Ladies' Home Journal

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

The Choice: To Have Life-Changing Surgery, or Deliver My Baby

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.

http://twitpic.com

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.

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.

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

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!!

Life and Love

Today I am thankful for the gift of life.

Three years ago, I didn't know if I would see past my 25th birthday.

I didn't know if I would live to see my newborn daughter grow up.

I was afraid, she would never know me.

I was wondering if I would ever get the call.

I remember vividly, holding onto the hope of life.

Praying each and every day for my donor and family.

Playing a lot of scrabble games in between.

Looking out the hospital window.

Praying, and hoping, and wishing...

When Mr. Lovebug, wrote this:

Today marks exactly two months since I last...

Slept in the same bed with you.

Rode in the same car with you.

Was your primary caregiver (in action).

Ate a real meal with you.

Tickled you.

Bought a McDonald's breakfast for you.

Was really alone with you.

Ate your homecookin'.

Got your meds ready for you.

Danced with you.

Really kissed you good.

I've spent more time with you in the past two months that in forever, and I wouldn't trade it for the world.

But still, I miss you like crazy.

Life: I never want to take it for granted. I am so grateful for my donor's gift of it.

Love: I want to lavish in it. I want to consistently remind myself of where we were, and where we are. I want celebrate it, everyday!

diary of a beachgirl

We Came

We Saw

We Played

We Loved

We Left

The End.

Thankful

There are so many blessings in my life right now.

I randomly found this picture this week. It brings back memories from 3 years ago. It was taken on Valentines' week.

Looking back, I am so thankful:

*I can hold, touch, kiss and speak with my daughter as often as I please. During this week I was able to see Lovebug for the first time. But I was not able to touch her right away. This was very difficult for me. I could not speak to her since I was trached and using the portable ventilator for visits.

*I can eat! I love to eat now, and I partly blame it on the 6 months, I had nothing but enteral tube feedings. Every now and then I had a special treat of applesauce and thickened juice. Eating used to be a battle for my first 25 years of life, now I can't keep food away.

*I can speak & laugh. Like I mentioned before, with a tracheostomy/vent I was not able to speak for quite some time. I missed being able to talk and to just plain laugh out loud. When I did laugh, my machine would beep non-stop.

*I can move. I love being able to go places now. Perhaps, this is also because I was strapped to my bed 24/7 for 5 months. I try to get out of the house with Gwyneth and explore the world each and every day. I feel privileged to do so.

*I can smell. During this time I could not smell. This may have been a blessing, since the hospital environment, especially the ICU is not filled with the most pleasing aromas. Even though my sense of smell is not at its best. I love inhaling my favorite scents: baby bath time, springtime, and foods.

*I can snuggle with my husband every night by his side. When I was hospitalized as a CF patient, Nathan and I would snuggle next to each other at night in the very small single hospital bed. With a ventilator, this makes it impossible, the times he did snuggle, my vent would pop off, and I would stop breathing. This made for a traumatic experience. I am very thankful for each night we spend together snuggling.

*I have new lungs from a donor who made the unselfish decision to donate life. I was waiting and praying every day for the possible donor and his/her family during this time. I hoped every day for a second chance at life. I am so thankful for this person and their decision.

*I can hang out with those I love the most: my family and friends. At the hospital, I felt like I was surrounded by a lot of love. My nurses, doctors, physical, speech therapist ect. all became my new friends. But I missed my church family, close friends and family back home. February marked the sixth month of being away from home. As the saying goes, "there is no place like home."


It was through this experience that I have learned to appreciate and cherish the moments I have. Moments of living, breathing, smelling, tasting and touching that which I love. It is good to be reminded, through pictures like these of where I have been and where I am now. To never forget and always be grateful. For each and every day with the ones we love!

A picture of my tiny little ladybug, three years ago this week.

check these out

These spark my interest:

free compliments: to place on your fridge or your local library

the anatomy of swinging: a special needs article I can really relate to

make time for family dinners: reminding families how to use our fork in changing the world

pistachio cake: what I made this week, it smelled so good!

Toy Story 3: Lovebug is in love with Woody these days.


Lastly, I will leave you with this happy thought. I love it. Source.

Sacred

This post says it so well, cfhusband.blogspot.com

It speaks about the fragile and precious first few days of my daughter's life. She was born at 24 weeks old. At the beginning, it was not recommended for me to continue my pregnancy, but I held onto God's promises. I held on with all my strength to my faith.

A beautiful "blessed white rose" was born. Our one pound, six ounce miracle is a great witness to God's faithfulness and protection over the life of the unborn. Even in the most precarious of situations, she was protected and survived her 24 week arrival. Life is sacred.

iphoto memories

I was glancing through my iphoto. I came upon these pictures. Then I chuckled.

What is worst?

That I did this to my child?



Or that I then, proceeded to do the same to my dog?

THREE

My Ladybug is THREE today.

She is fun. She loves to jump and sing and smile.

She is very loving. She will blow just about anyone a kiss. Sometimes she kisses strangers' cars.

She is very energetic. She moves all the time. When her body isn't moving, her head it.

She is tough. Tougher than anyone I know. Perhaps it is because she is missing nerve ending. We are not sure. But it takes ALOT to make her cry.

She is determined. She has her difficulties. With hearing and vision loss, mild cerebral palsy, and balance/coordination. But these things do not hold her back. She is a very determined little lady.

She is small. She is teeny. She was small at birth. (1 lb. 6 oz.) She is a tiny 3. (24 lbs.) But well proportioned for her delicate little features.

She is stubborn. She highly dislikes eating just about everything except for cheese, nuts, yogurt, and peanut butter.

She is cute. Yes, I am bias, because I am her mother. But my petite, blond haired, blue eyed, pink glasses and hearing aid wearing daughter who walks to the beat of her own drummer... I believe is adorable. I try to gobble her up each and every day.

She is a miracle. In every way. I believe God has a great things in store for her life. She was a wonder at birth. She amazes me now. I just know He has wonderful plans for her future.

And that's my three year old in a nut shell.

Sleep in Heavenly Peace

Wow, time seems to fly, and fast.

This time of year brings up so many memories. It seems as I listen to beautifully written Christmas music, memories flood in. I go straight back to 2007, when I was pregnant with Gwyneth. When my family and friends were praying fervently. When each breath felt like agony. When I wasn't getting any sleep for days on end.

But then, I would be reminded of God's love.

Through songs...

It was the Christmas music that I have always loved to listen to that would calm my spirit.

In the midst of a storm.

These songs I still cherish, bring back vivid memories of the ICU, family flying in to see me, a desperate plea for my friends to pray, for the life of my baby. For my life as well.

My last request was this: "Pray for our peace of minds, and for our families. This has been a very stressful and scary situation for Nathan and I. Things are beginning to happen so quickly and so much is uncertain. Our faith is not shaken and we firmly believe in miracles and the power of prayer. Please be sending our prayer requests to your fellow friends and family!"

God's power is unmeasurable. His grace exceeding. His love never failing.

Each and every Christmas, I am reminded of how blessed our family is.

Some times I get really frusterated at life. When Gwyneth won't eat, when home projects need to be done and money is short, when my husband feels ill, when I forget an appointment. And then I sit back and remember. I am breathing, Gwyneth is growing and enjoying life, I am loved by a wonderful husband, my family is healthy and alive and doing well.

Then I remember what Christ has done for me. He was a born into the earth to live and die for me. He has done great and marvelous things and continues to do so.

I am reminded of that heavenly peace that He gave when I desperately needed it. When I am open to it, it flows again, into my heart and soul and life.

Thank You Jesus for that holy night, many many years ago. When you were humbled and born in a stable. Thank you for your sweet peace in my life.

Apraxia

When meeting a little boy this past summer, something inside me clicked. I had an "aha" moment about my firstborn. This little boy had something called, apraxia. As his mother explained this disorder and how it related to him, I couldn't but feel an instinctive, gut feeling my daughter shared the same characteristics.

I told my daughter's therapists, doctors, anyone who was taking care of her of my suspicions. We even went to another hospital to get a second opinion to confirm these suspicions. They all agreed, my little ladybug showed some signs and most likely had apraxia.

When ladybug speaks, it is hard to make out what she is saying. She has a hard time getting words out. When she first learned to speak, it sounded like "ba ba ba ba..." Mama sounded like, "Aba" and so on. Her speech is slowly progressing and we are so excited. She still struggles to sound out all of the correct vowel sounds. And she also has a hard time saying multiple syllables. Her "go" sounds british, and her no sounds like, "mo." Her "oh no" is the cutest thing in the world. It sounds like her favorite character, "elmo." So if your around her and she were to drop something, you may hear her referring to that little red guy with googly eyes. But really, she is saying, "oh no."

A great website I found helpful when learning about apraxia.
http://www.apraxia-kids.org/

What is apraxia?

Apraxia of Speech is considered a motor speech disorder. For unknown reasons, children with apraxia have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech may also be called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia. No matter what it is called the most important concept is the root word "praxis." Praxis means planned movement. So to some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder.

{apraxia-kids.org}

Birthday Plans

Little Ladybug's Birthday is soon approaching. Not sure if her theme will be this...




Or this...

Hard Choice.

Maybe I'll let her decide.

Things I love about life and my lovebugs

* When my ladybug says, "ma-ma" it melts my heart. I waited patiently 32 months for her to say it for the first time. It was so worth it.

*When my husband takes me on a date. Especially if it involves horses!

*Therapist for special needs kids who love what they do.

*Nutella

*Breathing unaware (I am guessing this will only be fully understood by post-lung tx patients)

*Organ Donors: XOXOXO

*New Worship Music: Love is on the Move by Leeland

This is...

"Se-wious" -Ming Ming

Lovebug In Flight

Here is my little Ladybug.