Days 2017

Days 2017

Sunday, November 13, 2016

Peeling Out

The kids are getting older.  I was realizing yesterday that Luke will leave for all-day first grade the same year that Leslie leaves for college.  That might be a bit much for one mama to handle.
My previous post was about Cooper's surgery, but I also felt like I wanted to add something about what the rest of us have been up to.  I had some fun taking pictures of the kids, and also Luke and I had fun looking at their age progressions as we put their new photos in the frames.

I also forgot to write about Boston's birthday...
He had a great time.  He was due for a birthday party since his birthday usually falls over Labor Day weekend and we usually twist his arm into letting us go camping or something like that for his birthday instead of having a party.  He was excited to have a few friends over and to go to Jump On It (a trampoline place) with everyone.  We had a great time and all of the boys were thoroughly drenched with sweat and in need of a shower by the time we finished, so I call that a smashing success.

Boston also earned his Webelo and graduated from Cub Scouts.  He is loving Boy Scouts thus far, especially since our cool next door neighbor is one of his leaders.  Their group when shooting yesterday and he had such a blast.  Ha ha, I guess that was a pun.

Luke helped/watched me arrange my dried sunflower heads in various places around the house, but when I asked him, "Don't they look beautimous?"  He declared with not a little disgust in his voice, "Mom, they're not beautimous.  They're dead!"
Leslie is in the Women's chorus this year and it was fun to go to her concert and see so many of her friends in the various singing groups as well.  They get to go on tour to San Diego in the Spring.  (I had no idea extra-curricular anything cost so much!  In my defense, I grew up where all the students got a physical and a $20 activity card and that was it.  Oh yes, and I do remember that shopping for a Choralaire dress was a nightmare.  Luckily Leslie bought her dress from another very tall girl, so we lucked out.)
Leslie with some of her fun girlies.
Leslie also got to go on tour with her marching band to St George and also Disneyland.  Super fun for her, and super glad for me that she is done with band practice until next summer.  Bring on the babysitting!

 We also had fun over UEA break.  Mark was on a business trip in San Diego, and Cooper had pre-op visits up in Salt Lake, so we tried to make the most of our time by stopping at the Lehi Fun Center and trying out their Halloween activities.  Who knew that the hay bale maze would be such a blast?  I liked it because it was challenging but small.  Luke was laughing his head off and running after his brothers the entire time.  I actually lost him once and had to hurry on out to intercept him in case the boys didn't have him.

These slides were fun, landing the kids in piles of dried corn.
During the break I also took a page from my sister Darcy's book (she is an avid angler-woman) and got a new fishing pole for Boston.  The kids dug the worms, and I took him fishing ALL BY MYSELF.  Mom of the year award right there.  Luckily, he didn't catch anything and I didn't have to deal with teaching him to clean a fish.  I could if I had to, but I'd just rather not.  Macy and Luke and I fed the ducks until they got way too aggressive and came after us with the great big ornery geese and I may have shrieked and thrown my sack of bread at them.  Luke couldn't get to sleep that night because he was worried about "those crazy ducks."  
Luke and I have some good fun in the kitchen.  This is a long apple peel from canning apple pie filling.  I was laughing a little when I realized just how much canning I had done this year, and that it was Peaches, Pie filling, Pesto and Pickled Beets.  And a partridge in a pear treeeee!

Thursday, November 3, 2016

Bearing my Burdens

Today I was thinking about the times my burdens have been lifted.  I don't know how much I've talked about this before, but an obvious one comes to mind that I will share.

A little over four years ago, we were expecting our fifth baby.  The doctors had seen a heart problem on his ultrasound.  They weren't sure how serious it would be until after he was born, but they told us it looked like tricuspid atresia, where one of his ventricles did not develop.  Basically he was running on three chambers instead of four, missing the use of the ventricle that pumped blood to the lungs.  They told us that likely if he was to survive he would require three major surgeries as an infant, and that they could probably get him to college.  (!).  One doctor reassured us with, "I do have one patient who is 38 with the same problem." 

This was also our second baby with a birth defect, which was actually a good thing because we were mentally over that whole concept and had experience with infant surgeries.

Luke arrived safely and with much fanfare at the University Hospital where he was "Life Flight" carted over the skyway to Primary's before I got to meet him.  He got through his first surgery with flying colors, although Mark and I must have blocked out the part where the doctor told us it was a 20% mortality rate--we both gasped months later when the doctor was going over the stuff for the second surgery and told us that it was safer than the first.

He came home after only about two weeks in the hospital, although he was still on a feeding tube and a huge tank of oxygen was parked in the office waiting for his oxygen saturation levels to drop, as they told us would happen as he grew.  I was to weigh him every day and report to the nurse once a week, which stressed me out to no end because we were trying to get him off the feed tube, and once it was off, to have him stay off.  He was also on an oxygen saturation monitor hooked to an alarm that would go off several times in the night because his breathing would slow to the point that his levels would drop alarmingly.  Not that we could really do anything when it went off, other than wake him up a little, which the alarm would sometimes do without us.  Sleep was pretty much nil for both of us so we took shifts sleeping on the couch with Luke nearby in his bouncy.

Oh yes, and I was pumping every few hours because breastfeeding apparently burns too many calories for baby, also, they wanted the milk thickened way up to keep him gaining weight.  I would have gone straight to formula but they hoped he would become healthy enough to nurse regularly.  (He never did but I pumped for 6 months.)  They also really wanted the breastmilk antibodies because a round of RSV or whooping cough, etc. would have done him in.  Awesome.  Get your vaccines, people.   I probably should have worried about this part more than I did, but I figured, if he was supposed to be quarantined, Heavenly Father wouldn't have sent him to a family of 7.

Was all this a burden for me?  YES.  A big one.  I did have many, many helpers--awesome doctors, my angel mother who came to be with my kids and run the house, many neighbors who brought meals.  The burden would have been much worse without them--they definitely lifted much of it.  I also did a great job of feasting on the scriptures and writing in my journal about my impressions--they were a lifeline.

Personally, though, I was a mess.  The hormones and lack of sleep were pretty bad, but I had been through that a few times before.  Mostly with the other babies it would just make me extra weepy to the point of giggles and I just knew I needed more sleep.  This time, though, with all the added stress, I felt like I was facing a big mountain of darkness for my future and the future of our family.  I couldn't hardly eat anything--chewing and swallowing was a huge chore.  I cried all the time.  I even had a hard time remembering Luke's name immediately--it just didn't seem to stick.  I think throughout my pregnancy I subconsciously didn't want to become attached.

Then, one night I was watching a talk on TV that had been given at the General Women's Conference.  A story was told about a pioneer woman coming to Utah who had lost her husband and although everyone else was happy to get to their destination, all she could see was a big mountain of darkness in front of her.  Yes!  I thought.  That is EXACTLY how I feel!  I don't remember the rest of the talk, but that week I arrived at the conclusion that only Jesus Christ and his grace could remove that mountain of darkness ahead of me, weighing on me so heavily, no matter the outcome. 

I started a new course of action.  It was two words.  Pray Always.

For the next few days I did my best to carry on an ongoing conversation with God in my head.  As I woke up.  As I pumped or fed the baby.  Before I parented my children.  Counting blessings.  Naming fears.  Driving in the car.  Doing the dishes.  As I lay awake in bed for hours.

About two days later I felt totally different.  My appetite returned.  I felt like things would work out.  I felt more relaxed.  At some point we had called the nurse and asked to take off Luke's oxygen monitor except for periodic checks, and to our surprise she consented.  I felt like life was going forward.  At some point at this awakening time I came across a scripture that I have written about before, Hebrews 9:11, where Jesus is called the "High Priest of Good Things to Come" and I knew, I KNEW, that I could trust Him with my future.  My burden was lifted.

Before I tell you the rest of the story, which happily, you've probably figured out, I want to share one more thing that totally describes my experience. 
"And I will ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions."

--Mosiah 24:14, Book of Mormon
Luke became the "Star Patient" on the nurse's call roster, (although I always was a little stressed when I had to report his weight.)  He never did have to go on oxygen, and his second surgery which was predicted to be at age 4 months was not required until 8 mos when his oxygen finally started to drop into the 70s.  Miraculously, we were very calm about his second surgery and felt like it would go well.  We were actually excited for open heart surgery.  With the surgery came a wonderful surprise.  Luke's heart was fairly unique--his ventricle was pumping a teeny bit, but he also had a hole in his heart that was providing increased flow to the lungs that they were able to work with during the surgery, negating the need for a third surgery.  And allowing FULL LIFE EXPECTANCY.  It felt like Christmas in May, and by July Luke was even growing rolls of baby fat in his legs.  Here he is, the cute little stinker.  Love him so much but also am so grateful for the way he taught me to rely on my Savior.

Cooper again with Surgery Ten

Hey, Honey-butter.
Here's our pretty boy Cooper.  This picture makes me laugh but it also shows really well part of what the doctors were working on this surgery.  See how his left cheekbone is a little flatter/caved in than the right?  I can't pronounce the technical name of what they did, but basically they went through the inside of his cheek and cut the little bone that attaches the cheekbone to the upper jaw so that it can adjust a little bit with the orthodontic expander they put in the roof of his mouth.
He has had an expander before when he was about 4, but part had sunken back in.  He does not like the expander, his mouth hurts after I crank it, but I don't remember it bothering him when he was little, so hopefully as his surgery heals it will hurt less.  Not sure how long he needs to wear it, hopefully only a few weeks, but he has quite a few teeth that need to fit in there that are currently wrapped inside along his former cleft at the roof of his mouth.

Sorry for the gory bloody teeth, but this was when he was waking up and wanted a picture of the inside of his mouth.

Cooper's anesthesiologist was a hoot.  He made sure that there was no one in the hallway so that he could race Cooper's bed down the hall like it was an emergency.  He also heard that Cooper had asked if I could video his falling asleep.  I told him no because I wasn't allowed in the OR, but this guy said, well, we can video it for you.  So, I handed over my cell phone.  The anesthesiologist gives the thumbs up at the end.  They gave it back as soon as they were done and it made me happy to see how excited Cooper was for the whole deal.  (Little did he know...)

So, I think this was his 10th surgery.  By my count:

Lip repair at 3 months
Plate to cover cleft placed at 6 mos
Plate Re-inserted after Cooper swallowed the nails that held it in, 7 mos.  (They gave up when he swallowed the nails a second time and just left it open and pushed up his cleft repair)
Cleft repair 10? mos.
Ear tubes
Ear tubes replaced.
Rib graft/rhinoplasty (nose job) age 6
Bone graft from hip to fill in bone in his cleft age 7
Heavy duty eartubes plus adenoidectomy age 7 (the adenoids were pushing on his ears all this time, so hopefully that's the end of that.  This surgery prompted Luke's tonsil/adenoidectomy.  Awesome.)
Cheekbone-chotomy buttress expander age 9

He also had stitches at the back of his head this year from being hit with a broomstick-swinging-brother, but didn't go under for that one.  Has also broken his arm and sprained his ankle.  Bring on the football!  As he says, why should he care about a little pain?

Since I got the kids' new pictures, we took out the old pictures from the frames and washed the glass.  Here is Cooper's progression.  (The baby shots are in a different frame.)

 While at the hospital, I saw this framed on the wall:

It is not happy people who are grateful, it is grateful people who are happy!

I totally agree, so as a family this month we are keeping a gratitude journal, but I started a little early for Cooper to help him focus on the positive.  One of his favorite blessings of note was that his buddy Ethan came to "visit" him, fairly formally, after church on Sunday with a half gallon of vanilla ice cream tucked under his arm like a box of chocolates and a board game in his other arm.  His mom warned me he was coming, but he was so serious and sincere at the door that it brought a little tear to my eye.

Cooper only had to miss one day of school, and very serendipitous timing, got a football helmet to wear for Halloween.  That helmet is basically his ticket to outside recess because it is protecting his swollen cheek, so he has been wearing it all week.  He has also been getting medicine  (antibiotics) visits from his mom at school and also packing soup in a thermos because he's supposed to be on liquids for a while.  Thank goodness for the best clam chowder recipe ever.  Seriously.

While we were at the hospital one of our friends was also there with round five of chemo with her teenage daughter.  I also had a doctor ask me if I was nervous and I said, "I have a heart baby.  This surgery is like a bubble bath for me."  We are so grateful for this very little trial that we have and so proud of Cooper's patience and strength.  Hopefully ten is our lucky number!