Roller Coaster

Some of my favorite moments are when one of my babies grab onto my finger and won't let go.  In those moments I feel I am their protector and comforter.

Yesterday I commented about the NICU journey and about how many people refer to it as a roller coaster.  I was hoping that our 7th week would become a norm for us, because it went so well after 6 weeks of struggle.  But today we realized where that metaphor and the "2 steps forward, 1 step back" saying comes from.

I spent much of the morning in awe of the way God has provided the past 2 months.  I am not eloquent enough to describe the love we have felt.  Every time someone reaches out and says they have been following our story and praying for us my heart fills with gratitude.   We heard that a few times this morning at church, from people whose kid's we've had in our preschool classes and people who were strangers yesterday.

Honestly, some of this has been overwhelming.  I was not raised with religion but instead a doctrine of self-help.  Unfortunately it was reinforced on many occasions when I did decide to rely on someone else.  I share this because as grateful as I am, I am also a little uncomfortable.  As a Christian, I have felt the joys of truly loving others, but am still learning to accept God's love and grace.  So please know that I value you every second you think about my family!  Don't be a stranger, let us know you are coming along side of us!

So after a perfect morning at church (amazing praise & worship, incredible lesson, and the friends I already referred to), we went to the hospital to make rounds.  We squeezed in to our bed spots just in time to be the final rounds of the day.  The doctor decided to lower both CPAP pressures, but only by 1 (baby steps).  He also decided to move Grayson into an open air crib (as soon as one can be located so he hasn't transitioned yet).  We discussed Scarlett's EKG and learned that they weren't any clearer on what was happening,  They were able to rule out a few things that it was not, but the only change that was made was to discontinue her caffeine which was being given at a dose of 10 mg/kilo of her weight to help her brain remember to breathe.  Our game plan was to hope it didn't happen again

But it did.

Trish was at the hospital expecting to hold Scarlett around 6pm, but when she came out of the pump room and rounded the corner, there were about 10 people surrounding Scarlett's bed.  She was in the middle of a tachycardia episode.  Her heart was racing around 220 bpm (baseline is about 155) and the team was trying to stimulate her vagus nerve which can slow the electrical impulses that control your heart rate.  They were trying things like sticking their finger down her throat to gag her, and putting ice in a glove over her eyes.  They were bringing her heart rate back down, but she would go right back up.  They did another EKG.  After speaking with the cardiologists, the doctor decided they would treat her for Superventricular Tachycardia (SVT).  Her EKG results didn't seem to show SVT but her behavior did, so they will treat her with propranolol, a beta blocker.

Another possible cause is that her electrolytes are out of whack due to her lasix treatment.  Her potassium, sodium, and Vitamin D levels were all elevated.  She was taking supplements for potassium and sodium to balance what she lost in her lasix trial.  The vitamin D escalation could also be a side effect of lasix.

When I left, we were going to hold off on giving her more supplements until after rounds tomorrow.  They are also skipping her 9am dose of lasix so the doctor can decide if they want to try a different diuretic.  I believe I am going to ask to take a break from diuretics in general until we can get all of her nutrient levels back in order.

So tonight I will ask for prayers for her and the medical team, that we can identify the issue and treat it quickly.  If I can be selfish enough to ask, please also pray for Trish and I.  This event has been incredibly taxing emotionally and Christmas will probably not help that for either of us.  I haven't been able to get in the Christmas spirit despite it being my favorite time of year.  Typically by now we have lots of decorations put up, dozens of deserts made, and have been blasting music.  I am not sure why, but I can't even bring myself to listen to 104.9 this year.  Our Christmas CDs are still packed up (how long will this post stay up before someone reads it asks what a CD is???)

Grayson 

Scarlett