Happy Father's Day

Happy Father's Day to a Daddy that can agree to take a pic with this wild crew and always have a huge smile!  (It's hard to not laugh at them- see below!)

We are grateful for his desire to be a "present" Daddy, always giving his all to be at their activities, their biggest fan (still working on not being the loudest!!), best statistician, and schoolwork helper.  He knows the importance of communication with his children and strives to talk with each of them daily.  I love to hear them beg for daddy to tuck them in, knowing this is their favorite time of day because they sneakily listen to daddy's music, learning every word to songs.  :)

I love that when I look at the kids, they each have certain physical characteristics that I see their daddy in them.  Most of all, we love that in everything he does, he puts everyone else first, selflessly, loyally, and is the finest Christian example of anyone I know!

Baby "ate" some pizza!!!  Well, he gnawed on crust for a bit-  but this was very exciting!!!

Summer is in High Gear

Life is Good!  God is Good!  Summer has kicked off in high gear and we are loving every second of our "normal" summer routine.  The boys are playing baseball and doing incredible and swim team is going strong.  We're loving getting to cheer them all on this year, since last summer was such a blur.     It's hard to believe how long ago that seems.  I've seen how blessed the kids are with coaches and other parents of teammates that took them under their wings last year and really kept their "normal" routine going.  Now Mommy's just getting reacquainted with all the practices and hungry tummies!  :o)  

We do a lot of therapy to catch up on his development (which is fun and challenging with all of them out of school); however, Caleb continues to make quick strides.  He does a lot of imitating now which is helping with oral motor movements.  (kisses, frog tongues).   He is starting to like a sippy cup and even wants to drink out of a big cup, but then if I try to help, he bats it away.  He sometimes swallows, but usually doesn't, or it always sits in his mouth for a long while.  We've come to the conclusion that his strong willed personality is what is going to be the driver in encouraging his eating.  He's wanting to be independent in his skills (holding his cup, bringing the spoon to his mouth).  If we bring anything to his mouth, he clinches his lips (out of aversion); however, he's more willing when he does it himself.  He is seeking a lot of input in his mouth.  He has cut the two bottom teeth and now the bottom molars on each side are busting through.  He hasn't fussed or been agitated at all!  I know I've said his temperament is great, but I mean, this kiddo is amazing!  He's one tough nugget!  He bites on my shoulder, which is funny because I don't want to encourage biting, but I'm excited that he's putting anything in his mouth.  I just pray he doesn't do it to one of the kiddos!  He's starting to sit up!!!! PRAISE!!!  This is a huge milestone!  I still have to have arms ready to catch him because if he loses balance- which he does- he topples over and doesn't know to put his arms out, or have the strength, to catch himself.  He really enjoys the pool.  I didn't know what to expect, and was concerned that he would have sensory issues with the water.  However, he can't get enough of it!!!  He's a little water baby.  His arms turn blue after a few minutes, but it doesn't slow him down!!  We have to be very conscientious of the heat.  It wears him down quickly, so I've been buying anything I can find online to keep him cool!!!
This week I've been a bit in my "overwhelmed, when do I get a moments break", kind of mood.  It started with a med mixup earlier in the week, continued with doc appointment scheduling changes, and then culminated tonight with Caleb pulling his G-tube button out of his stomach!!! This is  NOT GOOD and was the first time this has happened and I was scared out of my mind.  My kids were great, stayed calm, and got me what I needed and then PRAISE GOD, my sweet friend with lots of experience with these came over and helped put it back in.  (If it doesn't get back in quickly, it will close up- imagine the stress/ pressure of seeing this hole in your child's stomach!).  I was about to rush to the ED (which is what they say to do until you feel confident doing it yourself).  Again, one more thing I never thought I could do to my own child, but now, this is how we roll!    :o)      When it first happened, the sweet kids saw that I was upset and said, "Mommy, why does he not have any holes in him like us?"  and another answered, "But, we do, see your belly button?"!!!!   I loved it and was quickly reminded how God's light shines through them.

We've been busy and having a blast so far this summer, fishing, swimming, golfing, dancing, and loving spending time together.  These days we cherish every moment.
 God has given us a few extra "happies" this season of life that keep a big smile on our faces and an extra pep in our step.     :o)

                                   

                                      

                                    

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