Yellow pine campground

First real family camp out this season.  We did do an overnighter parked in Jared's parents back yard, but I'm not sure that counts.

We wanted someplace close because the kids (especially Kinsley) don't do well on long trips.  Having never been there, we drove around looking for the perfect spot for a while.  We got the trailer stuck and had to unhitch the car and re hitch it at a different angle just to get out.  It took forever and we ended up going back to the first campground we saw.

There was some frustration when we got stuck in the first place, but I knew we would look back and laugh, so we decided we could laugh about it as we went.  After all, everyone was fine and only Kinsley thought she was going to be trapped forever.

We finally got back to our original campsite and quickly got everything set up.  I love our new trailer.  It was SO fast to set up.  We put the pre-made lasagna in the oven and headed off to the river to throw rocks.  Even Preston figured out how to toss the rocks and make a splash. Kira just dropped everything on her feet and Kinsley thought it was a good idea to pick up the mud on the bank and fling that around.

Sweet smiling Kinsley

Kira stacking rocks

She refused to smile for the camera

We soon moved on, walking around the campsite and letting the older kids know the boundary of where they were allowed to go and not go by themselves.  Kira wouldn't hold my hand, insisting she walk by herself.  She ended up hitting her head on a piece of wood, and then a few seconds later falling into a bush and cutting her hand a little.  She didn't want to walk after that.

Taking the trio back to camp, I let them explore a little closer to the trailer.  Jared took the big kids back to the river and then on a walk.

Filling up the fire pit

The fire pit became the favorite place for the trio.  They kept filling it up with rocks and dirt.  Sorry to the next people who want a fire, we didn't bring a shovel to dig it back out.  Preston was pretty good maneuvering around the terrain.  We fell a lot, but never really got hurt, and didn't fall more than normal.  Kira who had enough falls earlier resorted to crawling around.  My most stable walker crawled over all the rocks.  She was so funny because she would stand up and walk a couple feet, then get down and crawl when there was unsteady or uneven ground in front of her.  She is a smarty for sure.  Kinsley was so cute.  She tried to walk a couple times, but mostly would crawl after the others and try to keep up.  She is always being left behind, and somehow manages to stay happy about it.

Crawling on the uneven ground

Crazy Boy!

It started to rain before dinner, so we ate in the trailer.  We hadn't planed to ever eat in the trailer, but sometimes you have to do what you don't want to, for the good of the group.  Especially when you don't want your lasagna full of rain.

After dinner the big kids got dressed in rain gear and headed outside for a cookie and to play a bit.  Then we brought them in and they watched a movie on the I pad until late.

Lincoln was up at 7 am like always! He wasn't quiet, but we somehow managed to keep everyone asleep until 8.

Dressed up in the rain gear.

Playing at the edge of the river.

It was raining again, so we had oatmeal in the trailer.  Then the big kids got dressed up and headed out to play in the rain.  Poor Lincoln got his hands so cold from playing in puddles.  The trio wanted to go outside so terribly, but I wouldn't let them.  We decided to pack it up.  We had planned to stay a while longer, but with the rain, and the trio being cooped up, and Lincoln's cold hands, we decided to head out a couple hours early.

All in all a great experience.  The big kids were so responsible with the river and staying within the boundaries we set up for them.  They love camping and I love that they love camping.

Our attempt at a family photo.

Jared was such an awesome dad and a wonderful team mate for me.  Together we can do anything.  We plan to go back soon.  We didn't get to hike the lower Provo trail, which we heard was beautiful, and it being close to home, makes it a sure destination for an upcoming trip.

I LOVE CAMPING!!!!

Primary Children's Medical Center

I started this post over a month ago, but Im going to leave it as it was written.  The surgery was on November 30, 2012 so you have some idea of timing...


This last week we have been at the hospital.  Last Friday we brought Preston and Kinsley in for their airway reconstructions. We were still a little nervous about what they would find and need to do for these little tikes.  Our doctor was hopeful that they would not have the exact same problem, as it is a rare condition and even more rare for siblings to have it, and then two of three is almost unheard of.  In fact from what I gather the fellows here are writing a paper about our babies.

Preston

Preston

Anyway, as it turned out it was worse case for both the babies.  They do a measurement with breathing tubes to gauge how large the airway is, and it isn't very accurate because the tubes are measured by internal diameter.  But a normal newborn would have a 4 mm tube airway opening, and Preston had a 2.5 mm tube opening.  Kinsley had a 2.0 mm tube airway.  They needed to do the exact same procedure on both.  They removed part of the cartilage from a rib on the right side and fashioned a graft.  It was pretty amazing how the doctor cut the airway open and grafted the rib into the airway.  He gave us all the pics and I will post them below.  He even did a relatively new technique that should help preserve their vocal range when they get older.  In the end Preston had an airway tube of 4 mm and Kinsley had a 3.5 mm with a leak (meaning it wasn't a tight fit and the airway was slightly larger than the tube).

Kinsley

Kinsley

The surgeries went well and we were really excited.  Then the unexpected happens and threw us for a loop.

Preston was resting in his bed and they were bringing Kinsley up to the same room.  So we were given the rare opportunity to be there when they wheeled in her bed.

There are a ton of things they need to do when they first enter the room.  They do a chest x ray to make sure the vent tube is in the right location, they re-tape the tube after they decide it is placed properly, they change from the mobile air system to the room ventilator system, and they change all the bedding.  There are several people in the room all working well together so it will be a swift smooth transition.  Things were going along well, they had switched to the room ventilator.  This ventilator has heavy tubes that they pin to the bed. They were trying to situate the tubing and unpinned it, being careful that the weight would not pull out the breathing tube.  Then the x ray came in.  We stepped out into the hallway for the x ray.  We were about to come back into the room when we heard one of the nurses call out "she is extubated!" Apparently what had happened is after the X-ray they had decided the tube was placed shallowly and needed to be advanced a little so they had not re-taped it.  The tape they use in the OR is strong when it is taped to itself, but does not stick well to the skin.  As they were situating and changing her bed blankets the heavy tubes had been mistakenly pined to the blanket rather than the bed.   I imagine this is because they were unpinned just before the X-ray.  The one person had unpinned the tubes from the bed and the pin had become lodged in the blanket.  The other nurse then went to remove the blanket and removed the tube as well.  The shallow tube, the poor tape, the heavy tubing pinned to the blanket became a perfect storm.

Kinsley

We were still standing in the hall and could see a little into the room as the doctors nurses and  attending doctors began to run around.  One ran for the phone to call the surgeon, another ran for the emergency airway cart, people ran in from across the unit, I'm pretty sure the nurse who pulled the tube was running around in a circle screaming....  We stood in the hall trying to be out of the way.    Dr. Smith told them to bag her only and not try to re intubate.  Someone was in the room bagging Kinsley and I saw her stop and lean her head back as she looked down her throat.  The surgeon (Dr. smith) comes flying into the room yelling "no, no, no! My baby!"  The one bagging yelled back "I was just looking!" She said she was unable to get every breath in effectively and was making sure there was no visible airway obstruction.

People were shouting and running around.  I was dazed and in shock.  Then they were on the move.  They had decided to take her back to the OR to reintubate her and rushed past us.  I remember standing there watching someone smash the mask onto my baby's face, as they pumped the bag to give her each breath.  Kinsley's legs were dangling off the side of the bed, her belly was filling up with air.  She was so still.  Everything stopped, there was no sound.  The moment will forever be frozen in my mind.  Then they turned the corner and were gone.  The room was nearly empty, everything quiet again.

The next few hours were confusing.  Everyone told us a different story about what had happened.  Someone told me "Sorry you had to see that, the parents normally are not in the room..."

Kinsley

Kinsley

After what seemed like forever Dr. Smith came back up.  He told us they had looked with a scope and determined there had been no damage to the graft.  She was reintubated, but was being warmed in the OR because she had gotten too cold in the hallways with no blankets.  We waited and waited.  Finally they wheeled her bed back into the room.  The process began again to transfer her from the travel equipment to the room equipment.  They had already given the X ray and re-taped her airway in the OR at least.

The attending doctor came and spoke to us.  She gave us all the details as she understood them after discussing it in the OR.  It was the same that Dr. Smith had said (and what I have related above).  But she told us more of the story.  Once they had gotten her to the OR and begun the scope and reintubation, they had to stop bagging her.  When they did this she was no longer receiving oxygen and her saturations began to drop.  Her heart rate began to drop.  Her heart never stopped, but it dropped into the 50 beats per minute range, and should be considerably higher.  The team began to giver her chest compressions.  They gave her 2 rounds of the IV steroid epinephrine in order to speed her heart.  Her saturation levels dropped.  This all lasted somewhere in the neighborhood of 2 minutes before the airway was reestablished and her levels began to even out.  Then the doctor said these words "because she is so young and because only a short time elapsed, we are hopeful." "Hopeful of what" I asked "that there was no brain damage" she replied. "Of course we will have to wait until they wake her from the drug induced coma before we really know anything."

And so the waiting began.  I went and sat by the bedside everyday for hours.  I would talk to my sleeping children.  I would touch their hands and feet.  I would watch them.  Mostly I waited.  The waiting seemed forever, and the words kept echoing in my head ".... Hopeful there was no brain damage."

Kinsley in the front and Preston in the distance

Preston

Kinsley

Kinsley

Over the week several people came to talk to me.  Among them was a kind lady who was the head of the  "incident management team."  Basically she was the head of the "don't sue us" department.  They had opened a case to look into what had happened to Kinsley, and ultimately decided the hospital was at fault.  During the transition there are two people whose main job it is to watch the airway.  These where the two who were at the bedside neglecting their main purpose.  Doctors talked to me about the chance of any lasting damage being limited, and the fact that we would never really know.  The fact that she was so young was in our favor and her brain if damaged would likely compensate for anything lost.  So I waited, and I worried.

Kinsley

The babies developed pneumonia caused from the ventilator.  Antibiotics were started, but the fact that they were paralyzed didn't help them get well.  Still we waited.

Preston

Preston

Finally Friday came.  One week post operation.  Dr. Smith took them back to the OR to see the graft healing progress, and decided that from an airway standpoint they were both ready to be extubated.    However, from a lung and pneumonia standpoint they were both too ill.  He moved the breathing tube from their mouths to their noses.  A couple more days they said.  More waiting.  These last couple days the sedation was lighter and the babies began opening their eyes.  Crying out with no sound, their mouths open in silent screams while tears rolled down their cheeks and I was helpless.  Preston's eyes would focus on me sometimes and he would try to reach for me.  Kinsley's eyes seemed glazed and without recognition.  These were the worst days of wondering.  They were finally extubated on Sunday and the sedation was changed to different drugs for pain and anxiety.  Still the babies were so drugged and listless.  On monday when I arrived I had my first sight of hope.  Preston saw me and I knew he recognized me.  Then I went to Kinsley and saw recognition in her eyes as well.

Kinsley

Preston

The next few days are kind of a blur.  Preston and Kinsley were withdrawing from the narcotics and were extremely fussy.  Kinsley had so much anxiety she would not let me put her down the whole day.  She cried and cried if I tried to put her in her crib for anything.  She would not let me hold Preston.  She only wanted me.  Every day when I arrived and she demanded me, and recognized me, my anxiety eased a little more.  I knew that we were not out of the woods as they say, but at least she knew me.  At least her mind was intact.
 

Kinsley

Preston

Kinsley

It was another long week, but we loved the PICU doctors and nurses.  Preston and Kinsley were getting to be so well that everyone wanted to come and hold and play with them.  It was a rare treat for the PICU because they normally did not have children well enough to play and interact before they were sent to the floor.  The nurses got a mat for the floor and toys and the babies could play on the mat, and be out of bed.  We spent the whole day sitting on the floor.

Preston

When they sent us to the infant floor we were both disappointed to be leaving the PICU where so many of the faces had become familiar and friendly, and elated that we were one step closer to going home.  However, that is not how it turned out.  The PICU doctors had talked about discharging us straight to home.  They had said the pneumonia had nearly cleared and as soon as the ENT gave us a pass we could go home.  The infant floor doctors did not feel the same way.  They were very concerned with the charting and taking vitals and all the busy work.  The PICU had made sure to check those things, but the doctors had wrote that it only needed to be done during wakeful times and the babies wouldn't need to be woken up, as what they really needed to heal was rest.  The infant floor doctors did not feel this way and began waking the babies often to take their temperature or listen to the breathing or I don't know what all.  It was ridiculous.  The nurse would come in, wake the baby and then say, "shhhhh" and walk out of the room leaving me with two exhausted crying babies.  This happened 24 hours a day.  The baby would cry for 45-90 minutes.  The baby would sleep for 30 minutes.  The nurse would wake the baby.  Repeat.

Preston

It didn't take long before I was ready to go.  I knew I had to wait until Friday when Dr. Smith wanted one more scope before he would release us.  So again I waited.  I was patient.  I didn't complain to the nurses very much at the beginning.  I tried to help so as not to disturb the babies so much in the night.

Friday came.  The scope was done.  Everything was healing well.  We were given a pass to leave whenever the doctors said we could.  At this point we were waiting on the withdrawal.  The weaning of the drugs is a whole other topic of deep dissatisfaction that I won't go into at this time.  Except to say that the doctors didn't feel we could handle the care of the babies at home at this time.  They were too worried about the pneumonia being gone, and the drug withdrawal and the fact that the babies were not eating well, and would vomit frequently.

Preston

I began to grow tired of the waiting.  Finally on saturday I asked Dr. Smith why we were still there.  He said he was fine with us going once the floor doctors felt comfortable.  I was comfortable at that time to handle any care the babies needed, and was certain I would be able to better meet the emotional needs of the babies at home.  I was done waiting.

Preston and Kinsley

Sunday morning the doctors came in to do the rounds.  The head medical student who had been following us was not my favorite person.  She came in and said the same thing she had said for the last 2 days. "we will watch you until noon, and if they are doing well, you can probably go home." And I said, "No, we are ready to go home now.  You can get the paperwork together.  We are ready to be discharged." I said this not to the medical student, but the attending doctor.  He said, "That is what we were thinking." He then turned to the medical student and asked how quickly she could get the paperwork together.  She said she would have it by noon.

We were released about 1pm when all was said and done.

Preston and Kinsley on a wagon ride

This is the whole story as I remember it.  We have held off telling people about the accidental extubation until now for several reasons.  Among them was the fact that we simply didn't know if anything would be wrong, and we didn't want to stress anyone more than necessary.  I was stressed enough for everyone.  I did share with a few close friends and medical personnel who helped to reassure me and lighten my load.  I appreciate those of you who I was comfortable sharing this experience with.  You made the journey easier.

Kinsley tasting her IV

She always wants to share

We have been home for a while now and things are getting back to normal.  We continue to watch Kinsley closely, but have not seen any lasting effects on her development.  The only thing we are still struggling with is the emotional state of all the babies really.  Kinsley has so much anxiety over sleeping that she no longer sleeps through the night.  We have put her back in the crib with Preston which seems to help.  She is nervous of strangers and new places.  She will let others hold her, but takes time to warm up to them.  Kira is so stranger conscious that she will not let anyone hold her.  She wont let me take two steps away from her when we are out of the house.  She is terrified of being left with someone again.  Preston seems to be doing the best.  He is a lover and will take it where he can get it.  He doesn't seem concerned when we visit new places or meet new people.  He remains as always pretty easy going.

Our Morning

3:45 AM - Preston wakes and begins to play in his crib.  I remember that he and Kinsley are in the same crib tonight.  I wake Jared. "Could you get Preston, I don't want him to wake Kinsley."  Jared gets up and tries to settle Preston, who is laughing and cooing.  Preston realizes Kinsley is in the crib and with a giggle he climbs to her and steals her binkie.  Kinsley's cry rings out, but is quickly silenced as Jared returns the binkie to her mouth.  He then gathers Preston out of the crib and holds him.

5:30 AM - Preston is still awake and in a pleasant mood.  Jared is wondering if he will get any sleep tonight. Finally he decides to put Preston back in his bed, even if he isn't sleeping.  However, not wanting to wake Kinsley, he scoops her out and puts her in the swing to sleep.  She wakes for a few minutes, but relaxes and begins to sleep in the swing.  In the crib Preston is still giggling and cooing.  Jared heads for bead hoping to sleep for 2 hours before work.

5:45 AM - Preston has finally settled down.  Kinsley begins to fuss, not wanting to sleep in the swing.  Jared moves her from swing to crib.

6:45 AM - Kinsley wakes ready for breakfast. Jared gives her a binkie.  Kira wakes from the commotion. Jared gives her a binkie.

7:00 AM - Jared's alarm sounds.  He gets in the shower and the babies begin to get up.

7:15 AM - Lincoln calls from the front bathroom "I'm ready to be WIPED!"

7:30 AM - We move the babies to the table for breakfast and I begin to feed them.  We get Linx breakfast and Jared and I eat.  The babies eat baby-food and Cheerios.

8:30 AM - Jared starts washing breakfast off faces and changing diapers.  Preston has leaked through his clothes and is poopy.  Katelyn wakes up and wants breakfast. Kinsley has a poop diaper. Im sitting on the floor feeding the babies bottles as they come off the changing table.  Kira has a terrible diaper rash from the last couple of days so Jared leaves her diaper off as he hands her to me.  I have a towel we used to giver he bum some dry time yesterday.

8:45 AM - The babies are finishing bottles. KAtelyn still has no breakfast.  Preston and Kinsley are crawling around.  Im trying to keep Kira on the towel.  I decide to do a breathable cloth diaper out of a pair of Katelyn's undies and a towel.  I ask Katelyn if she can run and get those things.  Kira wont stay on the towel, so I am half wrestling her, half just holding her as she stands beside me.

8:47 AM - Preston crawls over to Kira and I.  Jared walks out the door for work.  Preston grabs something off the floor from under Kira and has it to his mouth before I see. Poop.  I grab his hand and he grabs the poop with the other hand. I grab his other hand holding Kira to my leg with my elbow.  I tell Katelyn to run out and grab daddy before he leaves.

8:49 AM - Jared walks back in and grabs Preston and takes him to the tub.  This opens the baby gate into the hall.  I'm guarding the poop, and wrestling Kira.  Katelyn comes back with the cloth diaper supplies.  I ask for a regular diaper.  Linx gets one for me.  I diaper Kira as JAred hands me the paper towels and carpet cleaner for the poop.

8:52 AM - Jared gets the baby bath and puts it in the sink, then collects Preston from the bathtub.  I finish the carpet cleaning and look around.  Kinsley has escaped the living room and I hear her in the bathroom.  I go in to find she has gotten up on the side of the tub and has her hands in the residual poop that Preston had smeared there.

8:54 AM - I carry Kinsley into the kitchen where Jared is bathing Preston in the sink and wash Kinsley's hands.  I put Kinsley back in the Living room and fix the gate.  Then I go in search of Kira who escaped.  I find her in the hall and replace her into the living room.  I get the cleaner and go into the bathroom to clean the tub.

8:56 AM - Jared finishes Preston's bath and diapering.  I gather clothes for the babies and begin dressing them as Jared walks out the door for work.  I grab a baby and a shirt and dress.  I get the first shirt on and start buttoning the back.  I have put one of the girl's shirts on Preston.  I don't care.  I just keep dressing.

In the end Kinsley is wearing Preston's clothes.  I know they don't care, lets see if anyone else even notices.  I don't think we are going anywhere today.

Through it all Jared and I just kind of laughed.  Im so glad I have someone who is willing to do everything with me, and take over so often.  When I told him thanks and that I was sorry he would be late for work he replied "sounds like life to me." He is always so positive and helps me in situations like this one where we could either laugh or cry.  I'm glad we choose to laugh.

My poor parenting

Today Katelyn had school.  She has a Halloween program that she is so excited about.  She is calling her Grandma and Grandpa and her friend Martha to ask if they can come watch her.  She is supposed to get dressed up, and then all the kids will sing to us the Halloween songs they have been learning.

For weeks I have been working on getting her Halloween costume together.  At first she wanted to be Cinderella, but her Cinderella costume is in poor repair.  So she and I looked at some pictures on the Internet and she decided she wanted to be a "pink puffy princess" she just wanted a really fluffy pink dress.  So with my limited skills I made her a fluffy pink skirt.  It is really silly looking, but she loves it.  As I was trying to get the shirt together I quickly realized it was way beyond my abilities.  So I asked my mom to help me.  She is an amazing seamstress.  I even gave her a deadline of yesterday and she didn't have a lot of notice.  She worked all day and was able to get together a top with super cute vest and crown.  We picked it up yesterday and made sure it would work well.

Jared went to the store late last night to get some candy for her to take to share with her class, and we coordinated with everyone who was able to go.  This morning we got up early.  Martha came and helped get the babies ready.  I did Katelyn's hair and got her ready.  We were later than I wanted to be, and I knew parking was going to be bad with all the parents there.  We loaded the babies and everyone into the cars.  Jared had decided to be late for work so he could see the program.

I pull up with Linx and the babies and immediately realize something is wrong.  There are no cars parked on the side of the road, and the parents taking kids in are not dressed up.  I think "did they forget?" "did it get canceled?"  So I leave everyone in the car and run in and ask the teacher.  Sure enough the party is next week.

Jared shows up with Katelyn.  She has so coat because her costume is too fluffy, and it is raining.  She is freezing.  I need to take her costume off and get her to class.  But all she is wearing underneath is shorts and a tank top.  I slip my t shirt off from under my sweatshirt and put it on her.  It hangs off her shoulder and goes to her knees.  Then I shuffle her inside.  She is now late and as she stands there in front of her class in my over sized shirt, I can see how uncomfortable she is.  I know she will never tell me that she was uncomfortable at school, and that she was embarrassed in front of her friends, but it still makes me sad to see her like that.

I know this is a small embarrassment, and hardly the last I will cause her.  As I drove away I kept thinking "better a week early than a week late..." Still I'm just trying to make myself feel better.

I actually wrote this post last week, but it took me a while to get photos of Katelyn in her costume.  Here they are, and I do have to say she is SO CUTE!