You know you're a "Heart Mom" when..

Record breaking extubation for Grace!  Grace was extubated last night around 11:30pm and she did great.  She did not even need to transition to bipap, cpap, or hi-flow nasal canulas, just to 2 liters on low-flow nasal canulas.  Prior to this surgery, the quickest that Grace has ever been extubated was three days after surgery, but this time she did it after one day and needed less respiratory support than normal.  Praise God!!!  Since being extubated she has been able to wean down to 1.5 liters of oxygen today.  In addition, Grace's right atrial and left atrial pressure lines were taken out today, which were both extremely high after the last surgery and a large part of the reason that Grace needed to go back to the operating room; therefore, the fact that these lines were able to be pulled already and the numbers were in the target range is a huge blessing.  Lastly, in the time that I have been with Grace in the ICU, a different child has coded almost everyday, sometimes twice in a day.  I asked the nurse if that is normal and she said that it goes in waves, but lately it has happened quite a bit.  She said they get a lot of kids here from around the world and they are coming to Boston Children's as their last hope, so the kids that are here are in pretty rough shape to begin with, so it is not surprising that it occurs so much.  Please pray that God protects Grace from riding the coding wave.  Please also pray for all of the children and their families that have come face to face with the abrupt threat of their child's mortality.  Thank you everyone!

It's me- First things first…  Praise the Lord for Divinely designing this little angel (all 48 chromosomes in her her designer genes :-) to be the toughest and most resilient person I know.  I can't believe all that she has endured in her 15 short months of life!  Now, let's play "you know that you're a heart Mom when…"

You know that you are a heart mom when...

1)  you see a picture like this and the first thing that you notice are her pink (precious) lips

2)  the first thing on your Christmas list is a stethoscope 

3)  one of your first instincts when wondering how your child's heart is doing is to press on their toes until the skin is white and then let go to see how quickly their capillaries refill (how many seconds it takes for the skin to return to normal color after pushing on them, it gives you an indication as to how well their heart is pushing blood throughout the body).  I so badly want to squeeze her toes…

*that's enough for now, I just couldn't help but chuckle when I think about the things that bring me joy these days :-).

The kids and I had a great and busy weekend (busy is good right now because it keeps us from missing David and Gracie too much).  We got to visit my Dad twice at "Andrew's Hospital" (that's what we call the hospital that my dad is currently at because we have spent so much time there this past year with Andrew).  One of the highlights of my weekend was seeing the joy and twinkle in my dad's eyes when the kids and I walked into his hospital room (the kids shared the same joy in seeing and snuggling their Papa in his hospital bed :-).  They are transferring my dad tonight or tomorrow morning to the Medical Center, where he will have a heart catheter to hopefully repair the blockage.

Will you please continue to pray for Grace's recovery to be seamless, for our hearts as the separation isn't getting any easier, my dad's heart, and the continued grieving of the loss of our spunky G'ma Vee Bee?  Thank you Village!!!  We continue to pray for and praise God for each of you!!!