The only thing I miss in Philly

Our dear friends the Jackleys.

Our first night staying at the Ronald McDonald House before Logan's surgery we met the Jackley family.  I'm not even sure how we got talking, but we soon found out Tommy and Stacie had just had a baby with HLHS, and were also at CHOP.  This cute family became our family and friends away from home (we even went on a few double dates to the hospital cafeteria).  We honestly wouldn't have gotten through our month there with out them.  It was no random event that we started talking that night.  I really feel like we were meant to be in each others lives. 

They were there for us on our hardest days, and I hope we were there for them too on their hard days.  It was so hard leaving them behind.   It would have been perfect to have been discharged the same day, but I got the best news yesterday that they are on schedule to be discharged on Monday.  (They were just moved into the same room we were discharged from.... that is a good sign)!

Brad and I would walk by Kellen's little crib several times a day and smile at his little duck bobbing up and down on his binky.  He is the cutest baby with the longest eye lashes I have EVER seen.  

When nobody could get Logan to crack a smile, Tommy always could.  

Maybe he liked them so much because they gave him this silly green Philly Fanatic.  Tommy is an avid baseball fan and couldn't let Logan go home without knowing what a Philly Fanatic is. 

On one particularly hard day for Logan, he didn't want anyone holding him, touching him or talking to him.  He just laid in his crib and snuggled this silly green animal that has lots of things to put in your mouth!

Kellen and Logan...

Little boys that physically might only have 1/2 a heart, but their hearts are bigger, better, and have touched more lives than any one of us can imagine. 

Tommy, Stacie, Kellen and Kaylin you will always have a special place in our hearts, we love you all.  We are so blessed to have met you, and are so excited for you to bring Kellen home.

Cardiology appointment

We had our follow up appointment with Logan's cardiologist here in Utah yesterday, and all looks good.  His lungs look great, and heart function looks how it should.  His saturations are still low, but manageable (averaging about 73).  He is having some withdrawal symptoms from being on narcotics for a full month so the doctor is helping us with a more gradual weaning schedule.  It was funny listening to the doctor try to tell us in a nice way that our son was having addiction withdrawals.  We have an 8 month old that is a recovering addict... as if there isn't enough for him to deal with.  It is such a vicious cycle.  But today has already been better.  He slept a solid 3 hours last night- that holds the record since we have been home.  My parents called this morning to see how the night went and my answer was, "I just feel like I was hit by a truck today, not hit and backed up over and hit again like I usually do)!
The doctor was comfortable taking his lasix down to 1x a day, and we will go back on Monday for labs to see if his potassium and sodium levels have improved.  The cardiologist doesn't want to see Logan for another 3 months- Brad and I sat there with our mouths open and asked 3 times if he was sure that was okay.  His pediatrician will see him every other week for awhile and we are suppose to call if anything changes.  He didn't have any answers on how long Logan will need to be on oxygen or if he will ever be off oxygen until his next surgery (it is different for every kid).  So we will see how his body adjusts and take it one day at a time.
But I guess overall it is a good report. 

Surviving

That is what we are trying to do... survive.  Brad went back to work yesterday so I have been flying solo during the days.  It has been a little harder than I expected.  Ashlyn and Tanner have been great.  They asked for lunch yesterday and it only took me an hour to get it for them.  My dad rescued them (and me) yesterday, and my sweet neighbor took both Ashlyn and Tanner all day Tues. and today.  Logan just requires MY attention 24/7- so many people offer to help, but he is a little stinker and doesn't want anyone else to hold him.  Brad's parents came by to see him yesterday and he would sit by Paula, but wouldn't let her hold him.  He let my mom hold him if she kept walking and singing non-stop... spoiled little guy!  I just keep telling myself it is temporary, and it is better than the hospital.  I did sleep better at the hospital though believe it or not- there I knew someone else was watching his monitors, now if his alarms aren't beeping at night to wake me up I am waking up to check why they aren't beeping!  His O2 sats still aren't great, and if he gets mad and cries a lot it takes a long time and lots of O2 to get them back.
We saw his Pediatrician on Tues. and his labs still aren't good enough to stop the yucky medicine, but everything else went okay.  He threatened Logan that if he didn't start eating something more than breast milk he would have to put in a feeding tube- he ate a jar of Sweet Potatoes the next day.  He has dropped from the 30th percentile in weight to about the 12th (12% is great for a heart baby, most don't ever make it onto the growth charts, but you just don't want to see it drop).  So we are working on any kind of food he will eat (even cookies)!

We get into our eating around here....

a jar of sweet potatoes was monumental though, it deserved a picture!

(and yes he did have a bib on at one point, but he ripped it off and it wasn't worth the fight)

 Ashlyn thought today if she showed him how it was done he could copy her- it actually worked.  He wouldn't drink out of a sippy cup before, today he did.

Finding our new Groove

I have sat down to type an update 20 times now, but keep getting distracted.  I have to do silly things like dishes and laundry now that we are home (I guess that is one benefit to living at the hospital- I never had to clean up after myself or anyone else!)  We are adjusting, and of coarse love being home.  I find myself saving the diapers for the nurses to weigh, and wake up in the mornings wondering if I have time to brush my teeth before the doctors come for rounds.... then I realize even though I am still not sleeping in my bed (I am on Logan's floor) we are still at home!
Oh, it is great to be home!  Where do I start.... Most importantly, Logan is doing so much better.  He is eating non-stop and smiling all the time- two things he hadn't done for the last week in the hospital.  It was a fun reunion with Ashlyn and Tanner.  They were asleep when we got home, and slept through all the kisses and hugs we gave them.  Saturday morning they were a little dazed when they saw us, but so excited.  They have wanted non-stop attention since we got home so it has been a bit of a challenge giving Logan the care he needs and entertaining them, but it is great.
Logan's last X-ray and Echo done Thursday at the hospital looked great so we started making travel arrangements- got the oxygen for the airplane overnighted, booked a flight etc. And then Thursday night his labs came back showing his potassium and sodium levels were too low.  ARGGG.... we forced the nasty tasting potassium and sodium down his throat all night (they are horrible tasting) and had labs drawn again Friday morning.  The levels were better, but still not where they wanted them.  I was so worried they wouldn't let us come home.  I assured them we had a hospital 5 minutes from our house and we could go back for labs that night if we needed to.  They agreed that Logan needed to go home too so they discharged us Friday afternoon in time to catch our 5:00 flight.  YIPEE!  The nurse couldn't believe they were discharging us on so much medication, but everyone agreed Logan needed to go home to start feeling better.  And he started eating and acting happier the minute we left the hospital.
He is still on Morphine around the clock, but we are slowly weening that.  And then of coarse is still on Tylenol, diuretics, potassium and sodium (we are hoping to drop those today).  His pain seems so much better now.  We are able to stretch it 5 1/2 hours between pain meds instead of every 4 hours (and have come down on the dose).  And we took him in for labs this morning so I am waiting to hear if I can stop the potassium and sodium.
Getting the oxygen figured out has been a bit of a challenge.  We had Praxair here 4 times this weekend.  After a machine that needed service, another one that smelled like an ash tray, needing a pediatric flometer and humidifier- we are finally figuring it out.  As long as we stay upstairs it really isn't too bad, but taking him downstairs is an event. 
We are slowly figuring out our new "normal."  I have no idea when I will be able to make it back to the gym to teach my classes ( I am hoping soon), but as for now I sleep with one eye open and don't go far from my little guy. 
Thank you everyone for following Logan's Journey.  I know you have all prayed, cried, and rejoiced with us along the way.  We have had so much support and love.  Thank you.  I can't explain how it feels to see him smiling and happy again. 

Packed up and ready to leave the hospital.  He was excited to be in his car seat again.

 Did I ever tell you about the security at the Hospital?  We had to pass through no less than 6 security guards to get to Logan, and to get to the parking garage was a joke.  After a month I still couldn't remember how to do it (granted I didn't leave very often)!

 Snoozing at the airport. 

The flight and everything went surprisingly smooth.  Yes, we were on the very back row of the plane, but we were coming home so who cares... nothing could have gotten our spirits down.

 Ashlyn and Tanner kept calling us Grandma and Grandpa on Saturday.  It was pretty funny- they have quite a bond now. 

 Look at this new kid... this is after being home for one day... all smiles and playing.

 Our little Rockstar!

WE ARE HOME!!!!

Yes, I am sitting in the office of my house writing this.  It is late.  We are exhausted, but I had to let you all know we are home.  We weren't sure it was going to happen until 12:00 this afternoon so we didn't jinx ourselves and let everyone know.  We got the last tickets on the 5:00 pm flight, sat in the very back row, spent a small fortune on oxygen for the airplane, but it was all worth it.  Logan ate better on the airplane then he did the last 3 days put together in the hospital.  My kiddo is returning, he just needed out of the hospital.  UPdate to come.

Should I be worried

that I left my children in his care???

 How many Grandpa's would give up sleeping in their bed for an entire month and taking on the hardest part of kids (bed time and breakfast)?  My kids have the best Grandparents in the world.  My dad has been holding down the fort at our house with some daytime rescues from Grandma and Brad's parents.  When we started making arrangements to come out here I thought I would have to find a place for my kids to stay for a few days at a time.  My dad called and said he would stay with them at our house to keep them in their own environment and on their own schedule.  This has been so nice.  There has not been a single day we have been gone where I have been stressed out about where Ashlyn and Tanner are and if someone will forget to pick them up.  They have been spoiled, loved, and spoiled some more!  They call us every morning when my dad is making breakfast- today they got chocolate chip pancakes (Ashlyn informed me Grandpa makes them better than I do), and most mornings they get Grandpa's famous eggs.  He even puts up with Ashlyn's middle of the night visits, and Tanner's excuses of why he can't go to bed.  Grandpa plays non-stop with them.... we are just keeping you young Dad!

 But Grandpa could never do it without Grandma.  My mom has to work still so she isn't sleeping there, but she is helping every day.  I think Grandma picks up the "mom" pieces... laundry, cleaning, cooking, but especially spoiling!  The kids have a new collection of stuffed animals, beads, books, and I'm not sure what else thanks to Grandma! 

 Grandma and Grandpa with Logan the day before we left (feels like a really long time ago).

Brad's parents have been amazing too.  I lucked out with the best In-laws ever.  They call my parents several times a week and take the kids for the day.  Tanner loves his Tuesdays with Grandma reading books and playing, and building blocks with Grandpa.  We couldn't be here without these guys.  So many times when I can tell my dad needs a break from the kids Leigh and Paula will call and offer to take them for the day.  Thank you, thank you, thank you for your help and for loving my kids.

Faith, Prayers, and Feelings

I have been thinking a lot about faith, prayers and my feelings this week.  I have an on going battle in my head on how I feel about all that has gone on this month.  Some days I feel at peace, other days I am mad, but mostly I am sad.  Not sad for me, but sad for Logan.  I don't care if it becomes a full time job taking care of Logan's medical needs, if it drains our savings, and if I don't sleep at night ever again.  The hardest part for me to come to grips with is knowing a little of what Logan is going to have to battle the rest of his life. That is what breaks my heart. 

Ever since we learned of Logan's heart condition I have had a sense that Logan knew before he came to Earth to get a body that his body might not be perfect.  He has been an extra special spirit from the moment he was born.  Relying on those feelings through this brings some comfort, but it doesn't make watching my baby suffer any easier.  I  feel like Brad and I have tried to make God a part of every decision we have made for Logan.  So when things didn't turn out how I thought they should it has taken some soul searching to accept this and not be too discouraged.  I say too discouraged because I would be lying if I said I wasn't discouraged at all. I have had my share of meltdowns in Brad's arms asking why if SO many faithful people were praying for Logan, WHY didn't it work out how WE all wanted it to.  But I find absolutely no comfort in questioning why, this only seems to make things harder.  The only comfort I have been able to find is when I think how perfect and sweet my little Logan is, that Heavenly Father must know better than I do.  And that I must need to figure out His will and accept that.  When I stop trying to solve everything myself and just let be, be- that is the only time I feel peace.  So I don't really understand how faith and prayers work- I only know I am not the one in control. 

 This has been my view as I've been writing.  My sweet husband getting his snuggle time with Logan.  He has to keep Logan's back to me because if he sees me he won't let anyone else hold him.

Being so far from home and only having each other to rely on is a true test of love and friendship.  Brad is STILL my very best friend, and our marriag is only stronger.  My sister keeps asking me if we are sick of each other yet... my answer is no, I guess you'll have to ask Brad what his answer is.

A better day

I am happy to report today is better than yesterday.  We were moved this morning to a private room (that could have something to do with the crazy mom that was crying all night and that hit the nurse button no less than 10 times to let them know the other baby's monitors or nurses had woken Logan up... yet again.) They moved us at 7 am when another baby was transferred- the squeaky wheel gets the oil right?  So we didn't get any sleep last night, but Logan is making up for it with plenty of good naps in our quieter room now.
Logan is staying about the same.  I can't get used to his new blue look.  It catches me off guard sometimes when I am looking at him.  His eyes, lips and ears are the most noticeable and then his little finger tips.  I hope he is able to adjust and feel comfortable with is new levels so he can feel like smiling and laughing again.  We haven't gotten any smiles out of him today.

Maybe one of these days we will get the dot stickers even!
We had to increase his oxygen today.  They tried having him on room air yesterday, and he didn't do well.  So he is back on 1/4 liter keeping his sats around 75-77%.  We are really hoping for those to improve.  I think he just needs a good dose of Ashlyn and Tanner to get his lungs working a little harder! We have an echo and x-ray scheduled for tomorrow- crossing our fingers all looks well.

I was going to name this post "today sucks", but Brad won't let me.  I said it anyway.  I knew I shouldn't have mentioned the word "home" yesterday... I was warned it only causes set backs.
I am really pessimistic today and really, really grumpy- just warning you.
Logan had another little episode today of de-satting and taking too long to come back.  He was just relaxing in bed and his O2 sats dropped to the 50's and took too long to come back up.  Since this has happened two days in a row we can no longer rule it as a fluke thing.
We were also transferred out of ICU today.  This was suppose to be a positive thing, but I am so emotional about it.  They put us back in the same room we were in the first time they transferred us to the CCU- the same room Logan crashed and went into heart failure.  The room just gives me bad memories.  I cried the moment they moved us here.  I don't like being back here.  I don't like that we have to share the room.  The cute baby that we share the room with is adorable and has damaged vocal chords (how sad is that) so it isn't even that she is noisy.  I just HATE not having any privacy or space.  Logan hates change and never transitions well.  He has not been eating well at all today, and had lost weight when he was weighed today.  This is a rollercoaster I am SICK of riding.  I am tired of seeing my baby so miserable.  I think our friend Tommy is the only person that got a smile out of Logan today.  He is tired of being here too.
I'm not sure what else there is to do for him.  He is already at a single ventricle physiology so waiting for his sats to come back up just might not happen.
So that is our day.... I know there are a lot of people worse off then us, and I know I should feel blessed.  But today I am just not feeling it.

One Week

Today marks one week since Logan's latest surgery, 20 days in the hospital (13 of which have been in ICU), and 3 weeks since we left home.  I don't think we will ever forget January 2011. 
We were on the list to move out of ICU today, but then this morning Logan's saturations dropped drastically and his nurse panicked because it took way too long for his levels to come back up.  (Brad and I think it was just a bad reading, but they don't take any chances in the ICU).  So she went and got the doctor and they all came to check him out.  After another X-ray and getting his labs they decided all was okay.  His heart function looks as it should and his lungs are clear.  Dr. Rome also came in this morning during the 30 min. when he was really unhappy (he had just gotten his pain meds and they needed to kick in) but he was not happy that his sats were still as low as they are and that he is still in so much pain.   So we are still hanging out in the ICU.  On a positive note though, he is eating so much better.
Logan is sleeping most of the time.  We try to stretch out the time for pain meds from 4 hrs to 5 hrs, but we have only made it to 4 1/2 hrs.  We get about an hour of eat and play time before he is ready for another 2 1/2 hour nap.  Things are pretty exciting around here.  We went out to get some fresh air during one of his naps and it was SO cold we ended up running just to keep warm.  The University is in full swing now.  It is crowded and crazy on the streets.  I can't believe how young college kids look... when did I get so old?  I think I have aged 10 years this past year.
We did hear the first words about plans of going home today.  The doctor said he would have someone come work with us on figuring out how to get oxygen for the flight home.  Brad did glance at available flights for the end of the week, but we aren't holding our breath.  We are doing our to not get stir crazy.

Logan relaxing getting his O2 tubing wrapped all around himself.

 We have probably started a really bad thing...cookies.  Brad is to blame, but it helps keep him calm enough for a blood pressure reading- sometimes!  He now watches everything that goes into our mouths and waves his arms if he sees cookies!

 A walk around the CICU... yipee!  He has officially won the award for cutest baby, and it is now a game to see how many nurses or doctors can get a smile out of him.

 "If daddy eats me, I'll pull his hair!"

 A change of scenery... the floor.  It makes playing with toys more fun (and I don't have to do the laundry to wash all the blankets we sat on).

A quiet Sunday

It has been a relatively quiet day today.  I find it hard to believe we will have been away from home 3 weeks tomorrow. 
Logan has had a better day today- thanks to Morphine.  I knew all day yesterday the medication they had him on was not working, but the nurse kept trying to convince us it was working.  I finally demanded we go back to morphine, and now today she apologized for not listening to me sooner.  He is having a much more peaceful day.  He is sleeping, and isn't sleep the best thing to heal the body?
His swelling is going down in his head.  We had to put new stickers on his face today to hold on his oxygen because the old ones had moved so close together from his head getting smaller.  He is down from 4 liters of oxygen to 1 liter of oxygen.  They have been weening that slowly each day, but yesterday he couldn't tolerate it at 1 and today he is doing great with it (his sats are between 75-80%).  He also started nursing today for the first time in over a week!  So the doctor let us turn off the IV's. Yeah!  One less thing to get tangled up in (you only understand if you've tried to hold a baby hooked up to a million different things, it can get to be a really tangled mess).  Tomorrow will be one week from surgery #2.  They usually see the pain under control from this surgery a little sooner than this, but Logan is recovering from 2 surgeries so that could be the reason.  He will start feeling better soon.  We hope to be transferred out of ICU tomorrow- that is one step closer to home.  Eating was a big milestone, once we get the pain under control and oxygen sats a little higher we should be good to come home.  I am so anxious to come home, but so nervous at the same time.  I wasn't prepared to bring Logan home a single ventricle baby.  I have to admit I am scared, he is so so fragile.  I don't know how I will balance life anymore.  I would like to think things will just go back to how they were before, but I know this won't be possible at least for awhile.   
Sunday's seem to be the day when the most visitors come to the hospital.  It was busy around here today.  I only got sad when I saw the Grandpa's with white hair... it made me sad Logan's grandparents can't be here to hold and snuggle him.  I am sure they will make up for it when we get home.  We joke that his grandma's are going to have to take shifts just sitting and rocking him because he is so used to being held all the time now.  I know both Grandma's would not oppose the idea. 
Ashlyn and Tanner got to take a road trip with my parents to Wyoming to my sisters house for a baby blessing.  The whole family called us via Skype and sang us crazy songs and got to see Logan at one of his better moments.  It was fun to see them.  Ashlyn and Tanner have been kept really busy.  The only thing that makes missing them bearable is knowing how much love and attention they are getting.  It is funny, every time we talk to them they don't really care about seeing Brad and I, they only want to see Logan.  He will probably have culture shock when we get home from all the attention he will get from them!
A few pictures from yesterday...

Our trick to getting food in Logan yesterday was distraction at its finest!  We would sit him up and let him watch Baby Einsteins while we tried to get him sucking on the bottle.  Sheesh... the hoops we jump through for this kid to eat!

 Baby Einstein NEVER gets old to this kid... Mom and Dad on the other hand want to pull their hair out!

 He still has his chubby little legs!  ( a rare thing in heart babies)

 Getting kisses from Mom, and his oxygen hanging out of his nose!  His head is shrinking!

 We were so excited to see him sleeping peacefully last night after we changed over his meds.  It was the first deep sleep in a day and a half.

 Brad tries to act tough, but he really is a softy!

 Trying to keep Logan calm (yes, again with Baby Einstein) for a blood pressure.  He is probably going to associate those movies with pain after this.

A Right to be Grumpy

Mr. Logan is having a grumpy day.  We aren't sure if we are getting him the right meds or if he is just done with being here, either way he is grumpy.  I wish he could tell me if he was in pain or just annoyed.  His nurse was giving him a hard time about being grumpy, and I let into her.  I said you try being happy after having two surgeries in two weeks.  He doesn't have to be happy, and he has every right to be grumpy.  Sometimes I think if they get one smile out of a baby that all is well and they start backing off everything.  I think we all might be a little grumpy today.
A bright spot of our day was Brad's sister Erin and her family came for another visit.  It was fun to interact with their kids, and Logan loved their 6 year old Sydney singing to him.  Logan was having a rough bout when they were here, but it was still a nice visit.
He is back on IV's because he didn't eat anymore yesterday, and he is having a really hard time sleeping.  He was awake from 1pm yesterday to 10:30pm- today hasn't been much better.  It is a vicious cycle with pain.  You want to keep on top of the pain meds, but too much is bad, they also cause constipation which causes more pain, it is so hard to find a balance.  Poor little guy.

Baby Steps and Pictures

Logan is taking baby steps every day.  The littlest things are HUGE!  And as long as we keep going in a positive direction little steps are okay with me.

This is how we have spent the last 4 days... in the rocking chair (my rear end is going to be huge).

Tuesday (1 day post-op)

 Wednesday (2 days post-op)

 Thursday (3 days post-op) Looking so much better today.

 We call his IV hand his club.  It works great to hit people away!

 Logan showing his feisty side.  He got a hold of me and wasn't going to let go for anything!

He finally let dad hold him again!  Dad doesn't have the attention span to sit in a chair for hours though.

He even snuggled with his nurse Rachel (after I saw this I was able to leave again for another night of sleep).

Friday (4 days post-op).  Today has been a good day.
He ate 2 oz. Wednesday, 4 oz. Thursday, and so far today has eaten 5 oz.... we are trending in the right direction.  Keep going buddy!  He is also off all his sedation medication and going 4-6 hrs between pain meds.

He has sat up in his crib on his own today and played for a minute.  This is HUGE progress.

Ashlyn mailed us these pictures.  They brighten our room.  We have had fun talking to the kids on Skype.  I have been able to read them books, they sing us songs, Ashlyn plays the piano for me.  It makes missing them bearable.  And we keep sending stuff back and forth in the mail.  I never dreamed we would be here long enough to even be able to send and receive mail!  We will be out of here before we know it.



I miss this...

(I wrote this post on the 7th and forgot to post it, so it is old, but the pictures are cute)

And this....

I want to snuggle all my babies!

This is my selfish post.  Everyone keeps asking how Brad and I are doing.  Honestly, we are doing okay.  My sister can't believe I'm not bored out of my mind, but the days pass rather quickly.  When Logan is awake he has both of our undivided attention.  We have gotten pretty creative in entertaining him especially when we were on quarantine and couldn't leave our room.  It is a blessing that he likes watching TV, and these cribs make for some pretty rockin' peek-a-boo!  I have only read about 20 pages in my book- I usually blog when he is asleep.  I like keeping you all informed, but it is also therapeutic for me.  I don't even know what day it is today, so if I tried to remember all of this to write down later I would forget everything!

But I miss my Ashlyn and Tanner like crazy.  We talk to them in the morning when they wake up, and at night before bed.  Some days they are silly and crazy.  And some days they are somber and quiet.  They have just started asking us when we will be home.  I cry a lot after I talk to them.  But I wouldn't change it.  They are having such a great time with their Grandmas and Grandpas.  They are spoiled and are keeping busy. 

Ashlyn always loved taking care of Logan (a little too much).  She has had to find different ways to use those "mothering" traits.  My parents dog Haddie is filling that gap with Logan away.  Ashlyn loves Haddie.  She dresses her, tries to carry her, snuggles with her, and Haddie loves it all.  My mom says when Ashlyn gets sad Haddie always cheers her up.

She is also taking great care of Tanner. 

I am getting a little bit of dog therapy here too.  This sweet poodle is a therapy dog.  His owner comes every Wednesday just to the cardiac floor to visit the patients and families.