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