A letter to our family and friends - September 22,2015

Catherine Grace - September 21, 2015

Catherine Grace - July 30, 2015

Catherine Grace - June 30,2015

Catherine Grace - May 13, 2015

May 5th – Today we had what our OB calls a “well-check.” At 15 weeks, 3 days there is no ultrasound, just blood pressure check for me and listening to the baby’s heartbeat via doppler. Everything checked out fine and we got to hear the baby’s heartbeat! What a relief! It’s funny, I don’t remember ever having anxiety over these routine appointments with Maddie, but this time around I was extremely tense.

As far as appointments go, these type tend to be fairly uneventful. This one was no different. Under different circumstances I would have gone to this appointment alone, but given the fact that we had received such high risk test results, Matt joined me. With no new information, there wasn’t much for the doctor to discuss with us except to explain more about the Harmony test. The doctor explained that if we drew blood for the Harmony test there was a good chance the results might be in before our appointment with the specialist the following Wednesday.

Thus far, I have avoided doing any research regarding Trisomy 13 and 18. Uncharacteristic for my typically type “A” personality.



May 13th – Today was our amniocentesis.

We began with an extremely long ultrasound after which a doctor reviewed all of the images and discussed her findings with us. By this point, Matt and I were certain that an amniocentesis is what we wanted – in fact, our desire for 100% certainty had not wavered once since learning our high risk results. The doctor’s opinion at that time was that there was nothing conclusive in the ultrasound images; however, she could perform the amnio and we could have results as early as Friday afternoon.

Our appointment ended with the amnio. Talk about emotional! I was emotionally and mentally drained.




May 15th – 16 weeks 6 days

Trisomy 18. Edwards Syndrome. Incompatible with life. Lethal anomaly.

Our amnio test results came in the afternoon from a doctor within the specialist practice. He was very patient and allowed Matt and I to three-way the call so that we could hear the results “together.” Unfortunately, we were both on our way home on one of the worst traffic Fridays either of have seen for quite some time. I cannot imagine that delivery of this type of news is easy to deliver, but this particular doctor was very kind. He explained that the results are preliminary, but are 99.999% accurate. No reason to believe that once the final results are in that they will reveal anything different.

Our baby girl has Trisomy 18.

Nothing will ever be the same. My outlook on life has totally changed. Every second spent with Maddie is more meaningful. I’m so thankful that God gave me Matt. I cannot imagine this journey with anyone else. Happiness is a choice and is not defined by circumstances. We will find a “new” happy. As individuals. As a couple. As parents.

I still haven’t researched Trisomy 18. I will. Just not tonight.

Catherine Grace - April 21, 2015

April 28th – I received a telephone call today from my doctor. On this particular day, I couldn’t imagine what the doctor would want to discuss with me. Some of the test results from our last appointment were in and showed high risk for a genetic disorder. To be more specific, there was a 1 in 4 chance that our baby had a chromosomal abnormality – Trisomy 13 or Trisomy 18. The blood test results do not differentiate between the two, but more diagnostic testing would be available if Matt and I wished. I had never heard of either Trisomy 13 or Trisomy 18 and told the doctor as much. She explained the basic chromosomal make-up of humans to be that of 46 chromosomes – 23 from mom and 23 from dad. Trisomy 13 and Trisomy 18 are caused by an extra chromosome of either. The doctor went on to explain that either a Trisomy 13 or 18 diagnosis would mean our child would be “incompatible with life.” With shaking hands and a racing heart, I called Matt to relay the news. What did we want to do? Fortunately, we had a doctor’s appointment scheduled for the following week and could have blood drawn for another non-diagnostic test called Harmony. Another option was to schedule an appointment with a genetic counselor and a perinatologist for an amniocentesis. Matt and I discussed and decided to make the appointment with the perinatologist. The amniocentesis results would give us 100% certainty. Unfortunately, at 14 weeks, 4 days I wasn’t far enough along in the pregnancy for the amnio. We needed to wait until at least 16 weeks gestation. We scheduled an appointment for Wednesday May 13th.

Catherine Grace - March 17,2015

The Unfinished

The Unfinished

http://www.funeralhelper.org/

We cannot judge a biography by it's length,
Nor by the number of pages in it.
We must judge it by the richness of its contents
Sometimes those unfinished are among the most poignant.

We cannot judge a song by it's duration
Nor by the number of it's notes
We must just it by the way it touches and lifts our souls
Sometimes those unfinished are among the most beautiful.

And when something has enriched your life
And when it's melody lingers on in your heart
Is it unfinished?  Or is it endless?

Inspiration from Scripture

Romans 5:1-5

Therefore, since we have justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand.  And we boast in the hope of the glory of God.  Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance character; and character, hope.  And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us.

Jeremiah 1:4-8

The word of the Lord came to me, saying, "Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations."  "Alas, Sovereign Lord," I said, "I do not know how to speak; I am too young."  Bu the Lord said to me, "Do not say, 'I am too young.'  You must go to everyone I send you to and say whatever I command you.  Do not be afraid of them, for I am with you and will rescue you," declares the Lord.

Matthew 18:1-5, 10, 12-14

At this time the disciples came to Jesus and said, 'Who is the greatest in the kingdom of Heaven?'  So he called a little child to him whom he set among them.  Then he said, 'In truth I tell you, unless you change and become like little children you will never enter the kingdom of Heaven.  And so, the one who makes himself as little as this little child is the greatest in the kingdom of Heaven.  Anyone who welcomes one little child like this in my name welcomes me.  See that you never despise any of these little ones, for I tell you that their angels in heaven are continually in the presence of my Father in Heaven.  Tell me.  Suppose a man has a hundred sheep and one of them strays; will he not leave the ninety-nine on the hillside and go in search of the stray?  In truth I tell you, if he finds, it gives him more joy than do the ninety-nine that did not stray at all.  Similarly, it is never the will of your Father in Heaven that one of these little ones should be lost.'

Mark 10:13-16

People were bringing little children to him, for him to touch them. The disciples scolded them, but when Jesus saw this he was indignant and said to them, 'Let the little children come to me; do not stop them; for it is to such as these that the kingdom of God belongs.  In truth I tell you, anyone who does not welcome the kingdom of God like a little child will never enter it.'  Then he embraced them, laid his hands on them and gave them his blessing.

Wisdom 3:1-9

But the souls of the upright are in the hands of God, and no torment can touch them.  To the unenlightened, they appeared to die, their departure was regarded as disaster, their leaving us like annihilation; but they are at peace.  If, as it seemed to us, they suffered punishment, their hope was rich with immortality; slight was their correction, great will their blessings be. God was putting them to the test and has proved them worthy to be with him; he has tested them like gold in a furnace, and accepted them as a perfect burnt offering.  At their time of visitation, they will shine out; as sparks run through the stubble, so will they.  They will judge nations, rule over peoples, and the Lord will be their king for ever.  Those who trust in him will understand the truth, those who are faithful will live with him in love; for grace and mercy await his holy ones, and he intervenes on behalf of his holy ones.

About

Welcome to our blog.  These pages document our family's journey with Trisomy 18 beginning with the diagnosis of our daughter, Catherine Grace.  Most stories contained herein are sad, but we hope that an underlying theme of joy permeates throughout.  Our journey has been a true test of our faith, marriage, hope, and love. Our time with Catherine Grace has blessed us beyond measure.  Our faith in the Lord grows deeper daily, our marriage is stronger than ever, we are infinitely hopeful with each new day, and we love deeper than we could have ever imagined.  We are eternally grateful to God for allowing Catherine Grace to be a part of our lives.

If you are reading our story because you find yourself in a similar situation, we hope that you find peace and comfort in what we have chosen to share.

To family and friends, we are endlessly appreciative of your unending support throughout this journey and are forever grateful for your love.

Helpful Links

Trisomy 18 Foundation
"Represent(s) the hope that those lost to Trisomy 18 will never be forgotten, that those who face Trisomy 18 will be supported, and that one day Trisomy 18 will be eliminated."

http://www.trisomy18.org/


Support Organization for Trisomy
"SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and other related chromosomal disorders."

http://trisomy.org/


Northside Hospital H.E.A.R.T.strings Perinatal Bereavement Office
"Provides support to families experiencing the death of a baby or a the loss of a pregnancy ..."

http://www.northsidepnl.com/


Chasing Rainbows
Blog of the perinatal loss office at Northside Hospital

http://www.northsidepnl.blogspot.com/

A Blog for Fathers When a Baby Dies by: Tim Nelson

http://fathersgrievinginfantloss.blogspot.com/