HE is Risen! Happy Easter

Happy Easter!  Jesus Christ is Risen today.  Hallelujah! Hallelujah!  

We traditionally attend Sunrise Mass on Easter.  The kids look forward to this and easily awake (which is never an issue on any day) and get dressed in their Sunday finest (always a battle with the boys).  They glance to see if the Bunny visited and then rush out the door.  There is no better way to praise God for making all things new than watching the sun rise over a lake, animals graze and then make their way to the water, hear the birds chirp in harmony, all while singing praise songs to the Lord.

We continued our tradition this year celebrating our first time at mass together as a family of 7!  I was nervous to bring the baby, but planned to keep him in the stroller in the back.  We were doing really great on time, and all looked pretty decent, so Zack and I were quite proud.  Upon picking the baby up out of the car, he was soaked.  He had pulled his feeding pump out of his port and it was continually pumping all over his Easter outfit!  Of course, I didn't have a change of clothes, and since it was early morning, I wasn't about to take this fragile child out into the cool air wet!  UGH!!  There went our successful outing!  So off went the outfits, laid them across the car heater for a bit, then put them back on, with a diaper tucked into his top so it wasn't against his skin!  Nothing like being the 5th child.  This kind of stuff is normal!

So we finally made our way to the service, and Bo came running up to me, only to trip and slide across the grass, landing in a bit of dirt.  His kind brothers started chanting, "Bo fell in cow poop!  We're going to call you Cow Poop Boy"!  --- oh my!  I think he kind of liked this.  Mommy, on the other hand- not so much.

We did have a wonderful weekend filled with a bike parade, egg hunts, dying Easter eggs, being spoiled by sweet friends with chocolate easter eggs, and baseball games!

We had a very proud moment for Bo.  He learned to ride a 2 wheel bike!  (NO training wheels for that kiddo!)  He's set a Daniel family record for sure at 3 1/2!!!   He was super motivated and wanted to earn his kick stand Pippaw promised him.  We are all so happy for him.  He hops on it and rides all over, as if he's been doing it for years!  I caught him trying to do tricks already-  one handed!  I put a quick stop to that!

Cooper's PreK 5 Bike Parade

He earned his kick stand!

Yummy Chocolate Easter eggs with their names on them!

How awesome would it have been if he started gobbling it up?  He did make chewing motions, so we tried.  I guess Mommy will "have" to help him eat it.  Yea!

Caleb's 1st Easter

There was no picture of their baskets this year.  They dug into them while Mommy was working with baby.

He's SO close to sitting by himself… just needs a bit of support  and propping, or he topples.  Not long though!

"How Great Thou Art"- One Year Post Norwood Surgery

One year ago today, we walked beside our baby and his team of cardiac anesthesiologists down the hall, quickly opened his tent for a kiss, then said our goodbyes, then poured ourselves into prayer as he entered his first open heart surgery.  I remember every single thing and moment about that day; although at the time, it felt like I was living in a blur.  I remember not wanting to move from my seat in the waiting room, in fear that I would miss our surgeon coming out to find us, I remember watching the waiting room fill up at the start of the day…. and empty at the end.  (Caleb's surgery was over 10 hours long.)  I had to leave a few times to go pump.  While sitting in the little pumping room, a friend posted a song that I know God wanted me to hear on that morning.  Incredibly, someone just this week reposted it again!  It is Carrie Underwood and Vince Gill singing "How Great Thou Art".

http://faithtap.com/402/how-great-thou-art/

 I sat in the little room by myself, volume on my phone turned all the way up, singing these beautiful words of this song from my heart, tears engulfing my face, pleading for God to be with my baby.  I know I pushed repeat over and over.

As I just listened to it again, I have that same gut wrenching feeling… the one that almost makes you want to throw up.  I truly want to shout the words.  "When I in awesome wonder, consider all the worlds Thy hands have made…Then sings my soul…"
As I reflect on that day, knowing that my baby's chest was opened, his heart stopped, ….. and I reflect on the last 365 days, I think on how Great our God is.  He provided our comfort then as he does every day.  His power is displayed through Caleb.  He is living proof, living and breathing with half a heart!


I think I've portrayed a hard shell on this blog and that is selfishly for me and my husband.  Although he's relatively doing pretty good right now, I live daily in worry, staring at his breathing, worried that something will go wrong.  It is a worry that I choose not to get me down, or to dwell on or be visible to the outside world;  but rather to be on guard, knowing that he is just fragile.  Many ask me how he's doing, and I say, "great"!  Which he is…. it's just hard to not let my mind wander to the unknown of the future, at times.  In spite of this, I choose not to live this way, but to bow in humble adoration while singing praises at the top of my voice,  "HOW GREAT THOU ART!"

Happy 1st Birthday!!!

Caleb is 1  !!!  What a year this precious little boy has had- 2 open heart surgeries, 1 craniotomy, 1 diaphragm surgery, 1 g-tube surgery, 1 nissen surgery, 2 cardiac catheterizations, & months and months of hospital stays- yet through all of this, which is just a mere glimpse of what he's gone through, he is super happy; always smiling with those huge cheeks, beautiful blue eyes, and light strawberry blonde hair.                   This boy is our everything.  He truly completes our family.  
 It was such answered prayer that we celebrated this tremendous milestone with a little party.  To be truthful, I was scared to plan anything, worried.   This baby turning one is a true miracle in every way.  To celebrate Caleb is to thank God and give Him all praises!  We are so grateful for all that did just that.
The kids helped decide on his theme (Sock Monkey) and we had a blast planning it.  It felt so "typical" and wonderful (almost therapeutic) to plan a birthday just like we did for each of them.  They helped make the monkey munchies and sock monkey decor.  They were all concerned about what he would eat for his "cake".  What else--  a Ritz cracker!  It was the best weekend,  long overdue and so needed.

Fast forward a week, and yesterday he was fighting an ear infection. I took him in yesterday morning because he woke up throwing up his feed (over and over) and just was so uncomfortable.  The poor pediatrician was the same one that was on call the night back in November when I brought him in for the double ear infection-- that later we ended up in the hospital with Pneumococcil Meningitis and the Subdural Hematoma.  Needless to say, he was hesitant to send us home with just a prescription for an antibiotic until he could tell the baby was going to be stable and not possibly show signs of something else.  After monitoring him for a bit, we went home, knowing that if he didn't start turning for the better quickly, we'd be heading to our second home- the hospital.  He was better after a brief nap.  The afternoon and evening were rocky, but I believe it was because he was exhausted and hungry (he basically was just getting pedialyte until we knew he would be able to keep it down.)  He woke today in much happier spirits and is currently on a feed that is his regular calorie and tolerating it.

Caleb's skills at 1 year old:
rolling front to back, rolling back to front.  He can basically roll to anything he wants to get to.
waving
clapping! (this is new on his birthday!!)  He brings his right hand to his left, of course.
passing toys from one hand to the other
tolerates tummy time for an extended period, grunts to breathe while on his tummy, but compensates by resting on his side.
getting closer to sitting, but not there yet
Says Da Da
He's still in the highest level of his crib (we haven't dropped it yet)
He enjoys his exersaucer, jumperoo, and newest toy- a Rody.
Loves his nuk pacifiers and Aiden and Anais blankets.
He's very nosey and loves to see what the kids are doing.
Spoiled rotten (well earned) in only the best of ways
laid back
SO, SO Needy in every physical way 24 + hours a day, yet the easiest temperament  (Thank you Lord.)

First Word

Baby said "Da Da"!!!  I was just saying a week or so ago that he is just so quiet, he rarely cries, and wasn't making babbling sounds yet.  Well, he's discovered his sweet voice.  He is still quiet most of the time, but every so often, he just babbles away.  Then, he started saying "Da Da Da Da"!  We all love it, especially Daddy.  (Mommy's slightly jealous and is now working hard on getting his lips to make that "mmm" sound for ma ma!)  :o)  Cooper says that he's saying "dub", too; (which is our nickname for him)-  so he's so proud!

He also bit a ritz cracker at feeding therapy.  He even kept chewing using biting motions with his mouth!  This was a huge deal I have been told!  He's having a hard time going to sleep at night.  We are transitioning him towards Elecare Jr. which is equivalent to transitioning any one year old to whole milk.  He is currently still on Elecare, but I'm increasing his calories, which allows us to decrease the quantity.  (He gets less boluses-  he has 4 now, with free water given throughout the day, while keeping his total daily calorie intake the same.)  This is stretching out his feeds, making him hungry  (YEA!!)-- This is wonderful and ideal; however, it is hard because he isn't eating foods yet.  His little tummy just growls and growls and causes him to stay awake.  He doesn't cry over it.  (Like I said earlier, he rarely ever cries.)  Praying he starts to recognize that the food we are trying SO hard to get him to eat, would provide comfort to his belly.

Dear God, from Kate

Dear God,

          

            You have been very good to my family. I am very glad my brother is home. You have blessed us with wonderful and caring friends and family to guide us through the difficult times. It is finally spring,it is still kind of cool outside. It is Lent season also. We are getting prepared for your Resurrection. That can relate to Caleb. He will have to have surgeries, and we will be sad. When he recovers, his heart will be new. Because of Caleb and Jake, I would like to become a Heart Surgeon when I grow up. I want to help little boys and girls get well and get to go home to their family. My mom said that you definitely gave me a special gift through Caleb. I will work hard to please you.

Love,
Kate

                                                                                 

Third Time's a Charm

Same thing happened again last night.  I had discharge papers in hand, was changing his diaper and about to head out the door when he started throwing up again (he hadn't done it since yesterday's "discharge"!).  We suspect the throw up is his response to his aversion to the extra secretions/mucus going down his throat. The doctor came in to assess and decided he needed to stay (should it continue he could've easily gotten dehydrated.).  He slept well overnight and actually became playful for a bit before bedtime, and woke in a happy, smiley mood this morning.  We were just discharged for the 3rd attempt in 3 days, but made it out and home!  Yippee!  He's extremely exhausted and thankful for this glorious day so the kiddos can play outside while he rests in quiet!

Rhinovirus knocks this little Guy Down

So the official diagnosis- Rhinovirus- a.k.a. The common cold!  What would hardly affect most, has been so hard on Caleb.  He really doesn't have many symptoms of a cold, but we suspect the drainage is going down his throat and into his tummy instead of out his nose.  Yesterday we were actually discharged and made it out the door and pushing the elevator button when he started screaming, retching, and throwing up.  We barely squeeked back into the room before it was cleaned and were lucky to not have to go back through the ED!  We'll see later how it's billed- praying not two admissions!  They gave him zofran to help settle his tummy, but it, in combination with just feeling awful, made him so out of it.  His eyes did very unusual movements and he made little eye contact with anyone.  Neuro was called and they sent him for a CT scan and an EEG.  They said that due to his epilepsy, with any illness, he is likely to seize.  The neurologist explained that on the EEG that was administered last Thursday (ironically), it showed that his brain has spots that are like "sparks" ready to ignite.  

In spite of his discomfort and fussiness which is so out of sorts for him, the plan is to discharge him today, which will be good so that he can get home and get the sleep he needs.

Thank you, once again, to all our friends that have prayed for him, along with the assistance with the kids!  Spring break was not the  "ideal time" for this!!  We are truly blessed more than I can ever express.