand in the details of our lives...because He is there.  This weekend reaffirmed that great truth as I found him even in the tiniest details!

"Elina has a slight heart murmur", the Doctor said when Elina was born.  It is so minuscule that I can barely hear it.   “That's not a big deal”, I told myself.  People have heart murmurs all the time and they're very common, right?.  Her Grandma Caine has had one her whole life with no problems.  

Then at her 7 year checkup, as the pediatrician listened to her heart he said, "When is the last time we've looked at her heart murmur?"  “Last year when you said it wasn’t a problem”, I responded.  “Well, I think it’s gotten worse and you need to see a specialist….sooner than later!”  He gave me a referral to Dr. Susan Ethridge that comes down to St. George each month from Primary Children’s in SLC.

Wed. afternoon, (April 9th) a beautiful sunny day, Bryce dropped Elina and I off while he took the boys to the park.  After sitting through an hour echo cardiogram (basically an ultrasound of your heart) the doctor came in, sat me down drew a rough diagram of a heart and drew a big hole between the lower left & right ventricles.  She went on to explain that Elina was born with a hole in her heart...the kind they like to fix by 1 year old.  Now her heart has been malfunctioning for 7 years and the pressure has caused her to have a condition called pulmonary hypertension.  She needs surgery to fix the hole but at this point the pressure normally at 25 is at 100 and her body (especially heart & lungs) wouldn't be able to handle it.  I've talked to Doctor Don Day at Primary Children's Hospital and they have an opening on Friday to perform a “heart cath”.  They're going to try to see if they can get the pressure to come down and her arteries to relax using oxygen and some medications.  If it doesn't then they'll try a bunch of different medicines then come back in a week and test again, and repeat until it comes down and the arteries can relax.  If they can't get the pressure to come down...well, just pray hard that the pressure can come down.  (we were told later that if they didn’t come down she would be “inoperable” and would just have to grow up with a bad heart and eventually get on a waiting list for a heart transplant)  The rest of the appointment was a blur of phone calls, giving out tons of info., etc.   

As we waited for Bryce on the bench in the beautiful spring sun, I wanted to throw up, cry and scream all at the same time. This was not what I expected to hear when we went in for the check up.  I was flooded with all kinds of emotions.  Anger at my doctor for not discovering it earlier, guilt for not taking her in sooner, sick to my stomach that it might be my fault if she is inoperable, etc. etc.   

Elina hadn't heard the Doctor and had no clue what was going on so I didn't want to lose it in front of her and scare her.  

When Bryce picked us up and Elina was out of earshot I whispered that she has a hole and needs to have open heart surgery.  We couldn’t really discuss any more than that so we grabbed some take-out and headed for the the temple.  Walking around the temple grounds brought a sudden peaceful, clarity to my mind.  I could see so clearly that feeling guilty and frustrated, or blaming others would not fix Elina's heart.  It wouldn't change anything...just make me miserable.  At this point I could only look forward and say, "what can I do now?"  It was also reaffirmed in my mind that Heavenly Father has a plan for our lives and our days will not be numbered any less.  No matter what happens in the future, He is in charge and I can trust Him.

The next morning as we walked around with foggy brains, trying to pack for the unexpected my sister, Annie, knocked on our door.  She was just stopping by but after hearing our predicament, volunteered to come up with us to watch the boys so Bryce and I could both be at the hospital.  She also enlisted the help of my cousin, Heather, and were a huge BLESSING!  I can’t even imagine how horrible it would have been without them!

I mentioned to Annie that my senses have suddenly heightened about all the kids now.  Just crossing the street brought on fear that a speeding car would round the bend and hit us.  She commented that sometimes Heavenly Father gives us experiences to remind us that life is fragile.

Friday Morning (April 18th) found us sitting in the Primary Children’s waiting room with Elina wearing a “mask” to cover the residual cough from the influenza she was still getting over.  Now we know why she’s always sick and her coughs always sound soo awful!

I wanted to get a picture of us with the fun mural on the wall but “Frozen” had her mesmerized! I forgot to grab the sd card for my camera, so this is best I could do with Bryce's.

Apparently, she’s very used to hospitals/doctors because when a nurse brought in a little cloth doll to draw a face on and to be used to explain the procedure, she wasn’t interested.  When the doctor asked if she had any questions, she just shooed him away. Nothing could get in the way of her and Frozen!  I, on the other hand, had to step out in the hall a few times to put my head between my knees.  For some reason, hearing all the risks and everything that could possibly go wrong, made me a little nauseous.

After a big delay, (11:10 instead of 9:30) the time came.  We kissed her little cheek and held her hands as they blew “cotton candy” smelling anesthesia through a small blue mask over her nose.  When she closed her eyes, we were escorted out the door and finally let the tears flow.  The results of this moment would determine the rest of her entire life.

They handed us a beeper and said they’d be done in 3-4 hours.  With that assurance, we walked back to the University Guest House to say a prayer with the boys.  As we walked, I once again, was struck with the beauty of the spring blossoms and clear, warm air.  It felt as though Heavenly Father looked down on me and sent me a special hug from Heaven.    

After a family prayer, Bryce headed back to the hospital and I took the boys, Annie and Heather for nice drive and lunch.  The boys coughs’ made it hard to go anywhere in public, so they had been confined to the hotel room all morning.  We got lost a few times before I remembered the gps in the glove box.  We grabbed some Wendy’s and had just started a picnic at the “This is the Place Heritage Park” when Bryce called and said she was already done.  It was only 1:45pm.  Less than 3 hours!  That’s gotta be a good sign!  

We finished eating, packed up and rushed back to the hospital. “They'll be able to operate!”, Bryce exclaimed as I walked in.  I never imagined how good those five words could have possibly sounded.  After we got Elina settled in the recovery room and comfortably watching Charolette’s Web, the Doctor pulled us aside and showed us the pictures of the procedure.  They found there were multiple holes in the septum between the ventricles  with the largest one directly below the valve.  They would definitely have to do open heart instead of repair it through the arteries, but it was still a HUGE relief! Another blessing: They also found a very small (2mm) hole in the Ductus Arteriosus, the artery that closes off at birth. This is actually a good thing because if the Dr.s are wrong and there is too much pressure after surgery, the hole will act as a pressure relief valve and in fact, they'll probably go in and make it bigger to let more blood get to the lungs!   

So after 6 movies and two slushies we were able to take Elina back to the hotel.  After we got her settled in, I took Emmett and Daven for a drive to buy some cough meds...and secretly hoping they'd fall asleep :) As I pulled out of the parking lot I looked up I had to catch my breath at the beauty of the sunset. It really was just a typical sunset...nothing particularly special but seeing it through different eyes and greater perspective made it gorgeous! Another witness to me of God's love! Almost like He sent it just for me:)

Well, the drive didn't work and we had to keep the kids from jumping all over Elina. I thought the night we found out about the hole was bad, but this night was much worse.  A constipated Emmett stayed up until 1:50am crying and squirming.  I handled the other kids waking up throughout the night pretty well until 5:50am when Aaron started screaming and flipped on the light with a bloody nose.  I was feeding the baby so told him to run into the bathroom and get some toilet paper.  He was running all over crying and dripping blood down the white blankets before he made it to the bathroom.  By the time I made it in, he had just stuck his nose on top of the entire roll of TP. The rest of the morning didn’t get much better so it was a relief to finally head home!! 

An awesome neighbor delivered lasagna and these super yummy cake pops right as we got home.

This evening another neighbor brought dinner and a bag of crafts in case Elina gets bored! It's a good thing because after staying home from church she's been complaining of boredom ALL day!            

At this point the hospital will be contacting us this week to schedule the surgery.  We’re hoping for the first part of May because Bryce’s Mother will be here for a previously planned visit for 9 days.  Now all we have to do is have Elina on oxygen at nights to help her arteries relax and make sure she doesn't get sick!!!  I think I’ll just home school her for the rest of the year.

This weekend has felt like a year.  It’s amazing how one moment, you’re chasing kids around and making dinner and the next your entire life has changed!  I’m grateful for the wonderfully supportive family, friends and neighbors I have.  We have been very blessed through the entire experience.  

When I’ve heard others say they could feel the support of everyone praying for them, I thought it sounded a little cliche.  Through this experience, I’ve come to know that it isn’t cliche at all.  I felt a power and peace I don’t even know how to describe.  My mind was clear and in situations that would have typically left me irritated, ornery or even yelling at my kids, found me understanding, patient and loving.  After 3 sleepless nights, I didn’t even feel tired.  I felt a mantle of strength placed upon me. One night as I pondered this, I had the distinct feeling/impression that this power coming to me from everyone’s prayers.  It was a beautiful feeling and I am very grateful for the many prayers that were sent our way.