The Odd Life of the Lovebug Family

Lovebug Family August Happenings...

Little Ladybug is doing fabulous with her cochlear implant. The day her implant was activated was not world changing for her, she even declared the device was, "too loud." But as she has become accustomed to the new & different sounds she is more aware of her surroundings. She frequently will cup her ear and say, "What's that noise?" Many sounds are new for her, so we explain what they are.  Or she will tell us she hears something. Just the other night, she ran inside to tell me on her nightly walk with Papa, that she heard an owl hooting for the first time. This makes us so excited as parents to see her new discoveries and learn more about the world around her. Her first mapping session at CASTLE will be next week.

I ADORE

my Sisters!!!

Mrs. Ladybug has been having a great couple of weeks. Since my Campath treatment & last Duke appointment, I have been feeling on the upswing. I have also had lots of quality time with my extended family recently which is some of the best medicine for my soul. I am still in the process of the transplant evaluation. Once I complete it, the doctors will have a better idea of listing time. Right now my goals are to work on strength training and weight. I've lost alot of weight recently and am back to my pre-tx cf malnutrition weight status. My doctors want me to get a feeding tube to help fatten me up. I've had two feeding tubes in my past and although I am really not looking forward to the procedure or sporting around a smelly, uncomfortable, long tube that connects to my innards, I know it's whats best right now.

FosterBug is still with us and is doing well. We are praying that long term plans to be with us will be in FB's future. We don't know how it will all pan out, but we know if it's in God's plan, things will come together. Mr. & Mrs. L saw the movie, The Odd Life of Timothy Green. I really enjoyed the movie and cried throughout it. I could really relate to so much of the story line. I think this is a must see for all parents, but especially for those who have adopted and fostered. This movie reminds me of just how thankful I am for fosterbug and the impact FB has had on our lives. It hasn't always been easy, but so worth the while. The last several lines of the movie resonated with my heart so much. I was basically crying like a baby by the last scene. Please take your family to see this film!

Our friends Jesse & Whitney at the Surfin' Spoon

  I have been beyond encouraged by the out pour of love, generosity, prayers, and thoughts of others. We have had two fundraisers to try and raise Duke's recommended $25,000 goal for transplant expenses and have raised between $6-7,000. : ) Our community is beyond wonderful and I am very thankful for everyone involved. Especially to Milepost 13, South Beach Grille, Surfin' Spoon, & friends and family at Nags Head Church.
 

Mr. Lovebug has been very busy this summer. When he is not working at NHC as a worship leader, he has been working nights taking pictures for his business, Nathan Lawrenson Photography. To help with our family's growing medical expenses. On most of his days off this summer, he has been driving Gwyneth and I to our appointments at Duke & UNC. He is a man I deeply love and cherish. Mr. Lovebug started off his love of photography, not of personal portraits but of the OBX scenery. I've included a recent picture he has taken at one of his favorite locations, the pier.

“Because there's nothing more beautiful than the way the ocean refuses to stop kissing the shoreline, no matter how many times it's sent away.” -Sarah Kay

Definitions for italicized words:
Cochlear Implant: "A cochlear implant consists of an internal and external component. The internal component is surgically inserted under the skin behind the ear, and a narrow wire is threaded into the inner ear. The external component, which looks somewhat like a behind-the-ear hearing aid, is connected to the internal one through the skin via an external magnetic disk.
Incoming sounds are converted to electrical currents and directed to a number of contact points on the internal wire. This operation creates an electrical field which directly stimulates the auditory nerve, thus bypassing the defective inner ear. Unlike hearing aids, cochlear implants convert sound waves to electrical impulses and transmit them to the inner ear, providing people with the ability to hear sounds and potentially better understand speech without reading lips." -hearingloss.org
Mapping: programming a cochlear implant to the specifications and needs of its user.

Faith, Hope, & Love

 

Sometimes being optimistic is easier said then done. These past few months have not been easy for our family. When I contracted the RSV this winter, we were told of the doctor's concerns that this could lead to rejection. Rejection, something that doctors are continuing to learn about and the treatment is not quite down to a predictable science. We were praying and hoping for the best. Throughout the course of the winter and spring I had up's and down's, many trips to Duke and back, and continual testing.

Despite this, my health seemed to be in a good enough state that we were able to continue with foster care. I have felt passionate about foster care. Why do we do it? Well, for many reasons. Because we both love children. We wanted to expand our family and since having a lung transplant didn't allow me to bring another child into this world, why not take care of a child in need. I too, was a foster child before I was adopted and have always considered being a foster parent myself. Our family also believes our role in this world is to care and love for the child that has no family. Being involved in our local foster care system has been such a blessing to our family. We love to share our stories of the two children that have been under our care.

Just this past month, my health has seem to go downhill quickly. Mainly my breathing and the symptoms of rejection that constrict me. This has effected my entire family. This past week has been the hardest. In so many ways.


But I hold onto my faith, God's promises, hope, and optimism. No matter how difficult it may seem.

God has shown me throughout the course of the day here at Duke, how I can be hopeful. He has shown me this through the course of my life.  I have been hearing good news throughout the entire day in relation to my health. I also am continually amazed by the prayers that are being offered on our family's behalf. It is very encouraging! The doctor's here have some very big decisions to agree on that could make/break my health. But I have to constantly be aware of who is really in control. My Master. These are the encouraging words Moses delivered to the Israelites before they entered the Promised Land, and which I hold onto today. "But Adonai — it is he who will go ahead of you. He will be with you. He will neither fail you nor abandon you, so don’t be afraid or downhearted."


There will be two important meetings taking place on Tuesday, that we ask you to be in prayer about. One is regarding our foster child and their placement during this time of uncertainty. Our family was in the process of considering adoption, so this is heartbreaking for us to say goodbye. The second is a meeting of Duke's transplant team to make a treatment plan for my health. My case is complicating, which makes the decisions for the doctors a bit more difficult. There will be about 10 doctors discussing the case and plan of treatment.

There are so many uncertainties for us at this time. But ultimately, we will have faith  that God has our foster child, our family, and my health's best interest at mind. We will have hope of His plan for us in the grand scheme of things. And that we will continue to love others as God pours His love into our hearts.

Romans 5:2-5

 Through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.  And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

Good bye RSV, Hello Rejection: Steady My Heart

This month and a half has been a bit tough. The after effects of the RSV have included pneumonia, lung infection and concerns of rejection and my PTLD returning. Physically and emotionally, this month has been very hard and exhausting.



My doctors have been most recently concerned with some spots that have managed to pop back up in my lungs. I had xrays, cat scans, pet scans, bronchoscopies and blood work this past month, all of which came back inconclusive as to if the spots were infection or cancerous. My doctors then ordered a second bronchoscopy to biopsy my lung lymph nodes and suspicious spots to get some more clear cut answers. I was very relived to find out, my PTLD was not the culprit, and that I did not need to be concerned about malignancies in my lungs. I was informed, that for the first time in my donated lungs almost 4 year life span, I have grade 2 acute and chronic rejection.



My doctors have been concerned all along with this RSV infection, since it put me at a much higher risk for developing rejection. I am thankful I am at a transplant center that is aggressive with it's care and was able to diagnose it early on.

Because of the rejection and infection. I am being treated with a strong IV antibiotic for the infection and another very powerful IV steroid and added immunosuppressive drugs for the rejection. It's going to be an interesting balance of reversing the rejection and controlling the infection. Added immunosuppressive drugs will increase the risk of cancer, which for me and my history, makes the balancing act a little more complicated. But I know at I am in great hands at Duke. And I can be assured that I am in the palm of my God's hands, which give me the peace I need to get through this obstacle.



These next several days and weeks will be tough on my body physically and emotionally. But I need to remember, despite these hardships, there is a reason, a purpose to it all. I also need to constantly remember about how much support we have received during all of this. My family, friends, and complete strangers have reached out to our family. Praying for us, sending us encouraging notes, making meals, watching our children and just loving on us. For that, I am so grateful for and undeserving of. Thank you.

Even it hurts
Even when it's hard
Even when it all just falls apart
I will run to You
Cause I know that You are
Lover of my soul
Healer of my scars.

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.

Happy Birthday to my sisters!!

RSV: Respitory syncytial virus

RSV: Respitory Syncytial Virus

If you are wondering, like me about the S, in rSv. Syncytial means: multinucleate mass of cytoplasm that is not seperated into cells.


RSV is a common virus with cold like symptoms. Not usually dangerous for the typical child and adult. Their immune systems usually take care of it in a few weeks. But it can be dangerous for children who are at risk like those born premature, those with lung problems, and the immunocompromised.


Here are some factiods about RSV:

• It's the most common cause of lower respiratory tract infections in children worldwide.
• Virtually all children contract it by the age of three.
• It's the leading cause of pneumonia and bronchiolitis in infants.
• It may play a major role in the pathogenesis of asthma and chronic obstructive pulmonary disease.
• It causes significant morbidity and mortality in immunodeficient patients.
• It spreads easily from person to person through contact with respiratory secretions.

Ladybug was given shots to prevent RSV for her first two years of life. This is a common practice for premature infants, since during the first 24 months of life, RSV can lead quickly to bigger issues. Ladybug girl presented symptoms of a cough and fever a few weeks ago and later on a runny nose. It is her first time with RSV and as a child with chronic lung disease of prematurity, makes me a little nervous as her mama. We have been treating her with tylenol, xoponex and pulmicort, and some cough medicine at night to help her sleep. It has taken her some time, but she seems to be at the end of this yucky virus. She used to loathe her fish face mask, but now as long as we keep her entertained, is great about holding it herself and doing her breathing treatments. We think having PFT tests as an infant, which forced her to cry through a mask, began this fear and traumatized her.


As a lung transplant patient who is immunocompromised, this virus has been the first that has given me a high febrile temperature and has given me trouble with breathing since I was transplanted. Whenever you have high temps or dropping PFT levels, it is a sign of infection and time to call your transplant coordinator. I called mine, and they told me to head over to the local ER for tests. I tested positive for RSV, was given fluids and a prescription for Ribavirin and sent home.

Now this is the part that makes me a little upset. Of all my years of life, never have I been denied a drug by my insurance company, except for a vitamin which I can handle. My insurance denied the oral Ribavirin because, "coverage is provided for use in combination with an alpha interferon for the treatment of chronic hepatitis C. " The drug seems to be mainly used for this purpose, but if you read further, it is also used for respiratory purposes. So, instead of purchasing a simple drug on my behalf I was put inpatient to be treated. Yes, insurance company: deny me a drug so you can instead pay for a 5 day hospital stay, that will save you some money! : )

In the end, it is a good thing the insurance company denied me I suppose, since I do have RSV related pneumonia. Plus, having RSV puts one at risk for BOS, which I definitely want to stay away from! All things happen for a reason, right?

Antibiotics are only effective against bacterial infections and viruses are generally a little trickier which is why they say, "there is no cure for the common cold." My RSV is be treated by inhaling an antiviral teratogenic and mutagenic drug called Ribavirin. I inhale it with this mask which is attached to a small particle aerosol generator and am covered in this lovely plastic tent. Duke, if one of the few hospital centers who performs this aerosol treatment. I get to inhale this breathing treatment at night for 6 hours. I will complete this treatment after 5 days. My nose blocks up with the chalky crystals every 45 minutes. As soon as the six hours is up, I take off my mask and fall into a deep, restful sleep.

I miss my family very much during this 5 day hospital stay.

I am using skpe for the first time and have enjoyed skyping with Mr. L, my family, and especially our children. The super bowl was last night, but skyping with my daughter was the highlight of my evening! I miss my Ladybug kisses very much. I miss our Fosterbug's hugs. And I miss Mr. Lovebug who has been amazing through this all and can't wait to get home to the Lovebugs 3.


The nurses, doctors, and staff at Duke continue to make me thankful for the blessings of incredible care at this top notch facility. As hard as it is to be away from my family, the nurses here are like family and make my stay feel like, home away from home.

I also have received letters at Duke from family, friends and strangers letting me know they are praying and thinking of me and sending love and encouragement my way. These kind words touched my heart and soul. If you sent one of those letters, I can't tell you how much that impacted me. Thank you.

A big game is coming up this Wednesday here in Durham, NC. UNC vs. DUKE. I will depart the hospital that day with this cheer:

GO.........

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