So, I figured for those of you who are just joining us and don't have the time or desire to spend the few hours that it would take to read through every post here, this is a good way to learn all about us in just a few minutes.
My name is Nathan Lawrenson (most people call me Nate). On June 27, 2004, I married Patricia Suzanne Kirschner (everyone calls her Tricia), and we began our crazy life together. Up until September of 2007, we had been living in Nags Head, on the Outer Banks (OBX) of NC for two years with our dog, Meka and our cat, Ralphie.
Tricia has Cystic Fibrosis (CF), a terminal, genetically inherited disease that especially affects the lungs. When we were married, she was showing outward signs of the deterioration that her CF was causing to her body, and, with the support of her medical team, we quickly began trying to start a family, knowing that our window of opportunity was small.
In May of 2007, after a few unsuccessful years of trying to become pregnant, Tricia’s disease had progressed to the point at which her doctors strongly advised that we stop our efforts to conceive and consider undergoing the evaluation process for the double lung transplant that could save Tricia’s life. Trusting in our doctors’ wisdom and in God’s control, and coming to terms with the fact that we would never be able to have our own children after that point, we took their advice.
Yet, all this time, since before we were even married, Tricia had been praying a secret prayer…it was even a secret to me. Tricia had been praying for a miracle baby.
In July of 2007, Tricia went through the week long evaluation process at Duke University Medical Center to determine if she was a candidate for a transplant. She was a candidate, and we began making plans to temporarily move to Durham, NC to be close to Duke.
In early September, the day before Tricia was to begin the physical therapy that would prepare her to be placed on the transplant list, we found out that we were unexpectedly pregnant. Against the advice of many of our doctors, we chose to keep the pregnancy, having been told that both Tricia and the baby had less than a 50% chance of surviving.
From September through December, Tricia did physical therapy five days per week to keep her body in the best shape possible, all the while growing sicker and more dependent on oxygen. On December 27, Tricia went into the hospital for what we hoped would be a short stay. The short stay turned into a long stay.
Because of her deteriorated health, Tricia was moved, on January 3, 2008, to an ICU room. During this time, Tricia was getting less than one hour of sleep per every twenty-four hours. The baby was just under twenty-four weeks old (gestation) and doing as well as possible.
On January 8, Tricia was taken to the OR where she was sedated, given a tracheostomy and placed on a ventilator, with the hope that she could carry the baby for a few more days. The trach and ventilation went well, but Tricia was too unstable to return to the ICU, and the decision was made to perform an emergency C-Section right there in the OR. There were no less than 75 medical staff with Tricia in that room that day.
Gwyneth Rose Lawrenson was born that day at 24 weeks and 4 days gestation, weighing just under 1 lb 6 oz and measuring 12 inches long.
Following Gwyneth's arrival, Tricia was placed in a medically induced coma, which lasted for nine days. She was slowly weaned off the paralytic and sedation meds until she was fully awake and aware of all that had taken place.
Tricia remained on the vent in the hospital for over four months as she slowly regained some of her strength. On February 22, less than seven weeks after giving birth, Tricia was listed and activated on the double lung transplant list. She was given a high score but was told that new lungs may be difficult to find because her blood type was very rare. In the meantime, she was walking nearly a mile everyday (with the help of a vent and a walker) and visiting Gwyneth for just a few minutes each day.
On April 2, my 27th birthday, we got the call that changed our lives forever. Tricia was going to receive a second chance at life. That night, and throughout the early-morning hours of the next day, Tricia underwent the nine hour surgery to replace her old, sick lungs with a new, healthy pair.
Gwyneth Rose spent over eighteen weeks in the NICU. On May 15 (2008), we finally brought her home (to our hotel in Durham). Although she remains on a few medications to help her premature body grow, and her development is progressing slowly, she continues to do incredibly well with no major setbacks. Gwyneth has amazed everyone, including her nurses and doctors. At 2.5 years old, Gwyneth finally began walking on her own, and, with the help of glasses and hearing aids, she is discovering how to communicate with others with sign language and a slowly growing vocal vocabulary.
Gwyneth uses sign language and spoken word to communicate. Although she is very small for her age as a former micro-preemie, she is now growing at a very steady pace and is well over 25 lbs and 36 inches tall. She is the best hugger you'll ever meet, loves attending preschool a few days a week, and cannot sit still for longer than a few minutes at a time. Gwyneth is the joy of our hearts, and we are having so much fun introducing her to the all of the things that God has given us in this beautiful world!
Although she experiences constant minor health issues related to her immunosuppressant meds and her CF (which is no longer in her lungs but still present in other parts of her body), Tricia is feeling healthier than she has in years as she continues to live with a strong heart and a smile on her face. She is taking to her long awaited roll as a mother with as much joy, grace and determination as she approaches everything in her life.
I literally lived at the hospital with Tricia from December of '07 to April of '08, spending most of my time in Tricia's room and making several visits with Gwyneth every day, sleeping most nights at Tricia's feet, and only returning to our hotel for a little sleep and to spend some time with our dog, Meka. Tricia's mother, Agnes was there with us for most of that time as well, and much of our family (from NC and NJ) spent lots of time with Tricia and Gwyneth whenever they were able.
Tricia and I finally feel like we have returned to a more normal sense of life. We are incredibly excited to have Gwyneth home, and are enjoying our lives as full-time parents. We finally returned home to the OBX in early June of 2008 and purchased our first home in the fall of 2008. We are spending a lot of time with our families, traveling to visit friends, and are looking forward to another awesome summer on the beach! We have also become foster parents and currently have our second foster child living with us.
2012 has been a difficult year so far. Early in the year Tricia was diagnosed with RSV, and spent a few months in and out of the hospital. In March of 2012, she was diagnosed with grade 2 acute and chronic rejection, which is often caused by RSV. With treatment, the rejection was reversed, but in June she was diagnosed with a form of chronic rejection called BOS. BOS is a very difficult form a rejection to treat, and is often irreversible. In June, Tricia received a very powerful chemo drug called CAMPATH which basically knocked her immune system down to nothing to try and reverse the rejection.
In August, Tricia's medical team determined that the CAMPATH had halted, or at least slowed down, the progression of Tricia's rejection, but severe and irreversible damage had been done. In 6 months Tricia's PFT's had dropped from the 50's into the 20's, and she had lost about 50 pounds. She spent the summer months incredibly fatigued, going back and forth between home and Duke nearly once a week.
By the end of the summer of 2012, Tricia's medical team began talking seriously about another double lung transplant, and in September, she again went through all of the tests to conclude that she is a candidate.
By the first of October, Tricia's breathing had become more difficult, and she was unable to be active for more than a few minutes at a time. She developed a sinus infection which moved into her lungs, and he has spent most of October as an inpatient at Duke. She was discharged after a week in the hospital and immediately began physical therapy at Duke to be listed.
On November 8, Tricia was listed and activated for her second double lung transplant at Duke. Unfortunately, due to several setbacks, she was deactivated from the list after a few weeks. For the next five months, she worked incredibly hard to overcome these setbacks and maintain her weight and strength, and on April 23, she was finally re-listed. Just six days later, Tricia was transported via ambulance to Duke because of labored breathing, headaches and nausea. She remains near the top of the list and we are praying for new lungs.
We are forever grateful to Tricia's 2008 donor and his/her family for making the decision to give Tricia a chance to be a mother and wife (not to mention and daughter, sister, granddaughter, niece and aunt) for several more years.
We are also humbled to have this opportunity to allow God to use our story to show Himself and bring our passion for awareness of and support for Cystic Fibrosis, Organ Donation, Premature Birth and Lymphoma to the minds and hearts of even more compassionate people.
Thank you for reading our story, and feel free to check back in as we update the blog often. Also, take advantage of the links on the right-hand sidebar to find out even more about our story.
Nate, Tricia and Gwyneth Rose