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Marissa

Marissa was born with Pierre Robin Sequence on May 22, 1998. She had a cleft in the soft and some of the hard palate and a small, short chin. Marissa had a tracheostomy at the age of two weeks and had her palate surgery at 11 months. At the time of her palate surgery they also put in ear tubes. Marissa has never had an ear infection but did have quite a bit of fluid behind her ears. Her pictures are presented to you by her parents.

Daddy, Mommy and me just a few hours old. We were told about Marissa being diagnosed with Pierre Robin when she was about 14 hours old.
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Even at a few hours old, I have my big brother
(Bobby, 8-1/2) wrapped around my little finger!

My Daddy learning how to feed me with that funny looking bottle they call the Haberman feeder. Before I had my trach I had to sit forward or be on my belly to breath. [First day in NICU, 75 miles away from my Mommy.]
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My Mommy finally gets to see me again!
Boy, have I missed her. It's been a long four days!

We are finally home! (4 weeks)

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Just a few of Marissa's supplies.

"I thought babies with traches were supposed to be QUIET!!"
(Ryan, 4 and Marissa, 2 months)

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First Christmas: Ryan 4, Bobby 9, Marissa 7 months

...At 7 1/2 months Marissa contracted a life threatening case of RSV and was on a ventilator for 10 days, and in PICU for 2 weeks. During the first week Marissa suffered from many complications and the Drs. were not sure she would survive. By the second week she began to get better and was weaned off of the vent. However, the Drs. were not sure if Marissa had suffered any permanent brain damage due to oxygen deprivation. When Marissa came home she was so weak she could not hold her head up, was unable to move the right side of her body, she could not track or focus on any objects and she did not appear to be able to hear very well. But, by the grace of God, in two months, Marissa not only survived she made a 100% recovery. She is still known as the miracle baby at the hospital. Marissa has been hospitalized twice since then, once in March and again in May with asthma-like attacks. The Drs. are hoping she will outgrow this by the time she starts school...

"Look at my new trick! I can be even louder with my finger in my trach!" (11 months)

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Me and the best 2 brothers a girl ever had!
(Bobby 9-1/2 yrs, Ryan 5 yrs, Marissa 1 yr)

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Marissa at 1 year. What a year it has been!

Marissa at 18 months old and trach free! (11/16/99)

Marissa, Our Christmas Princess, 18-1/2 months old (12/7/99)

July 14, 2000 - Marissa is 2 years old. In the close-up picture you can still see her trach site that sinks in a little. On August 9th she will have her ear tubes replaced and they are also going to touch-up her neck so it won't sink in anymore.

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