Well, this morning we went in for our first Biophysical Profile (BPP) ultrasound. I had high hopes for a perfect score (8 points), but was still pretty nervous. Our appointment was at 8:15 and it was our first time with a new ultrasound technician because our beloved Currie accepted a position with the Brody School of Medicine at East Carolina University.
The ultrasound lasted about 35-40 minutes because little Ella Paityn didn't cooperate quite the way that we had hoped. Again, the ultrasound tech was looking for:
Amniotic Fluid Volume (2 pts.)-- at least 1 pocket of AF that measured at least 2 cm
I had at least 3 pockets of AF with 4-5+ cm
Fetal Movements (2 pts.)- 3 body/limb movements
She had achieved this in almost no time
Fetal Tone (2 pts.)- 1 episode of active extension to flexion
She had several, but her first was a fist- to open hand- back to fist
Fetal Breathing Movements (2 pts.)- 1 episode of FBM for at least 30 seconds in duration
Well, the fetal breathing movements is what docked us. She showed 2 or 3 episodes of breathing movements, but they only lasted for 6-7 seconds maximum. So, today we got a score of 6. Not exactly what I was hoping for......
When we got called back to talk to Mandy, she had already asked her nurse (Michelle) to hook me up to the non-stress test (NST) for more data. Not exactly sure what I was talking to Michelle about here, but you know I could talk the ears off a toad frog!
The NST looked just like this without the Uterine Contraction sensor.
The NST was supposed to last 20 minutes, but I was hooked up to the machine for about 25 minutes. The nurse brought me in some Cheez-Its and apple juice to eat to see if we could get baby going. Her average heart rate was about 135 bpm. When reading the NST, Mandy explained that she was looking for at least two instances of accelerated heart rate at least 1 standard deviation (sd) above the mean that last for at least 15 seconds before decelerating. If there is a deceleration in heart rate 1 sd below the mean, it discredits an acceleration. Fortunately, Ella Paityn did not have any significant decelerations below the mean and had several accelerations. Here is a video of what it looked like when her heart rate was coming back down.
I was cracking Jacob up because at one point (the Cheez-Its and apple juice must have kicked in) Ella Paityn started going cray. They give you this little sensor that you click when you feel movement and it looks just like the ones that the contestants use on Jeopardy. I was pressing it away....you know trying to buzz in before anyone else beat me to the punch ;)
Please excuse the massive belly.
After 25 minutes, they took me off of the machine and Mandy came in to talk to me. She was very optimistic and said that the NST looked great. She explained that FBM are the most common thing to lose points on and that was why they do weekly monitoring.
Until next week, I'm choosing not to worry.... though it's hard and frightening. God is in control of our situation and He knows exactly what is going on with Ella Paityn. She is HIS child first and I have complete confidence and trust in Him.
Why is this such a hard question to answer? Well, when my mom asked me "what changed" in regards to a situation the other day, I was quick to develop an answer. Intrinsically, I knew what had changed. And while there may have been other contributing factors, I still wasn't able to answer the question forthrightly. Why is it so hard as humans to admit that we were wrong?
Instead, I dodged the question, and passed blame. Oh, the other person's attitude changed. Well, it must have been the medication. And grasping for straws....I guess it was nothing short of a miracle! Don't laugh, I'm pretty sure that went through my head. Why was it impossible for me to say, "I changed. My attitude changed. I have been praying for a revelation, patience, understanding, knowledge." Well, that would be difficult to say because it would admit to others that I had it all wrong.
I can directly correlate the situational shift with traveling to work last Monday. I almost got in a head on collision on the way to work. An older man was on the way to work, his tire blew going 60 mph on a two-lane, and he crossed into my lane loosing control of his truck. I slammed on breaks, he veered into a ditch to my right, skidded across the ditch, took out a road sign, and flipped onto his side in a ditch off of a side road. Fortunately, when I turned around to check on him, we were all okay {let the random hugging of strangers commence}. My devotion that morning included the verses from Colossians 1:15-22:
15 Christ is the visible image of the invisible God. He existed before anything was created and is supreme over all creation,[a] 16 for through him God created everything in the heavenly realms and on earth. He made the things we can see and the things we can’t see— such as thrones, kingdoms, rulers, and authorities in the unseen world. Everything was created through him and for him. 17 He existed before anything else, and he holds all creation together. 18 Christ is also the head of the church, which is his body. He is the beginning, supreme over all who rise from the dead.[b] So he is first in everything. 19 For God in all his fullness waspleased to live in Christ, 20 and through him God reconciled everything to himself. He made peace with everything in heaven and on earth by means of Christ’s blood on the cross.
21 This includes you who were once far away from God. You were his enemies, separated from him by your evil thoughts and actions.22 Yet
now he has reconciled you to himself through the death of Christ in his
physical body. As a result, he has brought you into his own presence,
and you are holy and blameless as you stand before him without a single
fault.
All of these things, Christ did for me. Yet, I still get it wrong. Maybe it is so hard to admit that we are wrong because Christ, in his very being, was/is perfect. I strive to be a Christian, a little Christ, yet fall so short. So, of course, it is much easier to pass blame on to others because that would then make the other person/people wrong, and me right. Right? Fortunately, Christ has filled those gaps for me and reconciled me to him and I am allowed and expected to be wrong. Admitting, accepting responsibility, repenting, changing..... those are the things that set Christians apart. So what changed? I can confidently say that it was me.
We've heard those words A LOT during this pregnancy. But, I will say that I am so glad to be in such good hands... of people who take my health and our baby's health very seriously. My midwife has been very conservative, taking every precaution since my positive AFP screening.
So in three weeks (around 34 weeks gestation), because I screened positive, I will begin getting ultrasounds every other week until I deliver. It isn't technically used for an ultrasound, even though we will get to see our little girl. It is a specific procedure called a BPP- Biophysical Profile. A BPP is basically just a prenatal test done to check in on the baby's health/well-being. The BPP measures 5 different components as shown below, and then the baby is assigned a score.
FHR= Fetal Heart Rate
AFV= Amniotic Fluid Volume
A score of 8-10 is considered "Normal" and where you want to fall. The baby has 30 minutes to achieve this score. A score of 6 is considered "Equivocal" or indefinite. Anything below a 6 is considered "Abnormal". So, at my next appointment we will set a date for our first BPP. My first inclination was to worry and question. Is there something they aren't telling me? Why would they need to do this if everything looks okay? WHAT IF they find something or she doesn't live up to their points standard? Butnow, I'm trying to see it as an opportunity to get to see our little one a few extra times before she makes her grand debut. And I see it as a reminder... that no matter what, this verse (from the Psalm that my Pappaw recommended us read frequently during this journey) will always hold true.
So we have now heard back from Brandy (the genetics nurse) at ECU as well as my midwife, Mandy. When I saw the phone number from ECU my stomach instantly dropped. All I could think of was the last call and the news I had gotten. As soon as I had picked up the phone and learned who it was my response was, "Oh no...."
So Brandy wasted no time diving in to the test results. "You are low risk for Trisomy 13. You are low risk for Trisomy 18. You are low risk for Trisomy 21," said Brandy. "I'm sorry.....what??!", was my response to her. "You're low risk across the board!", she reiterated. And I think I just stood there. I didn't cry. I didn't scream in excitement. I didn't really do anything....I just stood. I'm not sure what I expected my reaction to be, but I don't think I would have guessed that in a million years.
"Candice, are you still there?", Brandy was asking. "Oh yeah, I'm here!", I replied. When I got my thoughts straight, I finally managed to ask her what exactly low risk meant. Similar to the AFP testing, the results come back categorized into risk factors. I fell into the lowest risk category across the board. Less than 1 in 10,000. Yes you read that correctly, and I didn't accidentally type an extra zero.
I'm not sure if it was because I was expecting bad results or if I had written the whole situation off and was expecting good results. I'm not sure what exactly had subconsciously gone on in my mind, but I do know that God had worked on me. I think now, that I had finally come to terms with our situation. I had finally come to realize that I could not control the outcome of this situation (something that I have always struggled with). I had begun to rest in the knowledge that God would bring us through any situation, either situation. And I had started thinking about the beautiful life that we could still have even if our sweet girl did have "designer genes".
I didn't know what the outcome was going to be and that was okay. And to be honest, we still don't know what the outcome will be. But we do have a little better picture into what is going on inside of me. When I talked to Mandy this evening, she was so upbeat and encouraging (as she always is). I told her that the doctor at ECU had offered us an amnio and she said that she wouldn't do that in a million years with the cards that we now hold in our hands. And we're on the same page with her. Obviously, there will be a tiny part of us that wonders until the day our girl is born. But that won't steal our joy, for our joy rests in the Lord and is not contingent on situations or circumstances. And we are just as blessed now as we would have been with a different report. And we will be just as blessed at the time of birth if our baby has Down Syndrome as we would be with a typically developed child.
So, we thank each and every one of you for all of your prayers. We have had countless texts, emails, Facebook messages (public and private) sharing your thoughts, prayers, and stories with us. I have even gotten messages from complete strangers....literally! People that neither of us know from Adam that have shared their story, how they are relentlessly praying for us, and given us scripture. And we are so grateful. So this Christmas, we received an early Christmas gift. One that wasn't wrapped up in shiny paper tied with ribbon and placed under the tree. This Christmas we are praising God for good news- on a multitude of levels. The good news that we received this week as well as the Good News that He has given to the world. Merry Christmas {a little early} Y'all!
During my time as a Morgan, I have gotten to know East Carolina University in many different ways. First, it started off as a slow fade to becoming a fan. :-) NC State had my heart for a while, but when we got married I converted over to a full fledged ECU fan. About two years after we got married, I decided to pursue my master's degree in Special Education and applied to be a graduate student through ECU. In December 2012, I graduated with my master's degree in Special Education from ECU and became an alumna. Then in November 2014, I also added patient to my list of affiliations. No longer am I able to go to New Bern to see my beloved midwife. I am now considered high risk. No woman wants to hear those words when she is pregnant....especially not one who is below 35 like me. Clearly, that entails that something is wrong.
On the morning of our appointment, I was a mess. I was barely holding back tears, my stomach was upset, but I was trying to put on a strong front. When we entered into the hospital and I got registered, a peace came over me. I was still scared to death, but I knew that God was right there with me. I knew that he had already planned my days and chosen our baby specifically for us. I knew that no matter what the outcome was, that my God was faithful and his providence would be made known through our situation. The lyrics resounding in my head were, a peace that passes understanding is my song. Which, by the way, is very ironic because Aaron Shust has a son with DS.
So, on December 5 at 9:10, we walked through the doors of the East Carolina University Brody School of Medicine high risk clinic to go to genetic counseling and have a Level 2 ultrasound done.
In genetic counseling, Allison (our counselor's name) explained to us all about Down Syndrome. She didn't tell me anything that I didn't already know, but she trudged forward for Jacob's benefit. She then went in depth about our family histories asking questions about general conditions (HBP, high cholesterol, diabetes, heart conditions, etc.). But, more importantly she spent time drawing out our family tree asking about genetic disorders (by the way, Trisomy 21 isn't necessarily thought to be passed down through generations--though it can be-- it can also just be an anomaly) and intellectual standing of each person. While we did tell her that there were definitely some branches of the tree that weren't all there.....just kidding!! Allison ended the appointment with, to me, the craziest/most disgusting thing a mother will ever hear. We explained to her that we wanted to do the Harmony test, wait for the results, then decide about an amnio. To which she explained that we were pushed a deadline (wait 10 days for blood results, get back in for anmio appointment, wait 10 more days for results) and that would bring us dangerously close to 24 weeks (the legal deadline for abortion), so that if we wanted to terminate the pregnancy we wouldn't be able to. I quickly shut her off and explained to her that we have complete trust and faith in the Lord. And that he has a plan for us, and that we would never get in the way of that plan or even consider an abortion. She was very understanding, told us that she had to inform us of all options, and didn't mention it again. Altogether, the genetic counseling took approximately 30 minutes and I walked away with a few pictures that I took, well...just for kicks and giggles.
My blood results and risk percentages
Our family tree
Then, we went back out to the waiting room to wait for the Level 2 ultrasound. Let me take a second to just say that we have amazing families. My mom and dad came as well as Jacob's mom to wait with us in the waiting room. They knew there was a chance that waiting in the waiting room was all they would be doing, and they still came to support us. It was definitely comforting knowing that they were behind just a few walls should we need them. Back to the ultrasound-- While the Level 2 ultrasound is not conclusive, it was going to give us more information to work with. It only differs from a regular ultrasound in the fact that it has to capability to do a nuchal translucency test. The ultrasound lasted at least 45 minutes if not a little longer. Our ultrasound tech, Michelle, was amazing! She took her time and explained to us exactly what she was looking at. She looked at the following things specifically (and I may be leaving some out) and was looking for the followings things: the heart (4 ventricles with no holes), the paired organs (2 present), the intestines (blood flow was sufficient), big toes (in line with the other toes), pinky fingers (3 joints), femur bones (correct length), head circumference, nose bone (that it was present and positioned correctly), nuchal fold on the back of the neck (that the thickness was within normal limits), eyes/nose positioning (that the eyes were an appropriate distance from the nose), lips (looking for no indicators of cleft). I think that is about it. And the whole time, our baby girl was very cooperative. I learned my lesson from the last ultrasound and did not drink OJ prior to coming. Of course, I didn't eat or drink anything, because my stomach was in knots.....diarrhea with a tendency toward throwing up (probably TMI!). When the ultrasound tech started looking at our baby's heart, I asked her if there were 4 chambers there because somehow I had gotten confused in New Bern when they were only looking for 2. At that time, she opened up and really started explaining to us what was going on. Though she probably wasn't supposed to, she went through each of the above listed soft markers and explained to us exactly what she saw. I was so thankful because it meant I didn't have to lay there in complete panic and worry throughout the entire ultrasound. During the last 15 minutes, the ultrasound tech had Jacob go get our parents and they were able to come in for the last part of the ultrasound. I think she knew she had an audience because she started showing off for all of the grands! We got to see her moving her arms around, putting them on her head and cheeks, yawning, crossing her legs, and more. It was the first time that I had actually thought an ultrasound was cute. Up to that point, ultrasounds had only been scary.
At the end of the ultrasound, we saw the doctor and he again confirmed that there was no evidence of any soft markers for DS. He also told us that the ultrasound wasn't fail proof because it was still only a screening tool. In fact, 50% of the time a child has Down Syndrome, there are no soft markers present on an ultrasound. Very comforting, right?! Then, of course, the doctor offered us diagnostic testing-- aka, an amniocentesis. We decided to do one more screening before pursuing something invasive.
So, I headed off to the lab for more blood work. Mandy, my midwife, had recommended that I get the Harmony Prenatal test done while there because 1) it is not invasive and carries no risk, 2) insurance covers it at the high risk clinic, and 3) it is much more reliable than the AFP test.
False Positive Rate*
Detection Rate**
Harmony Prenatal Test
Less than 1 in 1,000
More than 99 in 100
Traditional Test
1 in 20
85 in 100
The Harmony test screens for 4 different things as opposed to the less specific 4 the AFP test measures. It measure your AFP (alphafetoprotein), hCG, Inhibin A, and Estriol, then based on the levels of each determines your risk factor. We are supposed to get those results in about 10 business days. From there, we will make a decision on whether or not to pursue an amniocentesis.
After my lab work, we headed back out to the lobby and were done!! We decided to all go to lunch together at McAllister's Deli to celebrate the good report. Both Jacob and I got a bacon spud with a cup of chili and boy was it good! I think it tasted even better because a little bit of stress had been lifted from our shoulders.
On Wednesday, November 12 I went to the doctor for a routine (or so I thought) blood draw. Now I know, that I had the option to not have this blood work done and several of my close family and friends went that route. But nonetheless, God had a purpose for me.
The labs were testing for Down Syndrome (Trisomy 21), Edward's Syndrome (Trisomy 18), and Open Spina Bifida. The appointment only took 5 minutes, and I talked and joked around with the lab techs about not drinking enough water that day so that my weight gain wouldn't be astronomical. PS- I didn't even get weighed that day- haha!
When we got home all we did was cry and pray. We called our families and they cried and prayed with us. Because a different doctor had ordered the testing, my midwife had not received the results and couldn't give me any more information than "You screened positive" and "It could be a false positive". We immediately began reading up on the internet about what all of this meant and what this crazy blood test was that I had unknowingly agreed to! We found some information that led to questions for my midwife to answer the following morning.
What was my risk ratio?
What was my maternal age ratio?
What are the next steps?
My midwife, Mandy, called me first thing on Tuesday morning and went over everything with us. We both went to work and got on a conference call when she called me. My risk ratio was 1:107 and the cutoff was 1:270....so right in the middle. My maternal age ratio was 1:716. Mandy told us that we shouldn't be completely worried yet, that she really would be concerned if my ratio was 1:25. But, of course, the encouragement was lost on me. I began questioning everything that I done and how my life had developed. Things that were literally laughable came to mind.
Results I later got from my midwife
I may or may not have gone out to dinner with two very good friends and wondered allowed if my incessant back popping had caused this. Yes, utterly ridiculous. But, it shows just how clouded my brain was and how closely I examined everything I had done.
Our week was spent in constant prayer and I had daily instances (usually multiple times a day) of emotional breakdowns. Throughout the week we got phone calls, texts, emails, and visits with friends that proved to us the power of the body of Christ and the comfort that He can provide through His people.
After a sweet phone call from my Pappaw, I began to memorize Psalm 139, with a vow to have the entire Psalm memorized by the time baby Morgan arrives. I also found great comfort in one of the things I turn to most often, music. I listened to lyrics closer than ever before and poured out my heart to God.
God, our desire is for our baby to be free of any chromosomal abnormalities. We beg this of you. But, as Jesus said on the cross....Father, if there is any other way, take this cup from me. Yet, not my will, but yours.
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