Thursday, October 31, 2013

Praying for a miracle!

Overall, Grace is doing well today (Praise the Lord)...  the scary part is what the future holds!  I spoke with our local cardiologist tonight (remember she has been our biggest advocate) who has spent the day answering questions from EVERYONE at TCH "Why did they go to Boston?  Why didn't they just do a single ventricle?"  The simple answer to that is... "how many teenagers/young adults with Down's Syndrome do you know with a single ventricle?"  The answer is not many because the long term outcome is very poor!  God led us to Boston because it was our only hope.  It feels like the team at TCH has written Grace off as if she's a lost cause.  Boston seems to be more optimistic and is ready and willing to open a bed for her in the ICU tomorrow if needed (I think that they would go ahead and replace her mitral valve).  I love our local cardiologist, however, I got off of the phone with her feeling super discouraged because it seems like nobody in Texas (except her) believes that there is hope for our Gracie Doo.  They think that what Boston does is so rogue and they don't agree with the risk they take.  The truth is that Boston sees the toughest of cases, so Grace isn't really out of the norm for them; however, at TCH, Grace is the exception.  I tried to put on a happy face as we went out with friends trick or treating, although I know I did a terrible job of that; I tend to wear my heart on my sleeve, especially when it involves my babies.  I felt like I could barely breath and put one foot in front of the other until we ran into a sweet friend (that we hardly get to see, but we have both spent some time in the fire together), all she had to do was ask how I was doing and I broke down.  She then reminded me of the exact truth that I needed to hear at that moment...  "It is NOT over!  Our God is not a God of statistics!"

Happy Halloween to our little little angel!  I miss her scrunched up nose when she smiles and those almond shaped eyes so much that I feel it in my bones :-(

I don't know how long God will allow Grace to be on this earth, but until He calls her home we will pray for a miracle, trusting that He's not done with her yet!  Will you please join us in praying that Grace will have a phenomenal weekend and proves everyone at TCH wrong (even if He doesn't, we will praise Him anyway despite the fact that we will be so very broken)?

The short term plan is to watch her over the weekend, giving her some time to settle out.  On Monday, our local Cardiologist will be presenting Grace's case to the entire Cardiology team at 8:00 am CST (surgeon, cardiologists, etc) and at that point they are going to decide what they will or will not offer Grace at TCH.  At that point, there is a huge likelihood that we will be life flighted back to Boston if TCH doesn't have any other options for Grace.

Village, we have NEVER needed you more...  Will you please get on your knees before the Lord and ask that He heal Gracie's heart and lungs and proves every one at TCH wrong?

Here are our other two angels who know how to bless there Momma with their sweetness...
Tucker and Twinkie dressed up as a skunk and a squirrel (the same thing they are every year since new costumes for them just aren't in the budget :-) 

This picture does not do it justice at all, but God revealed a glimpse of His glory in the beautiful sky tonight!  It served as a sweet reminder of His presence...


5 comments:

The Keierleber Family said...

Crying hysterically. Praying nonstop as I have ever since we first heard of her ticker issues in utero.

If I can be a blessing to you in any way, PLEASE PLEASE PLEASE let me do that for you.

I can come to Houston to be with you. I can come to Boston to be with you. If you feel you could use some support from me in anyway, I will make it happen. I'm not kidding.

The Keierleber Family said...

oh and I am not happy with TCH.

I have hope that my beloved Boston is special for the both of us for a reason! I love their willingness to help y'all!

Becca said...

My name is Rebecca Armour Oliver and I was a friend of David's in High School. I just stumbled across your blog and am amazed by your families faith, courage, and hope. The Lord is truly smiling as you are enduring so faithfully through this difficult time. I assure you that you are being a light and strength to many. I wish I lived closer to you as I know I would love your family. Please know that our little family will be praying for you in Denver. My kiddos have great faith. Praying for a miracle for Grace. Please let us know if we can do anything for your family.

Charmoin said...

Kristi and David - I am on my knees with you. I'm so sorry for this fire you are in but I agree with your friend - this is NOT over. I love you and am praying. I am setting an alarm for Monday at 8 am to pray for the meeting at TCH! Praying for God's will concerning Boston and praying for healing for Gracie Doo!

Unknown said...

Our daughter was born with hypoplastic left vent, hypoplastic aorta, a complete AV canal defect, & DS. They gave her a 0% chance to survive. We had 1 cardiologist at TCH who believed & encouraged us. It was a roller coaster with numerous setbacks including having to remove her colon & her having to fight sepsis twice. We stood firmly on faith & believed in miracles. Her name is Nesya Raphaelle. Nesya means God's miracle & Raphaelle is God heals. She will be 7 on Nov. 6th. She is a blessing & joy each day. Throughout the first year I spoke healing scripture over her, people around the world prayed. I leaned on Mark 9:24 "I do believe, help me overcome my unbelief (doubt)."

We are lifting you up in prayer. We believe in miracles & the power of prayer. Keep leaning on God. Please let us know if you would like to contact us. You can read her story on Carepages. http://www.carepages.com/carepages/thejeffreys/updates/3458158
Or on youtube. http://www.youtube.com/watch?v=itQvqJFTerk

She is beautiful. Absolutely beautiful. Erik &
Chris Jeffreys