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.



Runny Noses and Rolling Over

That about sums up our life as of late.... runny noses and rolling over!  Exciting, I know.

Logan decided he could finally roll from his back to his belly on his 9 month birthday.  This is the first major milestone he has "missed" developmentally... and he is was WAY behind on that (rightfully so... he has had his chest cut open 3 times)!  We were all shouting for joy when he decided to muscle his way on to his belly.  Logan on the other hand wasn't so sure about it all at first, but after seeing all the attention it got him he kept doing it.  It seems like most heart kids need some kind of early intervention program (OT, PT etc) whether they are behind physically, or developmental- I don't know if Logan will need this.  His Pediatrician seems to think he is okay, but I worry about it.  He is eating baby food SO much better, and we are off ALL pain meds... yeah!  So we are definitely seeing progress.

 Despite my best efforts of keeping germs away, Logan has had a little bit of a cold the last week.  Runny noses on oxygen are a pain in the butt.  This is how he felt about wearing his oxygen the other morning.  Usually he doesn't mess with it, but with the runny nose it bothers him more than normal.

 Yum!  That cannula has got to taste good.... yuck!

 Since he had pulled it off, I decided he deserved a little break from it.  I bathed him and gave him a good hour sticker and oxygen free.  He loved it, and I loved seeing his cute little face without the oxygen.  He did pretty good with his color (staying pink) for about 45 min. and then I could see he needed it back on. 

 Ashlyn and Tanner couldn't let Logan have all the fun by himself.  They both insisted on bathing with him and the duck!  It was one crowded bathtub.  It is funny because Logan is still a bit of a novelty to them.  Ashlyn cried that she had never been able to have a bath with him....so I let her climb on in.

Logan has been a TERRIBLE sleeper lately.  I am sure it has to do with being a little sick, but the sleeping is getting worse even as his symptoms get better.  I have ended up on his floor every night for the past 10 days (yes I do have mats to sleep on at least- I wish his room was large enough for a twin bed, but it won't fit).  I don't know what to do.  It seems to be a separation thing.  I always start out in my bed, but after walking in there 5 times I end up just staying.  Once I am in there he seems to do better.  This morning I wanted to be mad at him when he was ready to wake up and I was still tired, but then as I changed his diaper and saw the scars down his chest I couldn't be mad.  It's no wonder he has separation issues- how many times has he fallen asleep in my arms and woken up in a hospital bed.  I know he probably doesn't remember, but it still makes it impossible for me to let him cry it out and feel alone.  So I guess we will see how long I can function on this kind of sleep!

My neighbor asked me the other day if I was mad at God for not fixing Logan's heart, because she was.  I told her I wasn't mad at God, but knew He must have a different plan for Logan.  She wasn't convinced, she said she was still mad.  I have thought a lot about this.  I wanted to be mad at God when things didn't go how we had hoped, but I couldn't.  How could I be mad at the God that is blessing me with the opportunity to be this little boy's mom?  When it comes down to it, really I should be thankful I was trusted to raise such a special little boy, and we will take all that comes with raising him- rain or shine (or more like sleep or no sleep!)
I started this post back on January 29th, and for some reason never posted it.  But last night I read this scripture and thought back to what I had written here.  "I know that God loveth his children; nevertheless, I do not know the meaning of all things."  (1 Nephi 11:17)   I don't know why we have the trials we do, but I do know God loves His children and there is reason for everything.

Pictures and Heart Day (aka Valentine's Day)

(I am not by any means a photographer, but my sister wanted to see some recent pictures of Logan, and I wanted to show off his new shirt and blanket so we had a little photo shoot in his room the other night.)

 A fellow heart mom and life long friend, Caryn, made this shirt for Logan.  I am overwhelmed with the support and love we have gotten from the heart community.  They are the most amazing people with the biggest hearts. 

Logan was also given this beautiful blanket from another fellow heart mom, Elizabeth (someone who I have never met), in honor of her son Jake that passed away from CHD.  I feel honored to have one of "jakey's blankies". (check out his button on the side of my blog)

Logan loves his blankie.

Logan with all his soft and furry friends.  Every animal given to him by someone who loves him.

Look at the chub coming back on his tummy.... he is kicking CHD in the rear end!

Now that you got to see all the pictures of my handsome little dude you can choose to read or ignore the ramblings of his mom!  With yesterday being Valentine's Day I had a few thoughts.  Hearts mean a lot more to us this year.  Logan is teaching us so much- in every aspect of hearts; the physical heart, the emotional heart, and the spiritual heart.  And I am sure there is still so much for us to learn. 

We were able to go to Paul Cardall's concert last night (well at least most of it, that was the longest we have left Logan (since surgery), and Brad's parents were awesome, but his limit was 3 hours so we had to skip out a little early).  I was overwhelmed listening and watching Paul Cardall play.  It is surreal seeing him as an adult and knowing the odds he has defied.  Logan is taking a similar journey, but 37 years later when medicine has advanced so much.  There is so much hope for these heart kiddos- even if they are only functioning on half a heart. Paul shared a quote that I have been trying to find online, but can't find it, but it said something like,

"God is closest to the broken hearted."

It is so true... I am grateful this Valentine's Day more than ever for HEARTS.

How Are We?

I get asked this question several times a day by people who I know genuinely care... how are you?  My answer, "good."  "How is Logan?" my answer, "good."  What else do you say?  For the most part we  really are good... considering!   I have friends and family asking how they can help, and I wish I knew how to pass stuff off- it is hard, but I am trying.  My brother called and offered to come watch Logan today so I could go to the first hour of Church.  Initially I said we were okay, but I am learning to let people help.  I told him that would be great (my mom has been coming every week, but was out of town this week).  So he came with his daughter, and Logan did great (but was really ready for me to be home when I walked in the door), and I got to go to church.  Thank you!  We have been SO blessed by those around us.  My parents still call every morning to see how much sleep I got and if they need to come out so I can take a nap.  85% of the time I feel like I have things under control, the other 15% of the time it feels like my life is complete chaos!  But we are figuring things out.  A roller coaster is the only way to describe it.  Some times I feel like we are on top, other times I feel like we are screaming down another hill out of control (mostly in the middle of the night or when I try to go somewhere by myself). 
Logan saw his pediatrician this week, and has gained 12 oz. since we have been home- that is remarkable.  If he keeps gaining weight his ped. said we might have to try the cry it out method at night to get him to sleep more... I don't know if I will be able to do that.  He has some nights where he will do really well (3-4 hr stretches), but we had SEVERAL nights this week where he was up every single hour.   Exhausting!
I still think he is adorable even if he wakes me up all night, and I can't bare to let him cry.  I went to run some errands last night and I got a phone call from Brad to see how much longer I would be.  Logan was hysterical.  I sang to him on the phone as I drove home, and that calmed him down some, but this boy is a mama's boy...makes it hard to ever leave him. 
I have been so overwhelmed trying to figure out what to do with my job.  I LOVE, absolutely LOVE teaching at the gym.  It gets me out, gives me social time, and best I get paid to exercise, but it has been a bit of a challenge working that back in with Logan.  I have a great neighbor that has been watching Logan for me since he was born a few mornings a week while I teach, and she is still willing to watch him.  So she watched him for me this week while I taught 2 of my classes.  He did okay.  The first day I was gone just over an hour and he did fine, the second time I was gone almost 2 hours and he was crying when I got there.  Bless her heart she did everything, and she is so nice to deal with the oxygen and all that comes with caring for him.  But is so hard to leave him, for both of us.
 Enough about me though, most of you read to see how Logan is- he is "good."  He is gaining weight and is eating more solid foods every day.  He started rolling from his tummy to is back the last 2 days (he hates tummy time), but still won't roll from his back to his tummy.  But he is making progress.  I asked his ped. if he would need therapy, and he feels like Logan is right on developmentally so we won't jump on that yet.  We are still weaning him off his morphine, but hope to be done with that in the next week and a half.  We have also been able to turn his oxygen down to 1/4 liter during the days... all progress!  He is a happy little guy (when mom is around)!