Learning of Foster's Complete Heart Block

On November 12, 2013, I was 23 weeks pregnant. Other than our family transitioning back home after being displaced for four months due to a sewage flood (can't wait to tell you that one later), it had been a completely normal pregnancy. The news of Foster came along in June, right in the middle of what we refer to as "The Dookey Storm." Like I said, stay tuned.

On November 12, I went for a normal monthly OB appointment and the midwife could not find the baby's heartbeat. I knew her heart was beating since I could feel her move. Terrified by the look I saw on the midwife's face, I was whisked immediately into the ultrasound room. They located her heartbeat and it really sounded bad, very slow and skipping around. I panicked. The ultrasound tech that I have gotten to know through my other pregnancies drove me across the street to the hospital where I was taken immediately to labor and delivery and hooked up to the heart monitor. I heard her heart again and knew it was not good. I prayed, "Lord, let this be okay. Let this be okay." The midwife on call came in and listened. Sometime later I will tell you the story of the midwife on call that day - she is the first example of how the Lord has provided for us beyond measure during this journey. Again, stay tuned. It's a really good story.

Within a half hour I was on an ambulance to Duke University Medical Center, which is an hour away. Drew was following behind. In the ambulance I had no idea what was going on with her heart. I knew it wasn't good. But there was a certain peace about it. When we arrived at Duke, I was given a room. I guess we're gonna be here a while? The the anesthesiologist came in to talk about anesthesia options with delivery, whether I had any adverse issues with anesthesia, etc. What is she talking about? Why is she here? This baby is 23 weeks old. She can't be delivered. Then I was taken to pediatric cardiology where a fetal echocardiogram was done to determine what was wrong with her heart. The test took about thirty minutes. Drew and I watched "Let's Make Deal". I was so afraid of what they were about to tell us.

 Dr. Miller was the first cardiologist we saw, the one that delivered the news. The way he looked at us scared me. It was sympathetic. You never want a doctor to look at you sympathetically. The diagnosis was congenital third-degree (complete) heart block. The heart has four chambers. The upper two chambers are the atria. The two lower chambers are the ventricles. The ventricles are the primary pumping chambers that send the blood through the body. When complete CHB occurs, the electrical signal does not make it from the top chambers to the bottom. As a result, the bottom of of the heart establishes its own, very slow, heart rate. Foster's ventricular rate was 50 to 55 beats per minute. A normal fetal heart rate is 120 to 160 beats per minute. The good news was that her heart was structurally well put together.

Dr. Miller told us that there was no way to predict what would happen. "Some babies can tolerate this. Some cannot." There was no way to know what group we would be in. He explained that her heart rate was "on the low end of the threshold" and he would be "much more optimistic" if it were in the 60's. I will never forget those words, "much more optimistic." The lawyer in me concluded that, by the use of that language, he had indicated that he was not optimistic. He told us that our only option was to wait and see whether her heart rate could sustain her. But there was light at the end of the tunnel. Help is on the way! He explained that she would get a pacemaker at birth. But the heart must sustain her long enough to grow large enough to be born and have the surgery. My initial reaction was panic. A newborn. My baby. With a pacemaker? Heart surgery. How long can you live with a pacemaker? What if it stops working? What if it breaks? What if its defective? Can she play sports? Can she go to school? Well, how long? How big does she have to be for the pacemaker? He explained that 32 weeks was sort of the threshold. They could do something at 32 weeks, although it would be a very delicate situation. He explained that the prognosis was good at 36 weeks. If she were born at term, she could get a permanent pacemaker. Our goal was 32 weeks. Actually, our goal was 24 weeks. One week at a time. Each week a gift. (As I write this, we are 32 1/2 weeks.)

So, we went  back to our room. And prayed. And prayed some more. Later that evening we met another cardiologist, who is known in our family as McDreamy because, well, he sort of is. And a really, really good doctor. He came into our room to explain what all this means.  He had the same opinion as Dr. Miller that there was nothing they could predict and we would have to wait and see if the heart would hold out. McDreamy explained that she likely would live a normal life with a pacemaker and that children with this condition typically do very well with pacemakers. She could do everything except play contact sports. Okay. Things are looking better. The battle would be getting her here at term and big enough for the pacemaker.

CHB is uncommon and occurs in 1 in 10,0000 to 20,000 babies. McDreamy asked me if I had Lupus. No. Why does everyone keep asking me that? He explained this condition is almost always caused by Lupus or Sjogren's Syndrome in the mother.  People with these autoimmune disorders have what they call anti-Ro and anti-La antibodies, which act out to cause the symptoms of the disease. On occasion those antibodies cross the placenta and attack the electrical system of the baby's heart. They did the tests and determined that I had the antibodies. My understanding is that its some type of asymptomatic autoimmune disorder, most likely Lupus or Sjogren's, that may or may not become symptomatic. This will be addressed later by a rheumatologist. I'm not going to lie in wait for the symptoms of a disease that may never happen. So there. Enough of that.

After McDreamy explained the stuff about the pacemaker, I looked at Drew and the only thing I could think of to say was, "She's going to be so badass with her pacemaker." So far, she has proven herself to be the very definition of that term. McDreamy left and we sat there. And prayed some more. We prayed for her heart. Mostly we prayed for peace. It is an understatement to say that it has been given.

So, we stayed at Duke for two nights so they could get a full picture of what was going on. The plan was to come to Duke every week to check the status of the heart. The concern was that it would start to show signs of distress. If that happens and the heart starts to fail, the heart and the body start to accumulate fluid and that's how they know things aren't going well. We have been updating friends and family through emails after every trip to Duke, but started this blog as a more convenient format as her  birthday approaches. Above I have included those emails as sort of a record. I hope someone who is going through this might find some encouragement. Because the condition is uncommon, its hard to find people with similar stories.

Much love,
Anna and Drew

Maggie’s Newborn Pictures

These were taken when Maggie was 9 days old. I guess its finally time to post them. I can’t believe my little buggie is four months old already. She started day care January 3rd and I was worried since she is Maggie Rotten and all. I was concerned that she would scream all day because she wasn’t being constantly held/looked at. (Sometimes she demands that I look at her while she goes to sleep. At times I find this behavior off putting, while other times its hilarious). What I’m told is that she doesn’t necessarily scream more than the other babies, just louder. That’s my girl.  While Joseph was known for being laid back and independent (my hippie baby, remember?), Maggie is my spirited cuddle bug. At this age Joseph would need “Joseph time” where all he wanted was to lay on the floor by himself and maybe have some toys to play with. Maggie, on the other hand, wants to sit in someone’s lap all of the time.  These pictures were taken by a local photographer named Anna Fonke, who I was completely impressed with.

Christmas 2010 In Pictures

It was the best Christmas ever!  

Brother and Sister

These are some pictures I took of the babes before church this morning. Joseph adores his baby sister. He always wants to know right where she is. She's always in the back of his mind. He'll be intently playing with his toys and he'll stop and look around just to get a visual on her sometimes. Maggie started daycare this week and everything went really smooth although I miss her terribly. I get sort of sad after lunch and have to busy myself to keep my mind off the fact that all I want to do is go home and hold her. Joseph's teachers let him go down to the baby room from time to time to check on Maggie and I'm sure she appreciates it too. The other day they had a fire drill and Joseph's class walked by Maggie's room. I'm told that all of the babies were crying because of the alarm. Joseph heard Maggie crying and freaked out and started crying because she was crying and he was allowed to go see her until she stopped. There are times when I have questioned our sanity in having them so close together. But, without a doubt it it was the best decision.

A VERY Merry Christmas....and then SNOW!

It was a really wonderful Christmas. I'll put up some of our Christmas pictures later this week. We just came in from playing in the snow again this morning. Yesterday we woke up to 6+ inches and it continued to fall throughout the day. In the afternoon we invited our neighbors over to make pine cone bird feeders. The boys showed more interest in pulling all the toys out and running around in circles, and it ended up being a mom craft, and a big mess. But the bird feeders turned out really good. However, I checked this morning and it appears that no bird has paid a visit.

Christmas Card Photos

Last weekend the one and only goal was to get a good family photo for our Christmas card. Anyone with a 2 year old and a 3 month old knows that can be a challenge. You need to set aside plenty of time! Joseph has a thing about looking at the camera, which posed an additional challenge. But, I think overall we got some good shots, thanks in part to my new Canon Rebel DSLR camera that I got up at 4 am to go to Wal-Mart to purchase on Black Friday. Ready for a true confession? Going to Wal-Mart at 5 am on Black Friday was sort of fun aside from the people that started yelling and screaming at each other in the middle of the aisle over a PS3.

It's beginning to look a lot like Christmas around here...

I decided to take it easy on the decorating this year. But then I got all ashamed when the neighbors starting going all balistic with their outside decor. So I made an effort to fit in, being the first holiday season in the new 'hood and all. Apparently you don't belong in this neighborhood unless you have all of your exterior windows adorned with a wreath donning a red bow. I think this chaps Drew's hide, as he feels compelled to act out against any establishment that says you must adhere to something just because everyone else is. He proclaimed that next year each window will not have a wreath. Instead, each window will be adorned with eighteen miniature wreaths - one for every square of the window grid. Anyway, last week I was blessed with the presence of grandparents for the day and did our part. All it took was some red ribbon and a magnolia tree that was nice enough to donate some of its leaves to the cause. I was so pleased with the outcome that the lamppost and porch rails got some holiday cheer. Now I just have to find in excess of 400 miniature wreaths for next year.

Oh, I almost forgot about the lights in the bushes! I was a real horse's rear-end about the Christmas tree this year. I think I had like 4 hours of sleep the night before the morning we decorated the tree and had a total bah humbug attitude while we were putting on the lights. I think I might of pitched a little hissy fit when they didn't go on just right. I felt bad about it and I DECKED OUT the bushes and trees outside with white lights to suprise Drew and Joseph when they came home from the football game that night. While doing so, I won a mom-of-the-year trophy. I was so determined to redeem myself and spread some holiday cheer to my extremely deserving husband. I went and bought all of the lights. By that time it was dark and cold outside. One problem - what do do with Maggie? I decided she needed to learn some girl power and watch me wrestle the extension cords, climb up on the ladder, etc. Plus, there was no one to watch her so last minute. So...I bundled her up and put numerous blankets all around her and put her outside with me in her bouncy seat. I was convinced she would stay nice and cozy and she soon fell asleep. Sweet! About 20 minutes later all the bushes were beautifully covered in white lights. I went over to check on her and poor sweet baby was shivering! It almost made me cry! My best little buddy sticking with me through thick and thin (and last minute, chaotic, redemtion Christmas light decorating).