Update

    The ultrasound didn't give any answers today. They need to compare it to his older ultrasounds. Which they have to requrst from the U. So I will update you as soon as I hear more.

Not such good news

     Today we had Cole's 4 month check up. He is doing well on his lenght and weight but his head is measuring larger than it should. It went from 89% at 2 months  to 97% now. He isn't showing signs of any symptoms and his soft spot still fells the same. But our Dr wants him to get an ultrasound to check his venturals. So Thursday afternoon we will be doing that. The Dr said that if any of the symptom show up like throwing up or really sleepy/ hard to wake up to go straight to the ER. So we have been watching him carefully. He was kind of grumpy tonight but I think it was more because of getting shots today. We will keep you updated as soon as we hear more.

Family Fun!

This week we were able to go to Luke's school program. He told me that he was chosen to be on the front row because he was one of the best singers. ;-) He got to be Brigham Young, he was pretty excited.

                                                        This is the place!

Mark was at a church camp this week so of course we had sleepovers in my room. In the morning I woke up wondering where I fit.

Zoey came to track with us this week. The kids loved having her there. The coaches even let her join in the fun. She tried the high jump with Drew. They did pretty good for there first time.

This week it seems like Cole has been more alert. He has been tracking more then ever and he even started cooing. It is so fun to see his little personality coming out.


We went on a walk tonight to the elks and horses. The kids had fun feeding them apples. I love that we have such amazing animals that we can walk to and see up close.

Happy Father's Day!

We had a great  weekend celebrating Mark. Although Mark wasn't the one that carried Cole in his tummy, he sure did an amazing job carrying our family the last couple of months. We couldn't have done it without him.

 The kids gave Mark this tie. They wrote all their favorite things about him on it.(I forgot to take a picture when he had it on)

We also had a great time with Mark's Dad. We feel so blessed to have amazing parents that love and support us through good times and hard times.

Good News

    We received good news today at Cole's bladder pressure test. He was such a good little boy.  We found out that he is able to empty his bladder all the way and there is no sign of refux into the kidney. Which means we don't have to cath anymore! We will be having an ultrasound on his kidneys, to make sure they are doing well.  We are so grateful for this great report.

16 weeks

    This week was full of family fun.

     We were able to go to the boy's baseball games. Cole handled being outside pretty well. He wasn't a fan of the wind, but he loved watching his brothers.

       Our therapist came this week. She gave us a couple new things to work on. She said that he is doing well. We are very grateful to have her help.

       Our city fair was this last weekend. We had a blast going to the horse pull, playing games and going on rides.

       Gabe was able to go to the neighbors party. In the gift bag were these neat glasses. He loved them soooo much he wanted to sleep with them on. What a silly boy!

       Sunday we celebrated Grandma Scarlet's birthday at Uncle Chris's house. The kids had a blast jumping on the tramp, playing on the playground, eating root beer floats and getting drinks out of Uncle Chris's full size pop machine. Happy Birthday Grandma Scarlet!

     With Tay and Miles out of school for the summer they have been a big help. Miles made this little bed for Cole to take a nap on. And of course he had to have a stuffed animal to sleep with.

     Last night we were able to go to Grandma Scarlet's swimming pool. The big kids had a blast, Cole had a blow out. It made for an adventurist night.

      We got news yesterday that Cole will be having his bladder pressure test this Friday instead of next Friday. This test will help us know what type of bladder he has, like if he will be able to be potty trained or not and if his bladder is refluxing into his kidneys. He seems to be doing very well in the bladder area. We have been cathing him twice a week since he has been born. Hopefully that will come to an end after this test.

      I weighted him tonight on our scale he weighs in at 12 pounds! He is becoming a BIG boy!

15 weeks

     With it just being the two youngest boys at home they are enjoying spending alone time together.

 Gabe is always asking to hold Cole. It's fun to see him be excited about being a big brother.

    We made our first trip to the grocery store. Gabe gave Cole a sticker for being a good boy while we shopped.

   Gabe also likes to help Cole with his exercises. Of course Cole hasn't started enjoying them just yet.

 On Wednesday Cole's eyes were looking funny to me. His right eye would go cross eyed while the left eye would stay looking straight at me. He had wondering eyes when he was first born but hasn't lately. So I called his Pediatrician to see if it is something we should be worried about. He didn't think so, but still wanted to see him to measure his head. At the appointment Cole's head measured very well, and his eyes weren't doing the crossed eye thing. (of course not) Our Doctor said that if it was because of Hydrocephalus it would happen a lot not just once in a while. Plus with his head measuring well he wasn't worried. Most likely his eye muscles are still developing.

 

 Cole and I were about to go to one of Miles Lacrosse games. Miles did a great job and the bonus was Miles team won the game.

 On Sunday we were able to go to an open house for our friend Calvin. He is doing so much better lately. We were so excited to meet Calvin and his parents Cami and Nate. Calvin and Cole are only 5 days apart in age. It will be fun to see them grow up together. It will also be great to have a buddy that can relate to having Spina Bifida.

      I was asked by a couple of people "What's the story about Calvin?" I thought that I had posted about it, but maybe I didn't go into enough detail. So I was going to share Cami's post that she posted. I can't read it without crying. It has everything that I fear that could happen with Cole. I'm so glad that Calvin is doing so much better. We are  praying that he will continue. I'm grateful for Cami and Nate's amazing example of strength through such hard times.

One week ago tonight I was driving home to shower and grab a change of clothes after being admitted to the hospital following Calvin's first neurosurgery appointment.

I was bawling my eyes out, praying loudly, asking God how much he expected me to take, and telling him that I couldn't handle much more.

The next morning Calvin went to the OR for an emergency shunt placement.

He was discharged 2 days later. 

When we took him home he cried and cried - when we moved him, touched him, tried to feed him. 

It was awful. 

He was in pain and there was nothing we could do about it.

Saturday night he started breathing funny. We watched him for a while and then decided to take him to the ER. When we got there he had fallen asleep, so we decided to not check in and just go home.

We watched him all night and at 8 am we got too nervous and took him back.

After 6 hours in the ER, it was deemed that his breathing was totally normal and we took him home.

Monday and Tuesday I watched him and watched him.

He kept breathing different, eating different, crying different, acting different.

We tried to convince ourselves that, like the ER Dr. said, that was all normal.

We attributed it to post-operative pain, to him being more alert now that the pressure on his brain was gone, to normal baby fussiness....

I got more and more worried until I was no longer functioning like a normal person.

I couldn't think, couldn't focus, couldn't talk, couldn't eat or sleep, couldn't even look at Nate.

All I could do was watch Calvin's breaths.

Every motion I went through was to make sure he was still alive.

He had an appointment with his pediatrician this morning, and I could hardly wait to hear another confirmation that, yes, this was all normal.

Then this morning, as I was holding him, Calvin went limp, turned blue, and stopped breathing.

When I was 17 years old I was driving home from a friend's house when it started snowing - and snowing hard. I had just began the descent down a large hill when my car started to fishtail.

In my head, I repeated what I knew I had to do.

"Whatever you do, don't slam on the breaks, steer toward the skid, don't jerk the wheel."

I'd been told many times, taken driver's ed, passed my driver's test.

I knew what I was supposed to do.

But my body couldn't do it.

I slammed on my breaks, spun the wheel opposite what I should have, started spinning out of control, and slammed into a tree.

When I looked down and saw that my sweet little baby was blue my heart stopped.

Immediately I thought back to the last blue baby I coded at work.

I remembered that baby's face, his eyes wide open staring blankly into space.

I imagined my hands holding that little boy, doing chest compressions.

I remembered the team doing CPR. 

I knew what I was supposed to do.

But my body couldn't do it.

I let out what, if anyone had heard, I think they would have described as a blood-curdling scream.

But no one heard, because I was home alone with him.

I screamed out his name, told him to wake up.

I kept screaming.

He kept not moving.

I ran down the hall, and somewhere along the way remembered that I should do rescue breaths and call 911.

I was shaking too badly to do either.

I put my mouth on his face and attempted to breath for him, but I knew I didn't do it right at all.

I ran down the stairs and out the front door.

As I ran across the street to my neighbor's house, I tried to call 911. 

But I couldn't get past the home screen on my phone - I couldn't remember how to place a call. 

I kept looking at the calculator square and trying to remember how to press the right numbers.

When I reached my neighbors door, I pounded and screamed.

Nothing happened.

They weren't home.

At this point, something inside me clicked.
I was all alone, and I needed to be in control.

I was finally able to call 911.

I was not, however, able to talked in a normal voice.

After waiting on hold (REALLY!?) for what was probably seconds, but seemed like an eternity a lady answered.

"911, is your emergency medical, (something, something)?"

I told her medical, my baby is blue, please send someone NOW.

"Calm down ma'am! I can't understand a word you are saying. What's your location?"

That made me mad enough to remember to give another rescue breath.

This time Calvin gasped a little and startled.

He looked at me, his eyes were so wide.

He started to go from blue to grey and was trying with everything he had to breathe.

I ran back to my house and tried to answer their questions in between my screams to Calvin.

"Does he have any medical history"

"Is he responding appropriately?"

What???!!!

Again, this jolted me back to reality and I was able to give another breath.

Which is good, because not once did the lady actually tell me to breathe for my baby.

He began breathing irregularly, and went from grey to white.

At this point my neighbor drove by on her way home.

She ran up to us, and I threw her the phone - I couldn't handle the 911 lady any more.

I gave him a few more rescue breaths and he started to come to.

Finally, a fire truck came around the corner.

They immediately put Calvin on oxygen and he started to improve.

He was still pretty limp in my arms, but he was breathing.

My neighbor called Nate and minutes later we were both in the emergency room -my emergency room- once again.

They began to run some tests, and took the oxygen off to get a swab of his nose.

This time Nate was holding him when he stopped breathing, and once again, started to turn blue.

The Dr. watched him.

And watched.

And watched.

Finally I asked him if he would maybe like for me to give my baby some rescue breaths.

"I want to see what he does," was his reply.

He turned blue, and went limp.

They called a code on my baby.

People came running.
Nurses, respiratory therapists, pharmacists....

My co-workers.

My friends.

They worked on my baby until he was intubated and stable.

They hugged me and gave me tissues.

They stood next to me while everything was happening.

Comforting me, saying just the right things.

(Not like the 911 lady.)

After a few hours, and things had settled down a little, and we were in the pediatric ICU, we tried to get a grasp on what was happening.

The intensivest told us there are 3 main things that cause a baby to stop breathing.

1. Brain

2. Heart

3. Infection

Obviously we are worried most about brain, because he had a shunt placed last week.

His heart has been strong throughout everything, and every lab that has come back so far testing for infection has been negative.

Calvin had a CT and an MRI checking his brain and his shunt.

His neurosurgeon has been out of town for a few days and was flying back today.

She came straight to our hospital room when she landed.

She told us the CT looked good, the shunt is working well.

The MRI is another story.

She had difficulty getting a good view of the back of his brain, where his herniation is.

She said that was either a good thing, or a very, very bad thing.

By the time she got here it was too late to do another MRI, so he is having another one in the morning so she can get a better look.

Right now he is sedated with a breathing tube.

We will know more tomorrow.

Please pray for our sweet little boy.
I just want to take him home and hold him close.

Love, Nate and Cami