I was scheduled to go to Duke yesterday at 3:00 for another biophysical profile. (That's what we do on Tuesdays). The BPP checks her movements, amniotic fluid level, blood flow through the umbilical cord and other stuff I'm not really sure about. It's an extra precaution because of her small size. Due to the "epic snowstorm" that was supposed to start yesterday afternoon, they let us come early. Everything still looked ok except her heart rate was lower, around 47. Dr. Boyd (fetal medicine) was a little concerned and felt like she needed to contact the cardiologists. They conferred and determined that it was ok since there was no evidence of hydrops or that the baby was in distress. As of now, her heart appears to be tolerating the even lower rate. Dr. Boyd, like the cardiologists, commented on the strength of her heart and said she was surprised about how this has gone. Little rogue bullies floating around in my body attacked the electrical component of her heart. But, before that, He wove her together with this perfect, super strong little heart that has carried her through. God is so big.
Her heart rate was similar last Friday at the cardiologist and they were not concerned since everything else was stable. So, what it means is that we are getting very close to showtime and they could make the determination any time that the risk of leaving her in there outweighs the risk of getting her out small and pacing her heart. Dr. Boyd said that if anything looks like its changing (fluid collection, decreased movement, further drop in heart rate, etc.), they would probably make the decision to deliver. We go back Friday. Tomorrow I am packing my suitcase and having everything ready. I would guess that she will be born within the next two weeks. We really want two more weeks. The scary part now is that they just don't know how she will react when she comes out. Please pray with us for her heart to continue to tolerate the low rate for a little longer, wisdom for the doctors, peace in our hearts, her heart to tolerate being born, and for her to respond well to the medical intervention.
Much love,
Drew & Anna
Wednesday, January 29, 2014
Friday, January 24, 2014
Week 33 Update
Dr. Camitta told us everything was still stable. Her heart rate was in the upper 40's, a little lower than it has been. But the heart function still looked good. He said not to worry about the lower rate. Like the other doctors, he commented on the strength of her heart and its ability to compensate by squeezing out more blood per beat than a "normal" heart.
I asked about the likelihood of making it to term. He thought the chances were good. The last cardiologist we saw told us they would like her to be six pounds for the permanent pacemaker. We were a bit discouraged thinking that she had to be that big, especially when we heard the news last week that she was at the bottom of the growth curve. Today he said four and a half pounds should be large enough. Whether they can place the permanent pacemaker depends on whether there is enough space in the abdomen to hold the device. They will just have to look at her when she's born to make the determination. Two wires will go into the heart and those wires are connected to the actual device, which sits in the abdomen below the heart. While she is a baby, the pacemaker will be visible underneath her skin as a box looking thing that bulges from her abdomen. (It will be all the rage soon. Celebrities will be getting fake pacemaker implants.)
I asked Dr. Camitta how many CHB babies they were currently following. She's the only one. He told us that the team meets once a week and discusses our case. He said that every week they are surprised at how this is going. He told me that they were "not optimistic" at the beginning that her heart could sustain her. Although I've since realized that's how the doctors saw it, to hear him say it out loud was an emotional experience. I told him we prayed a whole lot. He said it was working. Today I've been thinking a lot about that first month and how I was not a total basket case. (Not to say I didn't cry numerous times a day and throw things.) I know we were not burying our heads in the sand and ignoring reality. I know that we heard the doctors, knew what they were thinking, and understood the gravity of the problem. The only way the peace and hope can be explained is that it was given to us in many, many answered prayers.
As you can see, she decided to reveal her face for the first time today. We got several pictures. You can't tell so much from this one but she looks like Joseph.
Some of my diabetic restrictions were lifted today. I was told to "be reasonable" - a term that I need defined as I sit her and ponder what I am going to fatten her up on tonight. Drew won't let me eat my sardines on the couch so I'll pick something else.
Much love,
Drew & Anna
Sunday, January 19, 2014
Week 32 Update (January 17, 2014)
We returned to Duke on Friday and Foster's heart was still the same. Huge blessing. We are now at the 32 week mark. They did another growth scan to get an idea of her size. At the last one (27 weeks), she was two pounds, six ounces and in the 14th percentile. Today she was three and a half pounds, which puts her in the 3rd percentile. There is somewhat of a concern about her size. What has happened in the past when we see the fetal medicine folks is that they do the hydrops check to see if fluid is accumulating around the heart or anywhere in the body and then the doctor comes in to say everything looks the same. Today the ultrasound tech took us into a conference room to meet with the doctor, which was unnerving to say the least. These appointment days are simply exhausting. I come home in a zombie state because of the stress and adrenaline.
The doctor came in and told us that they need to start seeing me twice a week instead of just once. The purpose of the extra appointment is to watch her movements and activity. This is general procedure when the baby is below the tenth percentile in size. They feel like they need to watch things more closely. It doesn't look like anything else (genetic/chromosomal problem) is causing the small size. It's likely the heart issued possibly coupled with genetics. So, we are now adding Tuesdays to our weekly Duke regimen.
One of the reasons these appointments are so exhausting is because I don't really know if I'm going to be able to come back home. There is a (self-imposed) pressure to "maintain order" at home at all times in the event that happens. The doctor told me to take it easy. At the beginning, I thought 32 weeks would bring about a sigh of relief. But now there is a lot more wondering and worrying about how and when this is going to happen.
Please pray for her growth and her heart to continue to hold out like it has been. This week I am praying for renewed energy and the ability to relax and enjoy Joseph and Maggie in the coming weeks. Weariness is not our friend here and we are going to have to pray hard against it!
I am reminded:
Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.
-Matthew 11:29-30
We got a lot of growing to do and three weeks to get it done. Let's roll, FG!
Much love,
Drew & Anna
Friday, January 17, 2014
Week 31 Update (January 10, 2014)
Friends:
Today was a marathon day at Duke and we received good news again. Foster's heart function is still unchanged. It has been 9 weeks and her heart continues to show no sign of distress despite the very low heart rate. It appears possible she could make it to term. God is so good.
The cardiologist commented again on the strength of her little ticker. We received a lot of information about what could happen after she's born. Basically, there is a big difference between now (almost 32 weeks) and 36 weeks. She needs to be about six pounds for them to be able to place a permanent pacemaker. If she must be delivered early due to heart distress and is not big enough, they will have to place a temporary pacemaker and she would stay in the cardiac ICU until she gains enough weight for the permanent pacemaker. Best case scenario (other than miraculous healing), is that she is born large and strong enough for the permanent pacemaker. If she has to come early, we will have to wait in the cardiac ICU for however long it takes for her to get big enough to transition from the temporary to the permanent pacemaker. We're praying for a 36 week six pounder!
We also toured the cardiac ICU today. Dr. Campbell told us that she would be in there for a week at the very least if she's born big enough for immediate placement of a permanent pacemaker. Of course, it could be much longer if the permanent pacemaker is not an option at birth. We are experiencing new worries now as prepare for what will take place after delivery. The Lord has provided for us beyond measure so far and we know that his love and grace will continue.
Here's to four more weeks and a big ol' gal!
Much love,
Drew & Anna
Week 30 Update (January 2, 2014)
I ran into several folks today that wanted updates on Foster. How lucky we are to have you all to support us and pray for us through this. I didn't send an update after our visit yesterday because I came down with a stomach virus on the way home from Duke. What fun! Yesterday we had another fetal echocardiogram that showed no change. There was a small amount of fluid around the heart but Dr. Barker, the cardiologist ( a/k/a favorite doctor ever), said it was not out of the normal range. He is so extremely thorough in all of the scans and tests he does. He said the strength of the heart muscle is "excellent." Her beastly ticker is able to accomplish what a normal fetal heart would take almost three times the amount of beats to accomplish. There is no doubt that her heart has been fearfully and wonderfully woven, and with a distinct purpose, pacemaker and all. We are so close to that critical 32 week point and continue to pray that the heart doesn't become too tired as her size increases.
As I was just now cleaning out my bathroom cabinets, I decided I would try to stay up to midnight for the first time in years. I think the last time I saw the ball drop was the result of the good fortune of having to go to the bathroom in the middle of the night. We're a raucous bunch around here.
Happy 2014!
Much love,
Drew & Anna
Week 29 Update (December 26, 2013)
Duke visit this morning. Foster continues to pay no mind to her predicament as the heart is still not showing distress and she continues to bounce like a jack rabbit on speed. Heart a little slower this morning, but doctor not concerned since there was no fluid around it. My hair has altogether stopped growing. Interestingly, in the spirit of "If I'm going to have heart surgery, I'm going to look good doing it," Foster's has grown a full head of hair. This elicits comments from the ultrasound folks about how unusual that hair is at this age. My point being that this child, irrespective of her pacemaker, has the potential to make life interesting.
Hope yours was Merry. Ours sure was. God is so good.
Much love,
Drew & Anna
Week 28 Update (December 18, 2013)
Friends:
Foster's heart block continues to concern us far worse than it concerns her. Today was another good day at Duke.Her heart status remains unchanged. Still no sign of fluid collection or heart failure. Her heart rate was even up to 55 BPM, whereas it has been 53-54. We'll take it! Last week I was "prescribed" coffee and chocolate (for real), which might account for the increase.
They performed a full body scan where they measured her to see if she was growing appropriately. She is 2 pounds, 5 ounces. This places her in the 14th percentile for size. They said they would be concerned if she were under the 10th percentile. So far her growth looks ok.
I asked the fetal medicine doctor (one we had not seen yet), whether the five-week long span of status quo made it more likely that she would continue like this to term. He said it goes both ways and it would be impossible to predict what group we would be in. Sometimes they go to term and sometimes the heart will start to take a turn after a period of stability. Every day is a step closer to her being big enough to be able to get the intervention that she needs. My "big" goal at the beginning of this ordeal was to get through Christmas. Almost there. God is so good.
We are so thankful for each of you. Merry Christmas!
Much love,
Drew & Anna
Week 27 Update (December 13, 2013)
Friends:
Prayers continue to be answered. We returned to Duke today and saw the pediatric cardiologist, Dr. Barker, who is the last of the four cardiologist that we have not met. He was awesome, to say the very least. He spent about two hours with us discussing Foster's heart and what her delivery and the medical intervention thereafter might look like. This was the first time we've really talked about her being born with the folks at cardiology and it felt good.
As of now, her heart status is unchanged. This is good! They tell us these things don't "heal" and we need to maintain status quo. He did a lot of close looking at different things about her heart and body. He described her heart as "very strong." Her ventricular heart rate remains 53 to 54 beats per minute. This low number causes concern and they say its on the low end of the threshold. They say if it were in the 60's, they would be a lot more comfortable that her heart could sustain her until she's big enough. But she's a tough little nut. Her heart appears to be compensating for the low rate by squeezing out more blood per pump that normal. Strong like bull! Most importantly, there is still no sign of "hydrops", or fluid collecting around the heart. The doctors appear more optimistic than two weeks ago. They still can't say if and when her heart might take a turn and start to struggle as she grows larger and the demands on her heart increase. We just don't know.
Dr. Barker talked a lot about what delivery would look like. He told us about a premature baby they delivered that they were able to put on medicine to raise its heart rate until it was big enough for a pacemaker. This was encouraging. He said they would "take" 32 weeks but would be extremely happy if she made it to 36 weeks. He said they probably wouldn't let her cook past 36 weeks. I will be 36 weeks February 11. We pray I am still pregnant on February 10th. Delivery will be very scary as they don't know how her heart will react to being on the outside. We pray for peace in our hearts. Every specialist on board (there's a lot of them) will be ready to do their thing and the heart surgeons will be there and ready to put in her pacemaker. We pray for wisdom in these doctors.
We are still constantly being reminded by the Lord that this is ok. Those reassurances are everywhere. (I can tell you some really cool stories.) We continue to feel peace and know there is a purpose here. We feel your prayers so much!
Much love,
Drew & Anna
Week 26 Update (December 5, 2013)
Friends,
First, she has a name! Foster Grace Lucas. Foster is Drew's mother's maiden name. It was one we had tossed around early on. Given the implications of it's meaning, to promote the growth or development of, it is just perfect. We will call her Foster. Maggie is still sore about "Muffin" being cast aside, while Joseph laments the exclusions of "Thor" and "Daisy."
Yesterday we returned to Duke and saw the Fetal Medicine folks. We alternate weeks between the pediatric cardiologist and the fetal medicine specialists. The appointment was an answer to our prayers. Foster's heart status remains unchanged. Her ventricular rate remains in the low 50's, which is way low, but her heart is not showing any signs of failure. Despite the heart rate, her body is growing and the heart appears to be keeping up without distress. The things they are checking for every week are enlargement of the heart and the collection of fluid around it or elsewhere in her body. This is called "hydrops" testing and it is very scary because things are not good when they start to see the hydrops. So far, we have none.
This is week 26. We really need to get her to term for the pacemaker. Thirty-two weeks is the minimum for the tiniest pacemaker. We pray, pray, pray for more appointments like yesterday. We pray that the heart doesn't begin to struggle as she gains weight and her body requires the heart to pump more blood. For now, she is tick-tocking along in there. Everything else looks fine. Her body appears strong and healthy. She is an extremely wiggly baby. Much more than the other two lazy bums were.
I say again, the presence of the Lord is so strong in this. We have numerous testimonies of how we have been touched both subtly and not-so subtly with reassurrances and reminders to trust by faith alone. It's overwhelming. Despite this challenge, things feel like they are working together for good. (That does not mean I have not thrown objects and had good old-fashioned scare-the-dog meltdowns. Drew has neither thrown anything nor scared the dog, by the way.) We continue to continually pray for the sufficiency of her heart, for peace in our hearts as we go through the next few months, and for the ability to feel joy through the stress. Living week to week between these appointments feels like there is so far to go. We just need more weekly appointments like this one.
Much love,
Drew & Anna
Week 25 update (November 27, 2013)
We had a follow up with the Duke pediatric department to check the status of
the baby's heart. Things are unchanged from last week (that update is listed
below for reference). The question is still whether the heart can sustain
until she is big enough to be delivered and given a pacemaker.
We continue to be thankful for all of your prayers.
Drew and Anna
the baby's heart. Things are unchanged from last week (that update is listed
below for reference). The question is still whether the heart can sustain
until she is big enough to be delivered and given a pacemaker.
We continue to be thankful for all of your prayers.
Drew and Anna
Week 24 Update (November 19, 2013)
Yesterday we had a follow up with the Duke pediatric cardiologists and the maternal fetal medicine folks to check the status of the baby's heart. Things are unchanged. Her heart is still in complete heart block and they were certain it would remain that way. Some good news is that the heart is structurally fine. It appears strong and well put together. Because the electrical impulses from the top half of her heart do not communicate with the bottom half, the heart has developed two heart rates. The bottom half of the heart beats very slow. The big question in this is whether her heart can sustain this until she is big enough to be delivered and given a pacemaker. The doctors have seen this scenario go both ways. We go to Duke every week so they can monitor whether the heart appears to be struggling. The major concern is that it will not be able to keep up with her growing body. Every week they are looking for signs of enlargement or fluid around the heart. Yesterday (24 weeks gestation), she showed no signs of heart failure.
Right now, her heart seems to be keeping up. It is working incorrectly, yet effectively. If she chugs along until term (or close thereto), her prognosis with her pacemaker is good. Kids and adults live long, normal, active and athletic lives with pacemakers. Sometimes the heart rate can even improve at birth so that a pacemaker is not immediately necessary. Sometimes babies must be delivered in order to receive immediate pacemakers. This is a rare condition. Although the doctors know how to treat it, there's just not a lot of data. One thing we can say for certain, if she comes to live among us, she will be one tough nut. We can also say for certain that this is wholly and completely in the Lord's hands and we must resign control. We know that He will provide for our every need as we walk this journey with her.
There is hope in the fact that her heart is strong and she appears to be tolerating this well right now. There is hope in her prognosis if she makes it to term. We are in continual prayer. We return to Duke next Wednesday. Thank you for all of your prayers and support.
Much Love,
Anna & Drew
Right now, her heart seems to be keeping up. It is working incorrectly, yet effectively. If she chugs along until term (or close thereto), her prognosis with her pacemaker is good. Kids and adults live long, normal, active and athletic lives with pacemakers. Sometimes the heart rate can even improve at birth so that a pacemaker is not immediately necessary. Sometimes babies must be delivered in order to receive immediate pacemakers. This is a rare condition. Although the doctors know how to treat it, there's just not a lot of data. One thing we can say for certain, if she comes to live among us, she will be one tough nut. We can also say for certain that this is wholly and completely in the Lord's hands and we must resign control. We know that He will provide for our every need as we walk this journey with her.
There is hope in the fact that her heart is strong and she appears to be tolerating this well right now. There is hope in her prognosis if she makes it to term. We are in continual prayer. We return to Duke next Wednesday. Thank you for all of your prayers and support.
Much Love,
Anna & Drew
Week 23 Update (November 15, 2013)
Friends:
Thank you so much for all of your emails, phone calls, and text messages over the last few days. We have felt your prayers! We are now home from Duke hospital. This is a "wait and see" thing that we are taking day by day. The baby's heart rate was very low on Tuesday when we were admitted and she was diagnosed with what is called a "complete heart block." The bottom chambers do not electronically communicate with the top chambers, which makes her heart pump very slowly. The big question is whether her heart will allow her to grow to term. If she grows big and strong enough, they can install a pacemaker upon birth or shortly thereafter. We are told that full term babies with pacemakers do well and live normal, healthy and active lives. The next three months are critical and she is being monitored at Duke every week and they are performing weekly echocardiograms.
We are praying without ceasing. We had a glimmer of hope Wednesday when a doppler showed a normal heart rate. The doctors were very skeptical that this could be so and so we do not know what to make of it. (We were told that third degree heart blocks rarely ever "reverse" and they had not seen one ever reverse at Duke. We're hoping she takes that as a challenge!). We are taking this one day at a time. Please continue to pray for our little girl. We go back to Duke next Tuesday.
Much love,
Drew & Anna
Thank you so much for all of your emails, phone calls, and text messages over the last few days. We have felt your prayers! We are now home from Duke hospital. This is a "wait and see" thing that we are taking day by day. The baby's heart rate was very low on Tuesday when we were admitted and she was diagnosed with what is called a "complete heart block." The bottom chambers do not electronically communicate with the top chambers, which makes her heart pump very slowly. The big question is whether her heart will allow her to grow to term. If she grows big and strong enough, they can install a pacemaker upon birth or shortly thereafter. We are told that full term babies with pacemakers do well and live normal, healthy and active lives. The next three months are critical and she is being monitored at Duke every week and they are performing weekly echocardiograms.
We are praying without ceasing. We had a glimmer of hope Wednesday when a doppler showed a normal heart rate. The doctors were very skeptical that this could be so and so we do not know what to make of it. (We were told that third degree heart blocks rarely ever "reverse" and they had not seen one ever reverse at Duke. We're hoping she takes that as a challenge!). We are taking this one day at a time. Please continue to pray for our little girl. We go back to Duke next Tuesday.
Much love,
Drew & Anna
Thursday, January 16, 2014
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
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
Subscribe to:
Posts (Atom)