Pacemaker "Recall"

The third week of May I received a message from Dr. Buck at UNC. He said that he had been contacted by Medtronic about issues with Grace’s pacemaker, and he would like to speak with me about our options. As it turns out, Grace’s current pacemaker, implanted in July 2002, is affected by Medtronic’s current advisory (http://www.medtees.com/blog/MedtronicKappaSigmaAdvisory.pdf). Essentially it is a“recall.” Even though the failure rate has only been .5% and for the life of her pacemaker it is 3.9%, we decided it is best to replace it. She is not pacemaker dependent; however, her underlying heart rate is quite low. Also, we have worked hard not to make her pacemaker an issue, I do not want us to become hypervigilant now.

Grace was noticeably shaken from the news of her surgery. Her Dad is in Afghanistan, which makes it tougher. She was initially quite frightened, but I have showed her diagrams and talked about the procedure. No leads need to be replaced, so it should be simple. The only unusual item will be the removal of pacemaker number one, which is still in her abdomen area. When she received pacemaker number two, pacemaker number one was left in since she was only a toddler. Grace seems emotionally better. I know we are in good hands at UNC. Dr. Mark Mill will be performing the surgery (http://findadoc.unchealthcare.org/directory/mill).

As a good side note: we switched pediatricians again. When we went in to get a referral, the new pediatrician was amazed at where Grace was on the growth chart. She is now in the 94th percentile for height (4'10") and 69th percentile for weight! So much for all the people telling me how small she was as an infant!

I will keep you updated on our surgery as we get closer...

Another Home, Cardiologist, and School...

The summer of 2007, we departed the rainy Pacific Northwest for sunny North Carolina. Grace was physically growing quickly becoming one of the tallest in her class, even though she is always one of the youngest (an August 17 birthday). She discovered a love for tennis, which she has been playing now for two years. We have a new cardiologist here as well, Dr. Scott Buck (http://findadoc.unchealthcare.org/directory/buck) at North Carolina Children’s Hospital, affiliated with UNC Chapel Hill. Dr. Buck has been following Grace for the past two years.

Within the last year, Grace has expressed some concerns about having her pacemaker and being different. I attribute it to her maturing and entering an age where it is most acceptable to be like others. I try hard to keep the lines of communication open, listen to her feelings, validate her feelings, and assure her that sometimes different is good. I tell her that her scars are the outward signs of strength and to be proud of them.

Breastfeeding Issues

I want to mention my experience with attempting to nurse both Josh and Grace. My intention with both pregnancies was to nurse. In addition to being a Labor and Delivery nurse, April, my mother-in-law, is also a certified lactation consultant. With Grace, I thought it was particularly important that she receive breastmilk. April set me up with all the tools I needed, to include the best pump available. After 2 ½ weeks of trying to pump, I gave up. My milk never came in, despite Herculean efforts by both myself and April. I desperately tried every trick available, but nothing worked. At any particular time, I might get an ounce. One day, I was at it again—crying, feeling inadequate and like I had let down Grace. My Mom was with me at this point and told me that it was more important that I hold Grace lovingly and relaxingly. I gave up and decided to move forward; however, I carried the guilt that I had not done the best for Grace. April found out years later that steroid use in pregnancy can potentially cause the problem I experienced.

With my pregnancy with Josh, I was more determined than ever to breastfeed. I got all the latest cool stuff, and I was ready to go. April was there to help again. Within a few days, Josh was screaming and hungry and getting very upset due to lack of food. I had to supplement with formula, but again, I kept trying—more tricks, pumping, and effort. My volume never increased, and within Josh’s first week I had stopped trying. This time I knew that it was not me. April could not explain it, except that perhaps it was related to Sjogren’s Syndrome. I refuse to own the guilt now. I know with both children I did all that I could. I would be interested in learning of other women with Sjogren’s breastfeeding experiences.

Finally Pregnant...Will it Happen Again?

The idea of having another child was the last thing on my mind for first few years after Grace's birth. Once I got my health back in check, I consulted both an Obstetrician and my Rheumatologist on the chances of having another child with heart block. They both gave me the green light to have another child. When Grace turned two, Bill and I started trying to have another child. While we were pregnant within a couple of months of trying with Grace, this was not the case this time Six months went by with no pregnancy. I was 35 years-old, so I consulted a specialist. We completed all of the standard tests, and were told there was no physical reason for our infertility; my diagnosis was “secondary unexplained infertility.” Bill and I discussed our options, and we decided not to pursue any fertility treatments.

While in Rhode Island, I joined the local YMCA and exercised daily. My body was well-conditioned, and I was able to cut back on my frequency of Salagen (http://fdb.rxlist.com/drugs/mono-237-PILOCARPINE+-+ORAL), which I had been taking for dry mouth symptoms associated with Sjogren’s Syndrome. Just weeks prior to my 38th birthday, I was more than surprised to find out I was pregnant; I had thought I was entering perimenopause. A side note here on my infertility: I still do not know what caused 2 ½ years of infertility. I suspect that part of the cause was age-related; however, a few years later I read that Salagen had some negative fertility outcomes in rats. According to Novartis, the manufacturer of Salagen, “the effects of pilocarpine on male and female fertility are not known.”

While I was elated, I was also terrified at the idea of having another child with heart block. I immediately began seeking the help of specialists. After weighing my options, I opted not to take the steroids as a preventative measure. I was concerned about the effects of the steroids on both the baby and myself, while administering prednisone preventatively had not been proven to be effective. I then began the long wait to the window where heart block develops (generally 18-24 weeks). Along the way, I found out I was expecting a son. While I was excited, the gender did not matter to me--I just wished for his good health.

As the pregnancy progressed, I felt pretty good. At 17 weeks gestation, I began weekly stress tests that continued until the end of my pregnancy. I remained anxious through the weeks, but I no heart block developed. I delivered Josh on November 27, 2004; he was a healthy baby boy. I was concerned that heart block might develop after delivery. I watched Josh closely, but thankfully all continued to be well.

Finding Normalcy

Grace continued to grow and thrive. She became a preschooler, and our family made the move to Newport, Rhode Island in the summer of 2003. We were lucky enough to be seen by Dr. Frank Cecchin again, who had moved to Boston Children’s Hospital. Overall everything looked good. Grace participated in weekly swim lessons and ballet. As parents, Bill and I began to relax with the understanding that Grace was living a good and normal life.

The challenge I found was mentioning “pacemaker” on any school, child care, or sports form. Organizations get nervous, and understandably are concerned about care and/or liability. Over time, I found it is best to always get and have on hand a letter from the cardiologist giving Grace a green light to participate in activities. As she has grown, the concerns have lessened.

In the summer of 2004 we journeyed back across the country to Fort Lewis, WA. We were grateful to have Dr. Puntel again at Madigan Army Medical Center as Grace's Cardiologist. He followed us for our next three years in Washington. We were also seen again for pacemaker checks at Seattle Children’s Hospital. Grace participated in cheerleading and gymnastics. She did well in school, both socially and academically. Her father deployed to Iraq and returned safely.

The Unexpected--Grace Gets a New Pacemaker

In July of 2002, Bill and I took Grace to Children’s Healthcare of Atlanta for a routine pacemaker check. While there, Grace experienced both a normal heart rate and a slow heart rate. Through some fantastic investigative work, Dr. Margaret Strieper (http://www.choa.org/strieper) determined that one of Grace’s leads had become dislodged. The pacemaker was working only when Grace was in certain positions. Grace needed a new pacemaker. This surgery was much easier. She received a new Medtronic pacemaker beneath her collarbone, and the leads were placed transvenously into her heart. Grace’s spirits were great throughout her time there. Recovery was easy, and we were home within a few days.

The most positive outcome of this incident was the knowledge that Grace can live without her pacemaker. While we had been told that Grace was not pacemaker dependent, we could not be certain; however, Grace spent a night in the hospital and a good portion of the day before her surgery being monitored. The night was a bit stressful, as our heart rate slows down while we sleep. Grace’s heart rate dipped into the high 40’s, but she made it. Typically her underlying rate remained what we had been told—in the low 50’s.

The First Two Years & My Diagnosis

The first year was full of typical life with a newborn--lack of sleep and round-the-clock feedings. Both sleep and feedings slowly transitioned to longer durations. In addition to the regular baby check-ups, we had pacemaker and cardiology appointments.

Due to the steroids circulating through my body and the placenta, Grace had to be weaned off the steroids after birth. She was also initially on Lasix (http://en.wikipedia.org/wiki/Furosemide) and Digoxin (http://en.wikipedia.org/wiki/Digoxin) for her heart, but within a short period, she was taken off of those too. Over time and positive feedback on her appointments, my outlook on her future became more positive. Grace was still quite thin. She did not have the stereotypical healthy baby look about her—no chubby cheeks or legs. Strangers often commented on how little she was. I did not admit it, but I was sensitive about it. I knew she did not look healthy.

The Army gave Bill an opportunity to move to Fort Benning, Georgia (we were living in Washington state), and I asked him to take the position. With family in North Carolina and Georgia, I knew I would not feel so alone. We made the move when Grace was ten-months-old. We had a huge first birthday party. Grace was walking, and life was much better.

Over the course of time, my exhaustion did not go away. I attributed it to a host of things: having an infant, the move, and a new job. When Grace was about eighteen-months-old, I started experiencing mild dizziness as well. I finally went to a physician. Two-months later I discovered I had developed Primary Sjogren’s Syndrome. This diagnosis was not a complete surprise, and now I knew the source of my symptoms. For more on Sjogren’s Syndrome, please read http://www.sjogrens.org/home/about-sjogrens-syndrome . With medical treatment and lifestyle management, I began to feel better over the next year. The road to some recovery contained a good deal of trial and error. I came to the realization I could not do some of the things I used to do; my stamina was not the same. Life had been altered, but over time we all adjusted.

Grace continued to grow and progress as a normal toddler. She brought much adventure and laughter into our lives.