Saturday, November 25, 2017

That Newborn Smell


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....


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