A Wonderful Weekend

One of the great things about living in Utah is that pretty much wherever you live, drive ten minutes and you are in the mountains.  Autumn is my favorite time of the year--when the weather is still nice but a little cooler, and the leaves change color.  I love Halloween and Thanksgiving.  I love corn mazes, pumpkin carving, apple cider, apple crisps, canning peaches, corn on the cob, and all the fall festivities.

Autumn in Utah is beautiful.  The canyons are awash in colors of green, red and gold, and Friday, we were able to get out and enjoy it!

Friday was a busy day for us.  We had to get a blood gast done for Kai to find out his CO2 levels.  He is at 44!  Yay--no ventilator for now!  I was so nervous for the blood gast because if it had come out way high again then we would have to put him back on the ventilator.  Although 44 is still high (normal is 29-40) his pH levels are in the normal range, so we can keep him off the ventilator for now!  Happy news!  He is also growing-- now up to 10 lbs 13 oz--he is getting to be a big boy!


After his blood gast, the OT (occupational therapist) came over.  She said that although Kai still hasn't had the swallow test (and that will be done only when he can better tolerate oral stimulation by us), she thinks that he can start to have very minute amounts of baby food!  We are going to start at her next visit this week!  I am so excited!  She was very encouraged to see how he was chewing on his fingers, so although he didn't tolerate when she was trying to get the pacifier in his mouth, she saw that he can tolerate things in his mouth on his terms.

Once the OT left, we had our first outing as a family since Kai  was born (to something other than the hospital).  We didn't want to do anything too taxing with Kai, and I have been dying to get up in the canyons to see the leaves changing, so we took a trip up Provo Canyon to Cascade Springs.  Kai did fairly well; he slept the majority of the time, and was only awake at the beginning when we took him out of the car.  The trail is paved, and is a very easy hike around the springs. It was so nice just to get out in the fresh air!  The day was beautiful--sunny, and not too warm or cold.  Unfortunately, Shin was unable to come due to work, but Heather came with us, which worked out really well.  J and I switched off with Kai, so we were both able to enjoy, and Heather kept Zuri occupied.

Zuri had so much fun--she kept looking for fish in the water.  I never saw any fish, but J said that he saw some.  I have never been to Cascade Springs so late in the year before, and I was pleasantly surprised at how much water was still there.

On our way home we went through Heber and stopped by Dairy Keen for some shakes.  Yummy.  It was a wonderful day, and it was so nice to get out.

Here are a few pictures from the trip!


Zuri being cute in the car on the way up.  I was trying to get a picture with the hat and her blue eyes, but she kept blinking or squinting or the picture would come out fuzzy.  This one turned out a lot better than I thought, even though you can't really see her eyes.

Zuri was being funny and not looking at the camera.  Such an odd look on her face, but here we all are together!

Finally got a smile!

J with Kai; he had been fussing and J calmed him down.  Once we got him back into his stroller he slept pretty much the rest of the trip!

Zuri and Heather looking for fish.

J actually got a shot with both of them looking at the camera and smiling, but I prefer natural pictures.  I thought this was a great picture of Heather and Zuri together.

Zuri helping J push the Kai in the stroller.  She loves to help with Kai.

Kai sleeping by the waterfall.  So serene.



I included this picture more for the irony of it than anything.  If you look behind the tree on the left, you can see a picnic basket, and on the right, a person's back.  Yep, that person was blatantly ignoring the sign.





On Saturday, I had a girl's day out with my mother-in-law, and sisters-in-law.  It was Amanda's birthday, so we spent the day at her house doing crafts.  We made these cute holiday decorations.  Everything was done by us.  Suzanne and Maria had cut the wood and sanded it before we got there.  We all painted and put the lettering and paper on together.  It was a lot of fun.  The wood was scrap wood from Maria and Nolan's house (they are remodeling).
  This picture is of Maria's Crafts.


Sunday, we watched 17 Miracles.  If you haven't seen it, I suggest you do--it is amazing, and a tear-jerker.  Afterwards we played Farkle, a dice game that Heather brought over.  We have decided to have Sunday night as family game night, and our Family Home Evening, since J stays at his Aunt and Uncle's house in Bountiful on Monday nights (he runs a group session late and to save on gas and not be home at midnight, he just stays up there). 


The weekend was just a wonderful weekend.  A much needed break from all the stress that we have had lately.  Our first outing with Kai was a success, and I am looking forward to many more in the future! 

Dragon Parents

Last night I had a hard time falling asleep, so I perused facebook to see if there was anything interesting, and came across this link to an article: Notes From a Dragon Mom - NYTimes.com.  Curious, I checked it out.

How I could relate!  Kai may not have a degenerative syndrome, and there is a chance that he will survive to adulthood, but in all reality, he will most likely not see past his third birthday.  He will not attend college, he will not marry and have children.  He will be dependent on us all his life.  He will not be able to vocalize more than a few words (if any); he will not be able to grasp mathematics.  Even with the hearing aids he won't be able to enjoy the finer nuances of music.  We will be lucky if he can hear speech sounds.  We don't even know if he will be able to walk, let alone run.  Swimming is out of the question with his trach.  A simple cold could be fatal.

Yet, despite all that, we do not live in grief and despair.  You see, we have a knowledge, and now more than ever, an understanding of our purpose in this life.  Kai brings us a little closer to God.  We have become dragon parents.  We have grown stronger.  We know all about oxygen saturation levels and the twelve different shades a person changes before they are really "blue."  We are experts at suctioning and signs of respiratory distress.  We could tell you all about granulation tissue and the woes of a feeding machine.  We have logged over 4,000 miles in the last 20 weeks going back and forth to the hospital and different specialist appointments.

And yet, through all this, we do have a healthy child for whom a bright future is possible.  All her hopes and dreams; the world is attainable for her.  She shows strong inclination for athletic abilities and we will help her develop those skills and other interests.  When Zuri was born I thought how could I ever love anyone more?  Then Kai came to our family.  Love multiplies, not divides. 

We live for today.  We take hundreds of pictures.  We create memories that will survive even when Kai is not with us any longer.  We love, we laugh, we cry.  We have good days and we have bad days.

We try not to ask "why" this happened to us.  We did that at first, and there is no good answer--at least not an earthly one.
Was it my fault?  What could I have done differently?
All the doctors say: nothing, there was nothing that you did to cause this.    
Is there something wrong with me?
No, comes the reply, it is just random. 
Will it happen again if we have another child?
The chances of you having a healthy child are much greater than having another unhealthy child.

I admit, it is very hard to see all the families around us with healthy, happy children.  It is hard not to be a little jealous when friends go on vacations, to see our friends and families live perfectly "normal" lives--because our lives are not normal.  We can't just ask anyone to babysit for us--the person has to be trained how to take care of Jeremy.  We can't just pick up and go places anymore.  Several years ago, J and I bought a travel share because we have a desire to explore and see the world.  Now, I get excited when I get the chance to get out of the condo to go to Wal-Mart, but even that we can't do as a family.  Since Kai has been home, J and I have precious little time outside of the condo together.  Every minute we are gone we feel guilty and worry.  We both have a strong desire to move out of Utah, but now where the whole country/world was open to us, we have to worry about where the closest hospital/specialists are located, pollution, and elevation.  It is easy to look around and be saddened by all that we have "lost," and all that we cannot do. 

But we try not to look at it that way.  We keep each other buoyed.  We keep an eternal perspective.  We love our children.  We know that "this too, shall pass."  We talk about ways that we can accomplish our goals and our dreams.  It won't be easy--but we will make it happen--somehow.

The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself... (excerpt from article).

When the time does come for Kai to pass on, we will get through that as well.   It will be gut-wrenchingly hard, but we will make it through.  It's ironic, when we were first married we lived in a ward where there was an older couple who were genuinely happy people.  The Spirit shone about them and you couldn't help but feel their love for you.  We found out that they had lost a child--not sure on the circumstances surrounding the child's death, but when we discovered that about them, it made their joy and happiness all the richer.  J and I want to be like that couple.

For now, however, we are taking things day by day.  We love Zuri and Kai more than words can describe.  Life is not easy for us, but through this trial we are finding a new strength; a new purpose and love of life.

We are dragon parents.

5 Months

Kai has made it to the five month mark and is still going strong.  Last weigh in was 10 lbs 1 oz.  He still needs head support, and although he can move his head side to side, he can only hold it up for a few seconds at a time.  He loves sticking his fingers in his mouth but we are having no luck with the pacifier because of his gag reflex.  He still doesn't like his hearing aids, and I have been unable to keep them in long enough to see if he can really hear with them or not.

Kai loves being held.  If he is fussy all you have to do is pick him up and he will "quiet" down.  He will bury his head into your chest and rub his face back and forth.  Face down, high on your chest, is his favorite way to be held.  Although you can't hear him when he cries, his face and actions show you quite clearly when he is in distress.  He loves to watch us--he will move his head to watch us as we move around the room.  He also enjoys watching the TV.

We have seen him smile in his sleep and give random smiles, but he hasn't given us a smile in response to interaction with him.  He communicates a lot with his eyes, however.  Other than looking at his toys, he does not make an effort to reach out and play with them.  He does play with his trach mask and g-tube all the time.  We call the trach mask his comfort because he holds onto it often and he settles down when it is put on him (if it has been off).

His oddest quirk is that he likes to have his head cranked way back or off to the side.  It has been a challenge to keep his head in alignment with his body because he will literally fight us when we adjust his head to where it should be.  He is pretty strong when he wants to be, and after getting his head aligned, he will push it back to the position he wants, and all the padding and blankets will not stop him.  His occupational therapist said it is a fairly common trait with infants and children with respiratory issues, and especially those with trachs.  She said that they feel as though they can breathe better--even though they really can't--but to them it helps to open up their airway.  It is not a good thing to have Kai's neck cranked back or constantly off to the side because it will actually shorten the neck muscles on one side and help inhibit him from being able to sit up on his own.  So, I have been working hard at keeping his neck in alignment with his body, and his OT even commented on how she could see the results and was impressed.  

As for being swaddled, he still prefers it but he is starting to get used to being free.  Because of his equipment and trach mask, Kai gets hot pretty quickly and easily, so he is sweaty quite a bit of the time.  We do all we can to help keep him cooler, but he basically has a heater on him 99% of the time.  It will be nice when the cooler weather gets here.  We just turned off the a/c last week and we were able to open up the windows and doors.  It has been really nice, except now we can hear the traffic on the freeway.

Zuri adores her little brother.  She loves to hold him and touch his head and his hands.  Unfortunately, because of circumstances, she can't really play with him, but she is always checking to see how he is doing and will give us updates.  "Mommy, Kai is wiggling."  "Mommy, Kai is crying."  "Kai is sleeping.  Shhh...."  It is really fun to watch.  She also enjoys helping out with him when she can, and watching when she can't help.  She will say goodbye to him as we leave, and includes him in her prayers.   If we leave the condo with Kai, she knows exactly where we are going. "Hospital," even if it is just to the pediatrician.

We are at the end of the three month home restriction with Kai, although we haven't been given an official "you can take him out now."  Our outings to his appointments has shown just how difficult it is to take him places.  I don't know how I would manage to go grocery shopping or anything casual like that because of all his equipment and strict regimented eating schedule.

We have his routine and cares down, and it is hard to believe that I was so nervous about taking care of Kai with the trach and the g-tube before we brought him home.  Although they say that the trach care is a two-person job, I have been doing it on my own for a good month or two now.  Trading out the trach is different--I haven't had to do that one on my own yet--that one really is a two person job, when the nurse had to do it, she had me help.  Luckily, whenever we have had to do an emergency trach replacement, there has always been two people here to do so.  Since we have had the bigger trach, we have only had two incidents where we have had to do an emergency trach change.  We change the trach every week.  The g-tube hasn't been nearly as bad as they made it sound at the hospital.  Other than granulation tissue build-up, we haven't had any problems with the g-tube.  The feeding pump, on the other hand, is a constant vexation, although I think we have most of its kinks worked out.

It is hard to believe it has been five months since Kai was born.  Five crazy months.  The little guy has wormed his way into our hearts, and although the last five months have been really hard, they have been worth it.

Leaf Bug

This post is just for Em.  A few days ago I was taking the garbage out to the dumpster and on the wall near our front door was this bug.  At first I thought it was a leaf.  I thought it was an odd place for a leaf to be resting and was curious on how it stuck to the wall.  As I got closer I realized it was a bug.  I have never seen one of these kind of bugs before.  The official name is leaf bug.  Not very original, but it fits! 

The leaf bug is actually quite large--longer than my middle finger but smaller than the length of my hand.  It stayed on our wall for two days, in pretty much the same spot.  We took many pictures (just for Emily because she has a fascination with bugs) and it has taken me some time to narrow down the best two.  So, here you go!
 

Fun with Pictures

Yesterday Zuri was having fun with dress-up and I just had to grab the camera.  She was wearing a Halloween dress and found her reindeer hat from Christmas.  In the photo she looks so much older!  I have noticed how much she is changing--she no longer looks like a baby; she is looking like a little girl now.  Wow, how time flies.  She is still a little petite thing, but she looks so grown-up in the pictures!


This morning she wanted to hold Kai, so I thought it would be a good time to get some pictures of them together.  I would get a good shot of Zuri and Kai would be looking away.  I would get a good shot of Kai and Zuri would be making a weird face or have her eyes closed.  I did manage to get a couple really cute pictures though.

I had a hard time choosing which picture I liked better.  Zuri looks so grown-up (and it looks like she is wearing make-up--she isn't) in the second picture, although I like the position and look of Kai better in the second one, even if he was looking away.  Do you realize how hard it is to get a deaf infant to look at you on cue?  It really is amazing how much we rely on sound not only for ourselves, but for others.  Other than cropping and a slight red eye correction, I didn't do any photoshopping to the images.

Remember that diaper rash I mentioned in my last post?  Well, it turns out that it was really a yeast infection.  Ouch!  Kai's poor bum is so sore and bleeding--I hope the medicine works quickly.  He was awake all morning long and just couldn't seem to get comfortable.  He had several dirty diapers this morning which made it worse because I had to keep wiping his bum and it would just bleed.  Poor baby!  Luckily, now we have some medicine and he is sleeping peacefully.  Hopefully he is feeling better now!

Weight Loss (and Gain)

The transition from breast milk to formula is complete.  Unfortunately, my attempts (however half or whole-hearted they were) at keeping my milk supply were not successful, and so little Kai is now wholly on formula.  The transition has not been a smooth one, either.  Even though we were already fortifying the breast milk with a very gentle formula, completely switching him over has been hard on him.  We have had lots and lots of spitting up and for some reason very acidic diapers.  Now he has a very bad diaper rash.  He cringes every time we wipe his bum.  I feel so bad for him.  The formula we have him on is supposed to be one of the best for babies with sensitive tummies--we have to have it special ordered, and it is still hard on him.  Hopefully he will adjust soon!

With all the spitting up that he has been doing, he had a plunge in his weight.  Two weeks ago he was at 10 lbs 5 oz, last week he was 9 lbs 5 oz.  He dropped a whole pound.  I took him in today for a weight check and he is back up--now at 10 lbs 1 oz.  He is climbing back up the scale, which is a very good thing. 

Other than that, things have been surprisingly calm the last few days (knock on wood).  We did have an incident the other night where the nurse woke me up to do an emergency trach change because he had spit up and aspirated some formula (it had gone straight into his trach and his oxygen saturation levels kept dropping despite her suctioning attempts).  Once we changed the trach, his sats went right back up and he was fine.

Life is starting to fall into a rhythm.  There are moments of complete chaos but there are also moments like now, where all is calm.  Both Zuri and Kai are sleeping, and other than the hum and shwoosh-pooosh of the machines, it is quiet.
I like these moments.
All is peaceful.
All is well.

Quality Time with Zuri

The other day Kai slept for most of the day so Zuri and I had some good quality time together.  In an effort to keep her from demanding Dora, Wonder Pets, or Blue's Clues, I came up with a couple different activities than normal.

My dad had gotten Zuri a four foot puzzle for Christmas, but the age is for six and older, so I haven't pulled it out for her before.  She had a blast with it--and needed a lot of help, but she really had fun putting the pieces together.

The beginning

The middle

All finished!

I also taught her the art of Jenga!  She is a natural!


On Saturday, since it was raining, Zuri and I took a trip to the library.  She picked out a few books that she wanted and I picked a few that I thought she would enjoy.  Since she is a huge fan of the PBS show Curious George, I thought it would be fun to get the original story.  Have any of you read the original?  Wow--it is actually really sad.  I wouldn't in any sort of way term myself a liberal or feminist or anything of the sort (okay, maybe a touch), but I was a little shocked that the book is considered a children's book.  The story opens with the Man in the Yellow Hat visiting Africa and taking a happy, but curious George home with him.  When he gets home, he decided to put George in the zoo, so while George watches him call the zoo, he gets things arranged.  George then wants to try the telephone and accidentally phones the fire station where he is chased by the fire men and put in jail.  He escapes from jail and causes a traffic accident where he meets up with the Man in the Yellow Hat who helped him "climb into the car and at last, away they went to the ZOO!  What a nice place for George to live!"  Really???  So, you take a perfectly happy animal out of its natural environment and put it in a zoo and it is all party for that animal?  Wow.  That is not what I want to be teaching my child.  It is a good thing I got plenty of other books for Zuri because I am not reading that one to her. 


And she doesn't even miss it.

 ***************

While I was writing this post, Zuri saw the pictures and wanted to play Jenga, so J brought out the Jenga to play with her.  The smile says it all.

Hearing Aids

Kai got his hearing aids yesterday!  Whoohoo!   Except, he doesn't like them, and they have a hard time staying in his ears.  He absolutely hated us putting it on him, and when he "heard" he got even more upset.  I think he likes the quiet.  The audiologist said that as he grows, the hearing aids will stay on better and hopefully in time he will come to like them.  She said the best thing to do right now is to have him wear only one at a time until he is more accustomed to the hearing aids.

I haven't had a chance to get a picture or a video with him wearing the hearing aids, mainly because he dislikes them so much and they keep coming out, but also because he has spent quite a bit of time the last 24 hours sleeping.

We got a cute little bag to carry all the stuff required for the hearing aids.  One more bag to carry around.  I am going to need a stroller just for Kai's stuff at this rate!  I didn't realize that there was so much involved with hearing aids.  I thought that you had the hearing aids, the ear molds, and the batteries.  Nope, not quite.  The hearing aids are super expensive as well.  We are talking over two thousand dollars for just one.  Holy cow! 

The cute bag

Inside the kit

The hearing aids

Conference Weekend

Conference this weekend was amazing.  All the talks were so inspired, but there was one in particular that felt as though it were meant just for me.  Ever had that feeling?  Several years ago I had a teacher who taught that in preparation for conference, to get the most out, pray and ponder about something specific that has been troubling (or something you have been struggling with) you.  You will be answered in Conference.

Ever since, I have been doing so, and it has never failed to work.  In fact, this conference, my answer came through multiple talks given.  Interestingly enough, I received answers even outside of the conference talks themselves.  It is amazing how the Lord will hear and answer you.  I hope that I came out of this conference a little better and a little kinder.  I know that I was spiritually nourished.

Conference was a little different this year due to our situation with Kai.  Friday, Dad and Emily came in and spent the weekend with us.  On Saturday, J stayed home with the kids while the rest of us went up to temple square.  Zuri stayed home because we had tickets to the morning session and they don't allow children under 8 in the Conference Center.  For the first weekend in years, we had beautiful weather both days. 

Sunday, my mom and sister, Breanna, came and watched Kai all day while we all went back up to temple square.  Even though we had tickets again, a few of us elected to sit out so Zuri could come with us.

Dad and Emily left early this afternoon.  It was hard to see them go.  Zuri really missed Emily.  She was attached to her all weekend.  It was the cutest thing.  Zuri is starting to get so grown up--she is getting out of her nickname phase.  She used to call Emily, Emmie, and my dad, Papa, but now it is Emily and Grandpa.  Emily kept trying to get her to call her Emmie, but she kept reverting back to Emily.

This post has lots of pictures!  I took so many pictures over the weekend that it was hard to narrow down my favorites.  Enjoy!




I love all the flowers they have on temple square.  It is always so beautiful that I have to stop and get a picture!

Guess who else likes the flowers?  

Zuri had to stop and smell each little section whenever we walked by.  


When we first arrived, Zuri kept staring up at the Assembly Hall and calling it a castle.  She was also fascinated with the fountain next to the Assembly Hall, and she and Emily spent quite a bit of time playing in the fountain.

 
Maybe a little too much time, because she ended up slipping and falling in!  Luckily, it was at the end of the day, after the last session of Conference and she was okay.  Not even a scratch, just a little scared by the incident!  While being comforted, she finally gave into her fatigue and fell asleep.
 
(Little Side Note:  Pay no attention to the old lady with the hair--oh, wait, that is Emily...lol!  Yep, she got an old lady haircut.  Had to make fun of it all weekend.  Poor Em!  Go figure that the one time she allows pictures to be taken, she had a bad haircut.  Don't worry, Em, it will grow!)

The fountain wasn't the only thing Zuri had fun playing with Sunday.

She enjoyed showing Jori and Austin "her" ipad.

Of course, she had to play it with Emily as well.

We had some mother-daughter time as well, but...most of her time was spent with Emily.

Funny thing about this picture is that one of Zuri's favorite games to play with Emily is to put her necklace in her mouth.  We have pictures last year from Georgia of Zuri doing the same thing.

Zuri also had to imitate Emily.  Whenever Emily would take a drink, Zuri would take one as well.  :-)  Nope, she didn't miss Emily at all. ;-)

We took some family pictures.

Sadly enough, this was the best one.  Zuri wasn't cooperating at all.  I actually like how the front row is all looking forward, and in the back row everyone is focused on Zuri.  Not sure why my great Uncle Francis is standing so far off to the side.  We get everyone all looking at the camera and together in another shot, but then there are a few people who blinked.  It is hard to get a good picture of everyone!

Trying to get Zuri to cooperate.  I laughed so hard at Emily's cheesy smile!

Emily, Shin, Heather, and me.  Funny look on Shin's face!

I love that Emily and Shin are messing around.  I had originally cut this picture from my list but J said he thinks it is a great picture and though it should be included--so I have added it in!


I thought this was a nice side profile picture of my dad!


Love-love this one of J and me!


We made pizza for dinner on Sunday, and during dinner, Zuri was starting to get ornery.  She has this thing where she points at you when she gets upset and says "you!"  She hasn't done it in several months, but she started the pointing thing and Dad turned it into a game.  He was pretending to "duel" (like in Harry Potter) with Zuri.  She loved it--and got her out of her little funk!


Saturday night Zuri refused to let me anywhere near her for bedtime--it was all about Emily.  In fact, I went into her bedroom to put something away and she kept telling me to get out because Emily was going to read her a story.  It was so funny that she had us in tears.  She even wiped the tears from Emily's cheek and told her that it is okay, not to cry.  She is such a little character!


This morning Dad and Emily spent a little extra time with us before they left to go back to California.  Zuri took advantage of the extra time to create a new game--have Emily drag her down the hall on a blanket like a sled!  She loved it--it wore Emily out!

It was a great weekend and we will miss Dad and Emily.  It was nice to have them here.  It might not be until Conference in April before we get to see Dad again.  Although we should be able to see Emily one more time before she takes off for Japan in March!