Moments with Moriah: Sitting Pretty

Saturday, June 13, 2009

Sitting Pretty

Moriah has until Tuesday to prove to us that she's healthy. So far so good.
In the meantime, we've just been hanging out.
Tick tock tick tock tick tock...

Mommy, can we go home now?

6 comments:

Tanya said...: I love this post! The pictures are ALL really really sweet. The family picture is really great! I'm so glad that Moriah is doing so well. I hope it works for you to go home. I have been keeping you all in my prayers and will continue to do so. Thanks for the updates.; June 13, 2009 9:11 AM
Kristi said...: Soooo cute!
LOVE the one of Justin sleeping in the background!; June 13, 2009 10:46 AM
Amber said...: Look at my lovey!!! She looks amazing. :0) *that daddy love must be working wonders!*
Kisses from me....; June 13, 2009 12:20 PM
joan said...: Yay, I am glad Moriah is feeling good and home could be just around the corner! I will pray for her continued health so that you can be at home to enjoy some outdoor fun with family and friends just in time for summer!; June 13, 2009 1:47 PM
Eva Nichole said...: I LOVE all the pics and I hope and prayer she continues to do well!
Hugs,
Crystal and Eva; June 13, 2009 5:16 PM
Anonymous said...: Such a cute baby girl! Wishing you all the best, and prayers for such a sweet angel!; June 13, 2009 6:40 PM

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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.