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.

Put the Oxygen Mask on Yourself First...

You've seen the safety demonstration. The flight attendant gracefully places the oxygen mask on herself to show you what to do in case of an emergency. Her movements are so fluid and seamless. While I have flown several times, I have never been placed in the position of having to actually remember any of the safety demonstrations; however, I can imagine I would not be nearly as graceful. In fact, I would be doing well to not pass out from the excitement of it all. I'm not good in an emergency. Good thing I switched my major from nursing after my freshman year.

Anyway, the point of wearing the oxygen mask first is because you can't really be helpful if you aren't conscious. Pretty basic, right? Yet this is such a difficult concept. This time last year, we were in survival mode. We were going to ACH for surgeries every other week, sometimes every week. My only concern was keeping Caroline alive. We were all taking turns offering our oxygen masks. We were exhausted, burned out, and miserable- but she kept breathing. Testing, insulin, carbs, glucose sensors, those words did not hold space in my thoughts. I was managing my diabetes, but just barely. My endocrinologist, bless her soul, was worried but she always said, "I know you have a lot on your plate" or "It's hard to do everything right when you're spending so much time at the hospital with Caroline." At our visits every 3 months she would ask about Caroline. She would touch on my reports- yeah there were a few highs and lows but my average numbers were always really good so she didn't lecture. This last visit was different.

She asked about Caroline so I updated her on the latest. As a doctor, she likes to hear about surgeries and recovery but as a mom she likes to hear about her little quirks and games.
"Well, palate recovery is going well…still have a big cranial surgery in November…she can do 'The Itsy Bitsy Spider' which is really encouraging to me, I know she must be smart…" She nods politely and places a hand on my arm and says, "How are you doing? I mean, like, mentally, how are you doing?" I tell her it's getting better- some days are harder than others but overall, things are much easier now. We go over my reports and really the numbers look even better than I would have expected. She says, "OK, now it's time to start taking care of yourself again. Get back on track with your diet. Exercise." One of my dear friends and mentors told me a few months ago to put the oxygen mask on myself. Sometimes it seems incredibly selfish to leave Caroline with someone so I can go exercise. Sometimes it feels really selfish, when I have that shaky low, to gulp a box of juice before I get back on the mat to play with her. Diabetes complicates things. I really do want to just focus on taking care of my baby, but in order to be healthy enough to take care of her, I have to be a little selfish sometimes. So, here I am, bottle of water by my side, continuous glucose sensor in my stomach, and back to logging religiously on My Fitness Pal….apparently the App doesn't do anything unless I actually use it!

Learning How to Sail

Never Say Never.

Such a tiresome cliche, but that's the thing with those old sayings, they didn't become cliches without being true. Over the past year, our family has relearned this truth over and over. Yet, the past 2 weeks we have been hit upside the heads with the humble stick.

If you remember, we are in the process of starting therapy for Caroline. She has gone through all 4 therapy evaluations and now we wait on the therapists to complete their reports and then we will meet with our Early Intervention coordinator to choose how much and what type of therapy we want. Now, there's someone I never thought I would be dealing with- an Early Intervention specialist with DHS. When I was first contacted by the therapy center, I was informed we would have to go through DHS since Caroline is younger than 2 years old. "It's just protocol" she said. I was immediately uncomfortable with the idea. Though I told myself "I'm not an elitist" (though I discovered that yes, just call a spade a spade, I am a snob) I didn't feel we were "DHS material." I reasoned those services were for those less fortunate, bless their hearts. Then, I was educated. I met with the coordinator and learned about DHS and their services. Then, I met with each therapist. Though the coordinator had suggested applying for TEFRA- an extension of Medicaid for disabled children- I brushed it off. We had been hearing the TEFRA speech from ACH since before Caroline was even born. I said to myself, "well that's not Caroline, disabled...that's not our situation...we have private insurance."
Then, I met with the physical therapist. She played with Caroline and completed her evaluation and then asked me, "have y'all looked into TEFRA?" I said yes, which wasn't a lie, but that we had private insurance and had already met our in-network and out-of-network deductibles- a really twisted sort of brag now that I think about it. Anyway, she nodded and explained that our private insurance does not cover any type of therapy for "children with disabilities." That sort of knocked me over. We had been sitting on the floor with Caroline and I rocked forward and said, "not even with all of her diagnoses?" "No, sadly they will not pay. Now, if she were an adult and had a stroke or car accident and needed therapy, they would, but your insurance company does not pay for therapy for children." She went on to state that Caroline is "severely delayed" and would need more therapy than DHS would cover.  Later that evening, Josh and I were going over the numbers. There was no way we could afford therapy on our own. So, here we are doing what we said we would never do- pouring over the application for TEFRA. Medicaid for disabled children. I don't like it. I don't like the terminology or the connotation, but I am learning in order to make it on this crazy ride, you have to use what you are given.

Caroline may be "severely delayed" right now, but I have promised her that we will do everything we can to ensure she won't be for long. No matter what, Caroline won't be defined by a diagnosis or disability. She is our mighty girl and will be defined by her infectious laugh, tight hugs, and big kisses.

Sometimes it feels as if life is just tossing you back and forth like a little ship on the high sea. Have you ever been on a boat in a storm? It's scary and unpredictable. I'm all for boating but I want smooth-as-glass waters and sunshine. Being Caroline's mom has been a blessing because it is teaching me how to sail in any weather and put trust in the Captain who knows how to navigate the waves. Now, our family is in the middle of another storm. Josh's dad was recently diagnosed with advanced, Non-Hodgkins Lymphoma. The type he has, follicular, is treatable but not curable, yet. We have been reading and learning a lot in these past 2 weeks about sailing this particular ship. We have learned about bone marrow biopsies, PET scans, and chemotherapy. We don't like it. We hate it, but we know our Captain is good and He will provide the resources we need to sail this ship.

Life can change in a phone call. Never say never. Be kinder than necessary. Love each other hard.