I had put a call into a doctor at my ob's practice a few weeks ago to ask whether or not I was "allowed" to get a massage. Needless to say, I have been a bit stressed. The doc and I played some phone tag, so I sort of forgot about it and asked the perinatologist when I saw him instead.
Today, the doc from my ob's practice called back again to check in and see how things were going, which I thought was nice. I updated him on the latest since the reports from our various visits with specialists haven't totally caught up with my ob's office at this point. And then, like everyone else we have spoken with, he delicately brought up the option of termination.
This whole question of whether or not to terminate a pregnancy has really gotten to me, and for the longest time, I couldn't figure out why. This morning, I figured it out on my way to work, and my frustration rests in the form of a question: Is our situation really that bad, or do people really terminate that easily? So I asked the doctor.
What proceeded was an interesting and honest discussion as this doctor proceeded to unveil the psychology of this decision. He was very straight forward: yes, according to medicine, this is pretty bad. He made the careful distinction between something that is possible versus probable. He talked all about how I am young with regard to the age of having children, and that it was important to think about how keeping a baby that could potentially have very severe needs would impact, me, my marriage, the rest of my family, and future children. It was almost this sort of idea that it would be better for everyone to just get a clean slate.
He told me general things about other patients... one who was so "heroic" for flying all the way to Kansas to terminate her pregnancy at 26 weeks because it's past the legal time frame in Maryland, and of another who recently found out that her baby has Down Syndrome and is considering termination. He said that in his fifteen years of practice, he can only remeber three... three patients who chose not to terminate when being given the diagnosis of a genetic defect or a congenital defect. I politely listened, because I did appreciate his perspective, but moreover was genuinely interested... not interested in the option of termination, but interested in the mindset behind it.
This doctor didn't know he was talking to the neice of a dear, sweet woman with Down Syndrome, or the step-sister of a girl who is blind, mentally retarded, mildly autistic, and who can communicate only limitedly. If my grandmother or my step-sister's mom had chosen what almost all of those other women this doctor has encountered in his fifteen years of practice had chosen, they wouldn't be here. I wouldn't be able to laugh when my aunt remembers things from years ago that I had soon forgotten, or have my eyes well up with tears at the beauty of step-sister singing at the top of her lungs at church, particularly around Christmas time.
Maybe our prognosis is that bad... but God is bigger. God is good, and He is the author and perfector of life. In the book of Psalms, David talks about how all of our days are ordained for us before one of them ever came to be. Our little boy's days have already been ordained; I don't know how many days that is, or how hard those days may be to walk. But I know God is good... always.
And so, I will be the fourth... the fourth woman that this doctor has encountered who has chosen not to terminate her pregnancy because of a difficult diagnosis, or the long road that it is to walk. God's grace is sufficient for each step; He has certainly shown us that so far. Just maybe, God is continuing to work out a miracle. And if He is, then today it was clear to me that this doctor is one more person who needs to see and be astounded by the miraculous work of God. Would you pray for him?
Would you continue to pray with us that our little guy would be healed? Maybe that's in the womb, and maybe that's out of the womb once He's born. Would you pray that God would do a miracle in his life, that his heart would be perfect, his lungs and every other vital organ, system, and limb would all be just right? Would you pray that his omphalocele would be able to be fixed and that once it is, everything would "work" correctly and be free of any complications? And would you pray that because of God's great work in our little boy's life, that other people who don't know Him would have the same reaction the centurion did when he witnessed Jesus's death on the cross that "Surely, the man is the Son of God," and that they would come to know Him as their own Lord and Savior?
Wednesday, May 28, 2008
I had put a call into a doctor at my ob's practice a few weeks ago to ask whether or not I was "allowed" to get a massage. Needless to say, I have been a bit stressed. The doc and I played some phone tag, so I sort of forgot about it and asked the perinatologist when I saw him instead.
Posted at 8:36 PM
Tuesday, May 27, 2008
I am sure many of you have also seen the movie What About Bob? It just cracks me up. I love how Bob talks himself through seemingly mindless tasks in his day... "Baby steps to the elevator... Baby steps down stairs... Baby steps to the door." I also thought about how silly Bob seemed. Until recently, that is.
This pregnancy has been like a series of baby steps, even before we knew anything was wrong. It was baby steps until the first prenatal appointment, baby steps until the sonogram, baby steps until we're past the point of my previous miscarriage. I used to find those baby steps a little annoying, always wishing I would be past the point of baby steps and to the point of feeling like this pregnancy was on cruise control.
God has had other plans. He isn't through with the baby steps, and He is so graciously teaching me to embrace them and to be thankful for them.
After that long day in April where my world was turned upside down (the day we learned of our little man's troubles), this pregnancy has been all about celebrating baby steps. Baby steps until the FISH results from the CVS test.... normal. Baby steps to the thorough CVS results... normal. Baby steps to the next prenatal appointment... there's still a strong heartbeat. Baby steps to the next sonogram... the cystic hygroma has shrunk. Though the large omphalocele was a small step back, it didn't negate all of the baby steps forward.
Today there were more baby steps... baby steps to the echocardiogram... and we were told that out son's heart has all four chambers. God has been abudantly gracious so far, and I am confident that He will continue to be.
Granted, there's a lot of information still unknown. And so, there are more baby steps. Baby steps to the next prental vist, the next sonogram, and to our "marathon day" at Children's Hospital when we'll have another fetal echocardiogram, a fetal MRI, and a consultation with a pediatric surgeon.
Would you pray with us that God would continue his gracious work in both our baby's life and in ours? Would you please continue to pray that our baby's heart is forming perfectly, that it is strong, and that the rest of his little body is growing and developing just as it should? Would you continue to pray for Spencer and I that we would rejoice in the baby steps and the good news that each one has brought, and that God would continue to guard our hearts and minds with His perfect peace?
I am learning to love baby steps. And, I don't think that Bob is so outrageously crazy any more ! :)
Posted at 4:56 PM
Monday, May 26, 2008
I always remember watching the movie "Annie" growing up, and was always captivated by the song "Tomorrow." I remember singing it when I was younger and had a bad day. Tomorrow is a big day for Spencer and I and in the life of our sweet little boy.
Tomorrow is our little guy's echocardiogram. We are meeting with a specialist from Children's Hospital at one of their outpatient centers, so I know we're in good hands. What we find out could play a large role in how the doctors view his viability, and how complicated things may or may not be for him after birth.
Would you please pray with us for our little guy's heart? That it is developing absolutely perfectly, that despite the perinatologist's speculation it is inside his chest cavity, and that there are no signs of a congenital heart defect?
God has been gracious in causing the cystic hygroma to shrink; this is our next big hurdle. Would you also pray for Spencer and I, that God would grant us His perfect peace that surpasses all understanding?
I will be sure to update after tomorrow's appointment. And hopefully, like little orphan Annie sang, "The sun will come out... tomorrow."
Posted at 3:53 PM
Tuesday, May 20, 2008
We were able to gather lots of bits and pieces of information; certainly haven't gotten to the bottom of anything. Overall, I would say it was a small step in a positive direction.
God is BIG... Big enough that He SHRUNK our little man's cystic hygroma from 8.8mm at 12 weeks to 5mm at 16 weeks. Dr. Pinkert, the perinatologist who performed the sonogram today, wasn't even overly concerned about it.
So that's a HUGE praise! Dr. Pinkert said that fetal hydrops could still develop but didnt' think it was too likely, particularly if our echocardiogram next week looks good. He also said that there could be some loose skin on the baby's neck as a result of it being stretched from the fluid, but that it's easily correctable with cosmetic surgery, if that is even needed at all.
The spinal column, development on the limbs, the baby's brain and head all look good. I asked if there were any signs of cleft palate (which can be a marker for numerous different genetic syndromes) and he said that at this point he didn't see any indication of that. He also said he didn't see any signs of spina bifida. So, that was all good news.
Now for the part that wasn't so good. In the beginning of all this, the doctors didn't speak much about the omphalocele (the umbilical/abdominal hernia) because it seemed sort of secondary to the glaring concern of the cysitc hygroma. Now, the omphalocele is the bigger concern. Basically, the baby's intestines and liver (yes, his WHOLE LIVER) is outside of his body. The size of the "hole" (for lack of a better word) in the baby's abdomen where these organs are coming out is smaller than the contents of what's outside the hole since they've continued to develop. This will obviously need very extensive surgery at birth. Dr. Pinkert wants us to go for a fetal MRI at 22 weeks at Children's Hospital, and also wants us to set up a consultation with a pediatric surgeon at that time.
In addition, the wall of the baby's chest surrounding the heart looked a bit weak/thin to Dr. Pinkert. He said that if the heart is in the chest cavity, that that's something that could also be repaired. He said that he wasn't 100% sure that the heart was in the chest cavity, but thought that it was. I think his words were "it's close" to the opening through which the other organs are protruding. I asked him if, as the heart was growing, it could slip out and he said no; it's either in or it's out. Let's hope that next week's echocardiogram shows that it's in!
Dr. Pinkert wouldn't begin to address my question of the baby's viability. I did ask him if there was any sort of reasonable chance that, if the baby is born, he could live a fairly normal life. The doctor's response was that "that's why we're doing all this... that's the hope." So, for the first time I felt like there were other options than the baby either dieing in utero or being born with severe and profound disabilities. There's obviously still a chance of the baby not making it, but it gave me some hope to hear that if the heart looks good and if he can make it through the surgeries and the surgeries are successful, this little guy could live a somewhat normal life. As of now we're still left way up in the air, and are far from out of the woods. Next week's echocardiogram is a pretty big deal.
Other things Dr. Pinkert said were that if the baby makes it, I would deliver via c-section, and that this baby would be in the NICU for quite a while. He did also reiterate, though, what a great thing it was that the chromosome results from the CVS test were are normal. AND, I was even told that I am allowed to get a massage!!! (My doctor before said no... this one said, "By all means! I am sure with all this you could really use one!")
God is good in taking care of the cystic hygroma and it having shrunk. God is good for having the baby's brain, spine, and limbs all looking good. This poor little guy's abdomen needs some work.
So, would you join me in praising Him for the good works He has done so far? And would you pray with us for next week's echocardiogram and our little boy's heart development? Would you continue to pray for peace of mind and heart for Spencer and I as we continue to go to one appointment after another and receive bits of news? And lastly, would you continue to pray that God would move in big ways so that our baby would be healed and that He would be glorified?
Posted at 6:02 PM
Waiting can be so hard. These last few weeks have been full of waiting... waiting for CVS results, waiting for my next prenatal appointment. And today, it's waiting for 3:30.
We haven't seen our little guy since we received our horrific news at 12 weeks (today is 16 weeks 3 days). As much as I am excited to get to see him on the ultrasound screen, I am also petrified.
I just keep playing that Passion song, "My Glorious" over and over, reminding myself that God is so big. If He wants to heal our little boy, He can; and if He doesn't, well that's His perogative, and we'll have to walk through it.
Would you pray for us today? That God would work a miracle and that the news we receive would be positive? Would you pray that the cystic hygroma as decreased or resolved, that the omphalocele (umbilical hernia) has decreased or resolved, and that all of our little boy's organs and limbs, specifically his heart and his brain, are developing properly? Would you pray for God to move in a big way... one that would stun the doctors and bring glory to God?
I'll be sure to update this afternoon.
Posted at 11:24 AM
Thursday, May 15, 2008
Today I have had the fortune (or misfortune) of sitting here on my periods off grading my sixth graders' essays. They were to write about a difficult choice they've had to make, exploring the pros and cons of both sides of the choice, and then ultimately what their decision was. It has been somewhat interesting to catch a glimpse into their minds and what seems important to them.
As I have been grading, a song by Passion that I haven't heard in a while came on... My Glorious. I was captivated by the lyrics as they hit me in a way that they haven't ever before:
And all You ever do
Is change the old for new
People, we believe that
God is bigger than
The air I breathe
The world we'll leave
God will save the day
And all will say
Isn't that just awesome? Over the last few weeks, things deep within me that I never knew were there have been brought to the surface... old ways that I have viewed motherhood, people, how I view this pregnancy, and even my view of God. Through the last few weeks He has been trading those old perspectives for new ones.
And I just love the lines that say that God is bigger than the air I breath, the world we'll leave. If I can't cling to that, what can I cling to? God is big... bigger than statistics, bigger than medicine, bigger than a prognosis.
The prayer of my heart through all of this is captured in those last three lines, that God will save the day, and all will say, my glorious.
Would you continue to pray with us that God, our God who is so big, would do a miracle for our baby and that he would be healed... that God would save the day so that all will be in awe of Him and have no response other than "My glorious!"
Posted at 1:38 PM
Tuesday, May 13, 2008
I received this in an e-mail from a dear friend about a week ago and it spoke to the depths of my soul.
by John Fischer
Sometimes I act as if I'm just muddling through life. I'm lucky if I make it through a day. People ask me how I'm doing and I hear myself say -- even to fellow Christians -- "Oh, I'm hanging in there, just barely." Then I remember Christ praying to the Father: "As you sent me into the world, I am sending them into the world," and I have to ask myself: Do I sound like someone who has been "sent?"
If I have been sent, then I am on a mission, and if I am on a mission, how can I just be muddling through life? Somehow I don't think muddling is in my mission statement.
I'm thinking of Paul in 2 Corinthians 2:14-17 where he says that he is always being lead in a public display and is manifesting, wherever he goes, something real about the nature of his faith in Christ, and it is always having an effect on people, and I realize God can accomplish this mission in spite of what is currently happening in my life. Paul even makes this statement right after he has confessed his anxiety over plans not going as expected (verses 12-13). Even then, he could still say he was being lead on a mission.
That means nothing can stop us because nothing can stop God's work in our lives. It would be great today if when people ask how I am, I could say, even if it's just to myself, "I'm on a mission," because I am. I'm on a mission to love God today with all my heart, and let that love reflect in all I do. I'm on a mission to love those closest to me -- to be ruled by care and compassion. I'm on a mission to tell my story to anyone who wants to hear it. I'm on a mission to manifest the fragrance of the knowledge of Christ wherever I go. All this can happen regardless of the circumstances in my life. I don't get to muddle through anything.
In the movie "Saving Private Ryan," a platoon of men in World War II are on a mission to find Private Ryan and bring him home. Sometimes they struggle with their mission. Some of them almost abandon it, but as long as they are moving with the mission of the group, they are all in on it. They were sent.
How about you today? Have you been sent? Then you aren't just hanging in there; you are on a mission. Be aware of it today, and look for what God has for you, because you were sent.
Sent. Lately, I haven't felt sent. I've felt like I have been muddling through life, and on some days, barely hanging in there. But I love what Fischer says about meing on a mission to love God with all my heart and to let that love reflect through all I do, and to be on a mission to tell my story to anyone who wants to hear it, knowing that God's goodness and glory can be revealed through it.
Fischer's words were a wake up call to me as I remember that these current circumstances are part of something much, much bigger, and it's a tool of the enemy to have me take my eyes of God and on the desperation of my circumstances. It's then that you drown... much like Peter when he stepped out of the boat when he took his eyes off Jesus... not because of what the circumstances are, but because of your (and my) perspective.
So today, I've decided that I want to act like I am sent. I don't want to feel like I have to hide being pregnant, but rather feel proud that I am a mommy who loves her little boy, even though he's still in the womb and may end up going straight to heaven. I want the love I have for him, for my husband, for my family, and for those closest to me to be a fragrance of God's love for His people. I want to have the courage and boldness to tell my story to all who want to hear, that it would lend compassion and sympathy to anyone with similar circumstances, and would reflect God's goodness and glory.
I am on a mission. I have been sent.
Posted at 11:25 AM
Sunday, May 11, 2008
Mother's Day. Every year, this is something I typically look forward to. I love spending time with my Mom and my sister, honoring my Mom and building memories together... even if it's something as simple as lunch and a movie.
This year was somehow different, somehow tainted. I don't know if it was because I had already ingrained in my head that "next time" Mother's Day comes I would get to celebrate, or if it is because I wouldn't even be comfortable at this point if someone had given me a "Mom-to-be" card for Mother's Day. Or maybe it's something entirely different that I haven't put my finger on yet.
Yesterday we went to a cookout for some neighbors who are moving. In our neighborhood, "alley cookouts" are pretty popular. It sounds strange, but these alleys aren't what you would typically picture. There are four streets whose alleys form a large square, and in the middle is a great playground. There were kids everywhere... riding big wheels, playing with a ball, sitting in their strollers. At first it didn't phase me, but after a while it did and I had to leave. I just felt so.... jealous.
I was jealous of the mom with the 11 month-old who was just starting to walk, and of the mom with the 4 month old who sat in his carrier most of the time while other people went over to see him. And of the moms with the older kids who could throw a ball, ride a bike, and run around. If this little guy makes it, would he ever be able to do any of those things? It was a reminder that all the ways in which I have envisioned motherhood... teaching your baby to walk, showing a toddler how to ride a big wheel, or playing catch with your 5-year-old... may end up looking completely different.
Deep down I know that's okay. I know that loving your child doesn't have to mean playing catch or riding bikes. I think of Jesus when he reached out and touched...touched... the leper, and how meeting that man's need of human, physical contact, was a greater act of love than many of us would dare encounter.
And so I am back to the passage in I John that I wrote about previously... that perfect love casts out all fear, and that we can love, because He first loved us. My love is so far from perfect, but it is the cry of my heart that this experience would help to perfect my imperfect love, and would help me to be a little more like Jesus in the way that I love others. Being a mother means loving well... loving children unconditionally and helping to meet their every need, even their deepest ones.
Even though I am not celebrating Mother's Day in the way in which I thought I would be, there is something to celebrate... and that's the fact that by God's grace, I am learning to love more boldly, more deeply, and less fearfully (though this is coming slowly) because of the road He has set before us.
Posted at 7:22 AM
Friday, May 9, 2008
I came across this verse as I was spending some time reading and praying before our appointment this morning... Be joyful in hope, patient in affliction, faithful in prayer. I know that Spencer and I have been praying relentlessly about this pregnancy, pleading with God for wisdom, strength, and for His mercy on behalf of our baby. But joyful in hope? I wish it weren't true, but my hope is starting to wane.
This morning we had to wait forever for my "regular" (as if "regualr" describes anything about this experience) prental appointment. Several glowing, young, pregnant girls graced the waiting room while we waited. About 40 minutes later we were finally called, and they took us back and weight me. I had actually lost about half a pound from four weeks ago... I thought for sure that meant that our baby had stopped growing and was no longer alive.
I was wrong. The nurse found our little guy's heartbeat in just a few minutes on the doppler... a whopping 166 beats per minute.
I was hoping that this would have given both Spencer and I some feeling of relief, but truthfully it didn't. There wasn't much information to glean from this appointment, but my doctor was able to answer many of my questions. She said that she is most suspicious of a rare genetic syndrome which wouldn't have been picked up by the CVS test, since that tests chromosomes and not the specific genes. She also mentioned that fetal hydrops (when the cyst-like structure on the baby's neck basically spreads and impedes the functioning of many of the baby's organs, including the heart, usually resulting in fetal heart failure and death) is still a definite possibility. She also reiterated that the viability of the pregnancy is low (in that 10-15% range) and that should the baby be born, it's difficult to say what sort of functioning he would have. She did, however, seem to speak more to the baby's birth (both at term and pre-term) more than anything else and some of the care and management that would accompany that. The other thing she mentioned that caught me off guard was that she said at this point should we lose the baby, I would have to be induced and deliver at the hopsital. A few days ago I thought I was about two months away from that, learned a few days ago that many doctors start choosing to induce labor at around nineteen weeks or so... I had no idea that at fifteen weeks that would be the route that would need to be taken. I'm having a hard time swallowing that.
In addition to our sonogram coming up on May 20, she also referred us to Children's Hospital for a fetal echocardiogram. That should give the doctor there the chance to get a really good luck at the baby's heart, as fetal cardiac development is also of great concern right now.
So we're left with more waiting. And I don't know what it is we're waiting for. At times I become restless, though overall feel as though I have done well with being patient through this. I know that I have been faithful in praying diligently about all aspects of these circumstances. But I am not sure how to remain joyful in hope. We weren't given any good news today, other than his heart is still beating. Medicine is telling us that there really isn't a favorable outcome any way this situation were to work itself out. The only thing, then, I know to be joyful in hope about is the chance of a miracle.
God is in the habit of doing that. He can, if he chooses to do so. Would you pray with us that God, in His mercy and grace, would prove medicine wrong, and would heal our little boy, so that His glory and His honor would shine through it what seems like a dark situation? And in the meantime, would you pray that Spencer and I would remain joyful in hope?
Posted at 3:31 PM
Wednesday, May 7, 2008
I can remember when I first discovered I was pregnant the first time, and all of the innocent excitement that filled my heart and my mind as I dreamed about what it would be like to be a mom. I remember thoughts filled with "Next time we do such and such, the baby will be here!" and "Next Christmas we'll be buying presents for our own child!"
After my first miscarriage, though painful, it didn't take terribly long to push those thoughts, hopes, and dreams out of my mind. Until now.
It was easy because all of those "next times" were still far off. Not anymore. This Friday was the estimated due date from my first pregnancy. I remember thinking, "Maybe I'll get to celebrate Mother's Day this year." This year, I won't.
To complicate matters, my next doctor's appointment is Friday. I am not sure why I scheduled my appointment for that day, perhaps because I had already planned to take the day off. As it turns out, it's the only day my doctor will be in the office this week.
I wish I wasn't losing hope; but the combination of a current pregnancy with a poor prognosis and all of the "next times" starting to come around, it's hard. I feel burdened by the weight of the waiting, the pain, and the reality of hopes that haven't come to frutition.
I know that God redeems all things for good... I hope that I start to see that good real soon.
Posted at 9:26 AM
Saturday, May 3, 2008
We have received a few small doses of hope over the last week or so. The FISH results (the quicker results) from the CVS test came back normal. No Down Syndrome, trisomy 13 or 18, and no Turner's Syndrome. AND, we found out that I am pregnant with a little boy!
Yesterday, we received more good news. The more thorough results of the CVS test were all normal. Our genetic counselor even requested specific testing on chromosome 22 for something called DiGeorge Syndrome which is associated with congenital heart defects, which in turn, are associated with cyctic hygromas. That, too was normal.
Unfortunately, this doesn't improve the 10-15% chance of a viable pregnancy, as that statistic correlates nuchal fold thickness in babies with normal chromosomes and viablility. But, they were able to rule out some pretty significant and scary things. God is good. A dose of hope.
I was reading in 1 John recently about love, and about how we love because God first loved us (1 John 4:19... the verse that was actually on our wedding invitation). Prior to that, though, it talks about how there is no fear in love, because perfect love casts out fear. There have been many times in the past few weeks that I have felt really afraid, and I know that's normal. But, I know that fear can also grip a person to the point where they are left somewhat paralyzed emotionally, and when that happens, we can't love well. I have no idea what God has in store for us with this pregnancy; but what I do know is that we're called to love others well... even this little baby that isn't born yet. So, would you pray that Spencer and I would have the courage, in spite of fear, to love this baby well for however long God would have him be with us and to not be afraid?
Would you please continue to pray for a miracle, not just for the sake of Spencer, myself, and our baby, but so that other people in our lives, particularly our family, might see His good works and come to know him? I think about times in scripture where Jesus was questioned about people's disabilites, being asked if it was that person's father's sins that made them that way, and how Jesus replied that no, this happened so that the power of God might be displayed in that person's life. Would you pray that God works a miracle, that His power would be displayed in our lives so that others would believe and come to know Him?
I have come to realize that these circumstances are part of a much large picture... the picture of God's redemptive story of humanity. How He chooses to act and to move in this is His perogative; He is soverign and He is always good. But, How I choose to handle this and to respond speaks volumes of God's character as well; I have the opportunity, through this waiting and suffering, and how I choose to love my son in the meantime, to bring glory and honor to Him. THAT is a reason to have hope.
Posted at 11:02 AM