Author Archives: eagar4life

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The turning begins

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We started turning the distractors today.  We will turn them every day twice a day for 21 days.  Each full turn moves the distractors 1/2mm.  Isaac did not even flinch or react to Zane turning them this morning.

Isaac has been doing great!  He has been playing with his toys and talking, although he mostly says, “dada, dada, dada”.  We have been able to take him for walks inside the hospital.  Joseph and Sarah have been visiting this past week and were able to come and visit us on their way out of town yesterday.  The hospital is still under visitation restrictions, so no one under 13 is allowed on the patient floors of the hospital, but since we were able to take Isaac out the girls were able to see him.  Here are pictures from our walk yesterday.  He fell asleep while we were out!

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He had X-rays taken yesterday to check the placement of the distractors.  Zane carried him down to radiology for those. I took pictures of the X-rays.  You can see the plates and you can also see the line where they cut his skull.

Isaac received a cape from Tiny Superheroes, a tiny cape company who seek to empower kids who exemplify strength & determination as they overcome illness or disability.  I still need to get a picture of him wearing it, but here he is in the hospital crib playing.  We also had some friends stop by, who we met in December who have a daughter with Apert Syndrome, and they brought him a sign with his name on it.

  

He won’t take a pacifier, but he loves his bottles.

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We have our own InfANT MAN!!

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Isaac had his first surgery yesterday and he did great.  He had a Posterior Cranial Vault Distraction. During surgery they make a cut in the posterior part of the skull and adhere plates and distractors rods.  We will turn the rods daily for 21 days, which will push back his skull and allow for bone formation in between the bone segments.  The reason for this is to expand his cranial vault and give his brain room for growth.

Here is a picture of an infant skull model with the plates and distractors rods.  Isaac’s plates and rods are not in the same location as these.

Here are two pictures of Isaac’s first CT Scan from last September.  You can see that his coronal suture is fused.

His surgery went well!  Everything went as planned.  His ENT was also in the OR to do a sleep study scope, to see why Isaac’s oxygen drops when he is asleep, a Bronchoscopy, a Laryngoscopy, and to check his ears for fluid.  The outcome of all the scopes was that Isaac’s walls in his throat collapse while he is sleeping, so we will be starting CPAP at night.  Isaac had fluid in both ears, so the ENT placed ear tubes in both ears.

Here he is in recovery.  He was pale, I know hard to imagine our kids any whiter, his eyes were a bit swollen and he was very sleepy.

And here is a picture after we moved up to his room.  He did not have to spend the night in the PICU!

Isaac is a strong boy and a fighter!  We are so very proud of this little boy!

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Because everyone wants to see what you look like pregnant!!

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In November 2013 we found out we were expecting baby #4.  I decided to make a fun count down shirt. The idea came from here. I really thought it would be a fun way to document my growing belly and I would take pictures often.   But not feeling well this pregnancy gave me no motivation to take belly pictures, especially once I got to 29 weeks. So here are the few weeks that I actually took pictures of.  I thought I started before Week 20, but I couldn’t find any pictures before that.

Week 20
We also found out the sex of the baby this week!  The boys went to the appointment with us.  I thought they weren’t paying attention to the ultrasound tech, but they were.  Since Kyla did not know we decided to surprise her.
At first she was disappointed, because she wanted to have another sister!

Week 23


This is my pregnancy is fun look!
Week 24
Week 29
And then we come to week 29.  I had a Doctor appointment this week and when my Nurse Practitioner measured me I measured like I was 35 weeks.  WOAH!  No wonder why I felt so huge.  She did a quick ultrasound and it showed I had excessive fluid, also known as Polyhydramnios.

Week 30

Week 33

This is the last picture I took during this pregnancy.  I took it in a Home Depot bathroom.  I was at Home Depot with Emmett and we were walking down an aisle and this man sitting at the front of the store tapped his friend and pointed at me.  I am pretty sure he was pointing at me, because there was nobody else in the aisle.  It really didn’t bother me, yeah I thought how rude.  Emmett needed to go to the bathroom so I took him and as we walked in I looked in the mirror.  WOAH!  I looked liked I might have that baby in the store, I felt like it too.

I had another ultrasound by the tech to make sure that things were ok, to measure my amniotic fluid, and double check that I wasn’t having twins.  Ok, maybe not that last part, but I definitely questioned it.  At this appointment I asked my Doctor if I should have concerns with the excessive fluid and see a High Risk OB.  He said no, since all my tests I had done previously looked good.  He measured my belly one last time and I measured 47 weeks.  What, 47 weeks!!  I told him I didn’t think my belly could get any bigger and he assured me that it could and compared me to patients who were carrying twins.  I reminded him that was not funny and that I only had one baby.

I ended up back in his office Friday of that same week because I was having contractions.  He gave me a shot to help the baby’s lungs if I went into labor early.  I went back in on Monday to get the second dose of the shot.  And then that Friday, which was the 13th, my water broke.  To read about Isaac’s birth go here.

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PICU….Round 3

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Poor sweet Isaac.  He’s back in the PICU.  He had been working harder to breathe the past couple days.  We had been giving him albuterol treatments and up until Saturday night it seemed like it was really helping.  We decided to take him to the Urgent Care at the Children’s Hospital South Campus Sunday morning.  They could have probably admitted him at that campus and treated him there, but because of his history they would rather him be in the PICU at the main campus.  So, he was transported by the Flight for Life team, ground transport, to the Main Campus.  We are getting far too familiar with the Flight for Life team.
He has been put on BiPap, is on antibiotics, and tested positive for rhinovirus (common cold).  Sunday night was a very rough night in the PICU.  It seemed like he complained the whole night.  He definitely was missing his bottles, which is what gives him comfort.  He does not take a pacifier, so no help there.  They put in a feeding tube today.  I am hoping he will be able to have breaks from the BiPap mask and be able to take bottles during those breaks.
Of course he would get sick now as he was scheduled for his first Cranial Vault surgery this Thursday.  His surgery has been cancelled and hopefully will be rescheduled within the next month.

This was when we arrived at his room in the PICU

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Isaac’s First Hospital Stay

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I realized I never posted about Isaac’s first hospital stay in December.

On December 11, I was sitting on the couch giving Isaac a bottle, he was finished so he pushed it out and then stopped breathing. No gasping, choking, just stopped breathing. It was probably at least a minute. I picked him up, then placed him on his back, picked him back up and flipped him over and patted his back. He was kind of stiff, had turned blue / purple, and then he was back to his normal self like nothing happened. I called 911 as I was pretty freaked out. I have had him stop breathing for maybe 10 seconds, but nothing this long.  Emmett was home with me and he came over and was watching me.  He looked at me calmly and asked,”Is Isaac dead?”  “No, Isaac is not dead,” I responded.  I could only imagine how scary it must of been for Emmett.  However, when our whole downstairs was filled with police, firefighters and paramedics he was like WOW!  Zane was out east working and I had called him and told him what was going on and he immediately came home.

Since Isaac was stable and showed no signs of distress we were able to drive him to the ER at the Children’s Hospital South Campus.  The ER Doctor wanted us to hang out so they could observe him and see if he may need a CT scan.  So, we hung out in one of the rooms.  Zane left to take Emmett to preschool.  During that time I gave Isaac another bottle and he did the exact same thing that he did at home. I was glad that the medical staff was able to see the same thing I did.  The nurse had come in the room right before it happened.  I laid him down on the bed and she put the blow by oxygen mask on him.  His oxygen saturation had dropped into the 60’s and wasn’t really coming back up.  So she scooped him up and took him into one of the larger trauma rooms.  They gave him an IV, got him hooked up to oxygen and the ER Doctor ordered a CT Scan.  The scan looked good showing no fluid build up, which was the ER Doctor’s concern. He was transfered to the PICU at the main Children’s Hospital Campus. They tested him for RSV, which all came back negative.
   

Asleep in Daddy’s arms.  This was the best way to keep him relaxed.  He just wanted a bottle at this point.


He ended up having two more episodes that evening in the PICU, one not following a feed.  He was then no longer allowed to have a bottle.  They put a feeding tube in and continued to keep watching him.  After a couple days he moved out of the PICU and onto the 9th floor, which is Pulmonary.  He had a barium swallow test done and an upper GI test done, which all looked good.  So, ultimately no one knows why he stopped breathing that day.  It’s a bit frustrating to not know, but we also realize that there are probably going to be many times that we do not have clear answer as to why things happen in this medical journey of Isaacs.  He is on reflux meds now, twice a day.  I was definitely nervous every time I feed him after that, but he hasn’t done it since.

Isaac checking out a new toy he received from new friends!

Isaac’s favorite thing, pulling his nasal cannula out and licking it.
They put these restraints on Isaac to get him to stop pulling his cannula out! Ha!

  

He wasn’t going to let those restraints stop him.

 Our Elf, Buddy, made a visit to the hospital to see Isaac.  The kids were unable to go see Isaac at the hospital due to visitor restrictions, so they were excited to see Buddy made it.

Since it was the month of December Isaac had a few visitors in the hospital.  The Colorado Avalanche were there handing out toys to patients one of the days he was there.  Our picture was on the news and on the Avalanche Facebook page.

This boy was so happy to get his bottle back.  He refused to let it go.

 This was the day police men (Cops 4 Cancer) came to hand out toys to patients at the hospital.  I happened to have gone downstairs to get something to eat when they were marching in the hospital.

Visit from a Christmas Bear.

And finally we were discharged after a week in the hospital.







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It’s a good day!

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Isaac has had some really good days!  Yesterday they had him off oxygen several times and today he was off oxygen all day.  Last night they had him on CPAP and tonight he will just be on the nasal cannula.
If the nights goes well, he should be able to come home tomorrow or Saturday.
I was able to take a selfie of us and got him smiling.  Oh I love that face!!
And I can’t help but take pictures of him sleeping!

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Improvement

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Well, Isaac is doing better.  Yesterday he had 3 trials off the BiPap mask.  He was on a nasal cannula and did very well.  Here is a picture of him on the BiPap.

Today he has been on the nasal cannula all day and will be put back on the BiPAP mask for the night.  We are doing a trial, as I write this, with no oxygen.
I can tell he is feeling much better.  He is talking and playing.  I even think he said “Mama”!  Ok, well maybe not Mama, but very close ;-)!

Tomorrow we’ll keep him on the cannula and maybe have more trials with no oxygen.  At night he will probably be put on CPap.  As long as he keeps doing well, they’ll keep weaning his Oxygen therapy.

He even got to take a bath!  Yay!

The dang IV is in the way.  He hasn’t needed the IV for several days, but they don’t want to take it out just in case he were to worsen and need it.

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Moving Up!

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 Isaac was able to move out of his suite in the PICU and up to the Penthouse today!
  
Poor Isaac has the flu, RSV, bronchilitis, and pneumonia.
On Wednesday morning he had a high fever, was so irritated with his BiPap, and getting continuous Albuterol that his heart rate was high.  They were giving him Tylenol and Toredol, but his fever was not breaking.  So, his nurse put ice packs on him and ordered a cooling blanket.  He was also given Ativan to calm him so his body could rest.  His fever went down and he fell asleep and his heart rate came down too.
Thursday, Zane stayed at the Hospital.  Isaac had a fairly good day.  No fever and in the evening they took off his BiPap mask and let him be on a nasal cannula for an hour.  And then of course the mask went back on and he became irritated.  The nurse kept asking Zane what comforts him and of course it’s food, which they weren’t ready for him to have.  The nurse tried to get him to take a pacifier but he knows it’s not food.
I took Emmett to play glow in the dark miniature golf.

And he suckered me into letting him ride this car.

Friday, Isaac was able to be off the BiPap mask and on a nasal cannula three times for a couple hours each time.  He was able to take a bottle each time he was on the nasal cannula.

Saturday, they let him eat when he wanted, so he was on the nasal cannula almost every three hours.  In the evening we moved out of the PICU and into a room on the Pulmonary floor.  We do not know how much longer they want to keep him, but he is moving in the right direction.

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PICU…Round 2

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Well, Isaac is back in the Hospital as of yesterday.  Friday we took him in to the Pediatrician and he tested positive for Flu on Friday.  His Doctor also said he most likely had croup as well.  He prescribed Tamiflu and Decadron and to do Albuterol treatments at home.  He seemed to be getting better and then his breathing worsened.  Tuesday we started out at the Doctor office in the morning, after observing Isaac our Doctor sent us to the Children’s ER South Campus.  There, they tried to put in an IV, which did not go well.  So they did an IO (Intraosseous infusion), which is done by drilling into the bone and delivering fluids and medications that way.  It took three attempts to get it in.  So, they took a drill to his leg three times.  He was transported to the PICU in Aurora by Ambulance.
In the PICU, they were able to get an IV in using ultrasound.  He tested positive for RSV and has mild pneumonia.  He is currently on BiPap and has continuos Albuterol.  He is still working really hard, but is slowly improving.

In this picture they are prepping him for a chest X-ray.

Getting him ready to transport.

He was tensing up and having a hard time so they used passive (“blow-by) oxygen.

Just arrived at Children’s Main Campus getting ready to unload.

He started out on CPAP.

Then he was put on BiPAP.

Finally they put on a mask that covers his mouth too.  He does not like the mask one bit, so he needs to be wrapped to avoid him tearing it off.