Wednesday, December 27, 2017

A "Shuntiversary!"

+JMJ+

It's been exactly a month since Rosalie's most recent brain surgery, which means today we are celebrating her 1-month "shuntiversary!"

Strangers stare because they don't know, but that bulge on her head is a lifesaving
piece of hardware for which we are thankful. 

We celebrated a 1-month shuntiversary with her first shunt, but before we could celebrate any additional shunt-related milestones she was back in the hospital due to shunt infection. On what would have been her 2-month shuntiversary she actually underwent surgery to place her new (second and current) shunt.

And we've made it a full month with no complications! This past month has been especially sweet in several other ways as well. All former positioning restrictions were lifted by her neurosurgeon, which means she can be worn in a baby carrier and sit/ride in a normal infant car seat and baby swing/bouncer/rocker without limitation (and I have finally been able to leave the house with all 3 kiddos)! Additionally, she made the transition to exclusive breastfeeding (a MAJOR victory I seriously doubted would ever come to fruition - more on that later)!!! Not to mention, she began smiling socially AND has discovered how to find and suck on her hands, which are both important neurological developmental milestones that wonderfully demonstrate that thus far she is developmentally on track (with the exception of having been born with a large/heavy head which of course was anticipated). I won't always share so many updates about Rosalie's progress on the blog (family and friends: that is what her Caring Bridge website is for, so let me know if you need the link!), but this has been a fantastic month with much to note and celebrate. In many ways Rosalie has been absolutely thriving this past month back at home. :)

Hooray!

I have eventual plans to write up a sort of FAQ about hydrocephalus & our little hydro warrior, but today I will answer one question - something a good friend happened to ask me this morning (and several others have asked as well).

Q: Ideally, how long will this shunt work for Rosalie?

A: Ideally, forever! Unfortunately, that is unlikely to happen because shunts are notorious for malfunctioning, needing to be either revised or replaced.

It is not unheard of for individuals born with hydrocephalus to undergo a number of brain surgeries in the double (sometimes triple) digits...which sounds extreme, but considering Rosalie already had 3 brain surgeries at 2 months old I can see how it isn't beyond the realm of possibility for her.

Still, we hope and pray that there will be no shunt infection this time around & that this shunt will give us the desired results Rosalie needs to have her hydrocephalus properly and safely managed. Please join us in praying these intentions! 

Rosalie's next MRI is in a couple weeks, which will reveal how this shunt is working for her (it has a different drainage speed than her first since the first one wasn't giving us the desired results regardless of the discovered infection). Please pray for positive results!

Happy shuntiversary, Rosalie! We hope & pray we get to celebrate many more!


"How cool that the same God who created mountains and oceans and galaxies looked at you and thought the world needed one of you, too."
-Anonymous

Friday, December 22, 2017

How Rosalie Got Her Name

+JMJ+

Recently my oldest child, Gabriel (age 4), was admiring and asking about his sister's Christmas stocking - which my talented older sister made and just mailed to us. That led to a nice little conversation about everyone's stockings and how they all have our first initials and a special crocheted image (an angel, a snowflake, a Christmas tree, etc.). Then, probably as an afterthought about initials and names, Gabriel looked at me and asked, "Mommy, does Rosalie have a Saint?"

Why, yes! Yes, she does! Which brings me to the topic at hand: how Rosalie got her name.

When we first shared Rosalie's name we got a lot of questions from various Catholic family members and friends about which patron Saint we were going for (St. Rose of Lima? St. Elizabeth of Hungary? St. Thérèse of Lisieux - because of her association with roses and nickname as The Little Flower?).

In truth, she is named after Mary, the mother of God. I see many of you virtually scratching your heads at that one, so bear with me!

First, let me back up and say that Michael and I always had a hard time agreeing upon names for girls (so we lucked out and had two boys first, ha). But, long ago we agreed that we liked the idea of choosing a Marian name without choosing the obvious "Mary." Early on in our married lives we agreed that "Maria" could be a good option. But, a few years ago when I shared that I loved the name "Maria Rose" it got shot down immediately when my husband responded with, "You mean like my co-worker, Maria Rose? No."

So, we were back to square one but by that time my paternal grandmother had passed away; her middle name was Rose and I loved the idea of somehow incorporating it into a baby name.

And there we remained, stuck without any further ideas for a long time (but this was amidst birthing another boy, so it was okay that we hadn't agreed on any girl names at that point).

Then, when Peter (our second born) was a baby we watched a show with a bit character named Rosalie. Rosalie! A beautiful, French variation of the family name "Rose" I had hoped to someday incorporate. I had never wanted to use Rose as a first name, but I loved the idea of Rosalie and Michael agreed. So, we tabled that conversation until it would someday become relevant.

When we discovered we were finally having a girl I asked Michael if he still liked the name. Despite the fact that he had completely forgotten ever liking the name in the first place, he quickly admitted he did like it now that I had brought it up. ;)

So, we agreed to pray about it. But there were two specific things I needed to figure out before I could fully settle on the name: 1) how I could tie it to Mary (a Marian name was very important to me) and 2) what liturgical feast day could be used as Rosalie's "name day" (in our family we celebrate our kids on 3 days: their birthdays, their baptismal days, and their "name" days - which are the liturgical feast days on which we celebrate the saints they are all named after).

The first part was easy. I knew that roses are often used to symbolize Mary, so after reading up on why exactly that is part of our understanding and tradition I felt a solid connection between the name Rosalie and the Blessed Mother. The second part was a bit more difficult, though.

There are several Marian feast days that we celebrate in the Catholic Church, all with a separate title. However, I wanted our daughter to have a name day that expressed the sentiment that Mary is considered a rose - the queen of the heavenly garden. That, or I reasoned that we could celebrate her name day on the feast of St. Rose of Lima (or someone similar that has to do with roses), but that didn't sit right with me - because if we weren't choosing Rosalie based on St. Rose then I didn't want that to be her feast day. So we kept praying for some time.

Then, one day in July I found myself alone in an exam room, waiting for a routine perinatology appointment. We had discovered our daughter's brain condition back in May and I had really wanted to pray the rosary ever since - but for some reason I had some block up that kept me from actually doing it...for days, weeks, and almost months. But, that morning as I waited in the quiet of that office I suddenly felt strongly compelled to pray the rosary. I knew in my heart that it was long overdue and the time was now. My boys were at home being watched by a friend and I would be waiting awhile longer for the appointment, so I had no distractions and nothing but time. No excuses.

Before I prayed the rosary, however, I was reading on my phone and stumbled upon something amazing: that very date (July 13th) was a Marian feast day celebrating the Blessed Mother under the title/nickname "Our Lady of the Mystical Rose."

There are so many Marian feast days, both well-known and obscure, that I previously had NO idea that specific Marian title even existed!!!

I immediately felt that I had received a divine answer to everything. We could name our daughter Rosalie with our holy mother Mary as her namesake AND she could have her own name day to celebrate - one that rightly expressed that Rosalie is named after Mary, the Mystical Rose in God's heavenly garden!

At that point I eagerly prayed the rosary, with the specific intention of asking Mary to make it clear to me whether or not I had found our daughter's name. The more I prayed, the more I felt myself being filled - even overflowing - with excitement, joy, peace, and an overwhelming sense that Mary had given me a big, resounding YES to the name Rosalie.

If you've ever been praying about a specific intention and felt an overwhelming sense that the Lord was speaking to you, then you'll understand how powerful and crucial that moment was for me in discerning our daughter's name.


So, on July 13, 2017 I became convinced that our daughter's name is Rosalie, but of course I encouraged Michael to keep praying about it. It was only a matter of time before he confirmed everything on his end.

Meanwhile, we had been searching hard for middle names and for the longest time only had one viable option. We loved it initially, but the more we prayed the less right the middle name felt. Then, one day I revisited our baby name lists (for the hundredth time) and there it was - Elisabeth. We had listed it as a possible first name we liked, but had somehow never considered it as a middle name. Literally as soon as I saw it printed on that list and combined it with Rosalie I felt like I had found THE right name. I promptly texted Michael to let him know I had thought of another name combination and asked if he had a preference between Rosalie _____ (the first middle name we picked) or Rosalie Elisabeth; he quickly responded by saying he liked and preferred Rosalie Elisabeth.

And the rest is history!

Of course we take into careful consideration the meaning of names as well. 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." 

Just beautiful.

Often people ask why we chose Elisabeth with an "s" and all I can say is...it just looks and feels right to us. We never even considered Elizabeth with a "z" - and I think the name Elisabeth looks so beautiful with the name Rosalie because of the aesthetic of each name having an "s." Additionally, when I look at the etymology of names I look at the language of origin. Lo and behold, "Elisabeth" is considered the Hebrew version, being derived from Elisheba - unlike "Elizabeth" which is Greek. Over the years I've realized that we have a subtle preference for Hebrew names, considering our sons both have at least one Hebrew name each - which is another reason Elisabeth probably felt right to us.

We never officially decided to use Elisabeth because of a particular saint, but we did it knowing we had some options. In my mind it always makes me think of Elizabeth from the New Testament - Mary's cousin and the mother of St. John the Baptist. However, a part of me likens it to St. Elizabeth of Hungary, who experienced a miracle of roses in her ministry to the poor. Either one would be a wonderful, saintly role model and I think Rosalie can decide for herself if she feels a connection to one above another as she grows.

And there you have it - the detailed explanation of how we came to have a Rosalie Elisabeth in our family. If you're curious to read about her brothers' names make sure you check out these posts from the archives:


"It's been an ugly day," she said. 
"Tell me something beautiful?"
And he said her name.
-Anonymous

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.