A Different Dream for My Child

Thursday, November 5, 2009

A Different Dream for My Child

It's been an incredibly draining 6 month roller coaster ride. We have been in the hospital 3 times now, and may be looking at a fourth time as sweet Rebekah seems to be getting sick again. I am not sure I am ready for this again.

I was in a Christian bookstore today with my friend Mindy looking for a Bible study to do. I came across a book called A Different Dream for My Child (Meditations for parents of critically or chronically ill children). I haven't even read the first chapter but browsed to the chapter prayer which caught my attention in the bookstore:
"Dear God, my heart is breaking for my child today. My spirit is crished by fear of what lies ahead. I can't find words to pray, Father, so please pray for me. Be near to my child and be near to me today as your word promises."

The Lord is near to the brokenhearted
And saves those who are crushed in spirit.
Psalm 34:18 (NASB)

This is a book I think all of my T-18 Mommy friends need to get too. Also, please visit the author's website for more information, books, and resources! Jolene Philo is a wonderful Christian author!

3 comments:

Jolene PhiloNovember 6, 2009 at 2:17 PM
Dear Susan,

Thanks so much for mentioning "A Different Dream" on your blog! And I'll be praying for you and Rebekah as you seek God's dream for her life!
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Jolene PhiloNovember 6, 2009 at 2:20 PM
Dear Susan,

Me again - I though the information about www.DifferentDream.com would show up, but it didn't. Parents can find more resources there, too.
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JenNovember 24, 2009 at 7:55 PM
Hi Susan- It's hard when our little ones are sick. My youngest has a chromosome deletion. I am about 2/3 of the way through this book and it's a great book. I hope you can find a few minutes to read it.
Jen
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Trisomy 18 and Rebekah

Our life changed drastically in December 2008 when our baby girl, Rebekah, was diagnosed through amniocentesis around 20 weeks gestation as having ‘full’ Trisomy 18.

Trisomy 18 (T18) or Edwards Syndrome is a genetic disorder caused by the presence of an extra 18th chromosome. The syndrome has a very low rate of survival, and babies with T-18 typically have complex medication problems resulting from heart abnormalities, brain defects, kidney malformations, spinal cord defects, and other internal organ disorders. Cleft lips and palates are also more common in babies with trisomy 18. They may have hand and foot anomalies. Babies with trisomy 18 may have difficulty regulating their breathing and temperature. T-18 babies typically have severe mental deficiencies and tend to grow/mature at an extremely slow pace. They may also be unable to feed properly and often require G-tubes. Neurological defects cause many problems with these children – the brain simply ‘forgets’ to tell the heart to beat or the lungs to breathe and seizures are not uncommon. The body often just ‘gives out’ after a period of growth and progress.

Because of the large number of potential medical problems, babies with trisomy 18 are usually considered “medically fragile” and the medical community likes to use the phrase "Incompatible With Life". About 95% die in utero. Of liveborn infants, only 50% live to 2 months, and only 5–10% will survive their first year of life. The median life span is five to fifteen days. One percent of children born with this syndrome live to age ten, typically in cases of the less severe mosaic Edwards syndrome. Major causes of death include apnea and heart abnormalities. It is impossible to predict the exact prognosis of an Edwards Syndrome child. Because major medical interventions are routinely withheld from these children, it is difficult to determine what the survival rate or prognosis would be with aggressive medical treatment.

Our Rebekah Faith was born at 38 weeks by induction on 4/21/09, weighed 4lb 6oz, and was 17” long. After 7 days in NICU to establish feeding, address jaundice, and assess her health, she came home with us on an apnea monitor and with a N/G tube for feeding. She weighed 4lb 1oz. An oxygen monitor was then added to the entourage of medical accessories. At the 2 week mark, she was 1 ounce past her birth weight and appears to be doing well overall except for several bouts of bradycardia (low heart rate), and apnea (stop breathing) during each day that requires physical stimulation to reverse. Those episodes got worse, and she was admitted to the PICU at 6 weeks old. At about 7 weeks, it was determined that she had severe obstructive apnea and the easiest and most effective treatment would be a tracheostomy. She got a trach and g-tube, and we haven't looked back since!

Every day with Rebekah is a blessing from God. In utero, she was diagnosed with a VSD hole in the heart, only one kidney was ever seen, brain abnormalities, and she has two rocker-bottom feet with one twisted to the side from malformation of the bone. Once she was born, it was verified that her VSD had closed in her heart, and a renal ultrasound showed TWO kidneys (she has a horseshoe kidney)! She actually fed exceptionally well by bottle, another exception to most T-18 kids. But once she was trached, she was unable to suck as strong as she needed to keep feeding exclusively by mouth.

Our children adore their baby sister and she brings much joy and love to our household. We thank God for this precious child and the path we are on with her.

Rebekah Faith is 'Redefining Incompatible With Life' everyday!

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Thursday, November 5, 2009

A Different Dream for My Child

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