If you ever talk to a mom that has lost a child, you may have heard them talk about the constant ache in their chest/heart.  I have noticed this more and more as I try to get back to some sort of normal life.  Yesterday, that ache was especially noticeable.


Throughout the day, I would find myself stopping in the middle of a task and ask myself, "Why do I feel like I have a little heartburn," and milliseconds later, I would remember Joshua and realize it is my heart aching for him.  It really does feel like a weird form of heart burn.  Or, I guess it is more like that feeling you have right before you start to cry, but it is constant and I am literally having to learn to live my life with it.

I have heard other "angel moms" say that this ache does get a little less intrusive, but it never really goes away.  Even then, apparently it will come out of no where and just take your breath away.  I have those moments a lot right.  One day, Logan found a piece of medical tape that had somehow gotten in the couch.  I had to recover for a minute as that ache basically punched me in the stomach from seeing that reminder of little Joshua.  Or, when I had to give Logan some Tylenol and I pulled out the medicine syringe.  I couldn't help but think about all the medications we had to give Joshua and the punch in the stomach happens again. It really does happen when I least expect it and it usually takes me a few seconds to recover.

There are other days that my whole body just feels heavy.  It is like the ache in my heart is radiating to the limbs of my body and everything feels harder to move. These are the days I find myself praying a LOT.  If I think too much or dwell too much on missing Joshua, the day can go downhill fast. These are the days I take extra time to study my scriptures and learn more about the spirit world and raising children in the millennium.  These gospel truths are what keep me hopeful and from falling into darkness.  These are also the days that Heavenly Father testifies these truths so strongly.

I don't know if I see much change with the ache from day to day yet.  However, if I compare how it was a week ago, I can tell it is getting a little better...or, at least, I am getting better at living with it.

 I wanted to share this beautiful imagery with all of you because I really fell like it represents how I feel.  Thank you to my new friend from the Intermountain Healing Hearts Angel Moms group for writing the ending of this story and helping us all put our feeling into words.

There is a story that circulates support groups and blogs of families and patients with heart defects. It tells of a beautiful day in Heaven when Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus “I don’t want to leave, I like it here, and I will miss you”. He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, “How about if you leave half of your heart here with me and take the other half with you, will that be okay?” The angel smiles and says, “I guess that will work”. But the little angel is still a little scared. “Will I be okay with only half of my heart?” Jesus replies, “I have other angels there that will help out, and you will be fine.” Then Jesus gives the angel more details about his plan. He says “When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart. And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves.” -Author Unknown
I wanted to finish this story for Joshua.

When he returned to Heaven, amid tears of joy and hugs in reunion, Jesus asked, “How was your turn on Earth?” The little angel replied, “It was beautiful- so many arms of warmth and love to hold me, smiles through teary eyes to greet me. A king couldn’t have asked for more!” Then tears appeared in Joshua’s eyes. “My sweet angel, what is wrong?” Jesus asked and pulled him close. ” I think when I left, I broke their hearts, ” he whispered.
“Quietly, Jesus reached in His pocket and pulled out the other half of Joshua’s heart. Tied to it with fine silvery threads were the pieces of hearts, of all those the little angel had touched in his brief life. Even as he looked the chain grew and grew.
” My dear little one,” Jesus said, “You did not break their hearts. You brought a piece of them back with you. And one day, they, like you, will return to me for the other piece of their hearts.”

Luke 12:34 -For where your treasure is, there will your heart be also.

I was blessed to have many people thinking about how I could keep Joshua with me at all times.  I had a lot of people give me a necklace that represented Joshua and I love every one of them!  I love that I will be able to wear one of them with every outfit!

These necklaces have become so important to me.  I feel like I can put one on and have a little piece of Joshua with me.  I also love that I have multiple!  Thank you to everyone who thought of this as a gift.  I LOVE them all!!

This one was give to us by some people at Tim's work.  I LOVE that it has both my boys on it.  I hope I will be able to add to this with more kids when the time is right.

This is one that we actually purchased.  There was a lady that worked with the mortuary that came and took Joshua's finger print after he passed away.  The large pendant has that finger print on it.  I love this because it is more subtle, but has a real personal touch to it.

This one was given to me by the Intermountain Healing Hearts Angle Moms group.  This is a group of moms that have lost children to congenital heart defects.  The heart has four little charms: 1) The red heart with the word "family" on it. 2) Little blue feet representing my little boy. 3) A little person with Joshua's birth stone and 4) The round charm with the words "Mommy's angel."  I plan to wear this one on special occasions -probably events associated with the heart mom group.

This one was made by a very dear friend of mine.  The main charm has Joshua's name engraved into it.  The three charms are 1)an engraved heart representing Joshua's heart defect, 2) Joshua's "angel wings" 3) A beautiful little gem to make it pretty.  I love that this was made for me by a dear friend and it goes perfectly with many of my outfits :)

Being in and out of the hospital, your house tends to be neglected. We were only home for a few days at a time and when he had to go back to the hospital, we usually only had a little bit of time to prepare.  We would throw things into bags and the rest of the house was left in shambles.  Needless to say, after 2 1/2 months of that, our little apartment was in sad shape.  

The Monday after the funeral, Tim and I both had this incredible urge to clean house...big time. It would be the start of the new chapter in our life and we wanted a clean, fresh start. We were blessed to have both our mothers in town and we put them to work (thanks, moms!!).  We hit every room in the house, starting with our bedroom.

Our bedroom was probably the room in the worst shape.  It was the room we could throw everything into and close the door to the public.  We took down the bassinet (which Joshua only slept in maybe 3 times...but it was still hard), we cleared out all the medical supplies Joshua used (oxygen tubing, syringes, medical tape, etc.) and got them ready to give away to other heart families we knew, and we rearranged our furniture.  We made a stack of papers to file away and started our memory box of Joshua.  It felt good to give everything a place and to have our room as a safe haven once more.

A bunch of medical supplies we were organizing from our bedroom.  TONS of syringes, lotion and soap from the hospital, the pinks bins from the hospital, and we had to decide what to keep and what to give away.

More boxes of medical supplies.  It was amazing to all of us how much stuff was required for little Joshua.  My mom was impressed that we knew what all of it was called and used for ;)

More piles of stuff to organize.  We even gave this heirloom chair to a cousin! (That was a big step for my sweet husband)

The piles of stuff on my dresser.  Pleased to say it is all gone!

 The kitchen and spare room were next on the list.  My sweet mother-in-law went through every cupboard in the kitchen and wiped them all out.  We threw away what we didn't use and cleared out the fridge.  Everything got disinfected and wiped down.

I was too embarrassed to post before pictures of this room.  Lets just say it is amazing you can see any of the floor!  Also, if any of you are interested in that sewing machine desk, let me know...we are trying to find a new home for it because, heaven knows I don't know what to do with a sewing machine :)

 We also did the linen closet...or the "catch all" closest, since it was such a disaster.  We had so much expired medications and so many things just stuffed in there.  There was no way we would know for sure what was in there.  We took a huge bag of medications to the police department (they will dispose of them properly...don't just throw them away!) and got the whole closet very user-friendly.  

Cleaning out the linen closet.  That box is full of expired medications and the white bag is more garbage.  We also had a bag full of DI stuff from this closet as well

But look how wonderful it looks now!  I love it :)

We did the same thing in the bathroom...believe it or not, this is the cupboard under the sink in our bathroom!  I have never seen so little in that cupboard!

By far, the hardest room was Logan's room.  It was where I kept all the baby clothes, toys, and regular baby supplies.  I had pulled out all the baby clothes through 6 months and it just felt wrong to put them all away at once.  Normally, you would slowly put away clothes as your child grew out of them, but here I was, putting everything away all at once.  It was a reminder of things I will never be able to do with Joshua in mortality.  Never get to celebrate a birthday, never get to see him outgrow a size and move on to the next one. Never see him sit in the bumbo chair and learn to sit up on his own.  My heart ached so much and the tears flowed freely.  However, with every box we filled, I found myself healing just a little...Joshua was there with me telling me it would be all right.  Joshua wanted me to move on...to start thinking about the future.

Finally, we did the living room.  We did some serious rearranging in this room because I wanted a wall to put our family pictures on.  It was a MESS for a while, but I LOVE how everything turned out.  In the end, we probably threw away 6 large garbage bag full of garbage, a full recycle bin full of stuff, and many trips to DI.  My mom said it best when she said, "It is like you guys are getting ready to move, but you get to enjoy it without the moving part!" 

In the middle of the purge...what a mess!!

This is what we got after all of that.  My beautiful bookshelf.

Our new TV stand from Ikea.  It changes the whole look of the room and I LOVE IT! Thanks so my amazing husband for putting it together :)

My family picture wall.

Displaying some of the flowers from the funeral.

 As we start the next chapter of our life, the reorganizing of our apartment was the perfect beginning.  We felt ready to face the challenge of life without Joshua and to begin living our life more perfectly so we can live with him again someday.

Well, today is my first trial run being alone since Joshua passed.  My mom left this morning and Tim went to work for a few hours, leaving me home alone with Logan boy.  To be honest, I am doing a little better than I thought I would, but not great.  I find myself thinking way too much...too much about Joshua and what could have been. Today, I am really feeling the ache in my heart...which I have been able to handle pretty well until today.

We put up our family pictures yesterday.  I LOVE how it looks, but I couldn't help but think about how there won't be any more family pictures with our whole family...there will always be someone missing.  We printed some pictures out of Joshua to hang up on the wall as a little memory wall and I find myself looking at them A LOT.  I look at the picture and close my eyes and remember the moment that picture was taken.  I can close my eyes and see his expression and remember kissing his cheeks.  I hope those memories don't fade too quickly.

Our family picture wall put up yesterday.  I love being able to look up at my boys.

Thanks to my wonderful sister-in-law, we have this wonderful frame with the scripture we use to help us through all of Joshua's life (and even now).  I love that I can switch out the pictures every so often so we are looking at different ones all the time.

I am also having a hard time today because Tim and I didn't get any videos of Joshua.  Not really sure how that happened, but it is the one thing I regret.  Fortunately, my parents have one short video of him when he was first born, which is such a miracle.  I try hard not to dwell too much on what could have been with the videos.  It is just SO frustrating to not be able to do anything about it.  I have decided to start working on my book I want to make about Joshua and hopefully that will help me not be so frustrated.

Anyway, I am allowing myself to have a little bit of a hard time today...but I try hard not to stay in that too long.  The last thing I need is to spiral down into depression.  Everyone, just give your kids an extra hug and kiss today...and maybe shoot a quick video for me.

At Joshua's funeral, Tim and I both felt very strongly that we needed to speak.  We were the ones that knew Joshua best and we were the ones that had the most to say.  I wanted to share the words that I spoke at the funeral.  I am grateful I have them written down because on the hard days, I can read through the words and the spirit of the Lord brings back the peace that I felt when I first wrote them.

Everyone has had those experiences with time that just seem strange.  You know the ones I mean....the morning you wake up and you KNOW it is a Tuesday, but you could have sworn it was Friday already...or that moment you look at the clock and expect it to say 2pm and it is really 5pm and you better start thinking about making dinner...or you look at the calendar and it says it is the 28th and you wonder where the last 2 weeks went. Time really is a funny thing.


It has been one week since Joshua passed away.  Only seven days since that crazy morning.  As I think about all that has happened, I can hardly believe we fit it all into seven day.  Not only did we plan and complete his funeral, all the family that has come and gone, and all the cleaning and straightening out we have done, but all the emotional changes I have gone through.  I think about how I was emotionally 7 days ago, I can't believe how much better I am doing already.  It doesn't seem like it should be, but it is...but it feels like it has been so much longer than a week.

Another funny thing about time:  I have had a lot of people ask me how I am doing and feeling and the only way I can explain it is that I feel like I am going back in time...back in time before we had Joshua.  Suddenly, I am able to do all the things I was doing before...we can go to the library whenever we want, I can run to the store without worrying about an oxygen tank and feeding tube, and it is just me and Logan again while dad is at work.  It really does feel like I have gone back in time, but I am a completely different person.  Joshua really did change me as a person.  I feel closer to my Savior. I am finding myself worrying less about things that are just not important any more.  I hug and kiss Logan a lot more.  Really, I have gone back in time, but it is not the same.

It got me thinking about how often we complain about the stage of life we are in...or complain about wanting to go back to another time.  After the last few days, I would not recommend it.  I have thought so many times that I would love to go back and do my freshman year of college again.  I thought about how nice it would be to have my wedding again.  So many times, I have heard people talk about "the good old days."  In reality, we should all just be happy with where we are in life and be grateful that time keeps moving forward.  Each day, we change just a little bit.  The Lord has given us experiences in the order we need them to happen.  It feels so much better to be moving forward with life, to be growing and experiencing new things.  That is the natural thing to do.  I hope we can all be grateful for the things we have experienced, learn from the past, and look forward to the future.

The evening of February 12, 2013 started out just like any other night at home with our little man.  It was our 4th night back home from the hospital this time around and we were finally starting to figure out the routine.  We were blessed to have had some people from the ward bring us a great dinner, I took the time to mix up enough formula and breast milk to get us through the night and the next morning, and we even got the entire kitchen sparkling clean (I was determined to stay on top of the chores this time).  We did have Joshua on his stat monitor and noticed him dropping into the low 70's more often then normal, but we had a cardiologist appointment the next day and planned on talking with him about that.

Around 11:00pm, Tim and I headed to bed.  It was my turn to sleep in our bed in the room and Tim was going to take the shift in the living room with Joshua.  We were splitting up the nights so we both could get longer stretches of sleep.  I planned to take over around 3am or so.  Joshua was bundled up tightly in his blanket and looked so sluggly and warm.  He was finally settled after a long evening.  We all fell asleep comfortably and anticipated a good cardiology appointment the next day and was hoping Joshua would pass his swallow study so we could start giving him a bottle.

A few minutes before 4am, nearly 5 hours after we had gone to bed, I was awoken suddenly by Tim, who burst into the room, turned on the lights and yelled, "Stephanie, call 911 NOW!  Joshua is not breathing!!"  I jumped out of bed as the training from the hospital kicked in for both of us.  I grabbed my phone and dialed the infamous numbers.  As I gave them our address and yelled the problem into the phone, I watched Tim as he gave CPR to our lifeless baby.  The adrenaline was causing my whole body to shake, my heart was pounding, and my voice kept cracking.  I couldn't help but think that we were probably too late and that Joshua had probably already been gone for a while now. But I didn't want to be the one to make that call and I just clung on to a tiny bit of hope that maybe we weren't too late.

Although it probably, in reality, only took a minute or two, it seemed like an eternity for the police men to arrive and another eternity for the ambulance to get there.  The officers took over CPR and once the ambulance arrived, Joshua was rushed from our sight and to the hospital.

It was then I realized we couldn't just leave Logan alone in the house. He had slept through the whole thing! I called a dear friend and neighbor who lived just a block away to come stay with him. The officers stayed in the house to wait for her while Tim and I got into our car to follow the ambulance.

The car ride to the hospital was quiet most of the way.  Neither of us wanted to admit it out loud, but we both knew that our baby was gone.  I remember telling Tim that the Lord had prepared us for this.  We had been getting impressions all of Joshua's little life that he wouldn't be around as long as we would want him to be.  We were prepared, but that didn't make it any easier at this moment.

Mountain View Medical Center in Payson, UT: where Joshua was taken that morning

We rushed into the ER.  I remember how quiet it was there...we were the only ones there with all the doctors and nurses.  We walked into trauma 2 room and I knew right away that they had already done as much as they thought they could do.  Most of the nurses stood around the table while one did compressions.  Another had a syringe of medication designed to jump the heart back into some sort of beat.  Apparently, they had already tried shocking him, since the electrodes were sitting next to him, and it had done nothing.  The ER doctor came over to us and explained that they had done all they could and even if they could get the heart beating again, most likely his brain had been without oxygen for long enough that it wouldn't make any difference.

Tim and I asked for a moment outside before they stopped compressions.  We gave each other a hug and each expressed our encouragement and support.  We walked back into the room and told them they could stop whenever they were ready.  Joshua was pronounced dead at 4:25am on February 13, 2013.  They took off as much of the medical equipment as they were allowed, wrapped him in a blanket, cleaned up around the bed a bit, and placed the lifeless body of my son into my arms. Tim and I sat there as the reality of what just happened finally began to sink in.  Our baby was gone.

Over the next hour, we took turns holding our little one.  We cried a lot and really didn't say much.  What can you say?  Once we had a little bit of composure, we decided it was time to call our parents....it was the first time we had to say the words out loud and somehow it made it more real.  We were blessed that they were willing to make the call to our siblings, so we didn't have to say it again.

The next thing we had to do was tell the hospital we were ready to move forward.  They called the mortuary and they said they would come pick up Joshua in about an hour.  They also called our pediatrician, who lived close to the hospital.  We decided to wait for the mortuary to come and our pediatrician said he would stop by as well to sign the death certificate information.

Our pediatrician, Dr. Knochel, was so kind to come in a talk to us for a while.  He has been such a dear friend through this whole process and had some very sweet words to say.  He talked to us about dealing with the grief with each other, how to talk to Logan about everything, and just gave some sweet condolences.

Around 6:30am, the mortuary came by.  I have never met such wonderful people than the men working at the mortuary.  After they explained some basic information, the brought out a cute quilt to wrap our sweet Joshua up.  We bundled him up good and he carried him out the door with so much gentleness.  I knew we would be in good hands with these men.

We got home and Logan was still asleep.  We thanked our neighbor who had come over and we found ourselves alone in the house. I think we were both in shock.  I decided to take a shower, since we had hours before either of our parents would arrive.  It was still too early to call anyone, since most people would just be getting up for the day. We slowly got ready for the day.

My saving grace during those first few hours at home was my precious Logan boy.  He woke up that morning so happy and ready to play.  Tim and I sat in his room for a while and we all played with his toys.  Anytime he saw us crying, he would come up and give us a big hug.  He really has been the best thing a mother's grieving heart could ask for.

The rest of the day was just a big blur.  Another dear friend and neighbor of mine came over and we cried and laughed together.  My sisters and brother came over after that.  Soon, our parents arrived.  We had a ton of neighbors and friends stop by to give us a big hug.  We even decided to meet with the mortuary that afternoon and get started on the funeral arrangements.

Another friend came over and delivered the family pictures she took less than 72 hours before.  She gave us a miracle gift, which will be for another post.  The ward also brought dinner for 10.  We chatted and cried with family until it was time for bed.  Honestly, it felt like 2 weeks had passed once the day was over.

The next big hurdle for both of us would be sleeping....it just didn't happen that first night.  We didn't go to bed until 11 or 12pm...but I was awake again at 2am.  It was at this time that I typed up my letter to Joshua that I would read at the funeral.   I really didn't make that many changes to it from what I wrote that night.

I was so grateful to have people around in my house.  The idea of being alone was so terrifying...if there was too much quiet it gave me way too much time to think.  Just having other people sleeping in the room was comforting.  I am so grateful for all my family and friends that were around that first day. What a blessing you all are to me and I will never forget it. 

Joshua passed away on Wednesday, February 13. He was sleeping and he just slipped peacefully away.

Yesterday, we had the viewing. I was overcome with how many wonderful people came and even more that mentioned to me that they couldn't come, but would have been if other things weren't in the way. His little spirit touched so many lives.

Today is the funeral. Sometimes, I think to myself "I can't believe I am burying my baby." It is just such a surreal thing and something no one ever imagines ever having I do.

I am so grateful for the short time that we had with Joshua. What an amazing experience we had with him. I am so grateful that I will have him to raise in the millennium and that he will be the extra motivation I need to live my life in such a way that I can be with him again.

Well, we are having more issues with low blood sugars in our little man. Apparently, that is why he has really long periods of being extremely fussy and inconsolable. I am grateful for that!! Now, the question is what do we do about it.

The new medication he is on for his heart rhythm issues does have a tendency to lower blood sugar. However, it seems to be the general consensus that the low blood sugar is probably not related to the the meds. My guess is that they will put him on a new mediation to help regulate his blood sugar. We will just have to see what they decide.

The best news is all this decision making can be done out of the icu!! As long as they decide to keep him on his current mediation for his heart rhythm, we will most likely go to the floor today. :)

Well, we are once again back in the Cardiac ICU...this time for real.  A lot has happened over the last few days.

Yesterday, the team decided to do another echo (or ultrasound of the heart) to check Joshua's heart function.  He has been really symptomatic...meaning he has had some really heavy breathing, working really hard to breath (called "retracted breathing"), REALLY sweaty (like...really...sweaty pig boy!  I have given him a sponge bath every day and he still smells!), and pretty pale and clammy.  These symptoms made them think that he was having decreased heart function or maybe more obstructions in his veins or arteries.  Hence...the echo.

They decided to do the echo in the ICU...not because there was much concern but because the radiology department was full and they would have to wait much longer to get a time slot.  The ICU knows Joshua, so it was a great option.  The echo went great...Joshua had to be sedated for a while, but only with two small doses of Adavan (Joshua's drug of choice).  The results of the echo actually turned out much better than they thought they would be, which we were very happy about (although, it still makes us wonder why he was so symptomatic for so long...still working on that mystery).

So, we were feeling good by yesterday evening.  It looked like it would be another quiet night when Joshua decided to have another arrhythmia.  This was actually the same arrhythmia he had the very first time.  His heart rate jumped to 220 beats per minute (it had been sitting in the 150s before) and his EKG was abnormal.  After a hour of stumbling around to get it fixed (BIG difference between the floor and ICU...), they got him hooked up the the 12-point EKG and got the dreaded "adenaseen" medication (I have NO idea how to spell that).  Right before they gave it, however, his EKG started looking more normal, but his heart rate stayed in the 220s. 

We finally got a bed in the icu where they started to give him a medication called a beta blocker. This med actually blocks some of the electrolytes that help the heart beat. By doing this, it slows the heart down and hopefully decreases the chance of the arrhythmia from happening again. This was done through his IV and within another hour, he was looking much better with a heart rate of 130.

Now, the plan is to decrease the IV beta blocker and start him on a new oral version. Also, we will have to address the other symptoms at some point. Hopefully, we will be out of the ICU soon.

In the mean time, here are some pictures of what we have been up to.

Our little man sleeping.  I love this one!!

This was during his sedated echo-when we gave him his medication (Adavan), he  moved into this position and no matter what any of us did, he stayed in this position.  Since this was a good position for the tech, we let him be. He just looks awkward...

Photo shoot! Top left-half smile, top right: "the stink eye," Bottom left: Cranky pants, Bottom right: content

Joshua looking at his toys!

We love having visitors!  Here we are with Aunt Rebecca and her good friend, Taryn.