Christmas 2014

What a beautiful day Christmas 2014 was!  The sun was shining and 5 happy faces woke rediculously early (well, a couple were woken) to celebrate the day.  Many times today we praised God for the gifts he has given us, most importantly Jesus as the center of our lives, our family and the love and grace we have for each other, being at home to celebrate the season together rather than in the hospital like so many that we pray so hard for, & hope for the coming year.  

Cath and Ear Tubes

Caleb had a cardiac cath yesterday.  We had to be there super early so the other kids prayed over him the night before and Coop told him he could have his horsey stuffed animal (he prefaced it by saying he didn't like or want it anymore- which he didn't mean.)  He was trying to be sweet in his cool way.  Then he said he wasn't going to school.  I know they get nervous for their brother, as was Pippaw who knows all too well about having these done.  He was especially nervous for Caleb now that he's getting older and recognizing what is going on.
We got to the hospital for check in and he was blowing everyone hundreds of kisses.  Always the sweet boy.  He had to have three arteries that lead off the aorta angioplastied- his subclavian artery (brings blood to left arm), carotid artery (brings blood to left side of brain), and innominate artery (brings blood to right arm and right side of brain).  They used the largest balloon for his size to open up the significant narrowing in each artery.
They were very pleased with his heart function, which is a very good update.
The ENT came in and put ear tubes in, as well.  YEA!  He drained the fluid so hopefully this will alleviate the constant ear pain (which frequent fluid along with the Glenn anatomy is a set up for uncomfortableness!).
Caleb came off the ventilator easily but had a very hard afternoon and night.  The effects of the anesthesia made him want to keep sleeping and not wake, but then when he tried to wake, he was angry (but couldn't move due to the cath sites-  they went in his femoral vein in his groin and his jugular vein in his neck).  His ears bled a good bit all afternoon due to the heparin he had during the cath.
It is incredible the interventions the physicians can do via catheter.  Although it's hard to watch him hurt  (his throat is sore from the vent tube), this is minor compared to a heart surgery.  It is crazy to think, though, that procedures such as this are what keeps him alive and that he has to have these annually. Thank you to the Great Physician for these blessings!
We were discharged this morning!  Yippea!  I think being home will be the best medicine.  He really just needs to catch up on sleep and get lots of sibling loving!

We had a super surprise visit from Santa Claus over Thanksgiving.  It was a blessing to get to see him yet keep little Caleb isolated from lots of people!  Thank you special elves for sending him!

18 1/2 months old

Over the past couple of months, we've had a few ups and downs.  I've been meaning to update this blog, but it's challenging enough to get through our typical day and accomplish everything that "has" to be done!  I literally think to myself in spare moments -  "get the have-to's done first- clean syringes, redose meds, feeds set up for baby, laundry, food for other kids- well, I attempt to get meals done, but don't always accomplish that!"
So to catch up on the past few months--  The hypoglycemia/hyperinsulinism has normalized.  I keep a glucometer with me at all times, but haven't had to check Caleb's blood in a long time.  Oddly, we never found a reason for this, but also that is a blessing!  After we got home, for weeks, the baby was throwing up every day, multiple times and had an odd cough.  His stomach ph level was very low and should be around 4 (it was 1.7), so his throw up was so painful/ burning from acidity.    While trying to figure out the cause of his throwing up/ cough, he was sent for an X-ray which showed he had pneumonia in his right lung.  He had already been on and completed two doses of antibiotics for ear infections, so this was a third to battle this.  Thankfully, he got through that scary diagnosis fairly smoothly.  Unfortunately, it seems that once someone has gotten pneumonia, they are highly susceptible to it.
He had a scheduled appointment with audiology to check his ears (which is routine for kids that are high risk due to being on the vent for prolonged periods).  I never suspected any issues and was shocked to learn that he has mild-moderate hearing loss.  One ear had fluid (automatically fail- so they will retest later), but the "good" ear presented hearing loss.  He was referred to an ENT to follow up on the fluid and formulate a plan.  The doctor scoped him and found that he has a significant amount of mucus that sits on top of his vocal box.  We have known he has extra secretions and constantly hear him "gargling" so this was the visual.  The question is whether it is caused from the allergies/ sinus issues, or from reflux.  They added singulair to his allergy meds of zyrtec and flonase and said to completely cut out milk.   He will have tubes put in both ears when they do his cardiac catheter to hopefully diminish the fluid that is a constant in his ears.  After that, we will decide the best plan for his hearing.
In the meantime, we are all working on sound and language development.  We try to get him to mimic sounds as well as learn a few signs to give him a way to communicate his wants.  (He has learned the signs for 'more', and 'all done' and uses both appropriately!)
He has gone from throwing up daily, to not at all!  Almost simultaneously, we saw drastic differences in his feeding.
He has made tremendous strides in therapy.  Caleb is kind of/ almost eating!!!  He loves Honey Nut Cheerios and will sit and put them in his mouth and chew with his mouth closed with the most adorable little movements.  Typically his bites eventually fall out, but we are just super stoked with what he has progressed to.  He sits and eats meals- cookies, salmon, bacon, sausage, bread, applesauce!!  His desire for independence has been a game changer, as well.  He wants to use a fork or spoon or use a beautiful pincer grasp to put food in his mouth himself.  Please pray that this continues and increases, because it is HUGE!
He is also making progress in his desire to walk.  He goes from sitting to tall knees frequently, and has gone to a standing position one time on his own.  Although his sure step inserts make it hard to crawl, they help him so much when working on standing and walking.  He loves to practice walking and is very proud.

Halloween was a blast-- freezing, but it didn't slow down our crew.  We had a beautiful butterfly, two green aliens, one Captain Underpants (yes, he did create his own outfit and I just let it go!), and the most precious chunky cheeked Mickey Mouse!

Discharged

He's getting discharged today without an official diagnosis of why it's happening.   He has been having episodes of hypoglycemia with hyperinsulinism.  Suspect is that it is related to his Nissen Fundoplication, called Postprandial hypoglycemia (late phase Dumping Syndrome), in which his food moves into his small intestine rapidly causing a rapid rise and fall in his blood sugar level.  We will go home with a glucometer and will check his blood throughout his day and night and monitor closely for changes in behavior.  He had PVC's overnight and went into vtach.  They had to draw blood for stat labs, but had great difficulty.  A PCICU doc came up and after much trial, was able to get an arterial stick in his groin. All of this work up and the frequent blood pricks have caused an increase in his anxiety towards even just seeing gloves on anyone's hands!  But in spite of it all, the sweet guy has blown a million kisses to everyone. He loved riding around in the new cars on the floor, blowing kisses and saying "hi"!

Endocrinology- low blood sugar levels

Labor Day turned into another hospital stay.  After contemplating whether or not to bring him in much of the day, we ended up in the ED around 11:30 pm.  He was febrile (but very low grade) and in respiratory distress.   Initial blood results showed he was dry, low white cell count, & very low blood sugar.  They gave fluids and sugar and admitted him to the PCICU.  They ran many tests- ct scan, lumbar puncture, echo, EKG, EEG, lots of bloodwork- but all came back negative.  They started him on IV antibiotics to cover any possible infection.  He has been so lethargic, wanting to sleep all of the time, and if he awoke, he was not "there"-  eyes rolling, tongue deveating.  We've questioned many times if he was seizing.  Last night and then again this morning, his arms stiffened and tongue repeatedly deveating, and his eyes rolled back over and over.  His blood sugar was very low on the morning labs (46).  After the seizure activity, they immediately checked it again (44).  Endocrinology was called and they requested many blood tests to determine the cause of these drops.  Glucose came back immediately (it had dropped more to 33 !).  We're waiting on the results of the remaining tests and tracking levels throughout the day and night to formulate the next steps.  Praying for answers to this new situation.  He's not pleased with being pricked as frequently as this is requiring, but we are thankful to maybe be on a track to understanding recent behaviors.  

15 Months & Hitting some Milestones!

We have a little guy that's finally on the move!  Over the past couple of weeks, he's gotten steady enough to sit up with minimal assistance (he still falls backwards, but catches himself the other directions), CRAWL, and even go from belly to sitting position and back down.  Basically, he can move all over.  

We dropped the crib mattress for the first time!  He was still at the infant height until he woke from his nap and we entered to see him sitting up with a huge smile of pride.  He loves being able to move around to whatever he wants.  He crawls a couple scoots, but quickly tires and goes to an army crawl for a few more, then plops down to rest for a bit before moving again.   His feet get very blue, but we suspect it is positional.
 He's also improving in his feeding therapy.  He's acting very hungry around typical meal times.  We offer him food as if he doesn't have a tube (meal items).  He licks everything and wants more and more, but doesn't swallow anything.  If a morsel breaks off, he spits it out.  We think he wants to eat and still doesn't understand how to properly move it through his mouth to swallow without gagging.  He obviously isn't picky about flavors, except for his formula (he doesn't want it to touch his mouth--but it does smell nasty).  He will lick anything-- salmon, chicken, avocado, sausage, watermelon.  He would have the best eating habits if only he'd actually swallow!

Summer's going super.  We enjoyed dressing as cows for our annual family tradition.  The kids think it's great that one of the baby's favorite food items to lick is chicken nuggets.  ;)  Kate cooked spaghetti for supper and he especially enjoyed licking it.  She was so honored.  I told her she can cook whenever she likes!

Watching Vanderbilt win the College World Series

Fourth of July Parade

Sleeping through fireworks.

Cow Day!

First time on the big swing.

It's hard to get his picture because he's on the go!  He always has his tongue out though, which we call the "Pappaw tongue",  after my late Grandfather, who always did this when he was working or concentrating!

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.)