Wednesday, June 21, 2017

The Ultrasound We Never Expected

+JMJ+

This is going to be a long one, but it's because every detail is an important part of our journey. Please bear with me...and if you don't have time to read it completely, all I ask is that you pray for us.

About a month ago my husband and I headed off bright and early one morning on our "date" to my doctor's appointment. I was 18 weeks 3 days pregnant and we were eager to have what I call the "big" ultrasound - the approximately halfway-through-pregnancy anatomy scan that would (assuming the baby was cooperative) reveal to us whether we are having a boy or girl.

Typically I bring the kids to all of my appointments because, well, that's just usually what moms have to do if they don't have family nearby or a babysitter to call. Just this once, though, I had made the decision to try and find someone to watch the boys so that Michael and I could learn the exciting news together without any distractions, surprise the boys with a gender reveal, and simply share a bit of rare alone time (with the ultrasound technician, of course).

Thankfully, a friend from my Catholic moms group volunteered to come over to our house that morning which was truly a gift...because we were about to experience an ultrasound unlike anything we could have possibly dreamed or anticipated.

Soon enough we learned that our baby is a girl(!) and although I only said a few words of joyful surprise, internally I was over the moon. After having two boys (and suspecting I might forever be a "boy mom") I had hardly dared to dream of a daughter...and here she was! She was kicking, yawning, and moving so quickly the ultrasound tech was kept on her toes.

My favorite photo from this pregnancy, taken on Mother's Day - a few days before the ultrasound.
I felt nothing but anxious excitement & joyful anticipation, secretly hoping this baby might be a girl.

Towards the end of the anatomy scan we were looking at our baby girl's brain when the mood completely changed.

The woman administering the ultrasound took some measurements of the brain's lateral ventricles and promptly told us they were measuring noticeably large. She calmly informed us that the doctor would be in shortly and they would get to work fitting us in for a level 2 (high-risk) ultrasound with some perinatologists across the street.

When the doctor arrived she explained that the lateral ventricles are where cerebral spinal fluid starts out before draining down to the 3rd ventricle, the 4th ventricle, and then the spine. If the lateral ventricles are enlarged, it indicates that the fluid is not draining properly and is building up, which starts to put pressure on the other parts of the brain.

This is called ventriculomegaly and can happen for so many different reasons, many of which are completely unknown; known causes could be a genetic syndrome or chromosomal abnormality, an infection, a blockage somewhere in the ventricle system, or quite simply put the baby could just have been made that way from the moment of conception. Often there will be other anomalies seen either in the heart or other parts of the brain, especially if it's linked to something genetic; many other times the swelling is the only problem detected which is referred to as an "isolated" case. Much of the baby's prognosis depends on the root cause in addition to the severity of swelling, but we won't fully know that until she is born, has an MRI, and has some blood-work done (and yes, we were offered a fetal MRI but the doctors assured us it is unnecessary and redundant since she will need one after birth - and no amount of added data would change anything about our care).

To help paint a better picture, the lateral ventricles should typically measure no more than 10mm at any time during the pregnancy. The average size at our baby's gestational age is 6mm. Our daughter's were measuring at about 15, and after our high-risk ultrasound later that morning we were told the measurements were 15.2 and 16.1mm. 10-12mm would be considered a mild case, but with these measurements there was no sugar-coating that our baby's ventriculomegaly is severe.

Long story short, the OB made some calls and managed to get us that emergency appointment. We had the high-risk ultrasound, spoke with a perinatologist, spoke with a genetics counselor, and then spoke again with 2 perinatologists about what to expect and how to proceed from there on out.

Honestly, you know that what you're facing is serious when the specialists are completely swamped yet they still fit you in with only an hour of waiting; then, despite how busy their office was not one, but two perinatologists sat down to discuss the details of what our care will look like moving forward. They did not appear rushed or to be thinking about anyone else and displayed the utmost compassion and respect while they were talking with me, which I found to be a very welcome surprise...but it also helped me understand the gravity of the situation from their point of view.

That day we learned an alarming amount about ventriculomegaly and hydrocephaly (which is what ventriculomegaly starts to be called when the measurements are >15mm). We were told it is almost a certainty that our daughter will need surgery shortly after birth; hydrocephalus is treated by putting a shunt in the brain to drain the excess cerebral spinal fluid and alleviate the added pressure. The pressure on our baby's brain as she grows can have a variety of outcomes in terms of cognitive and/or physical developmental delays, but typically there is somewhat of a correlation between the severity of the swelling and the severity of an outcome - and the doctors indicated they have no reason to doubt that the lateral ventricles will continue increasing in size throughout the pregnancy....

We recently returned for another follow-up ultrasound, hoping to learn that our baby's lateral ventricles had decreased or at least stabilized but that was not the case. We were not shocked to see that the vents have increased, but we were a bit surprised to see just how rapidly they have increased: in exactly one month the vents have progressed from 15.2 & 16.1mm to 21.8 and 23.2mm. 

Additionally, our appointment last month suggested possible agenesis of the corpus callosum but the doctors couldn't get a great angle. We held out hope that perhaps this time they would get a better look and inform us the corpus callosum was fine, but again this was not the case. They did get a better angle and still don't see any evidence of a corpus callosum (CC). The CC is a band of nerve fibers that connects the two hemispheres of the brain; plenty of people have an absent CC and are perfectly healthy, so this isn't really the main concern. It's commonly seen with ventriculomegaly, but it was still a bit of a blow to the optimism we were struggling to hold onto all month.

To summarize, our baby girl has a medical condition with her brain that is called severe ventriculomegaly/hydrocephaly which may or may not lead to mild or incredibly severe cognitive or physical disabilities. In addition, it appears that an important structure of her brain (the corpus callosum) is missing/never formed. I think you all can imagine what kinds of information we were told we might expect from this condition and none of it is pretty. This is one of those medical conditions that commonly tosses around the words "dismal," "poor quality of life," and "bleak" to name a few.

Many people want to know what all of this means practically speaking in terms of the pregnancy and delivery. In short:


  • There is nothing to be done during the pregnancy other than to wait. There are no preventative measures, no possible in-utero fixes, and no genetic tests that can give any definitive answers regarding the root cause of this condition (there are plenty of things our baby can and will be tested for once she is born, so we will get some definitive answers then). 
  • Currently we will plan on a normal delivery, but depending on the progression of swelling in the brain and the baby's head circumference I may need a C-section. 
  • It is highly unlikely I would be induced early for any reason (research studies showed this to have poorer outcomes because younger babies risk more complications from surgery and recovery). The doctors want the largest, most fully-developed baby possible for the neurosurgeons to operate on in order to give her the best possible outcome.
  • We have transferred our care to the specialists, will now be delivering at Duke University Hospital (which is consistently nationally ranked for neurology and neurosurgery), and will have monthly (level 2) ultrasounds to monitor our baby's condition.
  • We will have a fetal echo-cardiogram performed to hopefully verify that everything is perfect with the baby's heart (because ventriculomegaly is commonly seen with other brain or heart anomalies).


Pretty soon we'll be meeting with the pediatric neurosurgeons at Duke to discuss logistics and get more questions answered, but we basically have a whole lot of uncertain waiting ahead of us.

After birth our daughter will most likely need brain surgery and beyond that we have absolutely no way of knowing anything - because there is no telling what the pressure could mean in terms of how the rest of her brain develops and functions. Our baby girl could appear perfectly healthy otherwise or she could experience a multitude of symptoms or developmental delays I feel it unnecessary to list here.

These past 5 weeks my husband and I have been through an array of emotions as we process, grieve, and move forward. We do not lament our daughter's existence, but rather grieve because of the situation and the cards she has been dealt. After two perfectly normal, uneventful (in every good sense of the word) pregnancies this really was shocking news. No one ever expects this kind of thing.

To be honest, I don't need people to tell me to have faith or hope - because we do and always have. But having faith doesn't mean that we can't feel sad or angry or concerned about what this might mean for our daughter and our family. As Christians we are not worried in the traditional sense because we know God will be with us - but of course we have logistical concerns. We do have peace, though, that everything will transpire as the Lord plans.

I don't need people to tell me not to Google things or worry myself, because my husband and I are praying hard but we also refuse to go into this situation blindly or naively. It's important for us to read the medical literature given to us by our doctors, to understand various case studies about ventriculomegaly or hydrocephaly (especially the cases most similar to ours), and to know the statistics and risks of things like our daughter potentially being stillborn (which I am very sad to say are high enough that we need to take note and at least consider that the worst could happen).

I also don't need people to shrug off our daughter's condition or what we have been told as something that is no big deal just because there is a (small) chance she will be fine. Sure, doctors don't know everything and God is beyond statistics, data, and case studies - but just because there is a small chance our baby's outcome may be completely normal does not mean we can count on it or plan for it. The statistical likelihood of our daughter being stillborn is far greater than that of her surprising us with a perfectly normal outcome with no health issues or developmental delays. Suggesting to us that she can be fine (which of course we hope and pray for!) doesn't help at all when we must also prepare our hearts for the possibility that she might not be with us very long.

The fact is that we have been given more than half of this pregnancy to prepare for the worst (while hoping and praying for the best) so that no matter what the Lord's plan is for our daughter and our family we can learn to embrace it with peace. We need to accept the worst as a possibility so that if it comes we are not shocked and can better see His goodness through it all.

It should go without saying, but we also do not need to hear anything cynical or negative. If anyone in our lives processes this information and feels the need to comment in a manner that is anything less than supportive or mentions the concept of "termination," we do not want or need to hear from you (no disrespect, but this journey is difficult enough without unhelpful or negative comments).

What DO we need?? Prayer. And sometimes a listening ear, to be accompanied on this journey. Because I think the only thing worse than experiencing all of this would be to go through it all alone.

There are (rare) cases of mild and severe ventriculomegaly that have resolved themselves in utero and we believe the Lord can fully heal our daughter if that is His plan for her. We have much faith - and we also recognize that a complete healing may not be God's plan. Whatever He wills, we will accept.

We wholeheartedly believe that this daughter was given to us and we were chosen as her parents for a reason; no matter the outcome we trust the Lord to carry us through. And despite any anger, sadness, or stress we may experience we simultaneously rejoice for this little girl and the gift that she is to us. Never before have I simultaneously experienced so much sorrow in tandem with immense joy as we prepare to meet our baby girl face to face. The only way I can think to describe it to those who haven't experienced something similar is to say that it's a heart-wrenching place to be in - one that I can only hope is refining us so that we may be drawn deeper into the love and mercy of our Lord.

We have much to celebrate, so I am making more of a concentrated effort than ever before to enjoy ALL the pregnancy things with this baby (like decorating the nursery specifically for her!), because no matter what happens she is fiercely loved. And to be frank, I need something beautiful and joyful to cling to and focus on so that I do not lose sight of what a miraculous, wonderful gift this baby is.

Our baby girl at 22 weeks 3 days. Isn't she beautiful?!

Right now we are facing a lot of uncertainty, but I can see many ways in which we have been blessed already on this journey. So many, in fact, that it's a topic deserving of its own follow-up post at a later time.

I'm actually surprised by how "normal" Michael and I have managed to be, all things considered - which I am certain is in thanks to all the prayers we are getting. Right now we are striving to live with joy, peace, and much gratitude for all the children we have been blessed with; we are taking advantage of fun trips and experiences we can have with the boys before things get more complicated and doing all the tangible things we can think of to welcome this baby girl and prepare for her arrival.

So...please pray for us.

We are praying first and foremost for a healing miracle, for a safe delivery, a successful surgery if it is needed, and the best possible outcome we can hope for. We are praying especially through the intercession of Our Lady of Guadalupe, St. Gianna, and (last but not least) St. Gerard. St. Gerard is a patron of expectant mothers and has multiple miracles attributed to his intercessory prayers that have brought safe deliveries to moms and babies in high risk situations. And his feast day is our daughter's due date. Once I realized this I felt another wave of reassurance that God is truly with us, because anyone with eyes of faith can see that it surely is not a coincidence.

After all, there are no coincidences - just God-incidences.


"Likewise the Spirit helps us in our weakness; for we do not know how to pray as we ought, but that very Spirit intercedes with sighs too deep for words. And God, who searches the heart, knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God.
We know that all things work together for good for those who love God, who are called according to his purpose."

Romans 8:26-28

Wednesday, June 7, 2017

"One Word" Update & Books Lately

+JMJ+

In January I wrote about my "One Word" that I wanted to focus on for the new year, which was revive. I shared a bit about my husband's and my journey and how the stability of finally planting our feet, buying a house, and setting down roots offers us a prime opportunity to focus on reviving many aspects of ourselves and our lives that seemingly (or necessarily) fell to the wayside as we lived in "survival mode" moving around the country for so long.

Nearly halfway through the year I'm pleased to see and feel that my efforts have been largely fruitful. Decorating our "forever" home, designing plans for our little girl's nursery, and crafting in new ways with the kids have allowed many of my artistic skills to reemerge and be put to good use. I even signed myself up for a "handcrafted night out" during which I made artwork I can happily display in our house (something that was so so good for my soul)!

Can you believe I made this?!?!

Launching and running a Catholic moms group with a friend has utilized many of my ministry, community-building, and administrative skills that are usually manifested in less obvious (and less fun) household administrative ways during these all-consuming baby and toddler years of motherhood. It's refreshing to feel like I have an avenue beyond the walls of our home to give back, support others, and do what I can to get everyone connected and sharing their Catholic and motherhood resources. Plus, the group gives me friends and prayer support when needed, so those are all good things.

Honestly, this year of revival is not so much about reviving skill-sets I may have to offer, but to get back to doing things that make me feel more wholly myself and more fully alive. To pay attention to my physical, emotional, and spiritual needs, to revisit hobbies and passions, and to simply live my daily life in a richer, more complete way that honors my whole being - not just the demands of marriage and motherhood.

Another of my passions I have rekindled is reading good books. Any bookish mama of littles can attest to how challenging it can be to find time in the day for more than the hundredth picture book (although I genuinely love reading those because I refuse to own or borrow any from the library that I deem to be annoying or less than good quality). I am constantly reading, but in recent years I have gone through various phases of pregnancy brain, postpartum survival mode, and just plain "being a mom to little kids" that have caused me to resort to reading only articles, blogs, and picture books for longer stretches of time than I care to admit. I've had good bursts of book-reading energy here and there (I recall making short work of the entire Anne of Green Gables series and 3 or 4 religious books in a 4 month time-span during my pregnancy with Peter), but until this year I hadn't really gotten into any regular kind of reading and motherhood groove.


Baby girl & I managed to read while the boys splashed around
their new water table (hence the fish gift from Peter). ;)

I missed books. I was the bookworm little girl that always had her nose buried in a story from a young age, which is no doubt the reason I have needed glasses since 3rd grade. So, getting back into reading real, enriching literature has been a wonderful way to feel more like my real self again. Plus, it was one thing I managed to keep up with during my first trimester fatigue even when creative endeavors came to a brief halt. I love that reading allows us to nourish our minds even when our bodies are tired.

What have I been reading lately, you ask? Well, here's a list (in chronological order) since I began about 4 months ago:

  • The Lion, the Witch, and the Wardrobe by C.S. Lewis
  • The Horse and His Boy by C.S. Lewis
  • Prince Caspian by C.S. Lewis
  • The Voyage of the Dawn Treader by C.S. Lewis
  • The Silver Chair by C.S. Lewis
  • Unplanned by Abby Johnson
  • Pride and Prejudice by Jane Austen
  • Emma by Jane Austen
  • Northanger Abbey by Jane Austen
  • Mansfield Park by Jane Austen
  • Let the Fire Fall by Fr. Michael Scanlan, TOR (currently reading)

I have owned the Chronicles of Narnia since childhood, but somehow I had only read The Lion, the Witch, and the Wardrobe a couple times and The Magician's Nephew once. After reading 5 of the 7 books this time around I took a little break and switched up genres, but I do intend to finish them soon.

I am somewhat ashamed to admit that I had never before read ANY Jane Austen novels, so you can imagine that having devoured all these books has helped not only revitalize and quench my thirst for good literature, but also helped me achieve something I feel I should have done years ago. After all, it's never too late to read a good book!

I suppose there are other ways I have worked on "reviving" forgotten or dropped passions or habits in recent months, but the only remaining one that comes to mind is the obvious: I resurrected this blog! I had been thinking about doing it for many, many months and recently felt the time was right.

Thank you to all of you that have been patiently following along all these years! And for any new readers out there: welcome. I hope 2017 is shaping up to be what y'all have hoped and dreamed! If not, you've got 6+ months to turn it all around! :)

"Revive your light. Manifest your dreams. Realize your worth."
-Alex Elle

Thursday, June 1, 2017

The One Sentence that Realigned My Pregnancy Priorities

+JMJ+

Pregnancy is unlike anything else in this world. I know I'm stating the obvious here, but the changes that take place in a woman's body during pregnancy are crazy, amazing, marvelous, and weird all at once. 

During my first pregnancy I was an unemployed newlywed (because we knew my husband's contract would have us moving soon, so a job made no sense unless I wanted my resume to look flaky); I occasionally babysat for a family I knew through college connections or substituted at our parish's school, but I had a LOT of downtime in which I read a lot of blogs and wrote my own. Thankfully, reading about pregnancy and postpartum life from the perspectives of many other Catholic women helped better prepare me mentally and emotionally for much of what I would experience. 

Truly, all those blogs helped me be realistic about many things I have witnessed other new mamas struggling with, especially in regards to body image. I am no expert, but all that reading combined with my background in kinesiology as a Fitness Specialist has always helped me maintain a pretty healthy mindset when it came to all the physical changes related to pregnancy. I found myself learning and embracing phrases like "9 months on, 9 months off," which taught me to be patient with my body; by the time my second baby was born and losing the weight was a slower process than the first I had no problem allowing my body at least the same amount of time it took to grow a baby to eventually lose all the weight.

Still, pregnancy is a roller coaster of physical changes and emotions that gets the best of all of us at times. And boy, does the Enemy have a way of making even the most confident ladies manage to feel self-conscious at every possible moment of weakness he can use.

In my head I have always known it is perfectly normal to "show" sooner with subsequent pregnancies, but I didn't have a visible baby bump too much sooner with my second than my first. So, during this third pregnancy when I had strangers already noticing at 13 weeks I admittedly felt self-conscious. My brain was telling me all this was normal, but I still felt caught off-guard by showing SO soon! 

Even when well-meaning friends commented on my baby bump I would smile, but internally I felt myself cringing because it seemed too early; on some level I guess I was worried that showing as much as I did early on might correlate to increased pregnancy weight gain in the end...which is silly and not necessarily the case, but it did cross my mind.

14 weeks

Then, at 14 weeks pregnant I had a play date with a friend. Before we said our goodbyes she said one thing that completely realigned my thinking. We spoke about how far along I was and I sheepishly said, "yeahhh, I'm showing already." Immediately she sincerely exclaimed, 

"Isn't that SO exciting?! I'm so happy for you!"

Instantly I felt myself grinning; all those silly body-conscious reflections fled from my thoughts and all of a sudden I felt 100% at peace and SO joyful about having a visible bump so early on! I snapped the above photo that very night in an effort to shed any remaining timidity and more fully embrace the joy I have been so undeservedly given.

All it took was once sentence from a kind-hearted, good-natured soul to completely reorient my thoughts and priorities in a positive way. 

This is why we need friends, y'all. 

With each of my previous pregnancies I remember distinctly wishing I could always show sooner; once I had been granted that wish I was foolishly acting diffident about it! Thankfully God used my friend to help me stop wasting my thoughts on something so ridiculous.

16 weeks

Ever since that day I haven't been worried about weight gain or what my bump may or may not look like, which is absolutely a grace. Instead I have been able to simply focus on the gift of our daughter's life and spend my time being excited and praying for her. Even if I were to gain more weight during this pregnancy, I would gladly do it if it's what our little girl needed to grow; that's a crucial aspect of motherhood, right? It's about humbly putting our own fears or insecurities aside and - in a way - offering up our own bodies for the sake of caring for another.

At 20 weeks pregnant I currently find myself wondering how the time flies so quickly as I scramble to embrace every little happy moment or milestone before it completely passes me by! Thank Goodness for friends that get us out of our heads and help us rightly see the joy and beauty we are surrounded with!

"Friends are medicine for a wounded heart and vitamins for a hopeful soul."
-Steve Maraboli