This is day 19 of Victoria's "Heart Surgery Adventure." Now being in a hospital room, the days drag by. There isn't as much to do and we are developing a love-hate relationship with Victoria's monitor, minus the love. That thing beeped on and off all night. A few minutes ago, I grabbed that sucker off the high shelf it was on and put it on the bedside table so I could reach the mute button better. The nurse is now trying to find another monitor and toe probe to replace the ones we have in case something is defective. We are pretty sure that some of Victoria's dips in her SATS are correct, but some of them are probably not. Hopefully, the new machine will help us get a more accurate reading.Dr. Knott-Craig stopped by today and said that "we are getting close." He wants to try taking Victoria off of oxygen soon. Right now she receives 1/4 liter of oxygen and her oxygen level usually stays in the 90's. They will probably begin testing her without oxygen a few minutes at the time to see if her level stays stable enough without it before removing it permanently.
Yesterday, Victoria didn't do so well nursing. I saw some of her old feeding habits surfacing (whether nursing or feeding via bottle) and I was disappointed. I thought I was about to be done with the pump, but it looks like I'm not! I've asked to meet with the lactation consultant tomorrow (if they are working in spite of the holiday) and also a therapist that can help me with Victoria's feeding challenges.
PS - I've gotten to be a pro at wrapping Victoria up very tightly in her baby blankets. I call her my little burrito!
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Gifts that require sacrifice become our treasures. Thank you for sharing your heart and mind with us on your blogs. Your words are a treasure to me-they bring out precious memories, emotions and thoughts unsaid. As I pray for you and all of your family, your blogs always guide me to your heart. Then I know how to pray. You are so genuine. We, your friends and family, are "out here" in cyberspace sharing with you, even if we don't comment everyday. In His Love, Lawrann Fanucci
What an adorable burrito!!
Kali wanted me to tell you guys to give her a Dora bandaid. I know we wish it was that simple, but I thought it was so sweet as she is very attached to her bandaids! She especially enjoys the videos. We look at your blog more than once a day so thank you for posting to keep us informed of what we need to pray about, and we enjoy the hospital humor too ;-)
Victoria is just beautiful. She looks SOOOOO good. I remember the ups and downs of nursing, especially Maddie, and it can get frustrating and disappointing. It is the one thing only Mommy can do, and there's a special closeness that comes with it. Just don't give up. I can imagine the resources available to you at UAB. Don't be afraid to take advantage of them. I'll definitely be saying a special prayer for you in that area as you deal with those challenges.
Again, Victoria is just beautiful. She seems to have quite a spunky personality! What treasured moments these will be to you!
Maddie says she's going to write Victoria a note and it says: "Precious." Keep us posted! You guys are prayed for daily.
Jackie Parks
While Alyce was reading the blog today she commented "Boy, she sure does have her eyes open alot." That is coming from a sister who had to try and MAKE her brother open his.
It is funny to see what my girls say to me when we look at the pictures and see you two going through the most similar things we dealt with.
This blog has been such a healing for me and the girls by sharing in your baby Victoria's life and your words of truth about the whole thing.
Ron is even reading to see how things are going and we just pray for you and the baby to be stronger while going down this valley soon you will be on your way to another peak. Just hang on and always bless him for another day.
We love you all,
Angela Ballard
and the crew
What a beautiful picture today of your little burrito! She is looking so much better. What a blessing to be able to stay updated. We will be praying about the feeding situation. Hopefully a new machine will help too! As we have been learning about our gentle shepherd, it is so awesome to watch HIM at work in your family.It is HE who will continue to guide you!!! We can't wait to you are back with us at NOMO. Many Hugs, Jan, Ronnie & Riley
Like some of the others said, we too are eager each day to check in with you guys via your blog. If I haven't sat down at the computer to check before Mattelyn thinks of it, she will say "Mama we need to check on 'Little Victoria.'" It has been a great way to teach her about praying for others. Children can be such awesome little prayer warriors when they pray.
You continue to be in our daily prayers and we know how to pray more specifically with what you share. God has given Victoria a strong will. She is truly a "Victorious Little Burrito" isn't she --ALL PRAISE BE TO GOD!
The Neighbors Family, William, Rebecca and Mattelyn
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