Our First Taste of Spring

It is raining and cold today, but we did get our first taste of Spring last week (we really wish it would stay).
Logan thought he literally needed to "taste" Spring-  I think he decided the dirt didn't taste like chocolate!

When people ask me how Logan is doing now I don't hesitate to say "Great."  Before I always wanted to say say fine, but....... there was always a but.  Now I feel like we are in a really good spot.  He is "pink," he is chord free during the day, and he is happy and growing like a weed.  We are thrilled and plan on enjoying this time to its fullest!
Happy Spring!

A Heart Mom Weekend

I have been trying all week to sit down and write about my weekend, but of coarse life never ceases to slow down.  I am finally getting around to it as another weekend passes.
I always talk about the AMAZING heart mom community I have found, and the great support I get from other moms.  This weekend I was able to meet so many of these moms.  It was my Heart Mom Weekend!
Friday night I went to dinner with two heart moms, Liz and Heidi.  It was the first time I had met them in person, but it felt like getting together with old friends.  Liz heard about Logan when we were in Philadelphia and reached out to us sending him one of her darling Jakey Blankies.  I have been in touch with her ever since (she is from Arizona).  And I met Heidi through Liz (she is also from Arizona, but currently living in Utah).  Both of these amazing women have Angel babies that earned their wings way too early.  I was humbled sitting at the table and hearing their stories.  I have to tell you a cute story.  I was reading Heidi's blog about her Angel Jersey a few nights before, and Logan was on the floor destroying the office minding his own business when I pulled up a picture of Jersey he stopped pulling the books off the bookshelf and started waving his hands at the computer.  He scooted right over to me and had me pick him up- keeping his eyes locked on the computer the whole time waving and talking to the picture of Jersey.  I sat and cried as I watched him.  It was like he knew exactly who she was.  I don't doubt for a minute that Logan has had Angels at his side so many times in his life.  Maybe these little heart Angels take extra care of our Heart Warriors that are still able to fight. 
Heidi and Liz are incredible women who have had to endure so much.  They have endured it all with grace. I left Friday night feeling extremely humbled and blessed.  This world of CHD is heartbreaking... literally.  I came home and held my Logan extra tight (he was the only kid still awake) and I took an extra moment to watch Ashlyn and Tanner sound asleep in their beds that night.  I will embrace Ashlyn's intensity in life and Tanner's "never in a hurry"approach to life, and never take the health of my children for granted.  
Saturday was the Heart Mom Luncheon for a group we are part of called Intermountain Healing Hearts (IHH).  It was a luncheon honoring all the mom's of CHD warriors.  We were able to bring someone with us who has been a support to us through everything.  I was so grateful to be able to take my mom with me.  It was overwhelming being in a room with so many women who you can relate to on SO many levels.  I was so emotional hearing about all the CHD warriors.  I did cry a lot (who is surprised), but they weren't all sad tears.  I walked way from the lunch with HOPE.  I talked to a mom with an 18 year old with HRHS and he was just given the thumbs up to start his mission papers.  HOPE.  I talked to a mom who's son in 18 months with HRHS and is so active and healthy she can't keep up with him.  HOPE.  I also talked with moms that have Angels in Heaven and my heart broke over and over.  It was so great meeting all the different mom's of heart babies I have followed from their blogs.  We are all fighting the same fight regardless of the exact diagnosis and it was great to feel everyone's heart.  My mom couldn't hear a lot of what was said (she is hard of hearing and the mic wasn't especially loud) but she said to me as we left, "I couldn't hear everything, but I could feel the tenderness of their Spirits."  Every mom wants what is best for her child and will do anything for them. 
You have those "why me" moments sometimes and "why my baby."  I had a perfect pregnancy with no complications- I am healthy.  So why me and not the girl that drank her whole pregnancy.  But then you stop and think I am SO glad these babies came to families who care and who will do what it takes to give them the care and love they need.  Ashlyn said to me the other day, "Mom, we must have a really special family for Heavenly Father to have sent us Logan with his special heart."  I said yes, we are a special family and Heavenly Father knew we would take good care of Logan and his heart, but he also knew we would take extra special care of you and Tanner too.  They are just as special and I am so grateful they are healthy- I realize what a blessing that is.
To all these amazing women who know exactly how it all feels.... from handing your baby over for surgery, to living in the hospital, to sleepless nights, chords and medications, to smiling and not hitting that person in the face when they say, "oh so your baby is fine now right?" to the endless worry and doctors appointments, to the celebration of every pound gained. Thank you for making me feel like a normal person again and like I do fit in somewhere!

San Diego

At Logan's last cardiologist appointment the doc said take a vacation... so we did!

I needed sunshine, and Logan needed somewhere close enough that we could drive.  So off we went to San Diego.  Logan was a pretty good little traveler.  And his little heart thrived at Sea Level.  He was off oxygen the entire time, even at night (sats around 84% asleep so probably even higher awake- he just never held still long enough for me to get a good reading when he was awake).  

 

It was overcast most of the time which ended up being a blessing.  At first I was really bummed about the weather, but then we saw how sensitive this little guys skin is, and I am so glad it wasn't blazing hot the whole time.  With 50 SPF sunblock applied throughout the day and a hat at all times he still got sunburned.

The cutest little tourist you have ever seen!

I got my CHD heart necklace right before we left.  Logan loves holding on to it (and loves to try and get it into his mouth).  I know it is no secret that I absolutely LOVE this little boy.

He perfected the art of waving (beauty pageant style) and clapping while we were there.  He loved waving at all the people and when we would clap during the shows he would grin and look around wondering what he did that was so cool (we always clap for him when he does something exciting).  He would light up every time we clapped and would start clapping too. 

Ashlyn and Tanner had such a great time and didn't ever stop going until they crashed in bed every night.

Traveling with a baby is never easy- a baby with health issues and a paranoid mom is even harder.  Thank goodness we had Grandma and Grandpa to help out.  We couldn't have made it without them.  They SAVED us and saved our kids from us.  Ashlyn and Tanner stayed in their room with them so when Logan was up every 2-3 hours during the night he didn't keep them awake (yes, he really was up that much... little stinker)!  And they LOVED being with Grandma and Grandpa.

Logan LOVED the beach.  He would scoot around in the sand and it was priceless watching the sheer joy on his face.

Check out his "bum print" behind him.  He is still scooting on his little bum everywhere he goes.

One happy kiddo!

It was great to get away and feel somewhat "normal"- for us and for Logan.  I know as Logan gets older we are going to have to find that delicate balance between protecting him and letting him live a normal life.  It was great to get away and make so many great memories as a family.  I sometimes forget that the last year has been just as hard on Ashlyn and Tanner as it has for the rest of us.  They needed this vacation and attention probably the most. 

Diagnosis....

SPOILED! 

We had a week of doctors appointments- pediatrician and cardiologist.  What is the consensus.... Logan is SPOILED!  I like to look at it as overly LOVED!  They both told me I need to let him cry a little for both of our good!
We had GREAT visits with both doctors.
The best news of all.... We are oxygen free during the days now.  His Cardiologist was so happy with his growth and progress he really wanted him off his oxygen during the day (he is still on it at night and while sleeping).  Brad and I have been weaning him slowly (he was down to 1/8 Liter).  I was extremely nervous to take him off it completely though.  I badgered his doctor with SO many questions and concerns.  He kept reassuring me that Logan was doing SO well, and that his saturations being in the 70's is okay and won't result in brain damage (calling me paranoid is an understatement).  Logan has done extremely well off the oxygen.  His color is staying "pink" most of the time, and he is so happy to not have a hose to hold him back from anything.  He is moving all over the place.  He does the butt scoot, and is so efficient at it that I wonder if he will ever crawl.  I have spent the week baby proofing the house, but have yet to "Logan" proof it.  This kid knows how to find all the "no no's."  Have you ever seen a kid lick the electrical outlets?  Mine does!  I thought most kids just tried to stick things in them, not full on lick the wall they are on!  He is obsessed with chords and plugs and anything dangerous.  I think I am in for it with this one!
He had a full Echo at his appointment.  I love that his doc won't sedate him if it can be avoided.  We had to pull all the tricks out of the bag to get him to hold still, but we made it. His heart looks as it should- there is no fluid build up, enlargement or excessive scar tissue.  This is all great news.  His next Echo won't be for 6 months.... YIKES.  That made this mama a little nervous.  But Dr. Mack said I could come visit him anytime before then if I was ever concerned.  It is mainly up to us to monitor his Oxygen Saturation and his Pediatrician will keep a good eye on his Liver to make sure there is no enlargement or change.
At his visit with his Pediatrician he weighed it at a whopping 19 lbs (25th percentile) and was 29 1/2 inches tall (85th percentile).  Growing like a weed!  His ped. told me it is time to let him cry it out at night- we both need more sleep.  I let him cry it out ONE night- it was so, so hard.  He cried for 2 hours, and after that I finally gave in.  Don't they say red heads are extra feisty and stubborn?  If so, Logan fits the stereotype!  I did give in after those 2 very long hours, but ever since he has been sleeping SO much better.  We have had one night of him sleeping through the night (8 solid hours- although I was still a mess checking on him to make sure he was alive).  He is now averaging about 6 hours- that I can handle! 

Check out those sticker free cheeks... they are the absolute BEST to kiss.  And his latest trick is throwing his arms up in the air when you say "toss it"!  (And notice the one sock- he is always pulling them off to eat them)!

 As I took his picture he scooted all the way to my feet and is now trying to get me to pick him up.  Who could resist (and boy does he need a hair cut)!

Life is good for us, we are truly blessed.  We think about our little angel friend Logan every day.  It is hard as a heart mom not to let things like this paralyze you.  Reality is not always what I want to deal with.  I have been reminded so much these past two weeks how precious life and loved ones are. 

Heaven Has Gained Another Angel

The week after we returned from Philadelphia we were told about a family that had moved into our neighborhood that were expecting a baby with CHD.  We were able to meet Bryan and Carrie shortly after. I have been so humbled, and my faith strengthened by knowing this great family. 

I would meet Carrie in the hall at church and we would cry and talk about our special heart kids- both named Logan.  Their Logan had a different journey planned for this earth though.  When I met Carrie she was 7 months pregnant and the doctors had told her that her baby's heart defects were so severe that surgery was not an option.  My heart broke every time I thought of what they had to face as a family.  I have been amazed at the insight, faith, and peace I have felt in EVERY conversation I have had with Carrie- here I was trying to be a support to her, and I felt like she was always reassuring me and strengthening me.  Carrie and Bryan were hand picked as the BEST parents to such a perfect, sweet baby girl who we had the honor and blessing of meeting.

Meeting Miss Logan Rylee-

She was born on St. Patrick's Day and lived a "Lucky" 7 days on this Earth.  Her parents biggest hope was to be able to hold  her alive, and I prayed every day that they would get this wish and be able to bring her home- they got both.  It is not my story to tell, but they felt like every day with her was a miracle.  Her parents cherished every single second with her, and I feel honored I was able to meet her and hold her.  She returned to live with her Heavenly Father last night.  I knew it would be soon, but the news is still breaking my heart.  

She is absolutely PERFECT! 

 Mr. Logan meeting little Miss Logan. 

 After our babies met Carrie posted on her blog that she knew when her Logan returned to Heaven she would be watching over my Logan and his special heart.  And I know she will- my Logan will have an extra special Guardian Angel watching over him.  

There is a special bond that broken hearts seem to create.  This club we call the Heart Mom Club is growing, and with it so is my heart.

A New Bed....

Not for Logan, but for me!  YES, I have succumbed and am probably creating a bigger problem, but I was THAT desperate for sleep!  I now have a bed in Logan's room, and I have to admit it has made a world of difference.  I wish I would have "moved" in there months ago.  It has become the family joke of musical beds, which bed will we find mom in when we wake up.  Ashlyn and Tanner know if I am asleep in Logan's room it was a rough night and they just color or something until Logan and I emerge from the room.  (I am not in there every night, just the hard ones.  And in-case any of you are freaking out, I don't let Logan sleep in the bed too.  He is still in his crib.)  It just makes life so much easier for feeding and not having to walk to a different room a million times a night.

 We had to take the closet doors off to get the bed to fit.  Every square inch of his wall is covered in furniture!

Logan has a new bed time routine the last 2 weeks.  He has got things figured out!  He acts so tired around 8:00pm when we put Ashlyn and Tanner to bed so I feed him and put him in his crib.  We get Ashlyn and Tanner tucked in, and then Logan wakes back up.  So he gets a 20 minute power nap and then knows after that he can have mom and dad to himself for snuggle time.  So he yells until we take him out of his crib.  He hangs out with us for about an hour and then is ready to go back to bed.  Neither Brad or I mind because for this hour all he wants to do is snuggle, and it is the only time he holds still and lets us snuggle him!  So again we succumb to this little boy who has everyone wrapped around his little finger! 

Who Wants a Kiss?

Anyone want a kiss from this face???

Mwaaa! 

Logan is blowing you that kiss.... okay, not really.  He is really trying to cram more chocolate chip muffin into his mouth!  Our little guy who wanted nothing to do with solid foods a month ago has had a change of opinion since he started eating "real" people food.  He LOVES to eat whatever we are eating, and I will be the first to admit he is spoiled rotten and I let him eat whatever he whines for.  Geeeez, what kind of mom have I become!  I do make sure that he gets his veggies in, but he also gets the good stuff.  I was eating a sucker the other day and he looked at me weird and smiled, then just reached up and grabbed it out of my mouth and put it in his mouth all in a matter of seconds.  This kid has FAST hands, and he is a smart one!  You can't feed him green beans while you are eating ice cream.... HE KNOWS!!

We have caught a few glimpses of Spring around here... I want more than a glimpse now, I want it to STAY!  I feel like we are slowly coming out of our cave and living a little.  Logan has LOVED getting out of the house.  (Notice- no oxygen.  We have been testing him off it little bits at a time.  He usually does great, but I am so paranoid and don't dare to go longer than an hour or further than the backyard).

 As GREAT as Logan is looking, it is funny how little things just wear him out.  Spending time outside the other day was completely exhausting for him.  He had 4 naps that day.  He has been getting so stir crazy being home all the time.  We have noticed such a difference in his mood when we get him out to new places.  He is so much happier.  I took him to the mall the other day with my sister (his first time at the mall) and he looked around in complete amazement.  He loved all the new things to look at.  He made friends with all the girls at Sephora and loved the mirrors!

 I have been "reminded" several times this week that I haven't posted anything for awhile... it is because I am FINALLY doing things like going to the mall (well, at least once)!  We are still ultra cautious with taking Logan places, but it is nice to have a little bit warmer weather and hopefully a little less sickness.  He had another Synagis shot (vaccine to fight RSV) yesterday- we are hoping that it will be the last one of the season.  The doctor said he had a few patients that day who came in with RSV so we are not out of the woods yet, but the cases are getting less and less.  He is growing- weighing in at a whopping 18lbs. 14 oz. so he has gained 12 oz. this month.  We are so pleased with his progress.  He has decided that rolling is for the birds and refuses to do it anymore.  Instead he scoots around on his rear end, but he is moving and that is so exhilarating to him.  Life is good.