Sunday, December 3, 2017

The Paradox

+JMJ+

I'm happy to report that our little Rosalie's recent surgery went well and 24 hours later she was cleared to come home (21 days after our ER trip due to her shunt infection). It has been a big adjustment having her home again, which means we still haven't fully figured out this family of 5 thing...but I'm thankful for being reunited so we can learn our new normal sooner than later!


This photo was taken on November 30, 2017. The calm before the (latest) storm. Since Thursday night I have called the on-call pediatric neurosurgeon multiple times and had an ER bag packed & ready to go at a moment's notice.

Thankfully (hopefully), I think what Rosalie is experiencing is mostly the normal neurological developmental phase known as the "purple period of crying" aka colic and we haven't yet hit a breaking point to suggest shunt issues. But since that day she absolutely refuses bottles - and at the time my milk supply was only enough for half of what she eats (a constant struggle as a result of so many hospital days since her birth), leading us to worry more each time she cries. Is she eating enough? Is there something wrong with her shunt? Is this just colic (and man, oh man, "just colic" is still quite the challenge in and of itself!)?

It took me a surprisingly long time to acknowledge and accept that we are now officially special needs parents. Really long. Like, embarassingly long. Until her recent hospital stay I only toyed with the idea, wondering if Rosalie really even falls into the special needs category (denial much?). But I finally accepted that no matter how you slice it, a hydrocephalus diagnosis requires special monitoring, regardless of how well Rosalie is doing. Even if Rosalie continues to be on track with her development there is no way to ignore that she has a brain condition that requires routine scans and regular appointments with specialists. And so, for the first time I have been deepening my previously shallow understanding of what it means to have a special needs kid.

It doesn't always mean that a child will have cognitive delays or physical delays (although that is often the case). But, it does mean that as parents we are always hypervigilant, scrutinizing each and every baby cry or movement, constantly discerning whether or not it is just normal baby stuff or if there is something bigger going on.

In our case it means having multiple numbers saved in my phone so I can contact whatever specialist I need if I ever get far enough past the hospital visits and recoveries to finally make it out of the house. It means having an "ER bag" packed by the coat closet - because I already have experience rushing Rosalie to the ER and have learned better what I could do to prepare.

It means following medical associations and foundations related to Rosalie's condition and joining parent support groups so I can arm myself with knowledge. It means a crash course and firsthand experience being my child's advocate - educating nurses about specific PT-given protocols for best shaping Rosalie's head, pushing the nurses to switch my daughter's room so she could have more eyes on her at all times, hounding each resident, PA, and attending physician with the same important questions to get the desired answers and results. It means being strong for my daughter, overcoming my natural discomfort for asking questions or making demands of strangers in order to protect and care for my child.

There is no doubt that becoming a mother has put me in plenty of situations throughout the years in which I had to overcome my own fears or discomforts in order to best care for or stand up for the needs of my kids - but being a special needs parent requires me to take my "mama bear" instincts to an entirely heightened, new level. 

I'd also be lying if I didn't admit that having a child with special needs has placed new demands and strains on my husband and me in our relationship - and I thank God that He has thus far granted us the graces needed to somehow find our way back to love and honest communication each time we begin to take out our stress and issues on one another.

There is no question that becoming special needs parents to our third child has been a unique, heavy cross that my husband and I are learning (and sometimes struggling) to carry together - but when I reflect on all the different types of crosses others carry I cannot help but feel that ours is a particularly beautiful one. After all, this cross comes with the best gift the Lord could possibly give us - a precious life to nurture and love! When I see that the reason for such a cross comes with having Rosalie in our lives that cross suddenly seems so light!

A couple of months into this journey and I feel like I've stumbled across the paradox of having a child with special needs: while it seems that the cross of constantly worrying about your child's medical health and safety and sometimes watching them struggle or suffer should be one of the heaviest crosses a parent can carry, it is surprisingly light precisely because our child and the love we have for them overshadows the rest and makes all the challenges worth it simply to have them in our lives.

Although I think St. Teresa of Calcutta said it far better:

"I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love."


Rosalie, I will proudly carry this cross for you - and if it is my path to heaven then I cannot thank the Lord enough for making my path such an easy one. Because caring for you is one of the most simple, natural, joyful things in the world. You are made for big things and I'm humbled to have a part in your life's journey. Xoxo.

Saturday, November 25, 2017

That Newborn Smell

+JMJ+

You know, whenever people used to talk about that oh-so-good "newborn baby smell" I never fully understood what they meant. Baptism chrism oil smell? Sure (and I do love it so!). But the normal smell of newborn skin? I was a bit clueless. This is probably because my nursing babies were ALWAYS with me/on me/next to me - and it is difficult to fully appreciate a smell you're constantly surrounded by....

Then came Rosalie.

When she was in the NICU they gave me a small butterfly blanket to put inside my shirt and leave with her so she would be comforted by my smell, but because of the limited positioning we could hold her in after her brain surgery I did not yet fully know HER smell. Once we brought her home I quickly got to know all about her - but I still had no idea how she filled our house with her smell.

Then, after spending over 24 hours straight at the hospital for her recent ER trip and emergency surgery I went home to shower and get some things; I walked into our downstairs guest room where she and I had been sleeping and her scent completely wrapped itself around me, like a familiar blanket or favorite sweatshirt. 

I tried hard not to cry because suddenly - for the first time - I knew her smell and I missed it in ways that made my heart ache. I wanted so badly to be holding her in my arms, but she was back at the hospital.


Every day since then I have spent an average of 10 hours at the hospital (some days more, some days less) and the majority of that time is spent clutching her to my chest, smelling her forehead. Never before have I known so intimately the exact smell of one of my babies or cherished it so much.

If you are blessed to have a baby in your home, please give them a long hug - and don't forget to smell the top of their precious, little head. I pray that the day never comes that you first discover your baby's smell because they are no longer with you.

I'm so incredibly thankful that our dear Rosalie will soon be filling our home with her sweet smell once again! Please pray for her next shunt surgery to go smoothly on Monday morning - with NO infection this time!

"It's a funny thing coming home. Nothing changes. Everything looks the same, feels the same, even smells the same. You realize what's changed is you."
-F. Scott Fitzgerald

Friday, November 10, 2017

Back to life in the hospital....

+JMJ+

Unfortunately our 6-week-old hydrocephalus warrior has undergone a 2nd brain surgery far sooner than we ever imagined.

After a few good weeks at home, Rosalie began acting more fussy than usual for a couple days leading up to a breaking point early Wednesday morning when she became inconsolable and spiked a fever. Shunt issues are certainly on our radar & fortunately we had educated ourselves well enough on the signs of both shunt infection and shunt malfunction to know something could be seriously wrong. So, I rushed Rosalie to the ER. Her fever had increased her temperature to 101.3 degrees and they began the process of taking samples to check for infection. After speaking to her neurosurgeon they were instructed to transport Rosalie to Duke University Hospital so that she would have her usual specialists & they could tap her shunt to check for infection.

Long story short, I spent an entire day in the ER as Rosalie got an MRI, a shunt series of Xrays, & multiple cultures taken from bodily fluids which led us to discover that not only was a shunt revision necessary, but her shunt was infected & would have to be replaced.

Ready for surgery, waiting for her operating room.

Late Wednesday night (11/8) once the shunt infection was confirmed she was whisked away for surgery to immediately remove the infected shunt. They placed a temporary external draining system that will manage the cerebral spinal fluid (CSF) levels while she is shuntless; once antibiotics can flush out the infection throughout the next week or so then a new shunt will be placed.

This means that Rosalie will be in the hospital for at least a week, possibly longer depending on how long it takes for the infection to clear.

The risk of infection with Rosalie's brain surgeries is about 8-10% & we were well aware that after a shunt surgery the risk of infection is pretty high for the first few months, but we never imagined that Rosalie's very first shunt would become infected (her incision healed beautifully, so the cause is most likely that a tiny bit of skin flora got in during the surgery). It is not uncommon for children with hydrocephalus to experience multiple brain surgeries (in the double digits) to either revise or entirely replace shunts but we were hoping we might be some of the lucky ones that wouldn't need any additional surgeries - at least for a long time.

Rosalie's shunt removal surgery went well and her neurosurgeon is working hard with the infectious diseases team to help pinpoint exactly what types of bacteria are present in the CSF - so they can hone in on which antibiotics to continue with. 

She is being cared for in the pediatric "stepdown" unit, which is a less stressful environment than the intensive care nursery with a more intermediate level of care. She is hooked up to several monitors and is being watched around the clock, but thankfully the stepdown unit is a much more family-friendly place. We have a recliner, which allows us the option to stay overnight - and the unit has a parents' lounge, restroom, kitchenette, & even provides a shower stall with toiletries. We are allowed to have food and drinks & as a breastfeeding mom I am provided meals. So, we are able to stay in the unit with Rosalie with greater ease and comfort than her days in the ICN & for all of that we are grateful.

It is also worth mentioning that with this unforeseen emergency situation our local Catholic community has truly rallied around us, offering assistance with things like childcare until my mom can arrive, meals, having our groceries delivered(!), and providing much emotional and prayer support. We even have a friend that works at the hospital in pediatrics, so during his shift he brought me food right before Rosalie's surgery. Seeing a friendly face after a very long, isolating day filled with doctors and nurses (while my husband unexpectedly worked from home & cared for our boys) was a very welcome and much-appreciated encounter. I cannot express how blessed we have been by the people that we know here & I constantly thank God for leading us to this place - a place where Rosalie has such incredible medical care & we are surrounded by such good, faithful friends that go above and beyond supporting us during a crisis.

I wish that I could say more, but right now is a busy time and I need to get ready to head back to the hospital once my mom arrives to take care of our 4 and 2 year old boys.

So content after surgery because she was able to eat for the first time
in nearly 24 hours!

Thank you again for all of your prayers & support. Our little hydrocephalus warrior is so strong and handling all of this very well, but please pray for the infection to heal ASAP so she can get her new shunt and come home soon!

“One of the marvelous things about community is that it enables us to welcome and help people in a way we couldn't as individuals. When we pool our strength and share the work and responsibility, we can welcome many people, even those in deep distress, and perhaps help them find self-confidence and inner healing.”
-Jean Vanier, Community And Growth

Monday, October 16, 2017

Introducing Rosalie Elisabeth!

+JMJ+

After a long-anticipated arrival, I am happy to officially introduce our sweet Rosalie Elisabeth! She was born on Monday, September 25th, at 9:05am and is officially 3 weeks old today.

In her daddy's arms shortly after birth
~36 hours old, after her first bath in preparation for surgery

As you can see, Rosalie's hydrocephalus caused her head to be very large/swollen at birth (these particular photos hardly do it justice). Then, at 2 days old Rosalie had brain surgery to drain the excessive amount of cerebral spinal fluid (CSF) that had accumulated throughout the pregnancy & to place a shunt, which will continue to manage her hydrocephalus. 

At birth Rosalie was 20 inches long and weighed 8lbs 10oz, but over a pound of her weight came from the extra CSF in her brain. Shortly after surgery she weighed about 7 lbs 5 oz. Additionally, her head circumference at birth was about 46cm and after surgery it was 39cm. It continued shifting between 37-39cm in the following days and probably will for some time as her bone plates settle and her fontanelles eventually close. 

To say that Rosalie (and Michael and I) have been through a lot of changes in the past 3 weeks would be a severe understatement. 

Rosalie spent 11 days in the intensive care nursery and I'm pretty sure those days were both the longest & shortest of our lives. I have so many thoughts about having a NICU baby, but for now I'll simply say that I'm thankful we have moved beyond that chapter of our lives and can now be together as a family at home. Her adoring big brothers are thrilled as well!




It is crazy to think that today, October 16th, was Rosalie's actual due date because I cannot wrap my head around what these past few weeks would have been like if we had not yet seen or held Rosalie, or lived through all that we have experienced with her already. 

As soon as we learned about Rosalie's hydrocephalus diagnosis I took great comfort knowing that her due date fell on the feast of St. Gerard, the patron saint of expectant mothers known for working miracles for mothers and babies in dangerous pregnancy and/or labor situations. However, I'm grateful that Rosalie was not born on this day - because a neurosurgeon made it clear to us months ago that not only would the severity of the swelling in Rosalie's head require a C-section, but it would also require her to get a shunt as soon as possible...which led to her birth being scheduled for the very day she reached full-term (37 weeks).

Of course we'll never know if those 3 weeks would have made a difference in regards to Rosalie's hydrocephalus and its impact on her brain, but we (along with her medical specialists) feel strongly that it very well could have. 

Rosalie's MRI at birth showed a head so filled with fluid that you could barely see ANY of her greatly-compressed brain matter. However, about a week after surgery (and relieving the extreme pressure from her brain) her MRI showed how beautifully her brain had been "decompressing" or "expanding," which is a very, very promising thing in regards to her future cognitive and physical development because it appears that the corpus callosum is the only brain structure that did not form (a common occurrence with hydrocephalus). Had we waited another 3 weeks her brain may never have decompressed as much as it did...and there is always the chance that her brain's lateral ventricles could have been so swollen she might not have made it....

In short, we are so grateful that our daughter has access to such excellent medical care; we are surrounded by intelligent doctors that have given Rosalie a very bright start & we are thrilled that her surgery has been successful!


Our journey with hydrocephalus has hardly begun and there are still many unknowns, but it is an exciting time because it means that - after what felt like an agonizing number of months of anticipation and uncertainty - life with Rosalie Elisabeth here in our arms is well underway. :) 

To all of you that have been following Rosalie's story and praying for her all these months: I cannot thank you enough. May God bless you, because your prayers have greatly blessed our family and especially our little girl. We truly could not have gotten through the pregnancy as we did without your prayer support. 

"Before you were here we dreamed of you, we imagined you, we prayed for you. Now that you are here, we hope for you, we love you, we thank God for you."
-Anonymous

Thursday, September 21, 2017

Ready for Rosalie

+JMJ+

Somehow this pregnancy has managed to pass in the blink of an eye - even though some parts of it felt slower than molasses.... It's hard to wrap my head around the fact that we discovered Rosalie's prenatal diagnosis about 18 weeks ago. 18 weeks! These past 4.5 months have been quite a journey and now we find ourselves preparing for an even greater adventure in just a few days - life with Rosalie Elisabeth!

36 weeks pregnant (okay, 1 day before, but close enough!)

We learned awhile ago that the severity of Rosalie's hydrocephalus meant I would need a planned C-section at 37 weeks (as soon as she is considered full-term/not premature) so that she can have a shunt placed in her brain as soon as possible. Way back when we first learned of her hydrocephalus diagnosis we also learned that there is nothing to do about it during pregnancy - besides monitoring the swelling, hoping, praying, and arming ourselves with all the possible knowledge through various consultations with specialists, of course. Beyond that, we simply had to wait.

Well, we've waited. And waited (and kept ourselves busy preparing for what we can as we've moved forward). And here we are in the homestretch!

Rosalie Elisabeth will be born bright and early Monday morning on September 25th. Assuming a safe delivery, the plans for her first 24 hours of life include: having an MRI, meeting her big brothers, getting baptized, and having brain surgery to place a shunt (which will begin alleviating all the extra pressure her brain has been experiencing from the build-up of cerebral spinal fluid). I'll join her in the intensive care nursery as soon as I can get out of recovery, but thankfully Michael will be by her side right from the start.

Honestly, I'm probably a lot more anxious about everything than I've let on (or even allowed myself to previously admit to myself) because this final week has brought on a whirlwind of sudden, unforeseen emotions and 9-months-pregnant tears...but there are so many things that have also brought me great peace and joy along the way. 

Number one, your prayers have helped. I don't like to admit that I have struggled to pray about all of this as much as I feel I should have been praying all along...but there are many times I felt too drained to pray myself. Just knowing so many of you have been holding us in prayer has truly carried me through. 

Secondly, we have had wonderful, compassionate support - from medical professionals, our family, friends, and the fantastic people we've met through the Be Not Afraid ministry. I've been blessed with friends to cry with, talk with, celebrate Rosalie's life with, and I cannot believe the incredible tangible gifts people have given us - through watching our kids during medical appointments and/or showering us with thoughtful notes or gifts for our baby girl.

The final thing that has brought me a lot of peace and immense joy has been preparing our new house for Rosalie's arrival. I nested hard, acquiring and installing curtains, artwork, frames, & shelves in ALL of the kids' bedrooms, among many other things. Most especially, though, designing and arranging beautiful (girly!) decorations for Rosalie's room gave my heart something happy, lovely, and productive to focus on during all those months of waiting to meet her and start getting some more answers about how she may be impacted by the hydrocephalus.

Now, simply standing in the nursery is cathartic for me as I look around and see tangible signs of our love, prayers, and joy that we get to finally hold her soon. Naturally, I am happy to share a few pictures of the finished product with all of you:




I was super excited to support a few Catholic artisans when choosing artwork for all the kids' bedrooms and could not be happier with everything I ordered! Rosalie's room features a floral heart with a custom quote from JustLovePrints (above left) and a floral watercolor of North Carolina from FawnlyPrints (above right).


Did y'all know that Raleigh, North Carolina is called the City of Oaks? That fun fact led me to find some beautiful artwork on Etsy, including a print (above far right) that features the quote, "Mighty oaks from little acorns grow." I still can't get over how perfect that is for our little hydrocephalus warrior's nursery!


Months ago we began asking everyone to pray for Rosalie through the intercession of St. Gianna, Our Lady of Guadalupe, and St. Gerard, so it was really important to me that I display their pictures somewhere (see the little frames above). The bird print seen here is from yet another Catholic Etsy shop, WhenBeautyMetTruth.


And finally...her ever-increasing collection of headbands and bows. ;) Even more touching is the fact that a friend hand-painted that canvas featuring Rosalie's name and a verse from 1 Samuel. It was such a thoughtful gift I received at Rosalie's baby shower this past weekend and it matches her room's decor beautifully!

At this point, we've done all the "big" things and are simply tying off a few, small loose ends (like packing a hospital bag, getting myself a haircut and mani/pedi, & meeting the priest that will baptize Rosalie when I go for confession and the anointing of the sick in anticipation of my C-section). But realistically, we are so ready to meet you, baby Rosalie. 

To all our family and friends: if you would like to receive Rosalie's medical updates please make sure to get the link to her Caring Bridge site within the next few days (or reach out to my mom or someone else for that info if you're reading this when I'll be in the hospital).

As always, thank you for your continued prayers!

"Just when you think you know love, something little comes along to remind you just how big it really is."
-Anonymous

Tuesday, September 5, 2017

Celebrating Life (with Professional Family Photos)

+JMJ+

In the past I never really wanted to get any professional photos taken during pregnancy. Sure, I would admire other people's sweet family/maternity photos, but somewhere deep inside there was a vain part of me that had no desire to spend money on images that highlighted me when I was anything but my "normal" self. Don't get me wrong - I have loved capturing "baby bump" images throughout all 3 of my pregnancies (as evidenced somewhat by this blog and largely by my private Instagram account)...but to actually invest money in maternity photos? No thanks.

But boy, did a prenatal diagnosis entirely change my thinking.

The first couple of days after our 18-week anatomy scan were emotionally tough and draining as my husband and I processed everything we had been told (and further researched) about our daughter's brain condition. Honestly, it wasn't until the afternoon of the 3rd day that Michael and I finally got to a good place as a couple; only once each of us had gone through 2 long days of our individual processes of handling the initial grief were we blessed to have a fruitful, beautiful conversation that ended with us being on the same page moving forward.

Before that afternoon conversation, though, we had Saturday morning plans to do a fun gender reveal for our kids - something we had been planning to do well before we discovered anything out of the ordinary.

As I made play dough and crafted a little volcano filled with baking soda and pink food dye the night before the gender reveal, I remember Michael questioning if I still wanted to do it for the boys as originally planned. By the time he asked me, though, I had already firmly resolved not to allow any tears, worries, or fears stop us from also celebrating all the good things we had to rejoice about. And man, oh man, was I excited to share the news with the boys about having a baby sister!

That resolution about pushing forward with the gender reveal and creating a happy family memory amidst Michael's and my own struggles with initial sadness or anger laid the foundation for how I would begin to approach the rest of this pregnancy.

Since that day I have found much peace in doing ALL the things I can to truly cherish this pregnancy (despite it looking and feeling unlike anything I could have imagined). I find myself constantly doing my best to intentionally live it to the fullest and be thankful for it - uncomfortable aches or pains and all. After all, we have been blessed with a daughter(!) - our Rosalie.

So, for the very first time during a pregnancy I truly wanted to get some professional family photos taken, despite the reality that I may feel uncomfortable or awkward. But, with all the other things we've had going on and budgeted for as we continue settling in our house and planning for Rosalie's arrival (landscaping, installing a fence, purchasing a van, just to name a few) I never would have dared to suggest out loud that we budget the time or money to have our photos taken.

Cue my friend, Giedre! She's an incredibly talented photographer that just relocated to North Carolina. She approached me about doing a family session to help build her local portfolio as she transitions her website from looking iconically "Chicago" to "Raleigh-Durham-Chapel Hill." Thank Goodness she thought of us, because it was just the push Michael and I needed to actually prioritize photos in the midst of everything else we've had going on.

And her photos are ones we will cherish for years to come. Here are some of my favorites:


Be...


still...


my...


heart!!!


Another perk of Giedre approaching me when she did was that we were able to do the photo shoot during my grandmother's recent visit! Getting some photos with her was an extra-special bonus.



Seriously, if you need a lifestyle portrait photographer in the Triangle area of NC check out Walking Dot Photography. Photographing 2 toddler boys is no easy feat, but Giedre managed to get some beautiful, honest images of our boys (and the entire family).


Truly, she captured Gabriel's (right) and Peter's (left) personalities in a single, sweet photo (above)!


Plus, she made sure the pregnant mama felt beautiful and loved with lots of kisses. ;)



I don't think Giedre had any idea just how much this photo session meant to me, but I'm immensely grateful she captured this precious time in our lives for us. Someday I hope to show these pictures to Rosalie - and she will see the love our family has for one another and how she was included in that love long before she was even born.


"For this child I prayed; and the Lord has granted me the petition that I made to him."

1 Samuel 1:27

Monday, August 28, 2017

Introducing...(A Baby Name Reveal!)

+JMJ+

Hands-down one of my favorite parts of pregnancy is going through the process (with my husband) of discerning our baby's name. I specifically say "discerning" rather than "choosing" because we feel strongly that names help reveal something about who we are as the Lord intends us to be - which means as parents we take care to find the "right" name that our child will be called for all eternity.

When I was pregnant with Peter we initially had a wonderful name all figured out and agreed to sit with it and pray about it - and sure enough, within a month or two my husband and I both felt that it simply wasn't right for him. We didn't know why, nor did we know what name we SHOULD give Peter at the time, but after prayerful consideration we knew the first name just wasn't him. So, we kept at it and eventually found the name we felt at peace about - the one we feel is surely who he is.

Because of how seriously we take the naming process, my husband and I tend to keep our name choices to ourselves until the day the baby is born (which is NOT to imply that people who share names earlier do not take it seriously - I'm simply sharing the reasoning behind our typical process). Waiting gives us time to rightly discern who we think our baby is (because clearly sometimes we feel led to change our selections!) as well as have that time to simply bond with the baby in a special way before inviting the entire world in.

But, as with all things parenting-related: sometimes our position changes and/or our process evolves with each child to suit the specific circumstances. Which is just a fancy way of saying that this time around we have decided to share our baby's name sooner!!!

Because of our daughter's brain condition, many of you have asked if we would share her name early so that y'all can be praying for her by name - and at this point my husband and I have agreed that it just makes good sense to do so. Plus, we have been confident about her name for awhile now.

Without further ado, I would like to introduce to you:



I plan to share more later about how Rosalie got her name, but for now I will simply point out that Rosalie is a French name meaning "Rose" and Elisabeth is a Hebrew name meaning "My God is an oath/oath of God" or "God is satisfaction/My God is abundance."

Thank you again to everyone holding sweet Rosalie in your prayers!

"God calls each one by name. Everyone’s name is sacred. The name is the icon of the person. It demands respect as a sign of the dignity of the one who bears it."
-Catechism of the Catholic Church, 2158

Thursday, August 24, 2017

#Eclipse2017

+JMJ+

Were any of you in the "path of totality" for Monday's solar eclipse?? Maybe if my kids were older and I wasn't third-trimester-pregnant I would have been daring enough to travel somewhere to experience the full eclipse, but as it was we were fortunate enough to experience 93% coverage without having to leave the house or ruin the kids' nap-time!


My grandmother recently came to visit for a 6-day trip and the solar eclipse happened on her last full day with us in North Carolina. Thankfully, she brought with her a legitimate pair of official eclipse-viewing glasses because I had not even attempted to procure my own.

She told me to use her glasses and insisted she didn't need them, but once I had seen the eclipse at its peak for our area I didn't have to do much coaxing to get her outside for a glimpse. And honestly, the eclipse was pretty neat - but I think my favorite part was witnessing my 89-year-old grandmother's priceless reaction when she saw it!


She was joyfully surprised and exclaimed, "oh my goodness gracious, would you look at that?!" with a huge grin on her face. I will never forget her sense of awe or the way she laughed when I showed her where to look.

It was undoubtedly a fun and memorable event, but while the Triangle area of North Carolina experienced 93% coverage at the peak of the eclipse Baby Girl and I reached 80% totality...and we haven't peaked yet! ;)


Monday marked 32 weeks, y'all. Keep the prayers coming!

"The best gifts in the world are not in the material objects one can buy from the store, but in the memories we make with the people we love."
-Amanda Boyarshinov

Tuesday, August 22, 2017

Tidbits on Community: A Gift that Keeps On Giving

+JMJ+

You know you're pregnant with a third child when...


...you receive a thoughtful gift in the mail at 32 weeks(!) and realize they are the only gender-appropriate baby clothes you own! I mean, how did such an obvious thing sneak up on us?? What a different experience from having a first baby.... ;) But seriously, aren't these baby girl onesies lovely?! The friend that sent these had no way of knowing, but they actually match our baby girl's nursery decor quite nicely. :)

And on a separate note, I just wanted to say how beautiful are the many ways we are connected through sisterhood, motherhood, and the body of Christ. 

I have worked and prayed hard to build community and to meet the friends the Lord desires me to have in the 5 states we have lived in these past (almost) 5 years. We have met several friends and acquaintances - some have stayed in our lives, many have gone, and some have pleasantly surprised us with their efforts to keep in touch. On occasion, friendships have only deepened with time and distance apart.

Right now as we navigate this high-risk pregnancy (and unknown future for our child) I am SO thankful for the many caring, prayerful individuals we have been blessed to know all around the country. Your prayers, your notes, and even generous gifts are lifting us up in ways you cannot know.

And please keep praying for us, y'all! The past nearly week and a half have left me feeling anxious to get back to our next ultrasound later this week because last time the doctors discovered something new and surprising (even for our baby girl's brain condition) and puzzling; this week should help us get better clarity about whether or not it's something that warrants attention or treatment or (perhaps) may somehow resolve itself.

AMDG.

"We are all one family in the world. Building a community that empowers everyone to attain their full potential through each of us respecting each other's dignity, rights, and responsibilities makes the world a better place to live."
-Pope Saint John Paul II

Wednesday, August 9, 2017

An Odyssey of Sorts

+JMJ+

It's been a pretty epic week around these parts! Not only did our oldest child turn 4 years old (more on that later!), but we hosted my mom, my sister and brother-in-law, and their kids for 3 days. Plus, our friends had a baptism and after-party for their littlest which means we had lots of celebrating to do in just a few short days. Then, as our busy, happy, full house weekend came to a close and we said our goodbyes to my family we rolled right into the next big excitement of the week when we got our new van!!!

Honestly, I had been looking forward to this event for a long time (and not just because we purchased the van about 5 weeks ago and had to wait for it to arrive locally). I'm not one of those women that begrudgingly avoids the mom-van as long as possible; instead, I think part of me has been eagerly anticipating an eventual van purchase since my earliest days of motherhood! And I've definitely been looking forward to it ever since Peter (our second child) was born because those were the days when my compact car started feeling more than a bit crowded on road trips....

So, shortly after we settled and bought our house my husband and I agreed that - regardless of having a third child yet or not - 2017 would be: "the year of the van." Then, of course, we were blessed with our daughter which solidified that decision and even (baby)bumped up our timeline a bit.

Seriously elated to cruise my 3 kiddos around town in our glorious, new swagger wagon :D

On the surface this photo makes me look like any other suburban mom of multiple children - super excited for the convenience of automatic sliding doors, a trunk that can actually fit more than one large piece of baby gear and luggage, and not having to hunch over and practically crawl inside the vehicle to buckle my children safely into their car seats.... I assure you that I am THRILLED about all of those things (no shame!), but this photo my husband captured yesterday represents so much more.

You see, despite our plans to purchase a van in 2017 there was a brief period of time when my husband and I questioned that decision. We knew that we wanted to have a van, but back when we first began test driving and seriously making plans to purchase one our world was temporarily turned upside down when we discovered our daughter's prenatal diagnosis.

Long story short, we had to evaluate what made the most sense for our family financially and practically speaking in light of so many possible unknowns about our daughter's situation. I will never forget the moment when my husband, Michael, matter-of-factly pointed out what had become painfully obvious to us in those earliest days of researching and processing our daughter's prenatal diagnosis - that perhaps it would make more sense to lease a van instead of buying...because there was suddenly a possibility that our daughter might not be with us long.

Honestly, I cannot explain what it is like to a) be informed of how likely it is for your baby to be stillborn or die shortly after birth or b) have to make family decisions with that information in mind...so I will just let you imagine. If you think it's absolutely heartbreaking, your imagination is probably on the right track.

Tomorrow marks 12 weeks since we got rushed to Duke perinatal for an emergency high-risk ultrasound and it sounds too simple and somewhat cheesy, but we have lived a lot of life in these 12 weeks. 

Thankfully, we've been able to monitor our baby's progress and we (along with all our medical staff) have a better (and ever-increasing) grasp on our daughter's specific situation. In my mind, the worst possible outcome would be stillbirth...but at this point I'm fairly confident that won't happen to us. After all, her condition is being monitored and still appears isolated which, despite the extreme severity of swelling and pressure on her brain, gives us every reason to believe she will have a healthy (C-section) birth without additional complications. Yes, she will need surgery within 24 hours, but our incredibly knowledgeable pediatric neurosurgeon will do everything in his power to ensure she is delivered at the right gestational age to give her the best possible outcome; in our meeting he was extremely confident that she will be born in need of an immediate shunt but should be healthy otherwise. It's everything after her birth that remains uncertain, but at least we feel more and more confident about what to expect in her first 48 hours or so.

So, amidst all of this Michael and I did not hesitate to purchase - not lease - our van. It would be easy to live in fear, but we are not afraid. We have been covered in prayer these past 3 months and I trust that y'all will continue praying in the months to come. The faith that we have in the Lord to take care of us (no matter what happens) combined with the confidence we have in our medical care and facilities leaves us feeling like we are in the best possible place for our daughter (and us).

We are travelling an uncommon journey, but at least now we'll be riding in serious comfort and style. ;)

"Even his griefs are a joy long after to one that remembers all that he wrought and endured."
-Homer, The Odyssey

Wednesday, August 2, 2017

The Power of Sharing (and Social Media)

+JMJ+

It's no secret that the internet is a powerful force to be reckoned with - one that has the potential to do immense good or seemingly irreparable damage. It can build us up or break us down, depending on how we use the tools at our fingertips, who or what we expose ourselves to (intentionally or inadvertently), and of course, where we are at with our emotional and/or spiritual health. All of this is just a fancy way of saying that the internet can be a horrific nightmare or an abundant blessing - which is something my husband and I discussed at length during our engagement as we navigated and set boundaries for the role social media would play in our relationship as a married couple.

When, at 18 weeks pregnant, we were told that our daughter has severe ventriculomegaly AKA congenital hydrocephalus we had a choice: we could suffer in silence and loneliness or we could expose and share our vulnerability with others in hopes of being supported.

Thank Goodness we had the strength and confidence to do the latter, because thus far it has been nothing but a blessing.

Honestly, it's difficult to chronicle the intricate ways in which the Lord has lifted us up throughout the past 3 months - especially because I have enough material to write a small book. But, one way I can tangibly explain it is through the people that sharing our story has put us in touch with.

Let me first backup and clarify that sharing our journey with others was not something that happened overnight. My husband, Michael, and I needed time to process and grieve the diagnosis in our own ways and then as a couple. We needed much of that first month to deal with our own emotions and our relationships with God individually and together. We needed time to process and run through all the worst case scenarios so that we could begin finding peace with where we were at and we told very few people outside our circle of closest family and friends.

During that first month I eventually reached out to a college friend that is a powerful prayer warrior and intercessor to have on our side. She then informed me that one of her good friends (who I remember meeting once at a Matt Maher concert!) had recently given birth to a baby with hydrocephalus and asked if I wanted to be put in touch. Of course I did! While I had quickly joined a ventriculomegaly support group online, this was the first real person I had ever met that could more fully relate to our experience; it helped, too, that she is also Catholic and I could discuss things like prayers and hospital baptisms with her. Despite the fact that her daughter's situation was very different from ours, it was healing and gave us hope to find someone who had lived through even a glimpse of what we were dealing with.

Then, after having our time to process and gradually tell family my husband agreed that it was an acceptable time to share about everything on the blog. He was more of the "it can't hurt at this point" mentality, but I had a strong sense that it could be a blessing. I especially thought this because I help run a very large, local Catholic moms group - and nearly all of the women that regularly attend the play dates knew when our big anatomy scan was and had been eagerly awaiting a gender reveal; having the blog was a great way to share the news with everyone in the moms group and begin receiving a lot of prayer support while ensuring that I had the personal space I needed when I saw everyone face-to-face. Seriously a huge blessing!!!

Through sharing what I wrote on the blog I had a couple of local moms recommend the Be Not Afraid ministry to me. This Catholic non-profit works with any parents given a prenatal diagnosis for free - providing prayer support as well as practical help navigating the complicated and somewhat scary world of NICUs, high risk birth plans, and more. They also provide peer support and pair you with other parents who have gone through similar diagnoses or surgeries in case you'd like to talk to people who have been in your shoes. As their parent care coordinator once told me, "you can text me when you have a hard day - and the hard days do come - and I will drop everything and talk to you if you want...because I understand and have been there. We all have friends and family that want to be there for us, but at the end of the day we are part of a club that no one else wants to be in or can fully understand."

I don't think I need to break down how wonderful it is to have an organization like Be Not Afraid to lean on. Had I not shared everything with the moms group I probably never would have found them.

In short, ever since I published about the diagnosis on the blog the support and new connections have been overflowing. A mom from the online ventriculomegaly group I joined reached out when I posted something in the forum; from her I learned some valuable information about cord blood banking and some experimental procedures taking place at Duke University Hospital - the exact place I will be delivering and seeing our pediatric neurosurgeon. There are parents that fly their kids from all across the country to participate in these cord blood infusions and here we are already planning to be there and with easy access should we want to go that route; God seriously knew what He was doing when He led us here not too long ago!

Next, we found out I would definitely need a C-section and sharing that information led to a friend adding me to a Catholic C-section moms group. I have received a lot of peace being able to read about others' experiences and when I posted a question that mentioned our daughter's diagnosis a mom that has two children with hydrocephalus reached out. She then connected me to a large hydrocephalus group online and gave me additional information about the procedures at Duke mentioned above. And so on and so forth.

The connections with prayerful people that have walked a similar path, the valuable information they have provided, and the peer support and solidarity that has sprung from all of this only continues to grow. When things like this happen the world seems much smaller and I cannot help but marvel at how amazing the internet is. In three months' time my husband and I went from knowing literally no one that has experienced our daughter's diagnosis to having a handful of real people other than our doctors to ask questions and feel better prepared.

Not to mention, sharing our story has allowed hundreds (seriously hundreds - perhaps even thousands?) of people beyond the scope of our immediate family and friends to lift us up in prayer - which I know is helping in ways I can see and feel and in ways we will never fully be aware of.

Prayer, human connections, and community support are wonderful blessings at all times, but especially in times of suffering or trials. The fact that the internet has aided in bringing us all of these things shows me how very good social media can sometimes be.

At the root of this reflection, though, I can see that this force for Good doesn't necessarily come from utilizing the internet or social media tools - but stems entirely from speaking out, not only about the joy we have because of the gift of our daughter's life but also about her prenatal diagnosis and what that means practically for our family right now.



My husband and I could have chosen to go through this pregnancy without telling a soul about our hopes, prayers, or struggles...and how depressing and isolating that would have been! Undoubtedly some things are rightly or prudently kept private, but in our case speaking up instead of suffering in silence has made all the difference. By opening ourselves up and allowing others to support us - through prayers, watching the kids during several medical appointments, or meals when the time comes - we have already been blessed beyond measure.

It doesn't always come naturally to share our deepest worries, fears, or stressors with others - but if there is one thing I have been learning throughout the past 3 months it's that sometimes the healthiest thing to do is to be vulnerable and allow ourselves to be helped by others. Today's society often makes us think it's inappropriate to share anything about our lives that doesn't appear to be perfect which I think is an unfortunate mistake. Everyone has their struggles and we could all do well to stop being afraid of admitting it. Sharing our story has provided us support, healing, important resources, prayers, and ever-increasing trust that no matter what the Lord will take care of us and our little girl.

So, if there is something you're struggling with I hope you will consider sharing your heart with someone you can trust - whether it's a family member, friend, co-worker, priest, etc. There is no need to shout from the social media rooftops unless you seriously think and pray about it being beneficial to your situation, but telling just one supportive person can make all the difference between isolation or receiving abundant help.

"We don't heal in isolation, but in community."
-S. Kelley Harrell

Wednesday, July 26, 2017

Two Kinds of "Strong"

+JMJ+

For those of you with children, do your kids have a "lovey"? You know, that comfort object that must go everywhere your child goes for years on end making it impossible to keep clean?? If you have ever had a child that had a comfort object or if YOU were that child (totally raising my hand over here) then you KNOW how precious that item is...especially at bedtime.

This past Sunday we were getting the kids ready for bed when the unthinkable happened: our oldest son, Gabriel, could not find his beloved Babydoll (yes, a baby doll aptly named "Babydoll") anywhere. Gabriel is almost 4 years old and I kid you not, this had literally NEVER happened since we gave him that precious doll at 18 months old.

Gabriel, 18 mos old with his new doll that basically became a family member

Immediately my husband and I went into "keep the toddler calm" mode while simultaneously starting to dread the potential fallout of such a scenario. We calmly looked through the house, retracing every step since we had returned home from an evening Mass while racking our brains for what we were missing. Long story short, Gabriel definitely had Babydoll at church, he definitely had him as we left the church, and I distinctly remembered handing him the doll after buckling him into his car seat. Yet, the doll was nowhere to be found in the car OR the house and we did not remember seeing him carry it inside.

It was a puzzle for sure, but most importantly we had to figure out how to talk Gabriel through what was probably a terrifying prospect: going to bed without his comfort object.

Like all "wise" parents, we purchased a duplicate babydoll long ago, but we did this far too late in the game for it to make much of a difference. Gabriel refers to the dolls as his "old babydoll" and "new babydoll" and does not at all hold the other doll in any more regard than he does his other various stuffed toys. This means that whenever his beloved Babydoll "needs a bath" we have our work cut out for us as we attempt to temporarily substitute the back-up doll for the real deal.

Many toddlers in this scenario would be extremely upset - angry even. Our sweet Gabriel was undoubtedly upset, but he completely bypassed anger or frustration and went straight to on-the-verge-of-tears and shaky-voice sadness, completely breaking my heart in the process. I remember asking him if he felt sad, him nodding yes, and collapsing into my arms for a big hug.

Thankfully, the bedtime story that Gabriel picked out was Tomie dePaola's Strega Nona and the Twins, which gave me the bright idea to explain that the new babydoll is actually Babydoll's twin. I distracted Gabriel with some light-hearted imaginary play about them being twins, we read the story, dressed the "new" doll in a special outfit, and Gabriel went to sleep peacefully.

All in all, I think my husband and I handled the entire scenario pretty well - but you can imagine how much it did NOT feel like a coincidence that the first thing I read the next morning was this article, which discusses basically the same scenario from our previous night! Go ahead, click over. I'll give you a minute to get caught up....

After reading the article I still felt like Michael and I had done a pretty good job, but I realized that I hadn't said too much of anything to Gabriel about the emotions he surely felt beyond briefly acknowledging his sadness.

The article helped me realize that I really wanted Gabriel to understand how proud I was of him for how he handled the situation -- and that while we have talked a lot about physical strength, this was a prime opportunity to teach him about other kinds of strength.

So, the first thing I did when I entered Gabriel's room was to greet him, plop him down in my lap, and begin telling him how strong he is becoming. At this point he had his old Babydoll back in his arms (another story for another time), but I rehashed that he must have felt sad and missed Babydoll when he went to bed, etc. etc. Then, I asked him if he knew that there were 2 kinds of strength - and of course, he said no because I had never blatantly explained this to him before.

I went on to inform him that other than how strong our bodies are on the outside, there is another kind of strength - which is how strong we are on the inside. I threw out various scenarios about how someone that is strong on the inside is able to calm down when they are angry, is able to say sorry when they make mistakes, can forgive people when they apologize for their mistakes, or can learn to be calm even if they feel really sad. I told him that when he felt sad about not having Babydoll but was able to fall asleep at bedtime anyway he was being very strong and I was proud of him. Of course I reminded him that everyone gets angry or sad sometimes, but told him that learning how to be strong on the inside and knowing what to do when we feel angry or sad is really important - and that I was so proud of him for growing stronger on the inside (I know, I repeat myself with toddlers a LOT - but they don't get quite as sick of hearing things said over and over again in different ways as us adults do). ;)

All of this probably sounds super cheesy, but I'm sure to my 3.5 year old who listened attentively as I spoke those words while hugging him in my lap it was anything but.

Both of my sweet, strong boys (and -surprise!- Babydoll)

Honestly, this felt like one of my better moments as a parent but I'm not sharing this to feel good about myself. Rather, I think it's important for us parents to remember that we have immense power in either dismissing or rightfully addressing our children's emotions - and that they may not learn some things unless we explicitly spell it out for them. My son literally had no idea that there is a type of strength beyond lifting/moving/carrying heavy things until I told him.

I'm sure there are lots of parents that have already explained this concept of both outer and inner strength to their 3 year-olds, but even though we talk a good deal with our kids about emotions this was one topic that had not yet been blatantly discussed. I'm thankful that the article I read helped me recognize this and address it at a time that made sense to Gabriel, which I think is something we're all striving to do for our children. So, if you haven't heard about the train analogy that can change how you see your crying child, consider this a (hopefully) helpful reminder from me to you. It helped me have a beautiful conversation with my son, so here's hoping it speaks to someone else out there as well!

"God is our refuge and strength,
a very present help in trouble.
Therefore we will not fear, though the earth should change,
though the mountains shake in the heart of the sea;
though its waters roar and foam,
though the mountains tremble with its tumult."
Psalm 46:1-3

Wednesday, July 19, 2017

10 More Weeks?!

+JMJ+

Ever since I shared about our daughter's hydrocephalus diagnosis I have received an immense amount of love and support, so I wanted to give ya'll the latest updates as you continue holding us in your thoughts and prayers:

You may recall that at our 18-week anatomy scan our baby's lateral ventricles in her brain were measuring about 15 and 16 mm (normal measurements in-utero never exceed 10mm). Then, at 22 weeks her vents had increased noticeably to about 21 and 23mm. Well, last week I had another high-risk ultrasound and learned that at 26 weeks the swelling in her lateral ventricles had progressed to 31.5 and 31.1mm.... 

It's plain to see that in just two months our baby girl's vents have doubled in size and are already more than three (3!) times the normal size...and baby girl isn't due until mid-October.

I am absolutely doing my best to stay positive and focus on all the good things we can celebrate about our growing baby's health, but if I am being honest I felt very subdued after discovering the latest measurements. After all, I have read a LOT of other parents' stories about measurements at various gestational ages through some online support forums for ventriculomegaly...and once I knew that our baby's vents were already 31mm at 26 weeks I began to feel more deeply just how massive our child's swelling is - because even amidst the other severe cases our baby girl's measurements this early on are some of the worst of the worst I have heard of.

But, we had our big appointment scheduled with the pediatric neurosurgeon yesterday afternoon, which gave me something good to look forward to!

I was incredibly anxious because my husband & I had been waiting for this appointment ever since our 18-week anatomy scan. This was THE appointment that could help give us better insight about what to expect when our baby is born (because there is nothing to do regarding the pregnancy beyond monitoring the swelling and waiting, but so many unknowns about once she is born) and I am happy to say the meeting was incredibly fruitful.

We walked away from yesterday's appointment with all our questions answered (truly - because I was prepared with a typed-up document and made sure we didn't forget to ask a single thing), a clear understanding of what needs to happen surrounding labor/delivery & our baby's first few days, and continued confidence that all the care we have been and will be receiving is absolutely top-notch.

After speaking at length with the pediatric neurosurgeon these are a few things we now know:

  • A C-section is necessary (our baby's head is already measuring 5-6 weeks ahead because of the swelling, so not only will her head be too big to deliver vaginally, but we cannot risk putting extra pressure on her head which would likely cause bleeding in her brain).
  • As soon as she is born, our baby girl will be taken to the Intensive Care Nursery (ICN: what Duke calls their NICU) to ensure she is stable, will have an MRI, and will be prepped for surgery (she will be given nutrition through an IV because her stomach needs to be empty for surgery).
  • Our baby girl will have the shunt surgery (to drain the excess fluid build-up and relieve the added pressure on her brain) within 24 hours after birth.
  • She needs the shunt surgery to remove the pressure on her brain ASAP, which means the C-section will be scheduled at 37 weeks (as soon as she is full-term).
  • Assuming that she is stable and surgery is successful, we are looking at a recovery stay in the ICN for about 2-7 days (which is much less than I had anticipated based on reading other people's stories!).

Our doctors have never been able to see evidence of a corpus callosum in our baby girl's brain, but the neurosurgeon explained that we won't really know about this until after the shunt has time to work - because the build-up of cerebral spinal fluid prevents them from seeing the full picture. Once the swelling goes down we will know more about the corpus callosum (whether it is thin, partially formed, or fully absent) from future MRIs. So right now we only need to be concerned with treating the hydrocephalus and we can tackle any potential other brain anomalies later when we cross that bridge.

Despite learning some hard truths about what our baby's care will necessarily look like in her first 24+ hours, my husband and I walked away from yesterday's appointment feeling much-relieved and at peace. We have a lot to prepare for in the next couple of months, but at least we have the knowledge we need to mentally, physically, and spiritually prepare ourselves. First and foremost I need to ready myself (and all my pregnancy nesting) to meet this baby girl in only TEN MORE WEEKS!

27 weeks

Thank you again to all of my wonderful readers that are keeping us in your prayers! 

+Our Lady of Guadalupe, pray for us.+
+St. Gianna, pray for us.+
+St. Gerard, pray for us.+

"Pray, hope, and don't worry. Worry is useless. God is merciful and will hear your prayer."
-Saint Padre Pio

Wednesday, July 12, 2017

Let Freedom Ring!

+JMJ+

Did y'all have a happy 4th of July?! Ours was very low-key and perfect because of it. :)

We spent the month of May traveling a lot (my husband had a guys' trip, I had my sister's commencement, & we took a 5 day trip to see my in-laws over Memorial Day) which was followed by Peter's 2nd birthday then a weekend trip to the mountains. Whew! We still have a LOT to accomplish locally as we continue settling into our new house and preparing for our baby girl's arrival, so the prospect of staying put for Independence Day was music to this pregnant mama's ears.

25 weeks

So, awhile back my husband and I decided that we would simply enjoy some local festivities, grill some good food, dress the kids in red, white, and blue and call it good. We even picked up some sparklers, which in my opinion was going above and beyond the call of duty with our kids' ages and everything we've got going on right now...so I consider the day a huge success!

The kids certainly had fun because we spent the morning at a local "old-fashioned" celebration where they got to sit on a fire truck, explore an old train caboose, and Gabriel was able to do a bit of putt putt, play a carnival game (which he amazingly won!), and participate in a karate "class" so he could break a board!

I wish the instructor's writing wasn't so sloppy, but it says:
"Gabriel's awesome board break!"

Plus, we parked down the hill from the festival and parade area, which meant we had to cross some train tracks and got there just as a real train arrived, backed up, and switched its track. A real, up-close, and personal train encounter PLUS ending the day with their first-ever sparklers?! Suffice it to say, our boys think celebrating America's birthday is pretty fantastic ("America's birthday" is perhaps not the best explanation of the day, but was the most age-appropriate thing I could think of to get them in the patriotic spirit). ;)


Good thing these boys have a dad to let them have fun,
because I would never have let the 2 year old do this!

Seriously, though, how BLESSED we are to live in a nation where "...all men are created equal...they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness." (Declaration of Independence)


God bless America!!!

"God Bless America, 
land that I love,
Stand beside her and guide her 
Through the night with a light from above; 
From the mountains, to the prairies, 
To the oceans white with foam, 
God bless America, My home sweet home."
-excerpt from "God Bless America" by Irving Berlin