This is the story of our precious baby boy, who was diagnosed prenatally at
17 weeks with a fatal chromosome disorder called Trisomy 13. Although
Jonathan's condition is considered "not compatible with life", we desired to give
him every chance at life. Our prayer is that those who are touched by our story
are drawn to God, who is Life Himself. John 14:6

To start at the beginning of our story, click here.


a piece of jonathan's heart

ever wonder why God does or allows some of the things He does?  i do, all the time.  the past two weeks or so have been full of bad news for the world and for people i care about.  the earthquake and tsunami in japan.  the death of a former coworker, the day before he was to get married.  a dear friend whose dog died a week before her mother passed away and whose father is very ill as well.  people i know who have sick babies or complicated pregnancies.  friends facing serious trials and even persecution.  i could go on and on. 

i have a perspective that i might not have now had i not gone through the suffering of losing jonathan.  and though i'm not comparing losing a baby to experiencing a devastating tsunami or anything, i feel that my response might be the same:  i don't know why God allowed it to happen, but i do know that the Lord provides at all times.

He provides for physical needs.  emotional needs.  spiritual needs.  even the needs that we have that we don't yet know we have.  during the time i was pregnant with jonathan and then after losing him, God's provision for my needs was comprehensive and even lavish.  today i still stand amazed at the graciousness of the Lord, even though i can't understand many of His mysterious ways.  and i'm OK with that, as i choose to believe with faith that of a child.  my prayer for my friends who are suffering as well as people who are suffering all over the world is that they would cling to the Lord for their needs.  and He is sure to meet them in their very place of need, and provide above and beyond what they would ever expect.

Because he holds fast to me in love, I will deliver him;
I will protect him, because he knows my name.
When he calls to me, I will answer him;
I will be with him in trouble;
I will rescue him and honor him.
With long life I will satisfy him
and show him my salvation.
~Psalm 91


speaking of the Lord providing for a need before we become aware of it....

i have another testimony of the Lord's gracious provision for us while we were pregnant with evan.  i haven't shared this story until now, mainly because i didn't want to cause anyone to worry about evan's health as the worry was not necessary.

we went to our first appointment with our specialist in pensacola about two weeks after we learned that we were having a healthy baby boy (evan.)   i was 17 and a half weeks pregnant, far enough along to get the detailed ultrasound that would focus on all of evan's organs to make sure that everything looked good. 

after what we had been through with jonathan, i had done enough research on trisomies and looked at a million ultrasound pictures of complications like what jonathan had, that i felt like i could have done the ultrasound on myself and i would have known what i was looking at.  (no disrespect to the docs or ultrasounds techs....but i'm waiting on my honorary degree.  ha!)  anyway,  everything looked great.  all of his measurements were perfect and there were no signs of complications or abnormalities anywhere.

until they scanned the heart.  beating?  check.  four chambers?  check.  working correctly?  check.  but then i saw it.  it was one of those "bright spots" that jonathan had in most of his major organs. evan had one in the left chamber. 

no one said anything about it during the ultrasound.  my specialist told us everything looked great and that he would meet us with the genetic counselor in the conference room.

soon we were staring at a sheet of paper with information about the "echogenic intracardiac focus."  it was explained to us that it was probably a calcium build-up or even just a reflection off of a muscle or tendon in the heart.  it was a "normal variation" of the make-up of the heart and had no affect on its function.  however, there was a small chance that it could be a soft marker for down's syndrome (trisomy 21.)

OK, what???

not what we wanted or expected to hear, especially with our history of already having a trisomy-affected baby.  our genetic counselor tried to reassure us best she could by offering the fact that since we both had normal chromosomes, the chances for us to have a second trisomy baby in a row would be astronomical.  still, we were offered to have an amniocentesis done that day.

greg and i went back and forth on the decision to do the amnio or not, and finally left the doctor's office and went to a bookstore across the street to escape the emotion and duress of being there while trying to make a tough decision.  we wandered around for what seemed to be a long time, mulling over the pros and cons of the amnio.

it was during this time that i reflected on that verse the Lord had given me the day i found out i was pregnant with evan:

Do not remember the former things,
Nor consider the things of old.
Behold, I will do a new thing,
Now it shall spring forth;
Shall you not know it?
I will even make a road in the wilderness
And rivers in the desert.
~Isaiah 43:18-19

in my heart i knew that evan was OK.  everything else in that ultrasound backed up the fact that evan was completely healthy.  but after all that we had been through previously, it was still hard.   i wanted to believe God for a completely healthy baby and believe that He was assuring me of this through that scripture.  it may seem black and white to some, but for us, with our wounds still on the mend, it was so very hard.

ultimately, we decided not to do the amnio for the risk it posed, even though our specialist had done literally thousands and had never had a loss.  we now had no way of knowing 100% that evan was chromosomally normal until he was born.  we opted instead for monthly ultrasound follow-ups and i took the quad-screen blood test to see if we had an abnormal screen.  only if i had an abnormal screen would we then proceed with the amnio.

so for two days i prayed non-stop for evan's health and for God to give us a normal quad screen result.  i did some research on down's syndrome and made peace with myself and the Lord if that was His will for evan's life.  i went back and looked at jonathan's screen results and even his came back normal at 1/321 for a trisomy.  (the threshold for "normal" is around 1/280.)  i wanted BIG numbers for evan, so there wouldn't be a doubt about it.  for my age, the chance or risk for down's was 1/528.  so i was hoping for something along the lines of 1/800 to make me happy.  and so i prayed for numbers.

two days later, it was numbers we got:  1/1200!

now, i know that God isn't just about numbers.  and i know about the false positives and negatives of this test.  but the Lord was bigger than my unbelief and He graciously provided relief for us through these numbers, even though He certainly didn't have to and we certainly didn't deserve it.  isn't He good??

so the bright spot on evan's heart became much less concerning to us.  a few people i talked to, including two physician-friends, were well aware of plenty of normal, healthy babies born after being found to have an echogenic focus.  each follow-up ultrasound we had on evan showed a big and healthy baby boy, perfect in every measurement, even though that bright spot was still there each time.

i know that the Lord created evan exactly the way he was meant to be, bright spot and all.  but why the bright spot was there, is one of those mysteries we may never have the answer to.  if it is just a normal variant that poses no health concern, then why not just leave it out and spare us the grief and worry?  maybe it's there for a reason we can't know about.  the Lord knew that we would become aware of it and be concerned and that's why i believe He provided that scripture for us to hold fast to.  He's amazing like that.

so for now, as i hold my precious, healthy, adorable baby boy, i like to think it's just a little piece of jonathan's heart that evan carries with him.  it's certainly another reminder to me of the Lord's graciousness to us.

2 weeks old