Shades of Gray

Hi Everyone,

I just wanted to start off by saying thank you again to all of you for your continued prayers, love and support as we delve deeper into this "Healing Hearts" journey! Austin and I feel so blessed to have so much support from all of our family, friends and church families (The Waters and Sunnyside Church.....to name a couple, I know there are countless others that I don't even know the names of that are praying for us and I thank you as well!)  Each day Madison gets better and our faith grows stronger, in thanks to all of your prayers and devotion :) 

I'll begin the M&M update by saying that we are "delving deeper" into our healing hearts journey because last week as we were smoothly sailing along the Berlin Heart road to recovery we noticed that Madi wasn't moving her left arm and leg much at all, just barely moving her fingers and toes.  Of course as any true parent would be, we were in denial telling ourselves that she was just weak from lying on that side for weeks and from having lines, wires and tubes coming out of every crevice.  Well, after getting a CT scan of her brain last Friday night one of our biggest fears was confirmed, starring us straight in the face: a dark gray shadow covering probably about one third of the right side of her brain, yes, a stroke is what we were seeing.  Normal brain tissue appears as a light gray but a "stroke" or infarct, as it is technically called come to find out, appears as a darker shade of gray.  I never thought that shades of gray could could mean so much; one shade, your body works perfect and another shade your body doesn't work so perfectly. Wondering what a mom thinks when she finds out her baby who has fought for her life for 17 months just had a stroke? Well this is what I thought:

What the heck? How did this happen?  After all this, now she has to deal with heart problems and brain problems?  This is so not fair to my Madi, so not fair!  I want to scream and yell at someone for causing this!!  Who caused this!!!   About an hour later...........  Oh but wait Tab, this is nobody's fault, there is no one to blame, no one to yell at, no yelling will make this better.  Now what do we do?  What's gonna happen next?  This is God's will right?  He got us this far, He won't let us down now.  There has to be a reason for all of this!  I wish I knew that reason?  But I have to be strong for Madi and pray for more strength and faith because she is going to need my help to get through this.  Put your game face on Tab, we have work to do!

Thats what went through my mind over and over for about the first day until I began to accept the fact that yes, Madi did have a stroke and no she wont have full use of the left side of her body when she wakes up! Now for the good news........the neurologists that spoke to us have said that babies brains are so resilient that most of the time they regain most of the function they lost because their brains just "rewire" so that they can regain function of their legs, arms etc.  So that's very encouraging news.  We wont really know the true extent of the damage until she wakes up and is off of her sedative medications but we have seen both the leg and arm move a couple times so we're holding on to that.  We do know that she will need a lot of physical therapy and occupational therapy to help that "rewiring" process but we were doing it three days a week beforehand so now we'll just add a few more days on to that!

Stroke is a major risk factor of the Berlin heart because the body's blood is going through a piece of rubber tubing instead of its own tissue so even though doctors do their best to keep the blood perfectly thinned out so strokes don't occur, they still do unfortunately, it's just the nature of the beast.  So, it's a set back we realize but its not our first and it won't be the last!  Not only that, but the Lord placed that clot in such a way that even though she'll wake up with a weak left side, she'll wake up knowing who her mommy and daddy are and that's all that matters to us :)  Amen!

Other than that she is doing really well and getting closer each day to coming off of the ventilator.  Today she did her first set of "breathing trials" where she breathes on her own for a few hours and then goes back to a higher support setting.  It's like training her for a marathon so when she extubates (hopefully later this week) she'll win that marathon.  This little girl is so strong she continues to amaze everyone around her,  including her doctors who say, "she's a fighter" and "she's such a trooper."  I grew up knowing that dynamite came in small packages, I just didn't know it was this small :)

Each day is a gift that we should value, its not about tomorrow or the next day but today.  I'm still working on this principle; it's hard to not think about tomorrow or the next day, or the day after that or the year after that, because after all, anyone who knows me knows that I have had my life planned out since about age 15 but for some reason it didn't go as I had planned!  What?  Who knew!  What I do know is God has taught me a lot in the past 17 months about how it doesn't help to think so far ahead because we have no clue of how things are supposed to go, all he wants us to do is to trust Him and know that all will be okay if we just give in and let Him take over!  And I'm just now starting to relinquish control to Him, why the heck did it take something like this for me to let go!  Who knows, but I'm beginning to think it's done me a lot of good, guess I'll let Him take over after all :)  Its just so amazing how things can change in the blink of an eye, you're going along easy peasy and everything changes.  One day we were headed up to Madi's room waiting for the elevator and there was a husband and wife with suitcases waiting as well, I asked "do you have a baby upstairs too"  the mom replied, "a big baby, a 14 year old boy."  This young boy had just gotten life flighted here from San Antonio and recently found out that he too will need a heart transplant.  Three weeks ago he was a normal 14 year old boy playing basketball and going about his life when his heart decided to fail him.  He possibly got a virus that has damaged his heart so badly it cannot recover.  This family is so devasted and cant believe how their lives have been turned upside down..  I hurt for them as I know that all the dreams and hopes you have for your child seem snatched away in an instant, but they aren't snatched, just put on hold momentarily :)  We can all be blind sided by this or that but the main thing is to remember that this is only temporary, all will get better soon.  The best time to see the stars is in the darkest of night!

Whew, sorry that ended up longer than I anticipated.  Guess that's what happens when you have the 8:00 to 2:00 am shift in the ICU.  That's the latest anyway!  Again, thank you for all your prayers and I ask that you would just keep sending them up because they are being heard each and every day! I hope this post finds you all well and enjoying the new year :)
Love Tabi