T.R.O.U.B.L.E.

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! 

 I LOVE IT!

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 :) 

Milestones

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!

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.

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. 

TOYS!

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. 

On the mend

Yes, we are home.  I haven't gotten a single second to myself to update the blog, but we are home and Logan is doing SO much better. 
So what is the scoop?  A big fat ? Still not sure what was going on with our little guy this weekend.  It kind of felt like a guessing game all weekend.  The doctors were all grasping at straws to give us answers, but bottom line might be there are no answers.  It is the general consensus that it was probably just a virus that caused him to spike his fevers, which then caused him to not want to eat or drink, which then made him dehydrated which caused an elevated HR and decreased blood volume leading to lower saturation levels.  It is a vicious cycle, and it can get out of control fast.  Lesson learned... I will do whatever it takes to keep him hydrated so we can avoid another 3 day hospital stay in the future.  His blood work did show he was fighting off an infection, but they were never able to pinpoint what that was so they gave him mega doses of antibiotics that pretty much wipe out anything, and once they were able to rehydrate him his HR stabilized.  They discharged us and we went right to his pediatrician who found double ear infections.  Yes, 4 different doctors looked in his ears at the hospital, but ear infections have a way of sneaking up fast.  Ears can be clear one day and have infections the next day.  His ped thinks they are just the tail end of whatever he was fighting.
So we are glad to be home.  He has been fever free since we left the hospital.  The hardest thing for me is I feel like we have taken 10 steps backwards.  All the progress we made over the last 6 weeks feels like it has been flushed down the toilet.  I was so excited for his 1 year well visit with his ped. to show him he was off oxygen, sleeping through the night, and done nursing.  Now none of those things are happening.  He is back on oxygen full time, sleeping horribly, and only nursing.  We'll figure it all out again though.  He is happy to be home, and we are so thankful he is okay.  His cardiologist called to check on him and again reassured me that his heart looks fine so that is good news.
So onward and upward we go.  We will take it as it comes.  This was our first ER experience and I'm sure not our last.  I will be more prepared next time ( the thought never even crossed my mind that we would be staying, I just wanted them to tell me his heart was okay then send us home).  But alas CHD is a bugger.  Even a simple virus can just wipe these kiddos out.  So back to life on chords and tanks and sleepless nights, but it will get better, and I love him even more. 
I'll leave you with this quote and a few pics of the cute little guy.  "...Heaven's kindness will never depart from you, regardless of what happens... bad days come to an end, faith always triumphs, and heavenly promises are always kept."  Jeffery R. Holland

It's just not fair... still in his birthday get up. 

 This was Monday morning after a very long night for both of us!

 We were on contact precaution the entire time since they didn't know what he had, so we were never allowed to leave the room.  It got pretty boring.

 A cup and tongue depressor was the favorite toy.

A visit to the Hospital

I planned on the next big post being about all the fun and parties for Logan's 1st Birthday, not a hospital stay.  Needless to say his birthday weekend didn't really go as planned!  Isn't that how life goes though?  No matter how much you plan or do it is ultimately out of your control.
He had a few good hours of his birthday.  We did get to run the IHH (Intermountain Healing Hearts) 5k Saturday morning.  We had awesome t-shirts letting the world know how proud we were that it was our Heart Hero's Birthday (I will post pictures when I am at home and can get to them).  Logan was great all Saturday morning.  We came home from the run, he had some lunch and I put him down for a nap.  We had his little heart buddy Severin's family over for a BBQ after the race and we woke Logan up so we could do presents and cake and ice cream.  He wasn't really interested in either and the more I held him the hotter he got.  About an hour after he woke up his temp had climbed to 102.5.  I freaked out.  He has never had a temperature in his whole life.  So I ran him to the pediatrician.  I figured if it was ear infections or something I wasn't going to make him wait it out.  Other than a high fever everything else was okay.  He didn't have a runny nose, ears are clear etc.  So they ruled it a virus said give him Tylenol and ibuprofen and keep his temp down.
We were up every hour Saturday night.  The poor little guys was just miserable.  His fever finally broke around 4 am and we thought we were over the worst part.  Sunday morning he ate breakfast, played with toys and seemed just fine with no temp.  So we figured maybe he got too much sun Saturday and didn't drink enough.  Then Sunday afternoon his temp came back, but very low grade (99.5).  We were having 38 people over for his birthday party.  Hindsight we probably should have cancelled, but when he woke up just fine that morning it didn't even cross my mind.  And then by the time his fever came back it was 2 hours before everyone would be there, and I had SO much food.  So we had his party.  He gave us a few smiles and perked up when he got new toys, but I held him most of the time.  After everyone left he went down for a nap.  He woke up around 9 pm and when I picked him up he was on fire.  We gave him Tylenol and it wasn't helping.  We hooked him up to the pulse ox (we had him on it most of the day) and his saturations were still good but his HR was 215 bpm (his normal HR is 110-130).  Because of his little heart that made both Brad and I so nervous.  We had called the cardiologist on call earlier in the day when his HR was 190 and he said if it got higher we should bring him to the ER to be checked.  So there we were- it was 9:00 at night we were both in our PJ's.  Ashlyn and Tanner were both asleep.  We changed and ran out the door leaving a baby monitor with my neighbors until my dad could be at our house to stay with Ashlyn and Tanner. 
On the drive to the hospital Logan just got worse.  All day he had been able to hold his saturations and that was reassuring to us.  But on the drive he started de-satting.  When we left our house his sats were at 88% when we pulled up to the ER he was at 65%. 
One nice think about being a cardiac kid is you get a golden ticket in the ER.  I was crying when I brought him in and all I had to say was he was a cardiac kid and was de-satting with a HR in the 200's and I barely had time to sign my name before they had him in a room putting oxygen on him and hooking him up to all the monitors.  He was considered "status red" and we had several doctors in there within minutes.  They gave him a mega dose of antibiotics, did an EKG, x-rays, drew labs etc.  And all was a mystery.  The biggest concern was there was no obvious trigger point for his fever.  Nobody at home has been sick.  He hasn't had a runny nose, no ear infections.  His blood work came back showing his body was definitely fighting something with extremely elevated white blood cells, and it also showed he was dehydrated. 
They admitted us to stay the night.  It was a LONG night.  He was miserable.  He cried anytime a nurse or doctor even looked at him.  I think he remembers his last hospital stay.  When he saw the crib he FREAKED out.  He wouldn't let me put him in that crib for anything.  I finally asked around 3 am if we could have an adult bed instead and I would just lay down with him.  This worked a little better. 
So here we are.  They are ruling a lot of things out, but still don't know what is causing our little guys so much trouble.  There was a debate as to which team of docs would take care of him.  Cardiology or medical.  After the x-ray and EKG it was determined that this wasn't heart related (sigh of relief) so the medical team took over.
We begged the doc to let us come home yesterday, but he wasn't comfortable with that.  Logan still needed IV's to keep him hydrated and had developed lovely diarrhea.  Logan is on his typical hospital hunger strike- the only way he knows how to rebel against being here.  So with that and not eating it isn't a good combo for staying hydrated.  We were so glad the doc didn't let us go home though.  I had run home to have a shower and grab a few things (we didn't pack anything to stay and Logan pooped all over me).  When I got back his fever spiked again.  So we stayed the night again keeping him on fluid and oxygen.  He has required at times up to 3 liters of oxygen to keep his sats above 75% and the doc didn't want to send him home on that much oxygen either.
So here we are Tuesday morning.  He had a GREAT night.  We actually slept.  When we were asking to go home (mostly because we knew Logan would sleep better at home) the doc said he would tell the nurses not to do vitals during the night so they weren't always waking him up.  That made a big difference.  He stayed fever free all night.  More tests came back negative.  They gave him another mega dose of antibiotics last night.  They have been able to turn his oxygen down to 1/4 liter.  We tried room air and .12 but he can't quite hold his own on that yet.  This is better than 2 liters though.  So I think they will let us come home today.  His throat is red now, so it is determined that he probably has some virus that would effect most of us as just a sore throat.  Seems kind of silly that a sore throat can land you in the hospital, but with Logan's little heart he just doesn't have the reserves that a heart healthy person does to fight these blasted viruses.  I keep asking if he is going to land himself a hospital stay every time he gets sick and the answer was probably not every time, but probably more than the average kid. 
Here is to hoping we will be home soon!

Today

Dr. Mr. Logan-
I just wanted to tell you how much I enjoyed my afternoon with you today.  Usually you are taking your nap when your brother and sister are at school so I use that time to get things done around the house.  But today you decided you would rather hang out with me.  I was okay ignoring the laundry.  We had a great time playing.  We practiced saying "mama" and giving kisses.  I lifted you up high to touch the tree painted on Tanner's wall that intrigues you so much, and while we were on the bed we were naughty and jumped on the bed just like monkey's do (you laughed and laughed).  I let you make a mess in Tanner's room, and we drove his cars all around.  I tried to show you how to crawl by crawling everywhere myself, but you still were not interested.  You would look at me and laugh and then get mad you were on your tummy.  I of coarse would give in and pick you up.  We shared a cookie (but not until after we ate our vegetables).  We read a few books, and snuggled a whole bunch.  It was a perfect afternoon.
It is your Birthday on Saturday.  I can't believe you will be ONE.  For some reason I have been really emotional getting ready for this big day.  It has been an unbelievable year.  As part of your birthday celebration your dad and I have been putting together a video of your first year of life.  Seeing all the pictures I have re-lived so many precious, precious moments of your life.  You are a MIRACLE, and my HERO.  Thank you for choosing me as your mommy.  Let's have another afternoon date again sometime soon!
I love you little guy.
Love-
Mom