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
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