Cooper's 5

Happy 5th Birthday to Cooper!  He's a whole hand now!!!  I'm so proud of what a big boy he has been this summer.  He's gone from my child that always pushed my buttons to an easy- going, helper.  I've received many compliments about his behavior and that makes me one proud mommy.  He still, and always will be, my child that wears the same outfit day in and day out (Red Sox shirt that is 2 sizes too small, faded, and stretched at the neck; one pair of socks that have baseballs on them) and doesn't care a bit about brushing his wild bed hair.  He is very athletic and can play just as good as the big boys... but at the end of the day, little at heart, sleeping with 4 blankies.
The nurses came to me yesterday evening, knowing today is his birthday, and tried to talk me into staying at home all day to celebrate him.  They reassured me that Caleb would be fine, that they love taking care of him and getting snuggle time, and would let him go on field trips to the nurse's station.  I was hesitant, but after I told Cooper, he was elated and started planning his day.
We had the best day being "normal".  We went to the park with friends, had cupcakes, and watched the kids enjoy playing together.  These are the days I get sad that school is about to restart.  I miss watching them all play, chasing each other up and down the slides, and push each other on the swing.  We left there and went to a snowcone food truck to cool down.  The rest of the day we just enjoyed being together.  We read lots of books, practiced math facts (probably should've done this all summer!), celebrated another friend's birthday, and ate brownies after dinner!

Adjusting to being off Meds can be Rough

Caleb has been having tremors that started Saturday night.  He's also spit up a couple of times.  The suspect is that he is having withdrawal from the sedation meds that he was on post surgery.   He is at an increased risk because he was on them for a longer time because of the longer length of time he was on the ventilator, as well as he was on them multiple times due to two surgeries so close together.  They are treating this by giving him meds Adavan and Methadone and will slowly taper them off.  He had his last chest tube pulled this morning.  Yippea!  He feels much better and is moving that side of his body more than he did while it was in.  He did have a set back today.  He had blood in his stools.  We had this issue a couple of times interstage and it is no fun.  They have to hold feeds for 24 hours and run all sorts of tests.  The Occupational and Physical Therapists came and assessed him and said he looks almost the same as before surgery which is great.  He still has work on his neck muscles which goes along with his head shape.  He's also needing to work on using both hands.  We suspect both will develop quickly now that the chest tube is out and able to move around.  He will continue on sternal precautions until 6 weeks post surgery (meaning he can't have any form of tummy time).  Dr. Mettler came by and was very pleased with how he looks and progressed since the surgery.

God has given Caleb's surgeon such a miraculous talent.  We are so thankful for him.  I pray my children use the gifts they were blessed with, to glorify God, like he has.

Back to the Floor

Whirlwind couple of days.  Caleb was extubated yesterday morning around 2 am.  Mid morning, when I was holding his hand and talking to him, he opened his eyes for me for the first time and smiled.  I couldn't, and didn't try, to hold back the tears.  It was his little way of telling me he was going to get through this.  He was put on VapoTherm after extubation, but was weaned off that to oxygen via nasal canula by midday.  They pulled one of his two chest tubes yesterday afternoon.  His feeds were started yesterday, continuously, and over the pump, but not at the calorie he was at pre- surgery.  He has a tremendous headache all of the time due to the way the blood is pushed to his head.  He is his typically easygoing self unless agitated and then he becomes a spitfire!  Due to the extra blood flow to his head, when he gets mad, he turns every bold color and has actually popped capillaries on his forehead.  He looks great and has lost a lot of fluid, but still has a good bit of edema which causes his profusion of blood to be somewhat poor.  This will get better as he continues to lose the fluid.  His weight the day of surgery was 5.77 kilos and today it is 6.417.  He had an unexplainable eye crossing episode yesterday.  Neuro came and witnessed, while trying to rule out seizure activity.  They are continuing to monitor. His pacer wires and RA line were pulled this morning.  We were pleasantly surprised during rounds when they bed boarded him!  We were moved up to the floor this afternoon and he's rested since.

Successful C Papps

Today was another day in the right direction.  He successfully came off the nitric oxide overnight.  He was very negative in fluid loss yesterday and today.  He still has a lot more to go, but his nose and ears are at least visible now!  His abdominal area is still very large.  His blood pressure went up so they added nipride which successfully stabilized it. He did c Papp trials and was successful in all.  These are exercises that get him ready, and test if he's ready, for extubation from the ventilator.  Goal is to get him off it in the morning.  Glenn babies really need to get off it soon because their passive blood flow does better.  Prayers for successful extubation.

I think he should be earning points / dollars towards school tuition through all of this (kind of like "Hilton points")!  

Zack sent me this pic of the kids entertaining themselves by forming a rock band.

Day 3 Post Op

Today was a steady day.  Caleb is still extremely swollen and needs to get the fluid off.  The lasix is working on that; however, he can't be pushed too fast, or it throws off his stats.  Right now, they are weaning him off the nitric oxide and he is tolerating it.  Plans for overnight are to slowly wean his rate on the ventilator with possibly of Cpap trials tomorrow.  He needs to get off the vent as soon as he can; however, it would be hard for him to breathe with all the fluid on him.  He is taking breaths on his own (over the vent), so that is a great sign.  The line in his neck was taken out today.  The cardiologist said, "He is not in the clear by any means, but today is better than yesterday."  We'll take that!

2nd Day Post Op- Rocky

Caleb required a lot of fluid resuscitation overnight in order to keep his pressures up.  This morning he was unbelievably huge from swelling- actually more so than they typically see post surgery.  Today he settled out and they were trying to get some of the extra fluids off with lasix.  This evening, actually not long after Daddy left- of course- he started dropping his oxygen satts and stayed in the low 60's.  His body temperature dropped to 94.1 and his heart rate went below 100.  They have been working all evening trying to get all three increased.  They gave him a blood transfusion and he is satting mid 70's right now.  He is on a bear hugger warmer to get his body temp up which will hopefully increase his heart rate.  He's had multiple PVC's  (different heartbeat) so they've been tweaking his minerals (calcium, magnesium, potassium).  Please pray for the little (well, actually huge) guy to stabilize so they can continue to try to get the fluids off.

Out of Surgery-up next- Recovery

Caleb came through his open heart surgery successfully.  He is now a "Glenn" baby.  He was taken back a little before 7:00 a.m. and his surgeon walked out around 1:30 to tell us he was finished with his part.  He had actually finished an hour before, but was concerned with his coloring (he is very blue) and had the cardiologist come down and do an echo on him.  Everything looked good, so he suspects that it is due to having the surgery early and will level out over time.  We waited an hour before going upstairs to the PCICU to see him; however, after that hour they said they needed another hour, and then after that, needed another hour.  I was getting very concerned (well, let's be honest, scared).  The doctor and nurse practitioner came out and talked with us, thankfully, and explained what was going on and how he needed more time to stabilize.  He was, and still is, needing more oxygen as well as nitric oxide (opens the veins and arteries), and a lot of fluid.  His pressures were dropping and he was satting low, so they were having to constantly tweak the medicines.  His pressures continue to drop as he needs fluid and increase immediately as its given.  He's starting to wake a bit (startling) and is hurting and agitated.  He's on Precedex (pain med) and weaning off morphine.  This was a much tougher day than I expected.  Praying for something/ anything to go easy!  The 1st picture was taken about 4 hours ago. He's swollen a significant amount since.

Glenn Surgery tomorrow

Caleb will have his Glenn surgery tomorrow.  That will be one year ago, to the day, that Zack and I ran our half marathon.  The longest I've ever run.  As I ran, I recall praying, asking God to give me the strength to complete it.  I prayed for my family (Zack and I ran this "together" for our 10th anniversary), friends, our life, for friends that were fighting illnesses.  Now my baby, at 3 1/2 months old, will have to run his 2nd longest race.  I will have to hand him over to the surgeon to have his chest cut open for the second time.  I thought my half marathon was a sacrifice.  This is the hardest and worst feeling I have ever had.  I think about how Hannah prayed and pleaded to God for a child and promised that he would be dedicated to Him for life.  I understand and share that feeling in begging that God save his life, bring him through his surgeries, keep his little heart strong and let him live a long life.  I know that Caleb will serve God through his life in an amazing way!  Please pray for Caleb and his amazing surgeon Dr. Mettler as they prepare over this weekend, that Caleb stays healthy and strong so that he goes into surgery not compromised.

Caleb teaching God's word

A letter written to Caleb from my dear friend Erika, whom I am so blessed to have in my life since that first day we met in freshman high school English! 

Dear Caleb,

What a gift you are, sweet buddy!  We are so grateful for your life!  We love your sweet smile, and are so encouraged by your enduring fight.  Though we haven’t yet had the chance to play or to snuggle, we feel like we know you well, because even before you were born you have invited us to pray, and to hope, and to be glad that even as you struggle, God’s promises are true in your life and in the lives of those who love you.  You are our favorite missionary, and we wanted to tell you thank you, for even though you can’t yet talk or walk, the story of your healing heart has ushered us all into some healthy perspective on who we are and on who God is, and has also given us a sweet reason to want to be with Him, asking Him to strengthen you with each passing day.

You are a treasure of a baby, who, just like everyone else, by no circumstance of your own, is a victim of the brokenness of the Fall, and yet at the same time, you are covered by the grace of a really good God.  Most days as we watch your family suffer alongside you, it is hard to trust that God has something rich for you all in this, but when I talk with your Mommy, it becomes clear that He is moving in the hearts of the people who love you most in ways that are surprising and delightful, and most importantly, in ways that close the gap just a little more between who they are and who God wants them to be.

Your Dad shared with all of us not so long ago the reasons why he and your Mom chose the name Caleb for you.  Caleb means “whole-hearted” in Hebrew, and it feels like such a perfect choice for what we might call you, and for what we might all strive for in our own lives as well.  Last week as my family prayed for your upcoming surgery around our breakfast table, our Daddy used the story of your namesake Caleb to help teach our kids about having courage to face our giants (which is something you have had to do your whole life).  The twelve spies (who were, in our version of the story, very small Lego men) went to scout out Canaan, the land that God had promised them that was flowing with milk and honey (also in abundance at the table).  When the spies got there, they were amazed!  Even the grapes were huge!  Unfortunately, the people were also huge--Giants!  (Cast by some of our other favorite, larger toys hanging out close by).  The Giants made the spies feel like grasshoppers, and they were afraid.  They came home and told Moses what they had found, and they grumbled and complained to God and each other, even though God had already promised them the land.  God asked them, “How long will you refuse to trust me?  And with all these signs I have done among you!?” 

And then God says of Caleb, willing to follow Him and face the Giants,  “But my servant Caleb---this is a DIFFERENT story.  He has a DIFFERENT spirit.  He follows me passionately.  I’ll bring him into the land that he scouted and his children will inherit it.” (Numbers 14: 24)

We all feel like grasshoppers sometimes.  The truth of the matter is, it doesn’t take much to make a grasshopper feel small.  But the bottom line is, we belong to the Lord.  You, Caleb Daniel, have reminded us to remind each other of that Truth.  God has begun a good work in you (and in all of us!) and promises to complete it.  You remind us to be aware of the giants, to be big (whole-hearted), and to believe that God is good!

As I talk with your Mommy on the phone while she holds you, loving every minute of that and yet missing your brothers and Kate and your Daddy at home, she tells me all the time that she just doesn’t want any of this journey to be wasted.  She walks with you, expectantly, trusting God to heal you, and also hoping that your family will know Him better because of your story.  She gets overwhelmed about how to actually help that happen for your family, but maybe just like Caleb in scripture, all she can do is to know the giants are there, to remember to be big (she will do what she can to be a godly parent for all 5 of you), and to believe.  She can’t be Jesus, but she sure can need Him, and as your family and friends watch her NEED Him every single day, her witness points strongly in the direction of Christ, those who are watching see that, and as she lives out her need for Him, she reminds us all of some timeless truths.

Sweet Caleb, as your Glenn surgery becomes more necessary and more immediate because of how your body is growing, we pray that the Lord will work, using the doctors’ steady, capable hands and brilliant minds, to reconstruct your heart.  We are cheering for you as you battle, most of the time with that classic, beautiful smile on your face, and we give thanks to God that one day all the things that are sad and scary will be untrue.  Until then, your family is doing an amazing job reminding us to trust that as God does good work in you, little man, He is at work in all of us.  He promises.

We love you.  Thank you for inviting my children to pray for you every single day.  Your heart is on our hearts, and our hearts are made just a little more into His likeness because your heart leads us there.  Face that next giant, Caleb!   We are all cheering for you to be big and be whole!  Thanks so much for being such a powerful instrument of truth in this world…

With love from a grasshopper made a little more courageous because of you,

Erika (for all of the Shapiros)

Drop in Sats

The last couple of days have been rocky.  His color is overall more dusky, he has been eating much less  (by bottle) and even refusing the bottle at times.  His sats have been dropping and staying in the upper 60s-low 70s.  He is on .5 liters of oxygen.  All bloodwork. X-rays, and an echo look unconcerning.  This afternoon he had two big dips into the 40s, had to go on blow by and oxygen increased to 1.25 liters for an hour.  During this episode, he didn't change color and was even smiling at times.  He has since been weaned back to .5 and is sating low 70s.  It is challenging to not have a "reason" for these behaviors outside of these are the ways his body is showing he's getting ready to need surgery.

Cow Day

     We've had a rough day dealing with reflux.  Increased the Reglan medicine- prayerful that helps.  I think his little body is getting closer to needing the Glenn surgery.  Today is Cow Day at ChickFilA.  We have made this our family holiday and go all out.  I took the kids early this morning.  We were actually the first ones!  I had to commemorate Caleb's 1st Cow Day!  Next year, he'll be 1st in line at the restaurant.  Zack didn't want to miss out so he created his cow costume and took them tonight for free combos!

3 Months Old

     Happy 3 Months to Caleb today!  He worked on playing with toys with occupational therapy-  gripping and reaching.  His sats have stayed within range overall.  He dips every so often, but recovers.  He is on oxygen and currently it is set for .3 liters, which is increased from a day ago.  This is adjusted based on his sats.  He is really having a hard time with reflux issues.  He is so tough because it is visibly painful to watch him get startled by it, cough, tighten, and sometimes spit up (projectile), but other times it goes back down.  He cries out but as soon as he is soothed, he is fine.  He's been on Pepcid and Prevacid, which were both increased end of last week.  Today they added Reglan to assist in the reflux.  He's gaining weight- 5.535 kilos (12.177 pounds).
     I was unable to post Kate singing her song on the blog, but I put in on Facebook yesterday if you'd like to hear it- go to my timeline.  :o)

The picture below is from Saturday when Daddy was holding him.  Like father, like son--both staring at the tv-- But it melts my heart to see how Zack is holding his hand.

"Caleb's Song" by Kate

This may be one of my favorite posts.
     I have prayed throughout this journey that God gives all my children grace to get through these most difficult months.  I pray that he work through their hearts to trust Him in the plan, timing, and outcome of Caleb's surgeries as well as guide them to help others throughout their lives like the surgeon, doctors, and nurses have for Caleb.  I pray that they see the unbelievable support, love, and help we've felt from family, friends, neighbors, and even friends of friends.  Most of all, I pray that they see all of this as a miracle that God is intricately working.
     It has been hard on all of us; however, the kids have been amazing through it.  Bo won't leave my side whenever he's around me and cries every time I leave.  Cooper has actually grown up a lot.  He helps with Bo a lot and I've received many good behavior reports from family and friends.  Jake has enjoyed playing board games with anyone that is at the house.  He's a Monopoly champion and gotten a lot of practice over the summer.  Kate is my creative child that has been designing dresses, creating games, and writing songs.
     After sharing this with the Child Life Specialist at the hospital, she came up with the idea of Kate working with the Music Therapist to write a song for Caleb.  God has blessed Kate with the gift of creativity and talent as well as a strong love for her baby brother and this is such an expression of her emotions.  She wrote and sung "Caleb's Song" as a tribute to him.  I've tried to attach her singing the song, but I'm having trouble.  The beautiful words are below.

"Caleb's Song" by Kate 

What's it like sitting there alone?
You have a very busy house waiting for you at home
As far as I can tell
You like to be held
You're strong and you are breathing on your own

Right now I love to feed and hold you
And I love when we play peek a boo
Can't  wait to give you a bath
Which sometimes makes you laugh
These are some of the things I want to do

CHORUS
Caleb, Caleb what is wrong with you
I don't know what we're going to do
You've been at the hospital all your life
There's happiness and lots of strife


Leaving you and mom makes me sad
But you safe at the hospital makes me glad
Wish I could see you everyday
I pray you will be okay
I'm mad that you can't come home today

CHORUS

I'm thankful for our neighbors and our friends
I hope their kindness never ends

Physical Therapy

     Caleb has occupational and physical therapy alternating days 4 days a week.  He has a tendency to turn his head to the left and angle down a bit.  Suspect is that it is due to his previous plication surgery and he turns away from the incision.
      During therapy sessions, they work on different exercises of the muscles that hold his head up and turn in.  Tummy time, sitting up (with full support), and following toys to get him to turn his head are all different exercises we work on.  Today he had physical therapy and she explained that he has a tight sternocleidomastoid (SCM).  Our goals are:
*Rotation to Right with toys and people
*Headline in midline for sleeping
*Football hold on my left side, 60 second x 3 reps, 3 x / day, using my right hand to increase rotation to the right.

Independence Day

Happy Independence Day! 

Each of the siblings fingerpainted a patriotic picture to decorate his room. 

He had a fun day but fell asleep on a wagon ride well before the fireworks went off.

The crew came up for a "grill out" inside the hospital.  They loved getting to pick out special ice cream.  Tried to commemorate the day with a pic but its impossible to get the boys to look at the camera.  They always keep me laughing!