Monday, August 14, 2017

Taming the Tongue, Gorging the Gut, and Holding the Heart

Where to start?  Our last post was November of last year (2016).  My how there have been SO many changes.  Zachary had his thumb surgery last June.  He is able to do so much with his new thumb. You wouldn't even know he was previously missing a thumb, unless you stop to count his fingers.

We moved (yes, again), last November 2016.  We settled into our new place and the boys are having a blast in the pool this summer. (We have determined that the boys are partly sea creatures.)

Micah and Josiah are back in school.  I cannot believe Micah is in first grade and Josiah is in kindergarten.  Zachary started pre-school this past February 2017 and he loved it! He will start school again this year, next week.

We have had a multitude of appointments this past 9 months.  Follow-ups with all of his doctors and medical team as well as his home health nursing meetings.  From a medical standpoint, Zachary has been doing well.

Taming the Tongue

We started an intensive feeding program at Phoenix Children's Hospital at the end of June.  When they say intensive they do mean intensive!  We have been driving to PCH EVERY DAY since the start.   The daily therapy sessions end August 11 when we will transition to twice a week, then once a week, then every few months.

The goal is to get Zachary off of his feeding tube and be able to gain enough weight so we don't have to use it anymore!  This is a GIGANTIC goal for Zachary because he has always been dependent on the feeding tube.

One of the first things the therapists work with on Zachary is how to use his tongue.  He never took a bottle or was breast fed because he was so sick when he was born which did not allow his brain to train his tongue to help swallow food.  They play these games with Zachary to get him to use his tongue correctly when he eats.

Gorging the Gut

Once a week, we also see a GI doctor that helps monitor Zachary's weight and overall gut health. These appointments are on top of his regularly scheduled visits.

Zachary has been off of his feeding tube since July 20th which is about 2 weeks longer than he has ever been before this program.  He has maintained his weight, which is good and now the goal is to make sure he does not lose weight and to make sure he starts gaining weight.  I was looking back at our records and Zachary has actually been about 12kg (26.4lbs), give or take a bit, for about the last 6 months.  We need him to GROW!!!  Since we are working so hard to not need the feeding tube we don't want his gut to be compromised. His complicated gut is one of the main reasons he has not been gaining weight.

We had an echo and cardio appointment last week.  Zachary's cardiac function seems to be close to the same as previous visits, but we have seen a small drop in his blood oxygen saturation (aka Sats).  He used to be about 80-85% and he now consistently seems to be in the 75-82%.  If they get much lower than 75%, his body will start to prioritize his lungs, brain and heart over his GI tract which will slow down digestion. Ugh!

With all this said, Zachary's doctor thought we might be looking at his next heart surgery sooner than later.  Not tomorrow or next month, but possibly next spring.   We originally thought we would be going down this road when Zachary was a little bit older like 6-7 years old.  We will continue to monitor Zachary's Sats which will dictate when he needs the surgery.

We hate having to think about another heart surgery.  Each one sucked! There are always complications and he stays in the hospital way longer than we want. We are exhausted trying to survive the ordeal.

We are so thankful for all God has done in Zachary's and our lives.  It is so amazing to look back on those VERY dark days and to think we didn't think he was even going to make it home to be a part of our family.  Now look!!  He is such an amazing little boy.  His snuggles, his laugh, the way he plays with his brothers, to the way he has fought so hard for life.

Holding The Heart

We had the pleasure of meeting Dr. Ryan and Dr. Raj at PCH.  Dr. Justin Ryan works in the Cardiac 3D print lab and Dr. Raj was the first anesthesiologist to work on Zachary when he was 3 days old.  Dr. Raj was not able to intubate Zachary with the smallest ET tube they had at the hospital.

This was when we found out about Zachary's airway issues.  Dr. Raj sat down with us in the NICU waiting area and explained everything to us (twice actually) and even wrote it down for us in simple English.  This was probably one of the darkest days on this journey.  I remember feeling like there was NO hope.
Here is a picture of the heart we got for Zachary.  This is actually a 3 prints model of his heart!  The tiny one on the left is just and example, so you can see what a "normal" heart looks like.  The one on the left is Zacharys.   If you notice the one on the right had a big purple side and a big red side.  Then look at Zacharys and you notice the big purple side, then the other side is just a sliver of red.  This puts into perspective how when we say he is a "single ventricle" or "he only has half of a heart" we mean he literally is living off of half of a heart!  Hope this visually helps.  

By God's grace we made it through.  We would not be where we are today if it wasn't for all the prayers and support we had.  Dr. Raj was amazing and was able to have Dr. Ryan make a 3D printing of Zachary's heart for us.  It is AMAZING.  It really puts into perspective how Zachary really does only have half of his heart.  Here are some pictures for you to be able to visualize what a "normal" heart looks like compared to Zachary's.

Apple Annie's Orchard - Willcox, AZ

Big Red Chair @ Apple Annies

Sunday, November 20, 2016


Hello Friends!

We are sorry for the long delay between this post and the previous post. We seem to be at a spot in our family's life where we can enjoy being 'normal'. We are not out of the woods, in fact, we are still very deep in the woods, just enjoying an open field.

Yay! The boys CAN play nicely in the same room!

Bike helmets - the optional safety equipment when doing plumbing.

Micah reading to Zachary and Josiah

Dog duty- another bike helmet safety requirement

I love seeing Becky hold Zachary before bed.
Zachary is growing and getting taller and getting stronger. He is using his muscles and strengthening his core more and more every day. He is amazing his therapists each week as he develops new skills from the "playtime".

He is going to be starting preschool in the next couple months when we figure out which school will best fit his needs. The school district is already approved him qualifying for preschool as well as having a full-time nurse to be with him during school hours (major hurdle but Becky is tenacious!). The nurse will be our nurse that we have already hired to work with him at home! Yes!

Zachary 'playing' with his therapists.

Oh yeah, we are also moving. We are slightly crazy! We have decided that the house we are in will no longer meet our needs and so we had put up for sale and are closing the day Monday following Thanksgiving (11/28). We are also closing on another house simultaneously, which will be a bit tricky, but with your help we can do it. We are going to load moving trucks on Sunday and then wait until Monday to drive them to the new house. If you want a work out, we would LOVE YOUR HELP! Yes, it seems like we just did this so Lord willing, we will stay in this new house a LONG TIME!

Last week, Zachary had another ER visit. He started coughing and developed croup like symptoms. We did everything we could, but he did not recover so we had to get him to PCH quickly. After a dose of Epi and another steroid, he was sent home. We were tired the next day and a friend of ours found out an had pizza delivered to us. We are very thankful for that family seeing the exhaustion and meeting a need. We had another family bring us cookies and a movie.

Zachary is scheduled to have ANOTHER surgery on January 6th. He has a hemivertibrae (half a vertebrae) that is causing Crazy scoliosis. This one will suck for Zachary because he will be in the hospital for a few days and then most likely in a cast or stiff brace 24/7 for at least 6 weeks. Please pray for this surgery coming up.

I ask that you pray for a family whose son is admitted to the NICU at Phoenix Children's. Here is their blog. It makes my heart break knowing that these parents can't hold their baby boy right now due to his fragile state.

More pics since the last post...

Josiah wasn't a fan of getting wet until....

Revenge is a dish best served at full pressure!

This is a fun app.  Face swap

Guess who?!

Sanitation Duty

Monday, June 20, 2016

Thumb body is doing great!

Life has run away with our time.  Our last post was about Zachary leaving PCH where they gave him a thumb.  We never thought we would be able to post that post, ever.  Zachary did amazing during and after that surgery.   We are now in thumb therapy 2 times a week.  We now get to drive to Scottsdale twice a week :-).  So Zachary gets physical therapy, occupational therapy, speech and thumb therapy (2x) each week; he is a busy dude.

Zachary is still struggling to eat.  He has the ability to eat, he just cannot eat a lot at once.  We run his feeding tube all night so he gets his calories in for the day.  We are working with his GI doctor to figure out if we need to do some more tests to see why he can't handle the volume.  The challenge for Zachary's doctors is to determine if Zachary's heart is shunting too blood from his gut which causes the gut to slow down or if there is something inherently wrong with his gut.

We also had a follow up appointment with Zachary's orthopedic doctor.  We have been watching the progress of his spine.  He has an extra piece of vertebrae that has caused scoliosis.   The scoliosis has progressively been getting worse, which means he will have to have surgery to remove that extra piece so it doesn't cause long term issues for his back. We are going to plan to do this surgery next summer.  This will be Zacharys 15th surgery.  
Again, thank you to all who have and continue to pray for Zachary and our family.  

Family time at the DBacks game!

Zachary coloring with his new thumb!!!!!

The thumb after the cast was removed.