Lucy is doing so much better than we expected and we are so proud of everything she's overcome. We still need to stay on top of her pain meds and be gentle but overall she's doing pretty good.
- Posted using BlogPress from my iPhone
Lucy has had a rough day today. Eliza says she's been prodded and poked all day. On top of that, she decided she was too lazy to eat all of her bottle, too. So the feeding tube is back in.
She is opening her eyes more, but they look so sad. I'm hoping to cheer her up with some Backyardigans therapy. That's not quite working. Plan B involves oxycodone and some awesome dance moves. We'll see which one has the greatest effect.
We've officially moved out of the PICU and onto the floor. Compared to the PICU, this is deluxe! We have our own tv with DVD player, a BED for mom/dad/gammy to sleep in at nights (it's my turn tonight, so this is good timing!), and permission to eat and use cell phones. We still don't know how long we'll be here, but Lucy is definitely getting closer to being ready.
She had an echocardiogram today. They told Eliza the reason for her oxygen saturations being so much lower than expected. It does involve blood mixing somewhere (it wasn't clear to Eliza where), but it should resolve with time and probably a trip to the cath lab. But they won't take her back to the cath lab for a few more months.
So this isn't the end.
This has obviously been an extremely hard time for Eliza and I. But in spite of the difficulty, we have felt relief knowing that there are friends and family, and complete strangers, praying and fasting for Lucy and our little family. We appreciate it, and can feel and see the effects of those prayers.
We are so grateful to Pam (Eliza's mom) for practically moving out to Kansas City when the girls were born. She insists on being here for all the big stuff, and she's usually here for all the small stuff, too. And she still takes one of the night shifts whenever she's here (in fact, I just found out that she is going to sleep at the hospital tonight. It really is a coveted job now that we're in the Hilton)!
And with Gammy being in Missouri all the time, that means she's not in Utah with her hubby and other kiddies. We appreciate their Gammy sacrifice.
And last week would have been almost impossible without my parents here watching the kids and cleaning the house daily. Thank you!
Well, a combination of Backyardigans and oxycodone put Lucy to sleep. I guess the dance moves will have to wait until later...
I am grateful for prayer. I am grateful for people who care enough to take a moment and think of our daughter Lucy. This hard been a difficult year for us but we know we are very lucky. We have had so many prayers coming our way. Most of us don't get that through our trials. Most of the time we suffer in silence while the world around us is oblivious to our pain. I wish that everyone could feel the warm embrace that comes when so much love and focus is spent in prayer. I know that even at our loneliest, our Savior knows us and loves us and has walked in our shoes. He can compensate for those times when no one knows to pray.
I've found myself thinking a lot about trials this year and have come out with the testimony that they can always be a tool to bring us closer to our Heavenly Father.
A lot of people have said to me, "a least she won't remember this." It's true Lucy won't remember how hard this year was, but I know it will change her forever. I don't think Heavenly Father gives us these trials for kicks. They always prepare us for something bigger.
Sometimes we look at other people and think of how easy they have it. How if they knew how rough I had it, they couldn't possibly have anything to whine about. Or sometimes we see others and think, I could never do what they are doing. I know I have been guilty of both.
I believe we are all on a path in this life. We don't get a pass on hard stuff. We can't expect great blessings without some work on our part. I need. to stop comparing my trials with others. This is being drilled into me. It might take my whole life to really get it but I hope one day I can. I try to remember that only my Heavenly Father knows what I need. Sometimes we forget that what is hard for one may not be for another. When I had Jack I was so depressed and lonely. Looking at it now it seems so easy, but it wasn't. It was a really really difficult thing for me. We just don't know.
I heard that Lucy was mentioned in the sacrament meeting prayer in my old ward. The byu ward that my dad is bishop of also mentioned Lucy on Sunday. I know so many people prayed for her and fasted for her. Her name was taken to multiple temples. All of this has meant so much to us. I think a miracle is seeing the hand of God in our life and I've seen it today and countless times this year.
Today was so much better than I could have expected. We were bracing ourselves all morning. Her first surgery was the worst day of my life. Today was much better. We still have a few bumpy days ahead but it will be ok. They we able to do some crazy things with her heart. I'll try to post some pictures soon. She looks good. They'll start waking her up tomorrow and then the real work begins.
Thanks again everyone.