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