Wednesday, July 19, 2017

10 More Weeks?!


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

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