As long as things continue in the right direction, Ruthie will graduate from the CICU this week:) YAY! Things are looking up for her, despite the situation she is in.
She has been extubated for two and a half weeks now and really holding her own. She is only on half a liter of oxygen through nasal cannulas. She is no longer on continuous IV pain meds. We have weened her down off of continuous IV fentanoyl to morphine orally every 4 hours and from continuous IV precedex to adavan every 8 hours. We are currently weening down her dex to get her off of it completely and onto another oral medication. Ruthie is also starting to gain weight. She is almost 3 pounds heavier than when she was admitted to Childrens (which puts her at 12.7 lbs)! She is really doing quite well.
If everything goes as planned and Ruthie does not have any new issues, then to 7 West we go!
WHAT A BIG STEP!
So right now we are just waiting and we don't need to wait in the CICU if she is not critical. That is so amazing to say and to hear. I love when they do "rounds" on Ruth. The "rounds" usually last for 2-3 minutes, on her "bad" days, and 30 seconds or less on her "Ruthie" good days. It is wonderful when they say all we are doing is waiting. But in the same breath, "waiting" is not so wonderful. It is hard to know that your daughter's heart is not going to get better on its own. Its hard to think about how long we may have to wait. Its even harder to imagine waiting with a critically ill baby.
We are so fortunate. We are so lucky. We are so blessed. Ruthie is such a trooper. She is so strong. She makes waiting on a heart seem easy and so non-important. She really helps us forget the seriousness of the matter when she just smiles and plays. She is a model of strength and endurance.
We are so thankful for Ruthie. She is a miracle to us. Her spirit shows God's true compassion and love. She is an inspiration to us. Thank you God for giving her to this world. Thank you for helping her endure her cross.
Thank you for putting us into the marvelous hands' of the SLCH staff, nurses, and doctors.
Thank you for our family and friends who makes this load easier to bear.
Thank you God for being there to give us hope and courage.
We turn our lives over to God and know that with Him we are able to get through anything.
Enjoy the pictures below.
Over the past 2 weeks, we have had some fun!
The first time in 5 weeks that I held Ruthie!! The day before extubation!
Dad's turn to hold her and make her smile!
Tube Free and Sleepy!
Getting to play!
Happy St. Patricks Day!
Playing with my St. Patricks's Day beads! I pretend I am Irish!
More pictures to follow, the card reader is fixed!!
Prayers for Ben, Jacob, Cameron, Lorenzo, Derrick, Audrey, Gabriella, Alexander, Maggie, and all the heart babies near and far. What you may lack in a heart, you make up for in strength, courage, endurance, peace, happiness, and love. You are Earthly angels. I pray for you and your families!
Heart hugs!
Laura
Little Miss Ruthie is getting so big! :) She is also real pretty. I think she looks like you more.lol I am still praying for her and your family. So happy to hear that she is off the vent.
ReplyDeleteshe is so adorable! love the photos you have taken! You have a great postive attitude and strength! from one heart mama to another, i can relate to this stressful time. each day is a new and better day!
ReplyDeletekelly manz
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