Moments with Moriah: And to Justin

Saturday, June 20, 2009

And to Justin

Happy Father's Day. You are the Best Daddy to Moriah. We love you.

7 comments:

Eva Nichole said...: Happy Father's Day to one of the best men I know!!
Hugs,
Crystal and Eva; June 21, 2009 8:13 AM
Tanya said...: Sweet post! Happy Father's Day! Hope it's a great day for you and that little Moriah is doing great and having a good day.; June 21, 2009 8:19 AM
Anonymous said...: we love you guys!
happy father's day, justin!
love, brian and elyse; June 21, 2009 2:50 PM
Chez Family said...: Happy Fathers Day Justin! You are an amazing dedicated Daddy. God Bless.
Love, Terra and Adam; June 21, 2009 5:52 PM
hannah m said...: Happy Father's Day to Moriah's wonderful dada! *H+V+v; June 21, 2009 8:56 PM
Andrea said...: Happy Father's Day Justin! I've never met you, but I know your wife and daughter are absolutely in love with you!; June 22, 2009 4:45 PM
Kristi said...: Happy Belated Father's Day, Justin! :-)
Moriah is a lucky girl to have you!; June 22, 2009 10:11 PM

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Moriah was in the hospital for the past 11 1/2 months between LPCH and CHLA. During this time, she had two open-heart surgeries (one of them being a 12.5 hour full repair of her heart - yes!), a diaphragmatic plication, survived severe septic shock, and recently received a tracheostomy. She battled fevers and infections, most of unknown origin for 8 months, and they finally diagnosed her as having an undefined immune deficiency. After an acute bleeding incident from her trach, Moriah was life-flighted back to LPCH from CHLA, and our family finally made the decision to move to Northern California. Moriah is finally out of the hospital and is beginning her rehabilitation at the Children's Recovery Center. We ask that you continue to keep our sweet girl in your prayers as we continue on this journey. Thank you for all the love and support. Love, Justin and Victoria

Moriah's Diagnosis and Medical History

Diagnosed in utero with a heart defect, Tetralogy of Fallot, Pulmonary Atresia, and Multiple Aorto-Pulmonary Collateral Arteries (Mapcas)

Open heart surgery at 5 days old to connect her pulmonary artery to her aorta (Waterston shunt) - they saw later that this was not even a pulmonary artery but a collateral

Clinically Diagnosed with CHARGE Syndrome
She has a mild coloboma in either eye, heart defect, delayed in growth and development, has a horse-shoe kidney, and failed her newborn hearing screen

Pyloromyotomy surgery to correct her pyloric stenosis.

G-tube Surgery

Gastro Esophageal Reflux Disease (so severe it lead to sleep apnea)

GJ tube placement: she is continuously fed through the jejeunem (small intestines) while g-tube continuously drains to gravity

Was thought to have a seizure disorder, but we saw that these "jerky" movements ceased after stopping her Reglan (a common motility drug that may cause severe side effects )

A total of 5 Heart Catheterizations

On continuous oxygen as of June 19, 2008

Nissen Fundoplication Surgery September 2008

A FULL REPAIR OF HER HEART on November 14, 2008 -Unifocalization Surgery performed by Dr. Frank Hanley at Lucille Packard Children's Hospital

Open heart surgery to fix a compressed lung on December 10, 2008

Diagnosed with Abdominal Migraines or what is also known as a variation of Cyclic Vomiting Syndrome . This is resolved with routine doses of Neurontin and if in case of a breakthrough, PRN doses of Ativan)

Right Diaphragmatic Plication after phrenic nerve injury from previous heart surgery January 2, 2009

Severe Septic Shock February 9, 2009

Tracheostomy surgery at 15 months old, April 2009

Has battled fevers and infections, the majority being of unknown origin, since December 2008. We have finally found that prophylactic antibiotics help, and we have gone 1 month infection-free, after not being able to go longer than 14 days without infection since December. She is diagnosed with an undefined immune deficiency

She is being tested for a mutation of the Digeorge Syndrome gene. She does not have the deletion of the gene.

Heart Status: Heart Fully Repaired. Although she does have pulmonary hypertension, which is being treated with Sildenafil (a.k.a. viagra!) We pray that this will subside as she gets stronger. Otherwise, she only has to have open heart surgery to have her pulmonary valve replaced every few years, and her heart caths every 6-12 months.

We finally found out that Moriah cannot hear out of her left ear, and has moderate hearing loss in her right ear.