NJ- NG-now NJ... What's next?

Caleb moved to the floor yesterday.  His tube was pushed NG (stomach) and his feeds were returned to schedule.  By early evening, he started wrenching terribly and it continued through the entire night, throwing up 5 times.  It was a sleepless night.  It was decided to push it back to NJ midday today and he seemed to do better.  Cardiology and the GI doctors are consulting to form a plan. He did better today, but did have a throw up this evening that had blood in it.  

I started giving him the shots.  He is one tough little guy and luckily, super chunky which helps a bit!

Blood Clot in IVC

Still working with diuretics to get fluid off Caleb's lungs.  He's on oxygen and was very agitated this morning but a bit more himself by this afternoon.  He blew 3 IVs and became happier after we gave up on that form of access.  Although this would not have been where I wanted to spend today (although I think Caleb wanted to be close to the Vanderbilt football kickoff game tonight!), it really was a God-thing.  Last night, on the echo, they saw a spot that needed further assessing via an ultrasound today.  They confirmed he has a blood clot in his Inferior Vena Cava.  It is in the reinal vein area and is non occlusive.  Catching the clot early prevented it from blocking blood to flow around it.  So thankful we were in the hospital to catch it!  Unfortunately, to treat it, I will have to give him Lovenox shots in his thighs twice a day.  Not really sure what to think of this, trying to dwell on being grateful for finding it.  It really could've caused a big problem with his future Fontan surgery being where it is, but also just a clot is not good.
 We'll give the first shot tonight, second and third tomorrow, then four hours after the third, check his low molecular weight heparin assay levels and continue this until the dosage and his blood is at therapy level.

The boys started preschool and pre k 5!

Back in the Hospital

Back to the ER.  Caleb had retractions while breathing, was satting low, sweating and sleeping a lot.  Xray showed streaks on his lungs.  He's been put on oxygen, had IV lasix to help get the fluid off and has been admitted to PCICU.

Encouraging a different Pacifier

During Occupational therapy today, we worked on exercises leading towards taking the bottle.  We are trying to get Caleb to use the hospital big round pacifiers because they are similar to the bottle nipple.  He gags on both just the same!  As soon as it touches his lips- tongue, he thrusts it out of his mouth with his tongue and gags.  We dipped it in milk and he didn't despise the taste or smell- just the actual pacifier.  Hopefully with practice, he'll begin to tolerate it!  His therapist held him in a position so that he was strengthening hisneck muscles to hold his head up as well as to stretch his neck towards the left.  Cooper and Bo were big helpers in manipulating his toys to get him to turn the directions. They loved being involved in his therapy and asked many questions!  They told her that they can't wait for Caleb to take a bottle so they can help!

Mommy's feeling much better today.  I'm not dizzy anymore.  I just feel like I have a terrible headache and exhausted-  but that's functional!  :)

Dizzy Mom

Today has been one of those days that I find myself praying that I know God won't give me any more than I can handle, but my plate has already been filled, overflowing, and now broken.  Over the last couple of days, I've found my mind wandering, wishing, that this beautiful baby boy didn't have this awful physiology.  I've thought, wow,  it's going to start getting easier... then i remember that he isn't "repaired".  So waking up today with vertigo, myself, pushed me to my max!  I get it every so often and it is awful to feel so dizzy you have to hold on to a wall.  But add to that, caring for little Buddy and all that goes along with him, and his siblings!  We have been blessed with so much help throughout this journey (and we are so grateful to each of you and that huge thank you will come in a future post), but today God sent friends to help me get through today.  I look at each one that helped me and know that they had so much else going on in their lives, but so graciously gave that up to help us, from watching the boys, to bringing food, snacks, lunch, dinner, flowers, prescriptions, baby toothbrushes, and even the calls and texts mean so much and remind me of all the love and support for our family.  I guess it was God's way of reminding me that we'll just get through one day at a time, beat that day and be ready to tackle tomorrow.  (Just wish the boys didn't do so much "tackling" of each other-- especially starting at 6 am!)  Anyway... thank you so much to our amazing support group!  We are so, so blessed and loved.

GI Procedure Results

The results from the GI procedures showed that Caleb has allergy cells (eosinophil cells) in his small intestines; confirming that he does have a milk protein allergy.  They could remain in there for up to 6 weeks after he had the dairy and could be causing discomfort.  He is currently on Elecare which is a non dairy formula that is amino acid based.   He had many acidic reflux episodes that presented on the probe.  The doctor doesn't want to adjust any meds- he is maxed out already on 3 reflux medicines.  Prayerfully, with time, his body will heal and the terrible reflux episodes will reduce.  Since starting Reglan a week ago, I've already been able to tell a difference.  He isn't throwing up as often-- typically only once a day now.  If only we could get him to take a bottle or even just not be pump fed continuously!
 This is a picture of how he sleeps.  He loves to be wrapped in his miracle blanket.  The moment I wrap him, he manages to wiggle one of his legs out and then goes right to sleep.  When it's morning wake time, I unwrap him and he does the cutest stretches with every little muscle in his body.  This is my most favorite baby item!  All of my children have used it and I recommend it to every new mom.  Now, they were all weaned off it by 3 months, but this little guy may be using it a lot longer!  This picture shows off his hair puff.  He was born with really fun hair that the nurses loved to "style"- mow hawk, spikes, and fuzzy.  One of the medicines that he was on after the Glenn surgery made his hair fall out-- all but a puff at the crown of his head!  It's now starting to grow back in all over.

Happy birthday Bo

Our little Bo turned 3 a couple of weeks ago.  He has quite a fun personality.  He's very quiet in a sneaky way, obsessed with holding small toys, wants to wear his running shoes all the time, can eat yogurt and cereal three times a day, and rides his bike (or his friend Charlie's) as much as we would let him- even bringing it in the house for extra practice!   Love this buddy!

Still Waiting on Report

The official report from GI has not come back.  Since starting the Reglan medicine, we've had 3 much better days.  He's averaging 1-2 throw ups a day  (today only 1) and he isn't wrenching all the time, like he had been previously.  He continues to refuse the bottle.  I honestly don't try daily because he's been throwing up so frequently.  I had to take him in to have bloodwork done yesterday due recent med changes (decrease in lasix) to make sure his electrolytes were in balance.  Once again, it is nearly impossible to stick him.  The nurse tried a couple of veins in his arms and was about to try his head when I had to sit down and take deep breaths!  He was going nuts and it was a lot for momma to take in!  Thankfully, she was successful in another arm attempt.  His potassium was actually high, so we decreased a med.  He's pooping all of the time thanks to the new medicine, Reglan.  The purpose of it is to help with motility and it definitely does that!  He was pooping, no kidding, every hour and a half.  His cardiologist adjusted it on Monday and since then, he's going about 7 times a day, at least.  His little bottom is so raw.  Hoping some Happy Hiney rash cream works quickly!

Another GI work up

Caleb had a cardiology appointment Wednesday.  Our big challenge continues to be feeds.  He refuses the bottle, is fed over the pump NG continuous 18 hours a day at 38 ml/ hour; however, he projectile throws up at least 4 times a day making it hard to get in the amount per day due to giving him breaks after he gets sick.  He also wrenches in pain many times a day from the reflux.  We added the med Reglan to hopefully help and reduced his total feed time to 17 hours/day to give him more break time.  GI was consulted again.  We are at the hospital surgery center right now for an endoscopy, flex sig (rectal biopsy), and impedance probe to hopefully get answers and a plan.  We have to stay overnight, but praying that is all!

School= The Greatest Mission Field

The 1st full day of school is tomorrow.  I think I'm in denial that summer is over (or even that it existed).  I get a little sad about them being away all day; however, when I read the following message, I felt comfort.  A friend of mine, Laura Holaway, who I had the privilege of collaborative teaching with a few years ago, wrote these encouraging words about sending our children to school- the greatest Mission Field!  I hope as you read this, you find that same comfort I did, as well as a challenge to encourage our children to be a Christian light and "shine"!  (I am singing "This Little Light of Mine, I'm Gonna Let it Shine" in my head right now!)

"In my current job as a supervisor, mentor and coach for pre-service and classroom teachers, I spend time in countless classrooms, throughout numerous schools, public and private, across various counties. On the surface they can all look quite unique, however, at the core they are all the same. They all consist of principals, teachers, students, parents etc. I have found that there is no perfect school, no perfect teacher, no perfect curriculum, no perfect student, no perfect parent and no perfect principal. While the educational system is far from perfect, there is ONE perfect presence within our schools. Our omnipresent, perfect God is present in every school whether we realize it or not. In fact, HE was there this morning holding the hands of parents and children alike as they walked into school for the first time today. When mom and dad had to say good-bye at the classroom door, God remained by your child's side and is there still as I type. As you drove away from the school building with an empty carseat, God, himself was filling it with His presence. Though you may fill an empty space in your home now that school has started back, take comfort in knowing that God has the capacity to fill it. As you embark on the school year and are forced to let go of your child during the hours of 8am-3pm, hold on to the hope that you are not letting go, but that you are letting God...letting God lead your little one into one of the greatest MISSION FIELDS, our SCHOOLS. You are letting God reveal himself and his presence to your child in the wake of your absence. You are letting God show his limitlessness, where your presence and control is now limited. As the school year beings, let your little Christian light go into the world and shine. Encourage them to look for God in school. Use this year as an opportunity to grow their faith AND yours as well. They may be the smallest in God's army, but they can be the greatest...(David and Goliath). I encourage you to listen to Chris Tomlin's song: Whom Shall I Fear. Blessings for this school year! Change is never easy, but to grow, we must change. At least God remains the same today, tomorrow and always."  Laura Holaway

4 Months Old

Somebody special is 4 months old today.  This is his first "month birthday" to be home to celebrate.

Discharge!

After 4 long months (minus the week and a half he was home in May) of living in the hospital, two major open heart surgeries, and 2 cardiac catheters, Caleb was discharged today!  Mommy was a bit emotional, oddly enough.  We've been blessed with meeting so many amazing people through this journey.  I've become very close with the nurses, nurse practitioners, therapists, doctors, and other parents.  Everyone was so good to our family.  They not only took the best care of Caleb, but also of our whole family.  I truly count each one as a close friend and they will all forever be in our daily prayers.  As I was driving home, I pondered over the butterflies I had in my stomach.  I've never felt fear and worry in bringing home a baby like I had today.  I don't think it is fear that something is going to go wrong; however, the worry of NOT wanting to return to the hospital.  The kids were elated for their baby Caleb to be finally home.  He got many, many kisses, head rubs, and constant entertainment. Bo went upstairs and brought down toys to play with his brother.  Jake and Cooper decided that he needed to watch a show.  Kate was our little helper, making sure he was okay.  He's already had a very big emesis.  We are thrilled to be home; however, it is going to be challenging keeping up with his continuous feedings, medicines, preventing him from throwing it all up, and all of his equipment and monitors that come along with him!  Right now, I'm trying to decide the best way he'll sleep.   I don't know if I'll sleep a wink!  The hospital sent us home with the same guidelines and restrictions as his original discharge.  His health is still extremely fragile and anything could compromise his system.

Formula Allergy- again

Little man had a rough night last night.  He threw up multiple times and by this morning had developed a terrible rash all over his body.  He looked miserable- eyes bloodshot and sunken in.  He was very agitated.  He was having an allergic reaction to the new formula that we started yesterday.  We stopped that formula and returned to the previous formula, Elecare, and decided during rounds, to "regress" a bit- which is necessary- to get success by feeding him continuous for 18 hours a day at a slow rate and 6 hours off.  Hopefully, his body just needs time to heal and will be successful at this plan and eventually we can build from there.  He wrenched in pain and threw up two more times this afternoon; however, we suspect it was due to residual of yesterday's formula was still in his stomach.  Prayerfully, he will have a better night!  They did an echo today just to make sure cardiac is not the cause of his feeding issues.  Thanks to God, his heart function showed some improvement since the last echo from 7/31.  The size of his heart has also gotten smaller on X-rays, which is good news, as well.  It seems so crazy that with all of his heart issues, GI issues are what is keeping him in the hospital.  We pray that cardiac continues to stay strong and his reflux is controlled with our new formula and rate.

GI Assessments

We completed a 24 hour Impedance Probe today and they did an Abdominal Ultrasound and an Upper GI to attempt to gather data on his reflux issues to formulate a plan to control it.  We've changed his formula this afternoon to one that has a rice component in it.  We are hoping and praying something works!
An update on his chair-  He loves it!  It is the perfect angle to help with his bloodflow and reflux.  Other bouncer seats do not even compare.  He screams when laid down in his bed, but does better in the chair (most of the time).  We cover the whole thing in blankets to protect it from his spit ups!!

Zack took the crew to get ice cream.

Reflux

This poem was in my news feed a few days ago and it was special to read then, but today has really felt like God is shouting these words to me.  Caleb is doing so great in almost all areas.  His oxygen saturation has been within range and he is off oxygen!  (He doesn't even have the nasal cannula on.)  His headache is being managed with meds.  Super Daddy just went and bought him a special seat that we've heard rave reviews on for being at a great angle to help with the passive blood flow (Baby Bjorn Babysitter Balance).  If only we could get his reflux under control.  It has gotten terrible.  He projectile vomits 3-4 times a feed and wrenches in pain other times.  He refuses the bottle so I offer it every time, but then end up putting the entire amount over the pump.  We've adjusted the rate so that it goes in very slow and tried even slower.  We just tried increasing the calorie so that we can decrease the amount going in.  Praying that works.  It's just awful to watch him in such pain and then still have to put the milk in his stomach knowing it's going to hurt!


 "Still Would Have Chosen You"  By:  Terri Banish

If before you were born, I could have gone to heaven and saw all the beautiful souls
I still would have chosen you

If God had told me, "This soul would one day need extra care and needs"
I still would have chosen you

If He would have told me, "This soul may make your heart bleed"
I still would have chosen you

If He had told me, "This soul would make you question the depth of your faith"
I still would have chosen you

If He had told me, "This soul would make tears flow from your eyes that could fill a river"
I still would have chosen you

If He had told me, "This soul may one day make you witness overbearing suffering"
I still would have chosen you

If He had told me, "All that you know to be normal would drastically change"
I still would have chosen you

Of course, even though I would have chosen you, I know it was God who chose me for you.

A Terrible Headache

Today has been a "headache" kind of day- literally.  Poor little guy's head hurts so bad his eyes are bloodshot.  They are trying to stay ahead of the pain, but it has been difficult.  He hasn't taken much from his bottle and has spit up, projectile, multiple times.  He was on room air this morning, but has been desatting this afternoon, down to the upper 50s and is currently on .9 L of oxygen.

Bottle Feeds Again

Slowly weaning down on oxygen.  Yesterday he went to .1 and today he's on .06- literally a whiff, but when they tried to take him off it, he sat around 72-73.  His formula was increased to 24 calories and was still continuous and today we went to giving him a bottle feed of 120 ml every 4 hours!  This is a huge step.  Pray he tolerates it!!