November 24, 2011

so thankful.

My heart is so full today.  I have so many things to be grateful for.  But today – and these past couple months in particular – this picture about says it all.


It has been a tough couple months.  Seeing Crew go through so much. Knowing for the past couple months that my baby is in heart failure, and always wondering in the back of my mind if we’ll be able to see him grow up (although things are looking good now).  But then I think of the blessings that have filled our lives since September 19, and my soul is overwhelmed with feelings of gratitude for the reality of a loving God who doesn’t desert His children in times of trial.  I have felt His love so strongly as I have cried and prayed more in the past couple months than more at any other time in my life.  I’ve learned so much.  Maybe Crew had to go through this for me.  So Heavenly Father could teach me things He couldn’t in any other way.  I am grateful for the things I have learned…and the things I have yet to learn.  I go to bed each night and offer up prayers of gratitude for all that I’ve been given . . . and I’m sure to get up the next morning enjoying the profound and unceasing blessings of a new day.

October 09, 2011

eight weeks old and an update.

And what a whirlwind these past eight weeks have been!  Parts of them have flown by, and some minutes have seemed like hours.  From adjusting to a newborn at home and becoming a family of 7 (it still blows me away that I have 5 kids!), to a week in the hospital, and learning about Crew and his likes, dislikes, and little internal schedule as he is home and recovering.

This is a day after coming home from the hospital (he’s off of oxygen now)-


And yesterday when he turned eight weeks old-


Isn’t he cute (I might be a little biased)? And do you see that slight hint of red in his hair?!

We went to his follow-up appointment with cardiothoracic surgery on Wednesday.  It didn’t go quite as I had expected.  They took his weight (he’s gained almost a pound since he’s been home – you can even tell from looking the pictures above), checked his vitals, did a chest x-ray, and did an echo to check his heart function.  Then you meet with the doctor. Instead, three doctors came in, and each one examined him. They then left the room and came back a few minutes later. I would have bet they were going to tell me everything looked great.  Instead, they told me that Crew has a new heart defect called coarctation of the aorta.  They reviewed all of his past echos, and it didn’t show up at all.  It had developed in the past nine days since he had been home. This is super rare (as Crew’s heart apparently is) to develop it this late.  The echo showed it was fairly severe.  Normally, they would have admitted him and planned for surgery to correct it.  However, since Crew wasn’t showing any severe symptoms during examination, they wanted to wait a few weeks since there is a 5-10% chance it will correct on it’s own.  And since surgery is more likely than not, they felt the extra few weeks would help him build up some strength and reserve and maybe he’d put on another pound or two before they most likely have to operate again.


I’m not sure why this sweet baby has to go through all this, but it’s okay.  I don’t need all the answers.  I just need to have faith.  And I do.  I have faith that Heavenly Father’s Plan is perfect.  And this is part of His plan.  In the meantime, we’ll love on him as much as possible. :)

September 21, 2011

the rest of the story...

Wow.  The last 48 hours has been a little bit crazy, to say the least.  Here's the rest of the story...
Cor triatriatum:  First reported in 1868,[1] cor triatriatum, that is, a heart with 3 atria (triatrial heart), is a congenital anomaly in which the left atrium (cor triatriatum sinistrum) or right atrium (cor triatriatum dextrum) is divided into 2 parts by a fold of tissue, a membrane, or a fibromuscular band.

This is the diagnosis that has changed our plans a little bit this week. 

The past couple weeks, Crew's color had been a little 'off'.  He was a a yellow color, but not a jaundiced yellow color.  Then about a week ago, we started noticing he would have short periods of time throughout the day while he was sleeping that he would be pale and clammy.  'I'll just watch him,' I thought, as a few minutes later he would return to baseline.  I checked his temperature a few times, and he didn't have a fever.  'Maybe that's just him,' LJ and I continued to think.

However, over the weekend, he became a little more irritable than usual.  And he wasn't eating quite as well, he would only eat while the milk came easily and then stop.  L.J. set up a surprise visit from my mom and sister on Sunday to celebrate my birthday which was earlier in the week.  I'm glad they came to see me, but looking back I know it was divine intervention.  They spent the day with us and confirmed our suspisions that something was a little off with Crew, and I wasn't just being a paranoid mom.  I called the clinic where we take him, and got an appointment for in the morning.

The morning went on as usual, and we went to his appointment at 11:00.  I went, 90% sure they were going to check him out, say he was okay, just to watch him, and send us home.  Afterall, there were just a few little things that concerned me, but nothing was blatantly wrong.  I would have been okay with that, feeling better that he was checked out by the pediatritian. 

The pediatritian checked him out and spent about 45 minutes with us.  He said he heard a tiny heart murmur, but only because he listened really hard, and this wasn't too unusual for a newborn.  He said with his coloring, he could have a liver issue, or with his irritability and lack of zeal to eat well, he could have some pyloric stenosis.  He said, "it might just be nothing.  But my gut is telling me that he needs to go to Primary's and get checked out." And I thank Heavenly Father everyday since that Dr. Gould listened to his gut.

We went home and I grabbed some lunch and a book knowing that the wait in the ER could take a while.  L.J. and a neighbor gave Crew a blessing.  How grateful I am that I have a husband and we have neighbors that are worthy and willing to administer a blessing at a moment's notice.

We arrived at the ER and talked with the doctor.  He ordered lots of blood tests and a chest x-ray.  The chest x-ray showed that Crew's little heart was very enlarged.  They then did an echocardiogram to get a closer look at his heart.  In the middle of the echo the cardiology fellow walked in to say hi, glanced at the screen for about 10 seconds, and asked the echo tech if it was 'cor.' She said that it was.  He then explained to me that he was born with three atriums instead of two and there was a little hole in between two of the atriums.  Due to the way the blood is pumped through the heart and lungs, his right ventricle (which does a lot of the pumping) was very sick, and a lot of the blood it was able to pump was not oxygenated. Blood was backing up and causing high pressures in the blood vessels to his lungs as well.  They would admit him and do surgery on Wednesday.  I asked the echo tech if this was common, and she said she had never seen it.  I later asked the cardiology fellow how often he had seen this condition, and he said 'never.'  I was so impressed that for having it be such a rare condition, they still knew exactly what is was.

Several hours later they took us to the cardiac intensive care unit (CICU)  hooked him up to more monitors, and drew more labs.  About an hour later after some concerning lab results, they decided to take him to surgery that night.  They took him to surgery at 11:00 pm.  The surgeon told me there was a 5% chance of complications in surgery, but 100% risk of mortality if the surgery was not done.  So in 12 hours we went from thinking they would just send us home from the pediatrician's office to emergent open heart surgery.

We prayed and cried and prayed some more.  How helpless you feel when your little baby is having his chest cracked open, and his heart stopped and circulation halted to his entire body.  Knowing the only thing we could do was pray, that's what we did.  We prayed and hugged and cried and prayed.

At 2:30 am, surgery was over.  It was a success.  They did have to shock his heart once after the extra membrane was removed to get his rhythm back to normal, but he responded well.  He did have a big pleural effusion, but that was expected.  He told me the extra membrane in his heart had a hole the size of the tip of a ballpoint pen that that the blood was flowing through.  He told me there are about 200 documented cases of this heart defect since it was discovered in 1868.  Crew was the third baby in 25 years he had seen with his condition.  Most die of heart failure before it is caught.  He said that Crew should make a full recovery.  He should not need any further surgeries.  Recovery would be a few weeks at least so his heart and lungs recover and learn to function how they should without the extra membrane.  I hugged Dr. Gruber (who happened to be the chief of staff of cardiothoracic surgery who was on that week) and told him thank you for everything.

Post-op day 1.5, recovery is slow but sure.  Crew is awake for short periods of time and making progess towards getting the breathing tube out.  They are feeding him a tiny bit through a tube in his nose now that his GI system has enough blood to function properly.  He is still on a lot of meds to help his heart function a little bit better, and control his pain, and has needed some blood transfusions.  But he will do great.  He know he is in capable hands.  All of this is par for the course - of open heart surgery that is.  They told me there is not really a par for him since his contition and surgery are rare.  Every one new that comes in his room says something along the lines of, "oh, this is the special boy!" :)  Yep, he sure is.  

I know that he is still here for a reason.  It's Heavenly Father's plan.  Crew has such a noble spirit, and here to accomplish great things.  We are overwhelmed with all of your love and concern and support.  Thank you, from the bottom of our hearts, for your prayers in his behalf.  

We love you little buddy, all 9 pounds of you.  And we are so happy your broken heart is fixed. <3            

September 12, 2011

goodbye, summer.

IMG_2290 Addie colorized IMG_0037 IMG_0103 IMG_0059 IMG_0104 IMG_0119 IMG_0126 IMG_0138 IMG_0139 IMG_0143 IMG_0147 IMG_0157 IMG_0163 IMG_0170 IMG_0176 IMG_1783 IMG_1935 IMG_1940 IMG_1950 IMG_1961 IMG_1982 IMG_2003 IMG_2024 IMG_2082 IMG_2112 IMG_2125 IMG_2143 IMG_2156 IMG_2203 IMG_2230 IMG_2238 IMG_2262 IMG_2280


hot summer nights

playing with cousins

sleepovers with grandparents


riding bikes

road trips with family

the drive in movie

staying up late

flips flops

campfire peach cobbler


swimming, swimming. and more swimming



bear lake


playing with friends

sleeping in

getting ready for baby

no schedule at all


just being together as a family.

This summer has been a wonderful one.

I am so sad to see it come to an end...until next year.

August 27, 2011

he melts me…









…can you see why? :)

August 21, 2011

he’s here!!

C smile



Crew James Reader

August 13, 2011

at 3:52 pm

7 lbs. 6 oz.

21 inches long

C cute

C foot

C hair

C hair2

C fingers

C hand

C profile

There is something magical about having a baby. Your baby. The way you know just how they like to be held. The way their eyes light up when you walk into a room. The way you can understand every noise they make. The way your heart feels like it just may burst out of you when you watch them sleep at night. I just can’t seem to get enough of him.  “There is something about a boy that just gets you,” moms of boys tried to tell me.  Possible, but not likely, I thought.  I won’t know what to do with a boy, I know how to love baby girls.  Boy, was I wrong.  When they laid him on my chest for the first time, I was completely overcome. I knew that he was mine, and I was his.  I am so excited to get to know him, what gifts he brought here with him, what motivates him, what makes him unique, and why God sent him to me. So blessed to be his mommy.

So now we are home and adjusting to life as a family of 6. His big sisters cannot get enough of him and daddy is pretty darn happy to have another boy in this house. I am just so very grateful to have my sweet little baby boy home, safe and sound. He is the best and life is good.