Showing posts with label prematurity. Show all posts
Showing posts with label prematurity. Show all posts

11.2.12

Ladies' Home Journal

I was excited to see the latest issue of Ladies' Home Journal feature this story in their March issue.

I had the privilege of meeting both Editorial Assistant Amelia Harnish and Health Director Julie Bain during a girlfriends trip to NY City this winter. Amelia gave my friends, Rebecca and Lesle, and I a tour of Ladies' Home Journal.


David Molar and his wife Tammy did the photo shoot for the magazine. They are such a great couple with such amazing talent. If you ever have the chance to see David's work, check it out.


One of my favorite photo of the day was of our family.


It's ironic that the article came out the day I was being released from the hospital. This is the first time in a long time that I have felt very sick. I am still recovering from the RSV, pneumonia, and infection. It has been a harder road then I expected. I do feel so thankful for all of the prayers, letters, meals, gifts and well wishes from everyone to keep my spirits up. I am trying to reflect on present blessings and all of the amazing things God has done in my life, to bring me to where I am this day.

12.1.12

Cochlear Implants

Ladybug's hearing loss has been a progressive loss. She passed the newborn screening test. It wasn't until a year in a half later, when she was re-tested, that the doctors became concerned. It appeared that Ladybug had a sensorineural hearing loss and it was progressive. This could be a result of many reasons. We know from genetic testing, that her hearing loss is not genetic. We do know, being an extremely small premature infant comes with many risk factors. One of which is vision and hearing loss.



It was right after her second birthday she was fitted with her first pair of phonak hearing aids. She loves her hearing aids. In the morning, if we do not put them in right away, she will ask for her "ears." The hearing aids help amplify the sounds she can hear. But because of her severe to profound hearing loss, there are some sounds she is just not picking up. Most of them are in the high frequency range. Here is a demo of what hearing loss sounds like.




It appeared this fall during a typical audiological and ENT appointment, that Ladybug's hearing was becoming progressively worse. Her doctor at UNC wanted for us to come back in three months. It was at this latest appointment her doctor informed us, he would recommend a cochlear implant for her right ear.

We are in the process of taking this information and doing some research on children who have one cochlear implant along with one hearing aid. If Ladybug had an implant, she would be hearing naturally with amplification in one ear and unnaturally but with the sound field she is missing in the other. We want to make the best decision for her. We understand that making the decision sooner then later, will only benefit her, if we feel that it's the right thing for her at this time.

Any advise from parents of children who have had both a cochlear implant and a hearing aid would be greatly appreciated.

9.1.12

Happy Birthday Baby Girl

Our daughter turned FOUR on January 8, 2012.

It's hard to believe.

I teared up yesterday as we were looking through pictures of her birth and after seeing this one, Ladybug pointed to Nathan's hand and said, Jesus. I suppose she thought it was Jesus holding her hand and after seeing all the events that took place four years ago, He sure was. We are so proud of our little miracle girl and how far she has come.



Our baby girl at 1 pound, 6 ounce: tough, a fighter, determined.


Now, a sweet & loving little girl who weighs 27 pounds. She enjoys giving great bear hugs and loves to hang from objects like a monkey. She loves to draw, talk, and play. Her favorite characters are Diego, The Little Mermaid, and Woody. She loves her daddy!




“Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it.”
― Mother Teresa

28.3.11

March of Dimes

Ladybug was born premature. She was born at 24 weeks. We support the March of Dimes organization for their premature birth campaign focusing on awareness and education.

Gwyneth has been one of the ambassador children in our county. We feel blessed to be apart of this campaign in which the money that is raised, "supports programs in your community that help moms have healthy, full-term pregnancies. And it funds research to find answers to the problems that threaten our babies." {March of Dimes}

Our local walk is in Manteo at the Roanoke Island Festival Park on May 7th beginning at 9a.m. It is a wonderful event and walk which helps us raise local support to this wonderful cause. If your a local, we'd love to see you there!

We believe in being an active part of our community, and to give back to the organizations which have affected our family directly. This is why we walk for the March of Dimes, the CF Foundation, and support other local events like the relay for life. I will have on my facebook, opportunities to help our family monetarily support these great causes.

I love this baby teaching us on how the March of Dimes is directly affecting babies and their research.

And it you can help by giving to Team Ladybug to help the research and work being done, please click here.

Thank you so much!!



17.11.10

November: Premature Awareness Month

Here is some information about common premature health risks.

Our little Lovebug had surfactant given to her before birth which gave her a greater chance of survival. Because of the oxygen and respirator machines she was on, she had ROP, eye muscle surgeries, wears glasses for nearsightedness, and Chronic lung disease of prematurity.

We are thankful each day for the March of Dimes and the strides they are making in research and coming up with better solutions for extremely premature infants which are at great risk.

The following article is from the March of Dimes website. It talks about research being done and treatment.

"Premature babies are at risk of many serious medical complications. One of the most common of these is respiratory distress syndrome (RDS). Babies with RDS struggle to breathe because their immature lungs do not produce enough surfactant, a protein that keeps small air sacs in the lungs from collapsing. March of Dimes grantees helped develop surfactant therapy, which was introduced in 1990. Since then, deaths from RDS have been reduced by two-thirds.

Although surfactant treatment was a major breakthrough, March of Dimes grantees continue to improve it. About 20 percent of babies with RDS do not respond to surfactant treatment. Natural surfactant contains four known proteins, called SP-A, SP-B, SP-C and SP-D, but surfactant treatments contain only SP-B and SP-C. Grantee Ka Yee Christina Lee, PhD, of the University of Chicago is studying the structure and function of SP-B in order to design an improved synthetic surfactant that can mimic the activity of the natural protein and be effective when the one currently available fails. Along with surfactant, many babies with RDS receive additional oxygen and mechanical breathing assistance. These treatments, though lifesaving, can contribute to lung injury and a chronic breathing problem called bronchopulmonary dysplasia (BPD). Up to 50 percent of the smallest survivors (under about 2 pounds) develop BPD. Machiko Ikegami, MD, PhD, of the University of Cincinnati, is investigating whether adding SP-D to commercial surfactant treatments will help prevent BPD. This surfactant protein appears to help the immune system fight off lung infections and may help prevent the inflammation that contributes to lung injuries.

Lifesaving oxygen treatment unfortunately contributes to retinopathy of prematurity (ROP), a leading cause of blindness in premature babies. It results from abnormal growth of blood vessels in the retina. March of Dimes grantees are seeking to find out how too much oxygen triggers this response. The retina is the delicate light-sensing tissue that lines the back of the eye and sends messages to the brain. In severe ROP, the retina may detach from the back of the eye, resulting in loss of vision. As many as 16,000 premature babies in the United States develop some degree of ROP each year. The smallest babies, those born at less than 32 weeks gestation, are at the highest risk.

Laser and other treatments can sometimes help preserve vision in babies with severe ROP. Grantee Guo-Hua Fong, PhD, at the University of Connecticut Health Center in Farmington, is seeking to find out whether a specific gene becomes overly active when there are high levels of oxygen, possibly triggering the abnormal growth of blood vessels in the eye. If so, it may be possible to develop preventive treatment by inactivating this gene. The outlook for premature babies has improved greatly. However, many of these babies face serious complications and lasting disabilities. Many March of Dimes grantees seek new ways to improve the care of these tiny babies, and others strive to prevent premature delivery" {March of Dimes}