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January 22, 2019 Beautifully Different, Children 0

Beautifully Different – Fletcher

Beautifully Different

A Project Celebrating Differences and Triumphs

Fletcher is Beautifully Different

Meet Fletcher. This little guy is so amazing and sweet! Fletcher was born with Craniosynostosis, a Congenital Heart Defect, and Pierre Robbin Sequence. He has been through more in his little time here that most people do in their entire life, and a beautiful smile remains on his face through it all! He is truly incredible, and Beautifully Different!

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The Diagnosis

Fletcher’s family learned of his differences within just a few days after he was born. He has Craniosynostosis, a Congenital Heart Defect, and Pierre Robbin Sequence.

Craniosynostosis

Craniosynostosis is a birth defect in which one or more of the fibrous joints between the bones of the baby’s skull (cranial sutures) close prematurely (fuse), before the baby’s brain is fully formed. Brain growth continues, giving the head a misshapen appearance. His fusion was the sagittal suture. Fletcher has had two Cranial Vault reconstruction (CVR) surgeries. His first surgery he was hospitalized for 3 days and his second he was there for 5. Both surgeries lasted 6-8 hours long.

Congenital Heart Defect

A congenital heart defect (CHD) results when the heart, or blood vessels near the heart, don’t develop normally before birth. There are many forms of CHD, anywhere from very mild to fatal. For Fletcher, his is mild. He has three holes in his heart that require monitoring and one that is looking like it will need surgery on.

Pierre Robbin Sequence

Pierre Robbin sequence is a condition present at birth, in which the baby has a smaller than normal lower jaw, a tongue that is placed further back than normal, and an likely a cleft palate. This combination of features can lead to difficulty breathing and problems with eating early in life. Pierre Robbin sequence may occur alone or be associated with a variety of other signs and symptoms. Thankfully, Fletcher’s case is mild and he did not have a cleft palate.

A Day in the Life of Fletcher

Fletcher’s day is pretty typical to that of most boy’s his age. He has been affected by his differences with little things like eating, growing, talking and developing. He is doing all of those things but each has and continues to be something that he has to work at more than a typical 3 year old boy. Fletcher is lucky to have a really big family, so he has an amazing support system to help him!

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Tough. Sweet. Determined.

Fletcher has the absolute best personality! He loves people and especially babies. Fletcher is so tender and sensitive to people hurting. He was a little shy at first but warmed up quickly with some help from his Mom and Big Sister! You can tell just from his interaction with his family that he has all the love and support in the world, it was an amazing thing to experience.

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January 6, 2019 Beautifully Different, Children 0

Beautifully Different – Evelyn

Beautifully Different

A Project Celebrating Differences and Triumphs

Evelyn is Beautifully Different

Meet Evelyn! She was born at just 29 weeks gestation. Evelyn is classified as a “Very Preterm” infant (Delivery occurring before 32 weeks.) She spent 50 days in the NICU at the hospital. During that time, she had several different treatments and services, fed through a feeding tube, as well as intravenously being given lipids and proteins. While not all premature babies experience complications, being born too early can cause short-term and long-term health problems. Generally, the earlier a baby is born, the higher the risk of complications. Currently,  it is unknown if Evelyn has any disorders or defects. Her family is still learning more about her as she meets with her neonatologist, occupational therapist, and dietitian. They do know that she will be developmentally delayed for the first two years, if not longer, depending on when she meets her milestones in the first two years.

Evelyn is Beautifully Different!

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Evelyn’s Arrival

The week prior to Evelyn’s arrival, her mother was admitted to the hospital because of the impending premature birth. On their first night there, the neonatologist on call came to their room to discuss with Evelyn’s parents what their birth would look like, as well as what Evelyn’s life would look like for the first two years. All they could do was hope that Evelyn would stay in utero for as long as possible. Their team at the hospital told them that every extra day they could keep her inside equated to three days on the outside.

A Day in the Life of Evelyn

Having a preterm baby at the height of cold and flu season can be scary. It’s the season where leaving the house is totally restricted, so her daily routine is pretty much the same each day! Morning sees Evey’s first dose of Zantac for the GERD she has (most feeding tube babies end up having a severe form of reflux from the tube forcing their throat open constantly). She then gets an additional dose at night, along with poly vi sol, a multivitamin with an extra iron supplement, as she’s also anemic.

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Incredible. Resilient. Brave

Evelyn is truly the light of her parents lives. In her mothers words; “I was scared out of my mind that our perfect pregnancy had come to a conclusion that nobody wishes for, but wouldn’t have changed a thing about how this wonderful girl came into our lives. Her arrival is such a reflection of who she is, and will become. She may have been a mico-preemie, but she is without a doubt, the biggest blessing.

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