Seeing Gavin in this sleep sack sparks a lot of emotion for me. My mom brought it over one evening when I was pregnant after we had gotten news from the doctors that things with Gavin would not be what we thought and he would be facing some serious challenges. She brought several outfits over but this one stood out to me. As I held it up I saw an image of myself holding up my perfect baby. I knew that he was going to be exactly who he was meant to be and that he would be perfect for us no matter what that looked like! P.S. It’s funny because I really thought he would have dark hair and brown eyes but he actually looks identical to the way I saw him in my mind!
I have a very talented friend who does prophetic paintings. She recently did this portrait for our family saying that we are strong and courageous.
What an awesome honor! It reminds me of a time when all of the many doctors were saying that Gavin’s health would be filled with serious problems. Even though it was really hard, we trusted God to take care of our family. It also encourages me to continue to believe that God is with us, wherever we go!
During one of the high-definition ultrasounds that I received while pregnant with Gavin, they had discovered that he had a VSD (Ventricular Septal Defect). That means he had a hole in the wall of his heart which seperates the ventricles. Congential heart disease.
VSDs come in a variety of sizes, each with specific attributes that may or may not require surgery. They did several EKGs (Echocardiogram’s) on him while I was pregnant and knew he would likely need surgery but we would have to wait to do an EKG when he was born for definite answers. Sometimes VSDs can close on their own and cause no problems so we were hoping for that prognosis!
At that point, we did not know that he would be premature and that we did not have as long to wait as we had originally thought. As soon as he was born they rushed him off to do all sorts of testing with different specialty departments and one of the things they did was an EKG, confirming that he would need heart surgery but they would have to wait until he was bigger.
This was right after he was born when they took him to see the specialists, Gavin is somewhere in all that equipment!
His first goals would be 1. Stomach repair/function (he was born with Duodenal Atresia and was not able the digest food), 2. Stability in all the areas where prematurity cause instability, and 3. weight gain.
Once we were home from the NICU, we began taking all measures to fatten him up. I would take a portion of the breast milk that I had pumped, wait for the fat to settle on the top (about 24 hours), siphon only the fat (hindmilk) off the top and add it to the regular breast milk. Then I would add avocado oil and vitamins to each bottle. Lucky for us, he couldn’t tolerate formula when we tried adding it to his bottles for extra calories so we had to think outside the box. People would see me making bottles and comment that it was the most complicated and time consuming baby feeding process they had ever seen!
Gavin’s VSD was causing his heart to work extra hard to keep him alive and it was burning extra calories while doing it. We were playing catch-up in every area while still battling feeding issues related to prematurity (Preemies have to learn to coordinate the suck, swallow, breath technique in sync without choking and causing a Brady episode which means their vital stats bottom out, they turn blue and they have to be stimulated in order to breath) and a severe tongue tie. Other things his doctors told us to do were to not let him cry because it burns vital calories and to not let him get sick.
We took our job very seriously. Our house was pretty much on quarantined lockdown, used as Gavin’s personal healing sanctuary with round-the-clock skin-to-skin for most of the summer.
I still remember the day that he hit 5 pounds like it was yesterday. We worked hard for that gain and we were thrilled! Throughout the summer we had regular visits with his team of cardiologists and even though he was gaining weight, they consistently said his condition had not improved. They said his weight gain was not enough, he needed surgery but he would not be able to handle it until he was bigger.
We had been praying for healing all along and at each visit we hoped they would say the hole was closed and he didn’t need surgery, but it kept not happening.
They would let us listen to his heart for ourselves and each time we heard the whooshing of blood flowing through a hole so big that our layman’s ears could hear it was still there.
We were honestly disspointed and a little angry but we never stopped hoping.
One night stands out in my mind, I was standing over him as I put him to bed in his swing (he slept sitting up because he had reflux from being premature). I remember starting out praying a typical prayer for his heart to be healed but this time was different in the fact that I got the clear realization that he would be healed, whether it was through surgery or through God’s hand alone. I remember saying and really believing “I know he’ll be okay, I trust that he will make it through this but it would just be so much easier and better if you would simply use your power to heal him without surgery. I know you can”. There was power in that moment and several others along with it.
Moments like the time we were at my Grandmother’s Memorial (sadly, she had passed away while we were in the NICU but my family decided to wait until we were home to have a service). Someone was talking with my husband about Gavin’s upcoming heart surgery and he boldly replied, “I believe he’s not going to need surgery”.
It wasn’t instantaneous, we had gone to a few appts where the cardiologists said he would still need surgery and we started declaring his healing and believing for it daily. We even came to terms with the real possibility that we would need to walk through heart surgery with him and were very grateful to have an awesome team of doctors that God had given us who could bring him healing through medicine. After all, healing is healing, however it comes.
At his next “routine” heart check up, August 28th, Gavin was almost 5 months old and had been steadily gaining weight. We went in for an updated EKG and to set his surgery date. We knew the drill and were just going through the motions. I’m embarrassed to say that we were honest-to-God caught off guard when it was time to hear the report of findings and his cardiologist told us the hole had closed, he would NOT need surgery and they were taking the failure to thrive label off his chart!
She looked a little unsure and confused when she said, “let me re-check his chart. Is this the same kid? No really, is this the right kid? I can’t believe it! What did you guys do to him?” Then she made us wait so she could have two other cardiologists check him out. They were all dumbfounded and said they just couldn’t believe it. I remember how happy my husband and I felt, I remember looking at each other and saying, “We can believe it”!
My mama heart was so relieved and overflowing with joy for my sweet baby boy and all I could feel was thankfulness. Thankfulness for healing and all the people who believed with us! So if you were one of those people, we thank you from the bottom of our healthy hearts!
Update: We recently had an EKG done at 9 months old and his heart still looks great!