Today was an utterly perfect day. I spent the majority of it in a rocking chair, my Lilly snuggled in my arms sleeping, and a book in hand.
Lilly had a chest x-ray and an echo this morning. Both came back good. She's on a 1/2 liter of oxygen. There's not too much congestion left in her chest. The doctor wants to keep her in PICU until we leave, or they get too full. She said we should be leaving "within a few days."
There is a different cardiologist making the rounds this week. He is familiar with Lilly's case. I asked him what he thought about Lilly having a pulmonary artery band and if that really did do the same thing as a VSD surgery would. He said he thought the band was best for Lilly right now and that she could have the VSD surgery later if needed. He launched into a lecture on blood flow and heart and lung function, much of it sadly over my head, but he did seem to be agreeing with all Lilly's regular cardiologist had said.
Now on a completely different topic. Facebook. The giant networking lack of privacy monster that has taken control over the masses of the world. :) My dear aunt has flown up from Florida to take care of my children at home. She has been wanting me to get on Facebook for a long time because of the Trisomy 18 support group on it. I have been refusing because I am concerned about privacy issues and the amount of time that I am told that it can suck out of one's day. (I know I'm ranting and in the minority here - so no need to leave me comments why I'm wrong.) Anyway, my aunt signed me up and I have been receiving an almost overwhelming number of emails from people wanting to "friend me" and sending me well wishes. I don't mean to be rude or to hurt anyone's feelings but I just can't respond to all these things. Nor do I know how involved I'll be. Basically, if you want to reach me, e-mail me or leave a comment here on the blog with your e-mail address. If I use the Facebook thing at all it will only be for looking at the Trisomy 18 support group or to occasionally ask a question. There are only so many hours of the day and I'm already short on them!
To jump topics again I wanted to share a verse about angels. As my regular readers know, we do not have traditional healthcare but are in a nationwide Christian medical needs sharing group. What a blessing that has been with Lilly because they have reimbursed us for all her many, many medical expenses except prescriptions. The majority of people that mail us checks, include a card with a scripture, prayer, or other well wishes. One from the other day had a scripture written for Lilly:
[Jesus talking] "See that you do not look down on one of these little ones. For I tell you that their angels in heaven always see the face of my Father in heaven." - Matthew 18:10
What a blessed reminder that Lilly has an angel in heaven. And that we ALL do.
I'm not too big on facebook, but it is a great way to keep in touch easily. In fact, look at the bottom of each post on your blog because you can click the little f and easily post a link to your blog with new updates. Once you have friended folks, you don't have to talk to them all the time, but when you link your updates, it becomes very easy for people to follow your blog. This way you don't have to type much more.
ReplyDeleteJust so you know...I had the same horrible first start with FB with the email mess. I finally discovered that I just went to the account section and clicked on account settings and then on notifications and unclicked all except for a couple.
ReplyDeleteYou should get your aunt to do it since she is so familiar with it. This way you can post if wanted and not get bothered and bombarded with unnecessary mess.
Or you can always just deactivate the account...
Sweet precious angels. God is so kind.
ReplyDeleteI have been praying for Lily and reading all your posts. You don't know me but I had a baby with trisomy 18. She was born on Dec 7, 2011, and went to be with Jesus on Feb 8, 2011. I pray you not have to experience the pain of losing a child. I know she is in heaven with Jesus. I wrote a story about my sweet Hannah Grace and I meant for it to go in our church newsletter. It's purpose was so the church family could understand a bit about Hannah and all that went with it. I never got the story in the newsletter before she went to be with Jesus. Now Hannah's story is being passed around Children's hospital and other places as a witness of how precious life is. Can I email you Hannah's story and her picture?
ReplyDeleteHi,
ReplyDeleteMy name is Ashley and I have nine children and expecting number 10 which is trisomy 18. Her name is Melody. I don't follow blogs, but in researching about trisomy 18, came across yours and have been reading and praying for Lilly. Lilly seems to have a lot of the heart issues that our little Melody does. My husband has been researching cardiac surgery for trisomy 18 since Friday when the doctor told us that no hospitals in Atlanta would perform surgery on Melody. We are going to another cardiologist for a second opinion. I see that we believe the same and have kindred spirits--even concerning facebook:) I do not have a blog, but I do have a caring bridge site. It is www.caringbridge.org/visit/melodymorgan
You have a lot on your plate right now. Please don't feel that you need to contact me but feel free to. morganfamily9@windstream.net. I am thankful for Lilly and for your strong testimony. God bless you, Ashley