Remembered-By-God: 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.