JOURNEY WITH JONAH

Precious Jonah

Our precious son, Jonah, arrived into this world at 11:30 pm on April 26th, 2011…He was delivered fast once it got going and came out crying.  Immediately he was whisked away to be cleaned up and his vitals were checked.  We saw him for about 15 minutes before he was taken away to the NICU. The next morning we saw him again for 30 minutes before he was officially admitted into the NICU, which ended up being for almost a month (27 days). 

We knew beforehand that Jonah was was going to be born with a heart defect called an Atrioventricular Canal defect (AV Canal defect). This entails a hole in the upper (ASD or Atrial Septal Defect) and lower (VSD or Ventricular Septal Defect) chambers of his heart.  In addition to the holes, he also has a single valve in his heart that is supposed to be two valves.  The surgeon, Dr. Benjamin Peeler, whom we met with in February, stated that splitting this valve into two working valves is the art of his craft and the most challenging aspect of this surgery.  To fix the holes in his heart, Dr. Peeler will place patches to cover the holes and stitch them into place.  Flesh will cover the patches and this tissue should be a lifetime fix for Jonah.  Dr. Peeler stated to us that he is one of the best, if not the best surgeon in the nation in fixing this particular heart defect (and he didn’t sound arrogant when telling us this).  We are truly blessed that we won’t have to travel to Philadelphia or Boston to have this surgery performed, we can do it right here at home in Charlotte.  Praise the Lord!

In addition to the heart condition, Jonah was born with Down syndrome (DS) which is also called Trisomy 21.  This basically means that Jonah was born with an extra 21st chromosome which will involve additional challenges for all of us. The heart defect that he has is something doctors refer to as a hard marker for DS (about 45% of children with DS have congenital heart disease. Of these, 20-25% have atrioventricular canal defect); so we were fairly certain that he had DS before we officially found out a few days after his birth. We did not get the amniocentesis test (this test can tell you if your child has DS) done before he was born.  This test can increase the chances of a miscarriage and us knowing or not knowing wasn’t going to change anything.  Anyway this subject is an entirely different post that I will tackle later.  Joyce actually had a dream that the Lord revealed to her even before we knew about his heart condition that our baby had Down syndrome.  So we definitely were prepared for this news.  Many other complications are linked to DS that will have to be addressed in the future.  If you’d like to learn more about these here is an excellent link; we’ll just be taking these as they come, again dealing with the heart defect is priority number one right now.

Lastly, and this is the one that all the kids in the neighborhood want to see, Jonah has a sixth finger or second thumb on his right hand.  The extra thumb was probably our biggest shock when Jonah was born. It’s not an issue at all at this point. It isn’t usable so it will probably be removed in the future once his heart is fixed. I appreciate the bluntness and un-political correctness of children, it truly blesses me.  Zeke and I were taking Jonah for a walk and a little boy from the neighborhood comes up to us and asks, “is that the baby with six fingers”?

Brothers (L to R): Zeke, Elijah, Jonah, Ben

Right now we are currently just loving on our little guy one day at a time, feeding and snuggling with him as he needs and we need.  With his time in the NICU we missed out on a lot of bonding time with him.  It almost felt as if we had to ask if we could hold our baby in there; we are grateful to have him home with us 24/7 (he’s been home a little over 3 weeks now).

Yesterday (6/15) we had an appointment with Jonah’s Pediatric Cardiologist, Dr. Hammill (whom we love dearly, he told us his sons pray for Jonah, so sweet). Jonah’s weight gain wasn’t stellar to say the least, about 4 oz in 2 weeks. They would like to see a gain of about an ounce each day).  Dr. Hammill told us he was going to suggest to the surgical board to schedule surgery in the next month.  The reasoning for this is to get the heart fixed which is the cause of Jonah not being able to eat as he should.  Due to his heart condition he tires very quickly and uses a lot of calories just to eat; so it’s almost a catch 22 situation, you want him to finish his bottles but he may end up using more calories to eat than he is taking in.

We were by no means expecting to hear this; at least not before Jonah was two months old.  His oxygen saturation readings were in the high 90’s and even at 100%, which is phenomenal for him with his heart defect. His heart and lungs sounded perfect too.  When Dr. Hammill suggested we get the ball rolling we weren’t ready to hear that, but sometimes that works out better as it doesn’t continue to weigh on your heart and mind much longer.  This happened to us when we went for Joyce’s normal routine prenatal check-up on the day Jonah was born too.  We weren’t expecting the doctor to tell us to go home and get our stuff and to check in to the hospital to deliver in a few hours.  So we rejoice in knowing that it won’t be much longer until Jonah’s broken heart is mended, and we can look forward to Jonah thriving in regards to gaining weight without have to feel like he is running a marathon every time he eats.

In closing we continue to covet your prayers and encouragement.  We are so thankful that my mother lives near us and has been here to stay with the other children while we were running back and forth to the hospital before and now to multiple appointments.  We were blessed and amazed by brothers and sisters in Christ that came along side us and met and exceeded our needs in this time.  We had meals for over three weeks brought to our doorstep!  We were blown away by those who pitched in and bought us a brand new air conditioner! Hallelujah…cold air!!!  That was something that was truly weighing on our minds, but we just didn’t have the time or the finances to deal with it in this season, even though the temperatures were beginning to creep into the 90’s.  And thank you to everyone who prayed and visited and encouraged us; we truly saw what the body of Christ can do when it comes together!  It is such a blessing to know that we have brothers and sisters in our midst to help carry these burdens.  We give our Lord and Savior Jesus Christ all the praise and glory!  ~ D

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2 comments on “Precious Jonah

  1. Jaime
    July 17, 2011

    Jonah is too cute! Congrats.

  2. Michelle Parker
    September 19, 2011

    Hi Dan,
    Mom and Dad are here and we sure enjoyed the website the boys are all growing up. Mom (Bev) says hi and to let Pat know we got on to your site. Jonah is so precious and You are a truely blessed, Love you all Michelle (Schilousky) and Rob Parker

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This entry was posted on June 16, 2011 by in Educate, Family, Jonah, Siblings.

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