Pictures

Before surgery!

MUSC has been absolutely wonderful! All of her nurses have been so kind and so knowledgable.  Her heart pillow has a purpose - to help ease the pain when she is coughing.  Last night her sweet nurse, Stephanie, wrote a note on the pillow to Leiney Grace.

Post Op Day 1
Today was a good day.  Medically she is doing very well.  She slept most of the day and has not wanted to drink anything since her earlier vomitting episode.  Hoping and praying that tomorrow she will be more awake and more eager to drink and eat -  both being a part of the ticket home!

Please pray for a baby girl named Brinley.  She is 5 days old and had surgery today on her heart which lasted 11 hours.  It did not go as well as they had hoped.  She is a very sick little baby and is just a few beds down from Leiney Grace.  To make this difficult situation even worse, Brinley's dad is scheduled to be deployed Friday to a training area in the US and then to Kuwait.  Please pray that the US military - not sure of the branch - would show some compassion in this terribly sad situation!

Post-Op Day 1

David and I left Leiney Grace last night about 10:30 and stayed at the Ronald Mcdonald House.  What a blessing this house is - lodging and food for a very minimal charge and is within walking distance.  Leiney Grace had a good night other than battling some persistant nausea and vomitting in the wee hours.  Zofran proved to be of little help so phenergan was given which has made her very drowsy this AM.  She has opened her eyes numerous times, asked for a drink, taken a few sips of water, and adamantly refused her oral tylenol although she did reluctantly accept the oxycodone. 

Dr. Bradley just came by and said she was doing well.  The chest tubes may come out tomorrow and if a room is available, she may be moved tomorrow to the step-down unit.  She has a little bit of fluid on the right lung which Dr. Bradley thinks will take care of itself.  We are encouraging her to cough - which hurts- and use the "pickle" - a pediatric version of an incentive spirometer. 

The best news - we got a little smile!  I was not expecting that so soon, but oh, how thankful I am for that!  Again, thank you for your prayers and concern.  Thank you for the many text messages and phone calls.  Thank you to Aunt Lulu and Sheri for taking care of our other children this week and to Mom and Frank and our friends who are helping with carpools all week!  What a blessing you are to our family~ it does indeed take a village - a village filled with close family and good friends!

Leiney Grace is out of surgery!

Surgery ended about 3 15 and we just met with Dr. Bradley.  He said everything went as expected other than the little detour at the end.  The bleeding was at the location of the wire placed at her sternum. He said she had several areas there bleeding, and he stopped it.  We hope to be able to see her around 4 30.  Thank you all for praying.  The next 24 to 48 hours are critical, of course.  One big hurdle is to get her off the ventilator and breathing on her own again.  We are most thankful to God for placing this precious little girl in our lives and seeing her through this much needed surgery today.   

1:30 update and complication

We received an update at 1:30 that Leiney Grace would be moved to the PCICU in 15 to 20 minutes.  We were waiting on Dr. Bradley to come speak to us after he went with Leiney Grace to the unit.  At 2PM we still had not heard anything and shortky after, Dr. Bradley's nurse practitioner and physician's Asst. walked in - I knew that wasn't good.  They explained that it would be a while before Leiney Grace was in the unit as Dr. Bradley saw some blood in her chest tube.  He decided to open Leiney Grace back up and proceed to find the source of the bleeding.  UGH!  The thought of that makes me so sad.  But, Cathy and Jennifer siad, better to do this now that take her to the unit, watch the drainage tube, and then take her back to surgery later today.  We expect the next update at 3.  I was holding it all together til this "little bump in the road". Beeper going off now.

4th surgery update

At 12 10 we received another update stating that Leiney Grace is now off the bypass machine and is doing well. Surgery will last another hour to an hour and a half.  Good news indeed!

2nd and 3rd surgery updates

Received updates and 10 and 11 am stating that all is going well in the OR.  At 11, the update stated that "they are more than half way thru."  Sounds as though it may be over 4 hours as predicted.  We are holding it together in the PCICU waiting room with my mom and our pastor and ready to have this day behind us. 

1st surgery update

All has gone well this AM.  Leiney Grace  was all smiles this morning at 4 AM and very much at ease.  Even at the hospital, she was still smiling and very comfortable with all the new masked faces who came in to exam her and talk to us (they are using precautions due to her positive PPD test which I didn't realize til this AM - nothing was mentioned Friday at pre-op.  As one doctor stated, we will do as they tell us to now to get her to surgery on time and ask if this is really necessary later.)  She had a dose of purple "juice" aka versed and within 5 minutes she was very woozy.  Her anesthesia team was great and waited outside her room until she was beyond the pointing of caring if they took her from us. 
The 1st update came in at 9 AM.  Stated that they started on time-7:30- and that "Little Leiney Grace was very stable."  We will receive hourly updates til surgery is over.  Thank you for your prayers and concern for our sweet Leiney Grace as well as the rest of our family.

Ready or Not. . .

Leiney Grace's surgery is tomorrow.  We have called in the reserves to help with the children, carpooling for school, baseball and soccer practices, etc. Thanks to my cousin, Sheri, Aunt Lulu, and many friends who have offered to help in various ways! Amidst all of the preparations,  I insisted on a family picture today which I received only a few complaints and sighs over, but we did manage to get some ok pictures! 

Surgery is scheduled to begin at 7:30 AM tomorrow morning. I hope to update the blog periodically. Thank you for your prayers!

One-Word Wednesday

Firsts. . .

Change

"God challenges us to change the world.  And to accomplish this, He asks us to change it one life at a time."

Tim Tebow

We may have changed this little girl's life, but she has also changed ours in tremendous ways - she has brought us unspeakable joy; showed us what bravery and courage really look like; shared her heart with us despite many previous hurts; and allowed us to witness just how powerful and full of love and grace our God really is.  These last 5 weeks we have witnessed change in the most profound way. . . through the miracle of adoption.

Our precious Leiney Grace will experience more significant change in the coming weeks.  On March 19 she will undergo open-heart surgery to repair her congenital heart defect, Tetralogy of Fallot.   Although this change is absolutely necessary and will inevitably bring about fear, pain, sadness, and various other emotions for all of us, we look towards this day with great hope for a new beginning for our Leiney Grace - a healthy heart and a full life!