The Journey of a Sweet Little Boy and His Special Heart

Sunday, December 18, 2011

Look Who's Walking!

I know it has been awhile.  I keep telling myself these happy times are the times to be documenting.  We don't want to only remember the hard times of sickness and hospital visits, but the good/ fun times too.  Logan started walking the DAY after he got his tubes.  NO exaggeration.  We were all standing in the kitchen eating grapes and he decided he wanted one so up he went and walked right to Ashlyn to get one of her grapes.  The kids and I just sat there with our mouths open all wondering if that really just happened.  Then we screamed and clapped and made a huge deal of it.  We sent pictures to Dad at work, and got the video camera out.  It was a happy day.  Although after this he COULD walk, he still chose to crawl for the most part unless we made him walk.  Then about 2 weeks ago he finally decided walking was cool, and is now all over the place. 
I missed posting all of our fun Halloween pictures, and fall outings... maybe I will catch up soon.  We have LOVED not having ear infections.  The tubes have made a world of difference.  I think we have only been to the doctor for synagis shots and follow ups for his tubes.  His balance and equilibrium seemed to improve drastically by the tubes, we were hoping to see some improvement with his speech also, but that is coming a little more slow.  He signs and makes animal noises, but doesn't have very many words.  It will come though, and he seems to be improving each week.  He is at the tantrum stage because he knows exactly what he wants, but doesn't have the words to tell me. 
We are excited for Christmas this year, and have really enjoyed time together as a family.  I often find myself thinking back to Christmas last year.  We were preparing for our trip to CHOP for his surgery,  leaving 2 days after Christmas.  It added a whole new dimension to the stress of the holidays.  But it also added a different feeling to the season.  We weren't worried about presents and parties, we were 100% focused on family.  I would never want to relive this past year, but upon reflection I would never trade the experiences we had for anything.  I have the most tender feelings when I think about all of it. 

I love this picture of Logan with my Mom.  He absolutely adores her, and she is pretty fond of him too!  She has come out to our house EVERY Sunday to watch Logan so Brad and I can go to Church with Ashlyn and Tanner.  (We tried taking him for a few weeks, and he ended up sick every single time).  Today when we got home from church they were sitting on the couch together, and my mom said, "He didn't eat his lunch very well, but he wanted a cookie so I gave him one!"  No wonder he loves her so much!
He has a way of finding trouble and mischief anywhere he goes.  And by kid #3 I think I have learned to not freak out and maybe laugh about it and grab the camera.  I will be cleaning up messes regardless so we might as well have a memory to laugh about.  We have plenty of these.  He is constant entertainment (and a constant mess maker)!

Friday, October 28, 2011

Goodbye Ear Infections

Logan had tubes put in his ears this morning at Primary Children's Hospital.  Everything went really well.  We are hoping this helps him keep those blasted ear infections away that make him so miserable, and we also hope to see some improvement in his desire to walk and talk. 
The procedure was really as easy as everyone told us it would be.  The drama all came from my anxiety beforehand.  I was stressed out because they wait until 3 p.m. the day before to tell you what time he is scheduled to go in.  That is so inconvenient when you are trying to find places for your other kids to go.  When they said we were first case I was happy because that meant Logan had less time he had to go without eating, but also stressed because that meant we had to leave our house by 6 a.m.  That is a lot to ask a neighbor to be awake and take your sleeping kid at 6 a.m. not to mention a grumpy kid that had to be woken up.  Thankfully Brad's parents were willing to drive out here at 5:30 a.m. to stay with the kids and get them out to school and friends before they headed over to their shift at the Temple. 
I wasn't necessarily nervous about the actual procedure, but I was nervous how Logan would respond to being at the hospital.  I think he has a little post traumatic stress from all the previous hospital visits (I know I do).  He doesn't respond well to people in a full set of scrubs... they usually poke him :) and he remembers those hospital cribs.  My parents have a crib at their cabin that looks similar to a hospital crib (lighter wood and thin slats) he won't even go in the room with the crib, and has a full on panic attack if you try to put him in it!
The toys in all the waiting rooms kept him pretty occupied, along with watching Elmo on the Ipad!  I did ask that they give him versed to make the hand off a little less traumatic.  Brad didn't really want to give it to him, but I think it made it easier.  I really didn't want him scared by anything, and he would be if he realized a stranger was taking him from me.  By the time they wheeled him away in the wagon he was so relaxed and out of it that he didn't realize I wasn't with him.  We waited in the waiting room for all of about 20-30 min. until we could go back with him.  He was just waking up when we got there, and wasn't super happy, but apple juice calmed him right down.  He guzzled the first 4 oz. and then was mad that we wouldn't give him more!  All said and done we were in and out in about 4 hours... wish every hospital visit was that easy!

Tuesday, October 25, 2011

Baby Steps (delayed post)

I started this post right before we had a month of SICKNESS and I never got back to it until now!  Angee the Seattle pictures are for you!...

So some would say Logan is pretty attached to me, Brad would say I am just as attached to Logan!  We have been taking "baby" steps all summer to get to the point where both Logan and myself are comfortable with separation!  It started in July when we left him for the first time with a babysitter long enough to go to dinner and a movie.  This was a HUGE step- I had left him with others before this (Brad, Grandma and a neighbor).  But this was the longest and the first time anyone else had put him to bed... (should I admit I texted the sitter through the whole movie)!   Everything turned out great so we got a little braver and in August we decided Ashlyn and Tanner needed a day with us, so we left Logan with our neighbor ALL day so we could all go to Lagoon.  Then came the opportunity for me to have a girls night, and go to  Education Week with all my neighbors- this gave me the extra push to finally stop nursing completely.  He was upset about that for about 2 weeks, and let me know he wasn't happy with this, but we are over that hump now!  So I spent a night away from him and had a great time with the girls.  Over Labor Day I stayed at the cabin with Ashlyn and Tanner, while Brad and Logan got some good time together at home.  All this leading up to me finally getting the courage to take a trip with my hubby.  My neighbor offered us free airline tickets and told us we needed a vacation.  It wasn't the 10 year anniversary trip we were planning when we ended up taking Logan to Philadelphia, but it was a great escape.  My parents watched the kids and Brad and I took a 4 day trip to Seattle.  It was great and Logan and the kids did GREAT.  My parents are SAINTS, and I am so grateful we got to go.  We wanted somewhere close that we didn't have to spend all day traveling, and we didn't really care what we did, we just wanted to relax.  My goal was to get my blood shot, sleep deprived eyes looking normal again! Mission accomplished!  We loved the city, and did all the "touristy" stuff- the Space Needle, The Duck Tour (land and water machine),  A fun cruise (saw the house from Sleepless in Seattle, and went through the Locks- that was really cool).  We also did the underground tour, ate at lots of yummy restaurants (not a single chain restaurant), went to the movies, and shopped a lot!  Loved it all!
 What a beautiful city!  You can see Mt. Rainer in the back.  They say that you can only see this about 80 days out of the whole year.  We had fabulous weather.

Wednesday, October 5, 2011

Appointment Update

Logan had his check up with his Cardiologist yesterday.  Everything heart wise looked great.  His blood pressure, and EKG were good.  Saturations at 85% even with not feeling well.  Dr. Mack was concerned that he is a little dehydrated from all this gunk he has been going through.  He was very helpful in giving us ideas to try to get him to eat and drink more.  He made me feel like not such a horrible mom for the bad habits we are developing!  The only way I have gotten Logan to eat anything for the past 5 days is put him on the couch, get him interested in a movie, and then sneak a bite here and a bite there.  If I try to put him in his chair at the table he is crying before I can even get the buckles on.  So out of desperation to avoid a hospital stay for dehydration, I feed my child in front of the T.V.  A habit I know we will have to break when we can.  Dr. Mack was handing him suckers and saying do whatever it takes to get him to eat.  Dr. M was pleased with Logan's growth, and doesn't want to see him back for.... 1 YEAR!  Yes, can you believe it?  Maybe after we get this ear thing figured out Logan can just be a "normal" little boy and not spend so much time at the doctors office.  We discussed the timeline for his next surgery, and he is hopeful Logan will not need the Fontan before age 3.  He might even go until he is 5 before needing it.  Only time will tell. 
So for now I am going to try and not think about it so much.  Lately the thought of this next surgery has almost consumed me with anxiety and nightmares.  It has been hard watching (reading) about some of our little heart friends that have struggled so much with this surgery this summer.  We will cross that bridge when we get there.
We met with an ENT this morning up at University of Utah Hosp. and he has scheduled Logan to get tubes on November 1st.  Hopefully we can keep him ear infection free until then.  Brad and I both feel like tubes are the best option for him.  His body is revolting against constant antibiotics over the past couple of months (70 days of oral antibiotics since June and a round of shots).  He is still not himself, and his ears are clear right now, so I think his gut is just not feeling right.  He hasn't crawled around and played on the floor since Thursday.  He just lays around or I am holding him constantly.  I keep trying to tell him if he eats he will have energy to play, but he doesn't believe me :)
Best news though is his heart is functioning as it should, and we can deal with ears!  That is just "normal" baby stuff! 

Sunday, October 2, 2011


My little boy is sick, sick, sick.  And I am so tired of seeing him suffer.  It has been a LONG week.  First off, I took him to the Doctor 2 1/2 weeks ago and he had another ear infection.  We finished the 10 day cycle of the antibiotic and he was still acting like something was wrong so I took him back to the Dr. Wednesday afternoon.  Sure enough the ear infection hadn't cleared up (not a surprise since he has been on antibiotics almost constantly since June).  So our option was to try a stronger oral antibiotic or start the Rocephin shots.  We decided to try and avoid the trauma of the shots.  He had one day of the oral antibiotics until he came down with the stomach flu and couldn't keep anything down.  So I called the Dr. Friday to ask what I should do about him missing his doses of the antibiotic.  He wanted to see him.  So I took him in and somehow between Wednesday and Friday he developed an ear infection in the other ear.  So now we are dealing with DOUBLE ear infections, the stomach flu, diarrhea- oh and did I mention he is cutting his "I" teeth too.  My poor little guy is miserable.  We had to start the Rocephin Shots (antibiotic shots) since he hasn't really eaten since Thursday he can't take an oral antibiotic.  So for the last 3 days we have to go to the pediatrician for 2 shots a day.  Logan now cries the minute he sees the nurse.  It is breaking my heart.  He just wants me to hold him ALL day.  If Brad even tries to talk to him he will turn his head and look away.  So my house is a mess, I haven't put makeup on for 3 days now, and my poor kids are so stir crazy.  (Did I mention Ashlyn and Tanner had the flu too).  The silver lining... the kids were pretty good about making it to the bathroom.  We only had to scrub the carpet twice!
We are now going the route of tubes for Logan.  He has had 6 ear infections in 4 months (2 of those requiring 2 cycles of antibiotics).  We thought we had it figured out when we took him off dairy, but I guess that wasn't what was causing them.  We will wait to hear from Primary Children's tomorrow to see when they can get him in.  We have been working with his pediatrician trying to figure out how to avoid tubes and ANOTHER time having to be put under anesthesia, but I think it is our only option now.  Since June we have had 21 visits to his pediatrician- that is more than 1x/week.  INSANE!
We also see the cardiologist on Tuesday for his 6 month check.  I pray all of this is just "normal" baby stuff and not related to or effecting his little heart.  Wish us luck, and I'll keep you posted.

We have spent hours in the swing.  It is about the only place other than my arms that he isn't crying or whimpering.  He will let me push him for 30 min. at a time.  I just pull up a chair and push away.  Something about it must be soothing. 

Saturday, September 10, 2011


I know it has been awhile.  I guess you can assume that no news is good news!
Logan has been finding TROUBLE anywhere and everywhere all summer long.  He has no interest in walking still, but climbs on and into everything.  He graduated from Physical Therapy the end of August.  His therapist said she couldn't believe he was the same kid she had met just a few months before.  He has all the right skills for walking, he just needs the confidence and desire!
Here are a few pictures of his troublemaking!

When you ask him to smile (and he is willing to perform) he will give you this totally cheese smile! 

All of his jammies have holes and mud stains in the rear end because Saturday mornings while we do yard work we let him have his freedom in the yard.  He loves scooting through the flower beds smashing my flowers, picking the petals, eating the dirt etc. (Yes, he still prefers the butt scoot, although he is crawling more and more).

I haven't figured out why he likes to sit in drawers so much, but he unloads every drawer just to sit in!

He LOVES to read books.  He has a little reading chair and will sit and look at books and bring them to me one by one and then back himself up to sit on my lap. 

He has discovered how fun coloring is... all over my floor and cabinets.  Naughty boy!
 Not afraid of getting dirty!

Logan is always in on whatever action is happening.  He is so curious and you can constantly see the little wheels turning in his head.  We had a rough couple months of ear infection after ear infection with him, and we finally took him off dairy and went to soy, and he hasn't had an infection since we switched... that is good news!  We have seen his pediatrician every week since May- Brad is beginning to think I just like to go hang out there.  I am on a first name basis with every nurse in the office!  We are hoping we finally have things figured out, and we are hoping for a healthy winter :) 

Sunday, July 24, 2011


Logan seems to be hitting the "I'm growing up" milestones at an accelerated pace this month.  It is so bitter/sweet as his mom.  I am SO proud of him and thrilled at his progress, but also sad he is growing up so fast.  I think most mom's will agree that with baby #1 we are so excited to see the next stage that we cruise through the baby years.  We are so anxious for the first words, crawling, walking etc. and then before we know it they are 6 and going into 1st grade and will be away from home 8 hrs a day.  So we learn with baby #2 to enjoy each stage and not be too anxious for them to grow up.  With Logan most likely being my last baby (sob, sob) I want to make each stage last forever, I wish I could freeze time and keep him a baby just a bit longer.  I love his little diaper bum in his sleeper jammies standing up holding onto the table.  I love his mama mama whine when he wants something (anything!).  I love his little butt scoot and missing teeth grin.  But this growing up business with Logan is bitter/sweet as I said.  Because as he grows and develops so fast he is defying all the odds placed before him with a single ventricle heart.  He is reaching milestones that every heart mom has to wonder if their child will ever reach because too many of these heart kid's don't get the chance to.  It is too real.  And I don't go a day with out being grateful that I have Logan here and I get to see him reach these milestones.
 This past month he has found his physical side!  I remember on his 1st birthday he was just sitting on the floor and his little heart buddy Severin (6 weeks younger) was climbing all over him.  Logan didn't even know how to respond!  He didn't know how to put his hands on the floor and move to his knees.  He couldn't go from laying to sitting and vise versa.  He could sit and scoot and that was it.  In 6 short weeks he has come so far!  We did start physical therapy with him and after seeing how to work with him he has taken off!  He is crawling now (only when we make him, he still prefers the butt scoot),  he is pulling himself up to standing (he can't figure out how to sit down though so he yells until someone comes to help him sit down) and tonight he climbed up the stairs with Brad just having to be behind him to make sure he didn't fall back.  ALL incredible milestones- maybe just ordinary baby stuff, but each milestone he reaches my heart swells with pride knowing all he has conquered to reach them. 

Maybe him being able to be more active goes hand in hand with his higher oxygen levels.  After his surgeries in January we had a hard time keeping his saturations above 75% on oxygen full time.  I honestly thought he would learn how to walk with an oxygen chord following behind.  I was ready to haul that oxygen tank around for the next 2 years.  Now he hangs out at 84% during the days (still needing a boost at night with O2).  I never DREAMED we would be able to take him to the cabin this summer.  But we DID!
His Dr. said he needs to stay above 75% (oxygen saturations).  We watched his levels the entire climb up the mountain and he settled in at 76%- elevation 7600 ft above sea level.... ROCKSTAR!  We could only stay a few hours and he can't spend the night, but we will take day trips as long as we can. 

 We have found Logan loves tools just as much as his dad and big brother.  He will never miss out on the action of fixing something.  If Tanner has the option of watching the repair man fix our washer or go swimming with his friends he chooses to watch the guy with the tools (just happened a few weeks ago).  I think Logan is following in the same footprints! 

We are having a fun and very dirty summer, and Logan is in the middle of all the action!

I will keep wishing the baby days could stick around a little bit longer, but I will celebrate EVERY single milestone, no matter how small, with this little miracle boy of mine!

Thursday, June 9, 2011

A Year Ago Today

It was a year ago TODAY, June 9th, that I had to hand over my baby for the first time to a doctor that I had just met, and trust he was going to be able to save my baby's life. I will be forever grateful for these GREAT doctors that have dedicated their life to saving others. I know each day is a gift, and I really try hard to cherish each one.

Our dear friends, the Jackley's, had to hand their baby Kellen over to an incredible surgeon also today so he could save his life. Please pray for little Kellen that he will have a speedy and smooth recovery, and that his mom and dad will have the strength to endure all that comes with post Glenn recovery.
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Logan's Birthday

Thank goodness we got some FUN memories of Logan's 1st Birthday!
IHH (Intermountain Healing Hearts) hosted their first annual 5k event on his birthday.  I wanted the entire world to know it was our little guys birthday.  How better to advertise that than with t-shirts.  My awesome neighbor spent all day helping me make these t-shirts for everyone to wear.  It was a lot of fun, and we were so grateful for those who came out to support not only Logan, but IHH. 

Thank you family!

Logan ate every one's apples and loved jammin' to Aunt Kambria's Ipod!

Our AWESOME suport group!
My mom and dad and nieces were there to keep track of the kids and my sister Kambria and Brad's sister Jill ran the race with us.
A group of Mom's/Dad's all part of IHH with their heart hero's.  I love that Logan will always have friends that he can relate too.  This group does so much for families. 
Bryan came and ran in honor of his Angel baby Logan, and he got the best smile out of Logan all day!  And Ivy is Connor's mom who is a HRHS little warrior too.

We had the Quist family over for a BBQ after.  Angee and I connected through IHH and her little boy Severin is also HRHS.  She has been a LIGHT and INSPIRATION to me.  She just "gets" me, all the crazy paranoid things that a heart mom goes through... she is an incredible support, and a dear friend.
Severin was climbing all over Logan and Logan would just give him strange looks!  Logan slept through most of the party, but Severin made sure to wake him up for cake and presents!

Party #2 with the family- he was so kind to share his cake with me.  This was when he wasn't feeling well so he wouldn't let me put him down even to eat his cake. 

Hard to believe he is ONE!  Harder to believe what he has been through is such a short life.  He is an inspiration to me every day.