Wednesday, March 25, 2009


Time indeed marches on. You may have noticed that I've added a spot for Paul Cardall's benefit concert. Paul was born with Tricuspid Atresia as well as some other defects and has had many surgeries during his lifetime. I've met Paul, and he is currently awaiting a heart transplant. He's a member of the Intermountain Healing Hearts support group that I belong to. Anyway, please support the concert if you're local, or stop by his blog if you're not.

I was able to attend the funeral services for Mercydez, and it was truly a blessing to me. Nic and Ashley had such a blessing in their little angel. You could feel her presence there, the Spirit was so strong. I am still struggling with their loss and they continue to be in my prayers.

Things continue on in my life. Sometimes I start feeling like my life is so boring, because I'm in a routine, but it's far from boring! The stresses continue and so do the blessings that come from the trials. Ben had another seizure. Right now I'm not sure why. The doctor wanted me to give him a multivitan with Vitamin D and his neurologist wants us to follow up with him in a couple of weeks. If the seizures continue I may just have to adjust the dosage on his medication. It's dosed by weight and since he just went through a growth spurt, he may be outgrowing the dose prescribed to him last November. The kid's a rock! He weighs 66.4 lbs! He is one solid little guy! Other than the seizure, he's doing great and loving kindergarten. He's slowly learning how to read. He's struggling a little bit, he's convinced that the pictures tell the story, and so he doesn't want to look at the words, but we're working on it. He'll get there.
Elaina is doing okay. I was able to go and visit her today. She's caught something, but we don't know what yet. Just today she started coughing and having a runny nose. I'm not sure if the cough is from the mucus or part of the bug. She would cry each time she coughed (which made me wonder if she has a sore throat), and wanted to just snuggle and sleep. Her nurse finally gave her some Tylenol and that seemed to improve her mood a little bit. We'll be keeping a very close eye on this one, that's for sure! Her saturations were still very good today, she was 84-87% the whole afternoon. Maybe it's just more teeth???????? I hope that's all it is! She's still tolerating her feedings very well. We have an appointment with her GI doc next Wednesday.
Well, that's it for now! I hope everyone has a wonderful week! Thanks for all the love and support and thanks for checking in on us!
Hollie, Ben and Elaina

Monday, March 16, 2009

Time Flies!

I feel like I don't really know where to start. It's been an up and down week. I feel that I need to start by mentioning that another sweetHeart earned her Angel wings this past weekend. Sweet Mercydez Haws passed away on Sunday morning. She fought a valiant fight and touched many people with her courageous battle. Mercy was 8 days older than Elaina, and was her neighbor in the NICU when she was born. I feel privileged to have been able to form a friendship with Ashley (Mercydez's mom) over the last year. My heart is so saddened by their loss. They are a strong family, and I can only imagine the pain and sorrow that they are faced with now. Please keep them in your prayers.

The rest of my week? Well, lets see..... :)
Elaina pulled her g-tube out last Sunday. It wasn't all the way out, but enough that formula was coming out around the stoma and they were concerned. They could also hear an air leak around the opening. They replaced the tube and she got to have an x-ray to check her placement, and everything looked good. She is still slowly working back up on her feedings. So far she seems to be tolerating them at about 60 cc's (2 oz) every 2 hours. When they try to go up to 90 cc's (3 oz) she gets fussy and cries. So we're at 60 and holding for now. That's okay. We'll get there!

Remember when I mentioned that I thought she might finally be teething? Well, she is. Because she is in a hospital setting, they have to write orders for absolutely everything. I'd asked if there was any way that she could have some Orajel to help numb her sore gums. So, the doctor had to come and take a look. He decided that she wasn't teething. The small fevers and mild pain must be associated with something else, so no order was given for the Orajel. Well, a couple of days later, I came in and low and behold, she has her first tooth! Yay!! We're not sure exactly when the tooth poked through since no one was checking for it (doctor said no teething going on!), but when I went in last Tuesday it was there! She seems so proud of herself too!

I wasn't able to get a picture of the tooth because she pokes her tongue out every time I put my finger in her mouth, but I'll keep trying! It feels like the tooth next door is ready to come in as well, so I went to the store and bought some Orajel myself and took it in for her to use. She's very happy and seems to be doing very well. I am so grateful!

She's discovering that she can grab things with her hands now. Her latest discovery is her foot. So cute. She'd just hold on as long as she could and when her hand would slip, she'd grab it again!

My parents came to town for Spring Break this week, so it has been nice to visit with them. It's also nice for them to be able to see Elaina. This is my sweet Mom, giving Elaina some lovin'!

My sister Liz was also able to come for a visit. She loves to sing lullaby's to all the babies and quickly put Elaina to sleep. It was so sweet! I think Elaina could have snuggled with her Auntie all night! Thanks Lady. :)

Ben and I were able to go and spend some time with her on both Saturday and Sunday. Here they are "in the zone" watching "Finding Nemo" together:

Comfy as can be! What a pair! Melts my heart.... :)

So that's it in a nutshell. Life is Good! I am so grateful for the many blessings I have! I love my family so much!!! My parents will be here for a few more days, so it looks like another busy week is on the way. Thanks so much for checking in on us!
Hollie, Ben and Elaina

Wednesday, March 04, 2009

A Ray of Sunshine

Elaina is my sunshine.

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.

Today, smacking her lips at me!

Still smacking those lips!

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!

A Valentine's Day pic with her Valentine Teddy Bear.

She looks like she just got caught doing something. She was being super cute with the camera on Monday. Full of smiles and fun expressions!

Well, thanks so much for checking up on us! I'll post again next week!
Hollie, Ben and Elaina