I really felt like my heart needed to do a“give back” session. To pick a family that has seen a tougher side in life and give them the spotlight.
“To whom much is given, much is required.” ~Luke 12:48
I want to say thank you to Jenna & John for welcoming me into their home and being extremely candid in telling their story. The amount of love, faith, and strength that is expressed through your story restores my faith. Your unwavering faith is the greatest gift you can give to Isaac.
So here he is, Meet Issac Asher. The face to “Isaac’s Beat”.
Isaac is so full of joy. You can’t help but smile when introduced to him. Then you laugh along with Jenna & John because their joy fulfilled by this little boy is just out pouring. I love that John kept calling him “Champ”. It was so fitting for this little boy who has fought for life before it even began.
Isaac has a CHD, Tetralogy of Fallot or TOF.
“TOF affects 2 in 10,000 children. Each case has 4 possible components and Isaac has all four. TOF is a cardiac anomaly that refers to a combination of 4 related heart defects. Ventricular Septal Defect, Overriding Aorta, Pulmonary Stenosis, & Right Ventricular Hpyerptrophy. Babies with TOF usually have a patent ductus arterioles, at birth it provides additional blood flow to the lungs, so severe cyanosis (Turning Blue) is rare early after birth. As the ductus arterioles closes, which it typically will in the first days of life, cyanosis can develop or turn severe. Which means your new baby could turn blue in color. Isaac’s stayed open, so thankfully he did NOT turn blue! Can you image having a newborn baby at home and having these additional worries?”
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Hard to believe that at 25 weeks pregnant, Jenna knows right down to the day, September 28, 2015, due to some unforeseen bleeding, and after a high risk ultra sound, they were informed, their baby boy had a heart defect.
When I asked Jenna to share her story with me, one thing stuck out so much. Jenna said this,
“Becoming parents is all John and I have ever dreamed of and prayed for……There are days we still look at each other in awe over the fact that Issac is ours…”
And in a matter of 25 weeks….they were set in battle mode. Ready and willing to do anything it took to keep their son healthy. Countless high risk doctors appointments, pediatric cardiologists appointments, and lots of questions with a lot of research.
“There are some weeks I felt like I lived at Mercy, 3-4 visits a week until Issac was born. On December 21, 2015 I was placed on bedrest in the hospital. I was to stay there until Isaac was ready to be born, his due date was January 14, 2016.”
I would have to say Thankfully little man decided to come a few days earlier.
“December 28,2015. The best day of our lives! Our big boy was born weighing in at 8lbs 7oz. He was in the NICU for 10 days. You know that excitement you ha when bringing your baby home and showing him off? I have that picture of the Lion King on the mountain holding his baby up. We didn’t get to do that. ”
Not only did they now have a handsome newborn, but they were repeatedly told Isaac could NOT, absolutely could NOT get sick. “He would be hospitalized if he were to get the flu or RSV. RSV could be life threatening for heart babies. This is why we couldn’t take him in public, be around kids, or pretty much anything….”
Did you catch that last sentence?
The winter Isaac was born was one of the roughest flu seasons we had in Missouri. Not only did they have the normal worries of having a newborn, but they had a so many additional worries on top.
“This was when MamaBear mode kicked in. It’s what is best for Isaac and that is all that matters. It’s no more about those Lion King moments.”
Jenna & John were just getting started, they had to prepare for their brand new baby to have open heart surgery at 4 months old. Honestly the thought brings tears to my eyes.
On May 19, 2016 their little boy went for open heart surgery at Cardinal Glennon Hospital St. Louis where Dr. Huddleston (#1 heart surgeon in St. Louis) placed synthetic material over the large hole in Isaac fragile heart. This will fix 2 of the 4 problems stated earlier, and the other 2 will heal themselves after surgery. 7.5 hours later, 4 days in PICU, and 3 days in the step down unit. Jenna & John quickly learned they were on Isaac’s time and that God will be with them every step.
“That saying, “God doesn’t give you more than you can handle” is a tough one. I think does give you more that you can handle, so that you rely on Him, pray, and pray more.”
Jenna & John knew that if they were going to get through this they needed Jesus. Absolute unwavering faith. So prayer, lots and lots of prayer was in their arsenal of defense.
It truly takes knowing the love of our father, to peacefully rely on him to hold your baby in his arms and keep him safe, to give the gift of extreme accuracy to the surgeon, to patience while you wait to hear he is finished and everything went well.
“While that day was a blur, I remember meeting with the surgeon after surgery. I hugged him right away. After all, he just performed a lifesaving surgery on my 4 month old baby boy.”
Jenna found amazing strength in being a Mother. She wanted every detail. Wasn’t afraid to speak up and ask what was going on. She forced the doctors to say things so she could understand. No matter what her and John were going to get through this. There was then 8 weeks recovery at home after a long 7 day hospital stay. Still had to keep Isaac home and watch who was around. Jenna says during this time she became the germ-aphob she never knew existed inside of her.
“That consisted of restrictions of basically everything. We couldn’t pick him up under his armpits, we had to scoop him up. No tummy time. No overexerting. No nothing.”
All for Isaac. Their blessing. The human God trusted them with.
“Isaac will always live with CHD, TOF. It doesn’t go away once his heart was repaired. This is our normal.” His most recent visit went “as to be expected”, because they don’t use the term “normal’ “Isaac will go to yearly cardiology appointments until he is 5 years old or longer if need be. They will perform echocardiograms and EKG’s at those appointments. Cardinal Glennon St. Louis is an amazing hospital and we sing their praises everyday!”
I am sure from the pictures you can tell that Isaac is a very happy little boy. Actually from the pictures I have shared so fair, all anyone says is “Theirs our happy boy!” Isaac by far has the best facial expressions and eyebrow usage of any almost two year old I have ever met. He was so welcoming, silly, and friendly. He showed me his room, his toys, he wanted to share his book with me and was just so happy. So full of joy. You can tell that this little boy has been showered with love since birth.
John & Jenna chose Joy. They chose to keep God close during times of struggle and it just exudes through Isaac. He is truly made up of all the good things John & Jenna are.
“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds because you know that the testing of your faith produces perseverance.” ~James 1:2-3
“We continue to pray for his health and his little heart on a daily basis and we ask you to join us!” ~John & Jenna
Want to help with TOF research? Go Here!