Go With Your Gut

I'm not an M.D. I'm not an R.N. I do have letters behind my name, not that they are written by it much anymore. I went to school for a long time and worked hard for "M.S. R.D./L.D." but they don't carry a lot of clout with the medical world. Sure, I was trained and learned a lot about medical nutrition therapy, but nothing could have prepared me for this ride of motherhood. Being a mom is the very hardest position I have ever held, but the most rewarding and humbling. We are constantly being told how to mother our children. You can't scroll through your newsfeed without coming across a parenting article shared with (hopefully) good intentions on how formula is bad or saying "no" will cause permanent emotional scarring. How about those tips from your friend on how she got her 6-week old to sleep through the night? OK, I am seriously confused by a baby who sleeps through the night- and a little jealous because my almost-15-month-old still wakes up at least once.

I'm slowly learning you can't compare your situation to another's. While sometimes I definitely need advice and tips from other moms, I'm learning to trust myself. Before I became a mom, I thought that "Mother's Intuition" stuff was completely bogus- a lie concocted by some moms to make them feel good about their decisions. Then, my life changed.

Remember in one of my very first posts I mentioned that Caroline was diagnosed with ventriculomegaly at our 18-week ultrasound? Well, all through the remainder of our pregnancy, her ventricles were measured and monitored but they could never offer a reason for them being so enlarged.  They said they would have to do an MRI once she was born. When she was 3 days old, she had her first MRI. Her ventricles were still very large but they said they wanted to keep monitoring them. Fast-forward to her cranial surgery last September. Ventricles were getting bigger but still they couldn't diagnose a cause, but also assured us it wasn't anything too concerning. As you can imagine, I was feeling a mix of emotions. Relief that the neurosurgery team didn't think the situation severe enough to intervene but also an underlying fear that maybe we were missing something. Now, at this point on our crazy ride we are supposed to be wearing the helmet. If you follow Caroline closely, you may have thought once or twice, "hey, I don't see her in that helmet much, what gives?" Well, this may sound crazy but I didn't feel convinced about the helmet. We tried it off and on for a few weeks but still something was nagging at me. Like I said, I'm not a doctor. I'm not a genius and I don't pretend to have answers…I just had a feeling. So, I prayed for guidance. That feeling did not dissipate. Then after asking for more testing, Caroline was diagnosed with ventriculomegaly and hydrocephalus.

Hydrocephalus: (from the Greek, hydro- "water" and cephale- "head") is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles of the brain.

At this point, the neurosurgeon still did not want to take action. Now, I'm not a whacko who wants something to be wrong with my child, but unfortunately, measurements don't lie. Caroline's ventriculomegaly and hydrocephalus were worsening which could lead to permanent brain damage and even death. This was the point we decided to go to Dallas for another opinion. The craniofacial surgeon confirmed my apprehension about the helmet. Placing a helmet on a child with hydrocephalus can actually cause brain damage. He and the neurosurgeon wanted a better look at her brain to determine the cause for the hydrocephalus. You may remember that Caroline had another MRI last month. At first, it seemed things were stable. Then we saw our new neurosurgeon this week. Unfortunately, her hydrocephalus has worsened- to the point that the excess fluid is actually causing her brain to deform. We don't yet know if this will result in permanent damage but time is of the essence. We will be going back to Dallas for surgery soon. The neurosurgeon will place what is called a Ventriculoperitoneal Shunt 
This type of shunt isn't the least invasive or most ideal, but unfortunately, Caroline's unique brain anatomy does not allow for the easiest way.

Don't think I'm patting myself on the back for getting another opinion or pushing for more tests. I believe this intuition is a gift from God. His still, small voice saying, "keep pushing, don't give up." Although we face many trials in this lifetime, He is ever so gracious to His wayward, learning mama sheep.

"He will feed His flock like a shepherd. He will carry the lambs in His arms, holding them close to His heart. He will gently lead the mother sheep with their young."
~Isaiah 40:11 

So, here's my piece of parenting advice….
Pray. Listen. Go with your gut, even when it seems really hard. Oftentimes, the hardest way is the best way.

Also, when you are feeling guilty about having your baby go through another surgery, a trip to the toy store helps a little.