As of today, she has been waiting for her new heart for 9 weeks.
WOW! It is unbelievable that we have been waiting 9 weeks. It sometimes feels like 9 months and then other times, like 9 days.
According to the heart transplant information from SLCH, the average waiting time is 6 to 16 weeks. Well, we have hit the "average" and we are sure ready whenever this miracle arrives.
Ruthie is doing wonderfully though. She is all smiles. She LOVES physical therapy! She loves playing. She loves trying to laugh. She loves watching TV (especially Veggie Tales). She is starting to move things from one hand to another. She also is becoming every bit of a spoiled baby. She knows how to get attention and since her voice is back now, she will demand that attention if she doesn't find things around her to entertain herself. It has become rather funny. She will fuss and cry and then someone will walk in the room and talk to her and WHAM! she is over it and all smiles. I know we will have to work on her "need for attention" once she is home with her new heart, but as for now, whatever makes her happy, makes us happy. I also think that the staff at SLCH, really doesn't mind coming to her rescue when she needs a friend. She makes them earn their money some days though.
This past week has been rather crazy. Not in terms of Ruthie, but with everything else going on. Easter weekend, moving from 7 West (CICU annex) back to the heart of the CICU, planning a June wedding that is fast approaching. Oh and of course, Josh and I have started a low carb- no carb diet to add on top of it all.
WHOA! I can't believe it's Friday already! It's crazy how quickly it all flies by!
Speaking of Easter...
She slept through all the pictures of her as an Easter Bunny........
I just couldn't resist.
And then a big view of her baskets and bunnies and her bed.....
I do have more pictures of her in her Easter outfit. It didn't last very long, but she did look cute. Josh, unfortunately has the camera with him so I will have to post them later.
Please keep praying for Ruthie. She is doing REALLY REALLY well despite the fact that her very sick heart is not going to mend itself. She is such a beaming light of joy and because of her, I am able to smile and know that whatever the outcome, we will be okay. She has given me so much love and inspiration. I love her so stinking much that it hurts sometimes.
Please pray for Ben, Lorenzo, Cameron, Riley, Derrick, Maggie, Jacob, Tucker, Grace and Adam. These very special heart babies and their momma's have been so strong and such a influence on our lives. Keep them close in your heart. Please also pray for the heart angels who have received their wings. Pray that they can guide their parents to peace and that they will watch over our heart babies on earth.
God has been there every step of the way. We know that He will continue to strengthen us and guide us. He will lead a shoulder to cry on and a hand to hold. His will be done.
AMEN!
I LOVE YOU SO MUCH RUTHIE!!
STAY STRONG and know that we will be here with you today and forever!
Love,
Laura
Ruthie is so precious in her bunny ears!!
ReplyDeleteI can't believe she has been waiting for her new heart for nine weeks! Wow! She's such a strong little girl, and there isn't a day that goes by that she's not in our prayers. You, Laura, are also so, so strong. Your faith is inspirational and you and Josh are always in our prayers too. I hope you continue to feel God's presence in your lives as he unveils his plan for Ruthie...I'm sure it's an incredible one!
Good luck with the wedding planning! So exciting!! You know, you could share a few details! :) Good luck with the low carb diet too...that's no fun! :)
Lots of big heart hugs and prayers,
Shannon
Thank you for adding adam to your prayer list. She looks to cute dressed up as the easter bunny. lol. I am still praying for Ruthie and your family.
ReplyDeleteRuthie,
ReplyDeleteWe haven't really met yet but my son, Ben, and I are staying a few doors down. I wanted to tell you how much your Mom has been an inspiration to us. All you have to do is say your name and all the nurses gush about how special a person Laura is. Your Mom's heart is so big and she has been praying for us and all the other kids in the unit. We think about you all the time and have been praying that God considers your families requests as well.
I know at such a young age you don't have much of a point of reference but I want you to know you are loved more than some people will ever know. You have gotten and will continue to get more prayers than God has time to go thru.
We have learned in the CICU that God has a plan for all of us. Just like Ben, I know you and God are walking in lock step and are carrying out that plan to a T. You are a miracle and a blessing.
Dear Lord, please grant Ruthie the strength to continue the good fight. Please guide the medical staff as they make decisions to keep Ruthie with us. Please grant her Mom and Dad peace in knowing that Ruthie can feel not only their loving arms embracing her but Yours as well. Lastly, please let Ruthie know that no matter how many times she shows her Mom her chest scares, it doesn't mean she can have a pony.
Hang in there guys and we will continue to pray for you!
Love,
Dave, Barbara, Jack, Hannah, Katelyn and Ben Hughes
My heart trully goes out to you I will continue to pray for your beautiful little girl Ruthie. It seems Ruthie's journey is very similiar to my son Kaiden's, he was born September 26th 2009 with HLHS and a disfunctional right ventrical he had 3 open heart surgeries {Norwood,Sano,Glenn) on 03/02 he was air vacced to the hospital after he stopped breathing at home, his poor little heart was giving out and he was evaluated and finally put on the transplant list. On April 15th we were blessed with a beautiful new heart.
ReplyDeleteI will keep Ruthie in our family's prayers and I know that God has a perfect beautiful heart picked out for her as well.
God Bless your family and sweet little Ruthie.
Marissa
kaidensmama0926@yahoo.com