Ever since I found out that I was pregnant with her, "You are My Sunshine" has been her song. Ben and I sang it to her just about every day before she was born, and I have tried to sing it to her every day that I am with her since her birth. There are some days that the words have been too hard to sing, so I just hum it, but it's her song. She is my sunshine. She brings such joy to my life!
This has been a pretty good week. I've had some hard moments, but I've tried to keep everything in perspective. On Monday, a sweet little one lost her battle with CHD. I've been following her blog since last spring when I met her parents up at Primary Children's. Gracie had HLHS, and passed away a week after she got a heart transplant. My heart has been so heavy this last week. I've wanted to blog, but felt at a loss for words. My heart and prayers are with this sweet family.
The things that have lightened my mood are being with my two children. Ben has been such a sweetheart. He came to me the other day after I'd finished reading an update on Gracie's blog. I had been crying and he wiped my tears and asked me what was wrong. I told him about Gracie and her valiant fight. That night at bedtime when we prayed, he prayed for Gracie and her family. It was truly remarkable that my 6 year old could demonstrate such love and compassion for another family. What an amazing little man. I love him SO much!
Elaina has been on the super sweet side this week too. She's over the c-diff, adjusted to the g-tube and back to her happy and sassy self.
She is teething, so she has her moments of being unhappy, but luckily a little bit of Tylenol seems to do the trick. She has brought me SO many smiles and has filled my soul with love. She LOVES kisses and has developed the habit of grabbing my hair and pulling my face to hers when she wants some extra loves. It's pretty cute. Even the nurses could tell that she was doing it to get some kisses from Mommy! Today we went for a follow up with her GI Surgeon at Primary's. He said that her incision is healing very nicely, and the stoma looks great. We'll be going back in a few weeks to get the long tube taken out and her button put in. (This doctor likes to wait at least 6 weeks to make sure that everything has had time to heal before switching things over.) He also said that we could start working on bolus feedings! Yay!!! No more continuous feeds during the day!!! He still wants her on continuous at night to help vent her tummy and give her a little extra nutrition, but we're going to start out with 3 oz every 2 hours during the day and slowly work it out to larger volumes spaced a little bit further apart. I am so excited! This is another step closer to being able to come home.
I've decided that for now I'm only going to be blogging once a week. If something important or exciting (or heaven forbid scary!) happens, I'll be sure to post. But things are just so crazy that I decided to make blogging part of my schedule and to try posting weekly. We really are in a good routine. I'm able to go up to South Davis 3 - 4 times a week to spend the afternoons with Elaina. I spend the mornings working and once I get Ben out the door, I'm off. The days I don't make the drive to Bountiful are spent running errands, doing laundry and working at my 2nd job. This job also carries over into the evening and sometimes later at night, so my free time to play on the computer is limited. The best part is that Elaina is stable. Stable is good. She's looking more pink all the time and starting to meet some of her milestones. She can almost roll over! She loves to grab and put things in her mouth! She's still developmentally delayed, but she is catching up and I'm very proud of her progress.
I thought I'd leave you with some pictures (as I promised forever ago!) from the last couple of weeks. They are in no particular order, just some of my favorites.
Monday. She was trying to grab the camera out of my hands so that she could eat it! Her chin is a little bit chapped. I think it's from teething. She's putting everything to her mouth, even her stuffed animals!
This was last week. Even in the purple dress she's looking a little bit pink! Her saturations are in the perfect range, 80+ regularly!
Reaching for her mobile. If they put things too close to her she'll grab and not let go! There are beads hanging from the mobile and she loves to pull and hang on to them.
Another little sassy smile from Monday. Don't you just love her hair? Her tech Michelle loves to play with it and put it in piggies and ponies! Too cute!
I don't know if you can tell, but she's sticking her tongue out as far as it will go and then is "biting" down on it and smiling at the same time. Her smiling eyes are the charmers!