Where is My Mind?

March 27, 2015

Where is my Mind these days?  I honestly couldn’t tell you.  Sometimes it’s hanging in there pretty well and other times….well you can imagine.  I remembered this song, and there are two versions of it: the Pixies and Sunday Girl.  The first is more conducive to say screaming your head off and hacking at a wall of jungle & the second is quite beautiful.  

I found the Pixies version edited with Fight Club images and it reminds me of Tyler and myself in college when we were obsessed with that movie. Okay… who am I kidding #1 is Tyler’s version.  Life seemed so raw and emotional back then, almost fifteen years ago.  Since we’ve grown together, it seems like we did in fact settle down and become more tamed, responsible and reliant on routines.  This experience has changed us forever, and perhaps thrown us back into the most raw emotion we’ve ever yet experienced of love and anger.  We don’t have “the luxury” of indulging in our darkest emotions the way we might’ve back in those days because there is so much more that we have now.  We have two of the happiest and most uplifting children that we want to love and protect and we are aware of the love and support that we feel from our family and friends.

#1: for Tyler (Fight Club ferocity) – best played LOUD! https://www.youtube.com/embed/ufERJEdcfAY?autoplay=1

#2: for Me (I never heard this version until the other day when it played on my episode of the Good Wife)

https://www.youtube.com/embed/m–lZP1c28g?autoplay=1

“Where is My Mind”
Oh – stop
With your feet on the air and your head on the ground
Try this trick and spin it, yeah
Your head will collapse
But there’s nothing in it
And you’ll ask yourself
Where is my mind? [3x]
Way out in the water
See it swimmin’
I was swimmin’ in the Caribbean
Animals were hiding behind the rocks
Except the little fish
But they told me, he swears
Tryin’ to talk to me, to me, to me.
Where is my mind? [3x]
Way out in the water
See it swimmin’
With your feet on the air and your head on the ground
Try this trick and spin it, yeah
Your head will collapse
If there’s nothing in it
And you’ll ask yourself
Where is my mind? [3x]
Way out in the water
See it swimmin’
Oh
With your feet on the air and your head on the ground
Oh
Try this trick and spin it, oh oh
 

 

Living with Grace

Living with Grace

March 6, 2015

My dear friends,

I truly do not even know how to say these words, but as you might know Tyler and I and our families are amidst the darkest days we have encountered in our lives.  After a routine doctor visit almost two weeks ago, we were informed of our baby girl’s dangerously high heart rate.  I was sent to the hospital immediately (where I stayed for almost two weeks).  The condition of our baby’s heart was rare (>1%), but considered treatable with drugs.  I pushed myself to the limits physically taking cocktails of cardiac drugs that are designed to slow the heart rate (both baby’s and mine).  After 9 grueling days with an expansive expert medical team, we finally got her heart rate under control and converted to a normal range; and what was expected next was that an almost immediate improvement would be seen in the strength of her heart and ability to pump out the accumulated back up of fluids.      Unfortunately the weakened state of her heart did not improve and even worsened over the next 24-48 hours, leading the doctor to the conclusion that it was actually her weak heart that caused the SVT/ arrhythmia.    This is an even more serious and truly rare condition, cardiomyopathy  that cannot be treated In an unborn baby.  We were told that our baby girl will not survive under any conditions.  She may live another few days, weeks, perhaps even months, but would not survive through the pregnancy or outside of the womb.  If a miracle occurred, she would live to her birthday only to endure the most invasive of medical procedures to attempt to sustain her life (heart transplant, breathing tubes, feeding tubes etc).   I am 24 weeks pregnant.  We have no choice, but to wait day by day as her heart continues to beat until one day when it doesn’t, at which time We will return to the hospital to deliver her.

 

We are of course sick, devastated and feel completely broken.  We are struggling to digest this reality and attempting to live our lives under the heaviness we feel in our hearts.  It’s a minute by minute, hour by hour, day by day situation.  Our families have been tremendously supportive, and each time we share our sad news with a close friend- we in someway feel human and connected for a brief moment.  Tyler and I are leaning on each other in a way that I never even knew we were capable of, and we find some strength to carry on together as we look to our happy, healthy children.  We treasure these little joys even more than we could have ever have imagined, and know that they are such a true blessing to us.

 

We thank you for keeping us in your thoughts and prayers during these dark, dark days.

 

Meredith

 

Day 10

Lets hope for another good morning!  I am looking forward to today’s ultrasound and echocardiogram and hoping that we see some resolution today!  Back at home, the circus has come to town.  The kids’ preschool has a parade this morning where they dress up like circus characters, and I hate to miss stuff like this!  Life goes on, as I have been trying to mastermind some of the details of logistics at home, but realizing I have to let go a little bit.  Our family and Tyler have stepped it up to an amazing level carrying out the day to day, and the kids have hardly skipped a beat.  I have had visits from each of them two times and they are just the sweetest and most energetic little bundles.  It kills me to be away this long!

During the morning’s ultrasound, the baby’s heart began to convert.  the first reading was still high; in the 180s, but the second and third were in the normal range 140 and 144.  I wanted to be excited as I shared the news to my husband who was on the way to the hospital after dropping the kids at school, but we also both knew that we were not out of the woods yet.  Word spread among our families, and everyone was so excited, but we had to tame celebratory sentiment with the truth that we had some persistent complications that needed to improve almost immediately with this change of heart rate to ensure that things would be okay.  Even a total recovery, was still a big risk as I would continue to take heavy cardiac medications throughout the rest of the pregnancy and the baby would be a pediatric cardiac patient and at possible risk for an early term delivery.  On the bright side, there was a good chance that all would be cleared up, but the next 24 hours would be a nail biter as we waited….and waited for confirmation that improvements had been made.

Where are the Snellings & what is going on?

I want thank you all for the well wishes we’ve gotten, and answer the messages asking if we’re ok, what’s going on, and if there’s anything you can do.  Basically I have been in the hospital 10 days now and will remain here hopefully only a little longer, but we don’t have all the answers yet.

Feb.23, 2015

I went about a normal morning taking the kids to preschool a quick trip to Target and a routine dr checkup/ultrasound that had a not- so routine ending.  I was informed that my 22 week old baby girl had a heart rate that was twice as fast as it should be, called an SVT supra ventricular tachycardia and it needed immediate care.  It is quite rare, occurring less than 1% of the time.  On to the hospital I was sent (not even time to take the frozen food in my car home).  Over the next few hours, I met my medical team: a high risk pregnancy specialist also called the fetal maternal specialist, pediatric cardiologist, adult cardiologist, new OB from my practice and at least ten or more nurses.  It’s been a fast day, but a slow process.  I will likely be here for a little while.  Did I mention that we had one foot out the door for a trip to Mexico? I guess we will be taking it easy, not pool side but at Northside hospital for a little stay instead.  

Day 2… Of our journey
I would imagine that 99% of moms of tiny babies who have serious medical conditions wish they could change places in a heartbeat…that every needle stick was into their arm instead of their baby’s.  I would have to say that in that sense, I am the lucky one because I can keep my baby safe and shielded and take away any pain she would feel.   For that I am grateful.  Also feel that we are in good hands with our all- star team of pediatric cardiologist & fetal specialist, adult cardio, fetal maternal perinatologist  and OB team.
Day 3:
Today is a day that we hope things
Start to happen.  We’ve taken the appropriate first steps in treatment, and so do feel confident with our medical team’s chosen path.   I felt sick a lot of the day due to the increase of medicine levels, but that is expected.  I would like to stay positive and trust that things will go as they should.
I have just started to reach out to friends and let them know where I am & what’s going on.  It’s very nice to have the help and support of family and friends.
Day 4…of my captivity
 The night was long and I woke up with more questions and feelings of worry and hopelessness.  It’s hard to be here and wait for things to happen and try not to let my mind wander to the what if they don’t area.  I feel alone and sad.  There was a bit of snow and sleet yesterday, and I feel so out of touch with the closed down city outside my window.  I am grateful that the kids are taken care of, so I really only have to focus on this- but I guess I need distractions too until I know that we will have a positive outcome.
Day 6: freedom! Today I asked and the doctor has released me from 24/7 monitoring and I can now spend just a few hours a day strapped in bed on the fetal heart rate monitor, as opposed to all of them which makes a big difference!  I was beginning to have a few secondary issues caused by my lack of motility and placement of the monitors.  This will give me a little break and has been a huge morale booster.  Avery came for a visit & Tyler is my spend the night partner tonight, which also lifts my spirits!
Day 7- visitors!  Lots of nice faces to see, and it was nice to be up and about as well.
Day 8-
I ate a banana out of boredom.
Well, the morning was very busy actually.  All well within the usual morning hustle bustle of the hospital.  Before getting out of bed in the morning I had blood drawn, medications dispensed 1.5 hours fetal heart rate monitoring, fetal echocardiogram, visits from 3 doctors an ultrasound and various nursing duties.  It was a lot of information, but nothing concrete.  It’s still a game of wait, watch and hope for improvement of baby’s heart function and condition.  Nothing is moving backwards nor getting worse, but it is a little troubling that it also is not improving in some key ways.
  Later I had a friend visit which was nice to take my mind off of things for a bit and a couple more doctor visits.
The banana eating for entertainment came later…there’s only so much time you can stare at your phone and try not to find the most obscure medical information out there to pore over.
Day 9:
I started this blog!  I have gotten behind in conveying this information to the outside world.  I started to break down last night and really miss my kids and the normal routines at home.  We have been in a surreal experience for the past 9 days, and it started to hit like a ton of bricks.
  But this morning, I was awoken for my 5 am  blood draw from a deep slumber and my medicine levels  of digoxin have reached a pretty good level 1.5 (target is 1-2).  It is apparently very difficult to get this drug into your system, but it builds up over time.  It is compounded by the fact that I don’t need cardiac drugs, so my body flushes it out, and our goal is to load me up to almost toxic levels so that it will pass through the placenta to the baby, who is the real patient.   It sounds a little dangerous, which is why I am now under the care of a cardiologist and strictly monitored for any signs that my heart can’t tolerate these levels of drugs.  The good news is that I am healthy and tolerating it well.  The side effects are nausea, sleepiness, blurred vision and a very slow heart rate.  I can live with that, if it means it is working- but until this morning we had only seen minor signs of improvement.  We knew it would take some time.  When we arrived, baby’s heart rate was running in the 240s&up.  It gradually came down a littleover the first week and was running in the high range closer to normal  (120-180).  But there were other factors to watch.  It’s they rhythmic pattern of the heart and electrical impulse inside the heart that was not running a regular circuit.  We’ve been waiting for a “conversion” to the normal rhythm.