Faith's Mom's Blog

The book, In Sickness and in Health: Lessons   Learned on the Journey from Cystic Fibrosis to Total Health  by Mandy B. Anderson, is the author's personal story of what life is like living with what doctors call an incurable disease. In reading her story, I felt like I could completely relate to her. Although my diagnosis of a congenital heart defect is much different than hers, all the ways in which being a sick kid can take an emotional toll, is very much alike. For instance, most kids don't ever have to think about dying an early death or having doctors put an expiration date on your life. This cannot only be emotionally devastating but spiritually devastating as well as "words of death" are constantly being spoken over you. As a kid, you can feel the fear and anxiety in those around you so you take it upon yourself to be the "brave" one. You learn how to mask and hide your true feelings and inadvertently start pretending to be someone you are not.

Growing up, I never honestly thought much about what it would be like to be a mom one day. In my preteen years, because of the heart condition I was born with, my cardiologists told me my heart would never be able to handle a pregnancy. I determined that when I grew up, instead of having kids, I would have lots of pets. I loved cats, dogs and horses and envisioned a future with at least one or two of each.      Growing up, being a mom is something I never thought I would be I was fine with the fact I would never be able to have a baby. I really was. Until the day in my early 20s, I visited a friend in the hospital who just had a baby girl. I walked in to see a tiny little bundle wrapped in a pink blanket snuggling in her mother’s arms with daddy beaming with pride alongside the bed. I was not prepared for the emotion that would stir my heart. I put on a smiling face for my friend but left the room in tears. I would never have that opportunity, I thought. I would never know what

The state of North Dakota has been making a lot of headlines lately. In 2012 we became the second top oil-producing state in the nation and this year we were dubbed "the freest state in the U.S." At one time, North Dakota was known for it desolation, its frigid winters and low population. Most people probably had a hard time finding North Dakota on a map. I don't think that's quite the case anymore. People are flocking to North Dakota for jobs. Our state has one of the soundest economies in the country. But even before all of our new-found popularity, I was a proud North Dakotan when it wasn't cool to be one. Faith enjoying the sights of the Missouri River in Bismarck, North Dakota And now, in light of recent events in our legislature, I am even more proud to be from this great state! The senate and house passed some of the most pro-life bills ever and Governor Jack Dalrymple signed them into law! You might wonder why I'm talking about this on my b

Earlier this week I had my annual appointment with my pacemaker doctor who comes to Bismarck from the Mayo Clinic in Rochester, Minnesota. It is a huge blessing that I don't have to travel to Rochester, which is about 600 miles from Bismarck. I really truly thought I would be in and out - a quick ekg, a quick pacemaker check, a quick chat with the doctor and I would be done. I scheduled the appointment at 8:00 a.m. thinking I would make it to work just in time for my 9:00 shift. Boy was I wrong! I got up to the pediatric floor at about 7:50 a.m. Yes, the pediatric floor because the doctors who come from Mayo specialize in pediatric cardiology so they are mainly there to see the kids. But since more and more kids have been surviving heart defects and growing into adults, some of these pediatric cardiologists specialize in adults with congenital heart conditions.  Anyway, so there I was on the same floor with all the kids - the same floor I take Faith to when we see her pediatr

November 30 is Newborn Heart Defect Screening Awareness Day . I think it is very important to spread this awareness, especially since congenital heart defects (CHD) are the number one birth defect in babies. CHD affects 8 out of every 1,000 newborns and is responsible for more deaths in the first year of life than any other birth defect. A simple screening, which is done via pulse oximetry done within the first 24 hours of the baby's life, could prevent such deaths from happening. One such death was a five-day old baby named Cora .  I was born with a congenital heart defect and nobody knew until I was about five or six months old. My mom began noticing that the simplest act of eating from my bottle completely wore me out. And when my lips and fingernails began to have a bluish tinge to them, she knew something was very wrong. Unfortunately at that time we lived on an Indian reservation in Wolf Point, Montana so there weren't a lot of specialists in the area. The closest one

It's hard to believe that it was nine years ago today I was taken by air-ambulance from the hospital in Williston to the Mayo Clinic in Rochester Minnesota. Faith was very unexpectedly trying to make her way into the world 14 weeks early. The doctors and staff in Williston knew they did not have the expertise in dealing with a mom with a complex heart condition having a baby born so prematurely. I had been planning on having Faith in Rochester but not this soon! After all, my due date wasn't until January 6th. After getting to Rochester, I was in the hospital for five days hooked up to a baby monitor. Faith seemed to be doing well and I was no longer going into preterm labor. Although I wanted to just go back home, the doctors thought it would be wise for me to stick around Rochester, just in case. The TravelLodge became my temporary home. Faith in the NICU in Rochester, Minnesota where she was born Rob had been going back and forth between Rochester and Watford City. An

Recently on Facebook, I saw that someone had written to one of her  friends, "I heart you." I thought it was cute and quite appropriate to say to my Mayo doctors, especially since they are cardiologists! The first time I ever met a doctor from the Mayo clinic was shortly after my cardiologist in Fargo told me I might need to start taking a blood thinner called coumadin because my right atrium was grossly enlarged and then neglected to call me back to let me know for sure.  I ended up having to call them and he told me to just stick with an aspirin a day. Well, there is a big difference between using a baby aspirin a day and coumadin! Of all people, my cardiologist's nurse told me about the Mayo doctors who come to Bismarck, North Dakota. After some pushing from my mom (who was really worried about me because I was not well at all but was still trying to work full time) I finally called and set up an appointment. I met Dr. Hagler and Dr. Ackerman in April of 1999 and t

Since my last post regarding my pacemaker battery change, I unfortunately have not been doing as well as I would have hoped. My hopes for higher energy levels have been dashed as I have been even more tired than usual. On Monday night, I began feeling weird palpitations and sometimes my heart would beat so hard that I could see my chest pounding. I thought maybe my body just needed to adjust to the new battery. The next day at work though, I noticed the same symptoms. On my afternoon break I tried to call the pacemaker clinic but of course I couldn't get through. When I got home in the evening, I tried to call again. This time, the surgeon who performed the battery change was on call so I was able to speak with him. At first he wanted me to come to the ER and get an electrocardiogram done but I told him it wasn't doing it all the time so then he told me to come in and get hooked up to a holter monitor. On Wednesday during my lunch break I got hooked up. I had to wear it f

Shortly after arriving home from my cardiology appointment yesterday, Faith asked, "So was everything A-OK at the doctor's mommy?" Although I had been dreading the first part of my appointment - the stress test - everything really did turn out "A-OK." Doing a stress test is not fun for many reasons. First you have to take off your shirt and bra and put on one of those flimsy hospital gowns. Then they have to hook you up to like a dozen electrodes. You have to try to keep everything intact as you push your heart to it's maximum limit. And in my case, while all of this was going on, a good-looking young guy who was an intern at Mayo was in the room. Thank goodness I had two wonderful nurses who helped to keep my gown closed and wires untangled while I was on the treadmill. The first three minutes of the test weren't so bad but then they raised the incline and the treadmill sped up. Towards the end of the three minutes I started noticing my legs getti

It's been a while since I've done "Tuesday Tidbits" so today with our wonderful winter weather, I thought it would be the perfect time to put together a brief update. (I'm not including a photo of our weather because it is just too dang depressing.) I mentioned in a previous post that Faith had gone to the dentist. Well in his words "she has a lot going on in there."  Her two top teeth are trying to come in along with her upper molars. She also has four other teeth that are slightly loose. No wonder she's been a bit cranky lately. According to Dr. Bryce, she will experience fevers along with a stuffed up nose and extra mucous and drooling. He said to give her ibuprofen to help keep the swelling down and ease the discomfort. I find this especially interesting because when I ask the same questions about the effects of Faith's teeth to her pediatrician, he always says her teeth have nothing to do with these symptoms. I have yet to hear of a pe

It seems Faith was just getting over her last three-week cold when she started coming down with another one. "Oh no, not again," was all I could think. Yesterday I sent her to school even though I knew she was tired because she hadn't slept well all weekend. One of her aides said it had been hard for her to stay on task and stay focused. Last night she was up at 3 a.m. so I knew she wasn't going to do well in school and kept her home. She has been sneezing and sounds a little stuffy but I PRAY she has a good sleep tonight and she can kick this cold much faster than her last one. Last week I took her in to see her pediatrician just to touch base with him since he was available. And of course she was perfectly fine then! He said she may have had RSV which can last three-four weeks. Hopefully that is not the case again this time. I told him I was concerned about her throat because she seems to get a sore throat a lot and was wondering if something was going on with her

If you have been to my blog recently then you are probably well aware that this week is Congenital Heart Defect Awareness Week . And if you read my blog you probably know that I myself have a congenital heart defect. One reason I feel the need to share this information is because there needs to be more awareness about CHD and its impact on the child and on the family. It amazes me that even though 1 in 100 children have CHD, making it the most common birth defect, the awareness isn't as high as some other childhood health issues. It is also amazing to me that when babies are born, most hospitals do not even screen for this defect. Sometimes the baby is sent home, unknowingly having a heart defect and by the time the parent realizes something is wrong, it is too late and the baby dies. This is tragic considering that the deaths of these babies could have been prevented by running a few simple tests. I consider myself to be very blessed in these regards because even though my hea

Congenital Heart Defect Awareness Week February 7-14, 2011 is Congenital Heart Defect (CHD) Awareness Week.

Burrr, it's cold out there! Twenty below with the wind chill - so glad I didn't have to walk Faith down the hill this morning and she was able to enjoy some warmth on the bus! Which, by the way is working out great for us. I guess when she's on there, she just giggles and laughs the whole time. The other day the bus driver told me he wished he had her for another 4 or 5 more blocks just to hear her giggle! Besides the bus being a big hit, we have some more exciting news. Faith is going to be one of the stars this year for the Great American Bike Race (GABR)! This means she and her friend, Tanner, will be helping to promote the big event which takes place on April 9, 2011. Faith will be on TV, the radio and will be featured in Medcenter One's magazine all to promote GABR. So once again I will be looking for riders for Faith's team. I may try to get two teams together so that's 20 riders. Let me know if you want to ride! We will also be doing lots of fundraisin

As I sat there, listening to the four of them talk, I asked myself, "How many professionals does it take to figure out what's going on with my pacemaker?" I was thankful for the comfy chair I was sitting in because it looked like this was going to take a while. All I could do was sit there and listen to them talk about me. It's not like I could go anywhere since I was all attached with leads and a big magnet on my chest. I didn't fully understand the terms they were throwing out - P-waves, QSRs, farfield waves, etc. I did however understand the part where they were trying to figure out if my heart was going into atrial fibrillation. This whole mystery had begun in early September when I went to the pacemaker clinic for a routine checkup. A few days later my cardiologist from Mayo called and asked how I was feeling. It appeared I was having some arrhythmia. He wanted me to wear a 24-hour holter monitor to try to figure out what was happening. Because of a few

Today I find myself struggling. I have been on the verge of tears all day. No, it's nothing to do with Faith. I'm going through a little 'blip' with my own health. Strange, even though I know I have a heart condition, I don't really think about it much. I take my daily meds and that's about the extent of it. I'm more concerned about Faith and how she's doing in school, at therapy, with her digestion, with her stretches, with her learning, the list goes on and on. There is little room to think about me. As is the norm, I think, not just for moms of special needs children but all moms. It all started last week when I went in for a routine pacemaker check to see how much life was left on my battery. It was good news - still about 16 months left to go, which means no trip to Rochester anytime soon for a battery replacement. Then early this week, my cardiologist from Mayo calls and asks how I've been feeling lately. Apparently there was an arrhythmia ca

Growing up, I really never thought about having children. The fact was, my cardiologists always told me I would never be able to have a baby. It never really bothered me. Instead of having children, I figured I would just have cats and dogs. Seriously, I loved animals and the pets I had while growing up gave me great comfort and lots of joy. Then one day, as a twenty-four year old, I went to visit a co-worker who had just had a baby. When I left after seeing my friend and her tiny little girl, I felt sad that I would never be able to have that experience. Fast forward two years. Due to the heart surgery I had when I was 25, I was doing very well, healthwise. I was also seeing different doctors - those from the Mayo Clinic in Rochester instead of those in Minneapolis. These cardiologists told me they had success with women who have had the fontan surgery having babies. So, after getting married in 2002, my husband and I decided to go for it. When I did find out I was pregnant. I w

Today is Memorial Day. A day of remembrance. A day to think about all of those who died fighting for our freedoms. And while I do remember our fallen heroes, I also remember a Memorial Day weekend eleven years ago that was especially tough and painful for me. In writing about my personal experience, I do not wish to take anything away from our brave soldiers, for I know I could never make the sacrifices they have made. Eleven years ago during the last week of May, I had my fourth open heart surgery. I was twenty-five years old. I had been born with a condition called double outlet right ventricle (DORV) in which both the main arteries of my heart were attached to my right ventricle. My left ventricle was unable to function. Prior to my surgery in 1999, the last surgery I had was in 1984. At 25, I was really quite stunned to be going through another heart surgery. I knew I was sick and getting sicker but I was disillusioned to think that some different meds would do the trick and fi

Can a Woman with a Congenital Heart Defect Still Have a Baby?

Adults Living with Congenital Heart Defects