Phew!

It's been awhile since I posted. Sorry, I've been crazy busy! I'm finally moved out of my house in Orem and am looking for a place in or near Bountiful. For now, Ben and I are still staying with my friends Colleen and Najee. School ends next friday, so I'll be able to have a little more flexibility with my move after that point. I'm hoping that things will go smoothly and that we can be in our new home soon.

We had a pretty good Mother's Day. Ben woke up that morning not feeling well, and by mid-day had a fever. He slept a good part of the day and had very little appetite. Needless to say, I didn't make it up to Bountiful to see Elaina. Monday morning, he was full of energy, and even though he still had a yucky nose, I decided to send him to school. No problems Monday. I sent him to school Tuesday. He came home and told me he had a headache and started with a really bad cough. By bedtime he had another fever and was throwing up. He had a really rough night, so I decided to take him to the doctor on Wednesday. Well, the doc didn't like that his chest still sounded crackly after he coughed. So Ben got to have his first chest x-ray and the doctor determined that he had a case of Pneumonia! Poor kid! After a 5 day course of anti-biotics, he's getting back to normal. His cough is still lingering, but it's less frequent and he's back up to full energy.

With all the time I spent moving and then taking care of Ben, I wasn't able to see Elaina until this past Sunday. She's so cute. She has finally figured out how to get the nurses attention. She can pull off her leads! Of course, being the sweetheart that she is, she'll either put them back on (the sticky ones) as soon as the nurse comes in the room, or she'll smile and hand them to the nurse to put back together! She knows how to get attention! When the alarms go off, the nurses come in! It cracks me up. She's still trying to roll over, but doesn't like that her g-tube gets in the way. She also likes to try and pull herself up by grabbing the rails on her crib. She doesn't get very far, but she's getting stronger. I really think that her high chair has helped a lot. She loves to play with toys and watch movies in her chair. Sometimes she's out in the hallway so that she can see all the action and sometimes she's in her room watching movies with her roommate. Too cute! Her upper body strength and stability are increasing. She likes being upright! As I was holding her on Sunday I noticed that she would try to pull herself more upright. When I sat her up on my lap I got a great big smile! Little baby steps I know, but I am so proud of her!



I realized that Monday (the 18th) was a 1 year anniversary. It was the date she was admitted to Primary Children's last year. I can't believe it's been a whole year since I've had my baby girl home. What a year it's been, too! Crazy. Hopefully she'll be home soon and this can be all be behind us. She's getting there, my little turtle-bug!

This is just after her admission to Primary Children's last May. Dated May 19th in my photo archive.

This is now. Holy cow, what a year!

Well, that's about all I've got to report for now. We see Cardiology on the 27th, so I should have another update then. For now, we'll just keep on keeping on! Have a wonderful and safe Memorial Day weekend!

Thanks for checking in on us!
Hugs,
Hollie, Ben and Elaina

Bout time!

Okay, this post is long overdue. But in my defense, there has been a lot going on! I'm trying to get moved out of my house in Orem. I've moved in with my friends Colleen and Najee temporarily. Hopefully this will allow me to be able to save up the necessary amount of money to get moved up to Bountiful once school is out. Between working, spending time with Ben and driving up to spend time with Elaina, I've just been too tired to post. Besides, I wanted to share some pictures, and this way I get to post LOTS of them!!! Anyway, we had a wonderful Easter. Ben was sick, so I didn't take him up to see Elaina. I celebrated Easter with her on Saturday and then came home in time to color eggs with Ben and spent Easter day with him. It was very nice.

Elaina has been doing great! She is such a happy girl! She's just full of smiles, and I even get small giggles from her if I tickle her just right! We've started letting her sit up in a high chair for a little bit each day. She likes to lean to the right, so she gets a toy or something soft by her side to help her sit up straight. Friday was the first day, and she only lasted about 1/2 hour before she started to cry and wanted out. The nurses put her back to bed and she fell asleep in minutes. Sitting up is really hard work! Saturday she lasted an hour, but she only made it 45 minutes both Sunday and today. I don't have any pictures of her in the chair yet, they always put her in when I'm not there, but hopefully I'll be able to get a picture some time this week. I took Ben with me on Sunday and it was a great visit. We put Nemo on and they watched it together. Elaina smiled and "talked" (or rather grunted!) through the whole movie. It really is her favorite, she gets so excited at certain parts, she'll kick her legs and then extend them out straight and reach for the tv. It was fun to see both of my kids interacting together. They love each other so much! I had Elaina on my lap and Ben reached over to give her a hug. As he was hugging her, she leaned in and gave him a big wet baby kiss right on the cheek! I think it made his afternoon! Then, as we were getting ready to leave, I put her back in her crib. She rolled to her side, grabbed one of the bars on the crib railing and rolled herself onto her tummy. She just looked at me, like "and what do I do now?", so I rolled her onto her back, and she immediately rolled towards us again. Ben decided that meant that she didn't want us to leave, and I'd have to agree. It's SO hard to leave her! I'm still excited at the prospect of bringing her home soon. She's doing well, and hopefully it will continue!

Well, it's getting late, and my computer takes forever to upload photos, so I will leave you with these! This is what we've been up to!

My pretty little Easter girl!

Sitting with assistance! She looks so pink in this one... :)

Pulling her sock off. They can't put her pulse ox on that foot because she'll pull it off. She actually managed to get her toes in her mouth while I was holding her on Sunday. She seemed very proud of herself when she did it too!

This is my sweet Aunt Janet. She's my Dad's oldest sister. Elaina and I were thrilled that she came to visit!

She's got the "touch". She had Elaina asleep within a few minutes. Elaina just loved being rocked by her!

How sweet, Elaina is just holding onto Janet's hand. It was a wonderful visit!
(Thanks for bringing her Marney! I should have taken some pictures with you too!)

The aides were running behind schedule this day! I got there and she was still in her nightgown with her crazy hair! Too cute!

Such a happy girl! She's reaching for my camera strap. If I'm not careful she grabs it and tries to steal my camera so that she can eat it. :)

Mom and Elaina, having some snuggle time! I love the dress she's wearing with the ladybug. I bought one for her when she first had her g-tube, and I swear this dress runs small, because after it was washed, it didn't fit her. So I rebought it in a size 3T, thinking it would fit for awhile, and it still seems to be a little on the snug side to me. Hmmmm, maybe she's just bigger than I think she is!

Loves with big brother. So sweet!

So Ben loves to hold his sister. He hates that I always take my turn first (what can I say, I miss her too much to hand her over when I first get there! I need to get my kisses in first!) Anyway, I finally gave him his turn and after holding her for about 10 minutes, he said, "Mom, Elaina feels good in my arms! I like how she feels!" He is going to love having her at home!!!

This is my favorite picture of them all! I LOVE her smile! She is so happy to be in Ben's arms! It just melts my heart!

Well, thanks for checking in on us! We're still trucking along and someday soon I'll be able to post more often, because we'll all be under the same roof!
Hugs,
Hollie, Ben and Elaina

A Light at the end of the Tunnel....

I had a Care Conference at South Davis.

It was WONDERFUL!!

Here's the best part:

Her doctor looked at me and said, "So, when do you want to take her home?"

YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!
Time for a BIG Happy Dance!!!!!!!!!!!!!!!

Okay, so I can't take her home just yet, but it's out there. We're discussing it. It's going to happen. She still needs to be cleared by Cardiology and we don't see them until May 27th. In the meantime, I get to start learning her cares (g-tube, etc.), they are going to fine tune her meds, and Elaina will be working more with Early Intervention. If things go as planned, I could have her home in early June! I am SO excited! The best part is that she won't be coming home on Hospice, she'll just be coming home.
HOME!
Okay, can you tell I'm little excited about this? As long as she continues to be stable. As long as she continues to sat well. As long as she doesn't have any setbacks, she's coming home. I just can't stop saying it! She's gaining weight so well that they are going to cut back her calories. Everything that was talked about in the care conference was positive.

Thank you all so much for your love and support. I am so grateful for a kind and loving Father in Heaven! I am so grateful that He has allowed Elaina to blossom and grow. I know that it is through His Mercy, His Love and His Divine Plan that she is here. I am so grateful for my Savior. What a beautiful Easter season. My thoughts dwell on the beautiful loving gift that the Savior gave us. He suffered for all of us, He knows the pain that Elaina has gone through, as well as the grief that so many us of have felt in our lives. I know that God lives and that He loves us! I am so Grateful that my heart is overflowing!
Hugs,
Hollie, Ben and Elaina

It was teeth!

Elaina-bug is pointing at......
Her new tooth!! That's right! On the top. In fact, she's cut 2 teeth since I last posted. That brings her total number of chompers up to 3. Two on the bottom and now one on the top. She's still got a little bit of a runny nose and a pretty icky cough, but I'm really blaming it all on teething. Who knows, maybe the other top tooth will decide it wants to make an appearance soon!

Other than some teething grouchies (that's to be expected), Elaina has been doing great! There was some confusion with the nurses on how to administer her feedings, but it finally got worked out and Elaina seems to be tolerating them very well. We went to the GI doctor on Wednesday. He pulled the long tube out and replaced it with a nice mickey button. It's so much nicer to hook her up to for feedings! He said that things looked great and we only needed to come back and see him if she started having problems! Yay Elaina!!!

After we got back from our appointment with GI at Primary Children's, we were able to meet with Early Intervention. Elaina meets with Carole a few times a month for physical, occupational, etc. therapies. When Carole comes in, she also works with the staff to teach them what to do with Elaina so that Elaina is having some type of therapy daily from the nurses, respiratory or Mom! This visit was also our 6 month review. I can't believe that Elaina has been at South Davis for 6 months, holy cow! When we had our evaluation 6 months ago, Carole determined that Elaina was developmentally about 4 months along. This was in all her areas of development. When we evaluated her this time, here's what we came up with:
Gross Motor 4 months old (still)
Fine Motor 9 months old
Cognitive 7 months old
Language 6 months old
Self Help 12 months old
Social/Emotional 7 months old

That all averages up to be about 7 1/2 months old. Very good progress, considering that she's only been without her no-no's for 2 months! Carole gave me some good ideas for "play" time and wants us to start learning some sign language. Elaina doesn't use her voice very much, and when she does it is SUPER quiet. We think that her vocal cords sustained some damage from all the intubations, etc. She is making some coo's and grunts, and I finally heard her giggle the other day, but her language skills are pretty far behind. As of right now, we don't have any appointments up at Primary Children's until the end of May when we have a Cardiology follow up. I'm kind of excited (and scared at the same time) for this appointment. I feel like she's doing so well, but I'm worried to find out otherwise. Oh well, it's too far away to start stressing out now, all I can do is continue to pray that Elaina will get stronger with each passing day. Her saturations have been wonderful. She 's almost always in the 80's (unless her naughty fingers have pulled the canula off!), and she even set her alarm off when I was holding her yesterday because she was at 92! The alarm sounded on and off for about half an hour and then her respiratory therapist decided to change the parameters so that it would stop alarming!

Anyway, that's what happened in our world this past week. Ben is doing great. No more seizures that I've been aware of. He is very anxious for some warm weather. He's an outside kind of boy, and winter makes him very restless. He's got some severe spring fever! I've started my house hunt again in Bountiful. I'm hoping to find something that I can move into by the beginning of June. School is out at the end of May, and I'm pretty wishy washy about transferring Ben to a new school this close to the end of the school year. Part of me wants him to stay in the same school, with the same teacher and friends, but part of me thinks that he'd make new friends quite easily in a new school, even if it is at the end of the year. I guess I'll just have to see what happens and have faith that things will work out the right way.

On a sad note, I learned today that Dr. Hawkins, Elaina's heart surgeon was diagnosed with pancreatic cancer and given 3 months to live. He has resigned his post as Chief of Cardiothoracic Surgery. I will be forever grateful for his abilities and his dedication. He has touched many families and saved many lives. Please keep him and his family in your prayers during this difficult time.

Well, I'm heading to bed now. My eyes don't want to stay open much longer. Thanks for checking in on us!
Hugs,
Hollie, Ben and Elaina

Routine

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!
Hugs,
Hollie, Ben and Elaina

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!
Hugs,
Hollie, Ben and Elaina

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!
Love,
Hollie, Ben and Elaina

Doing Great!

Sorry for not posting for so long! I'm finally over this stupid sickness! It really knocked me down for a while! I think Ben might be starting to get it, so I'm keeping a really close eye on him. He was out on Monday with a super bad migraine headache and the pukies, seemed better on Tuesday, but started having a little bit of a runny nose today. I don't know what's up. Oh well, hopefully its just a little bit of allergies since we've had a couple of spring days here this week. Elaina is doing fantastic. She seems to be glad to be back at South Davis and settled right back into her routine well. She's once again being stingy with her smiles, at least for my camera! I was able to spend some time with her today, but the batteries on my camera are now dead so I'll have to share pictures on a later post. She's pretty much over her C-diff and has demonstrated that she can tolerate the continuous feeds very well. The only time that she's had problems is when the drip backs up and she gets a large volume quickly. They have her set up on the "Murphy Drip" still. Basically, her feeding pump is running continuously and dripping into a large bolus syringe. The syringe is attached to her G-tube, so her tummy is being vented (burped) at all times. They are doing this because the bi-pap machine that she is on at night is putting quite a bit of air into her tummy and the doctors don't want her tummy to expand quite that much yet, besides too much air gives her a tummy ache and that is just no fun. Her Nissen incision is healing nicely, and she didn't seem to be bothered when I touched it today to take a look. However, I think that her first little tooth is getting ready to come in, she's liking to "bite" my finger and anything else she can get into her mouth. She's had a couple of short low grade fevers that the nurses are attributing to teething, so we'll see when it finally comes in! Everyone thinks that she's looking really good and you can tell that she loves to have the no-no's gone. Sometimes she forgets that she can bend her elbows, and then when she remembers you can just see her eyes light up. She really enjoys interaction, she loved it when I played pat-a-cake and peek-a-boo with her. That's when I got the smiles. She also loves to be tickled, but I still haven't heard an actual laugh out of her. She's just quiet. I did get some coo's and grunts today, so I'm still hopeful that she'll begin to catch up and become more vocal. Anyway, so that's pretty much all the new news! I'm still busy as ever, working my 2 jobs (my 2nd one has slowed down a little, but that just gives me more opportunity to spend time with my kids!), being Mom and enjoying all the blessings in my life! I'm hoping to start the house hunt again next month and start getting moved up to Bountiful soon. That would just make life SO much easier!
Thanks for checking in on us!
Hugs,
Hollie, Ben and Elaina

A Case of The Sickies

What a weekend! Elaina made it back to South Davis, and just in time! She tested positive for C-diff B. It's been tough on her to deal with. She's been sleeping quite a bit, but I guess that's to be expected. I think she was glad to get "home". She's been doling out smiles to her favorite nurses at South Davis and they are all SO happy to see her back. She's still having times where she seems to be hurting, but they are taking very good care of my little Elaina bug! I got home and then GOT SICK! It started out as a migraine and then turned into a pretty nasty flu. I've spent the entire weekend in bed with a fever and aches and throwing up. Not fun. Ben and I are staying at my friend Colleen's house, so at least there are other adults in the house that have been able to pick up my slack and help me out with Ben. He was super sweet on Valentine's day. He gave me some roses and asked me to be his Valentine! So cute! I found a giant stuffed ladybug with hearts on her face that I had to buy myself. It's bigger than Elaina, so I don't think I'll be taking it up to South Davis any time soon. It can stay at home and get snuggled by me or Ben whenever we miss her. I've got pictures I want to post, but it will have to wait. I'm still not feeling very good this morning and I just don't have the energy to do it! :( Anyway, I've been feeling guilty all weekend that I didn't post that Elaina was out of Primary Children's, so please forgive me!
I'll post more once I'm feeling better!
Hugs,
Hollie, Ben and Elaina

Staying Put

It's Wednesday and we're still hanging out at Primary Children's. Elaina is up to full feeds, but she's having some difficulty with absorbtion of the food. Her stool output is far too large, so they're having to replace fluids through her IV. The doctors are running some tests to see if she has C-Diff or something else that would cause this. Her CRP has been elevated for the past couple of days, but she hasn't had a fever since Sunday afternoon. Anyway, it's looking like we're staying put once again until this can work out. The doctor told me maybe Thursday but most likely Friday morning, so hopefully we'll be out of here by the weekend. The hardest part for me is being away from Ben. I miss him terribly, and I know that this is bringing back memories for him of our long and difficult summer. He's a trooper and seems to be handling it well most of the time. I am SO very grateful for my Aunt Kathryn and Uncle Don. Ben is staying at their house until I get home. I don't know what I would do without such a wonderful supportive family.

On a positive note, Elaina seems to be feeling a little better. She's started handing out smiles to a select few, and has needed less pain medicine. She's been pretty sleepy the last couple of days, but her sweet personality is starting to peek through!

Thanks again for all the prayers and good thoughts coming our way, I can feel the strength it gives me.
Hugs!
Hollie

Friday Night at the Movies

We're still hanging out on the floor at Primary Childrens. Elaina seems to be doing better today. She still had a little bit of a fever this morning, but as the day progressed it went away. Just to play it safe, the doctors ordered labs - blood, urine and a respiratory panel. So far everything has come back negative, so I'm feeling like the fever is just her body's way of dealing with surgery and the "foreign" g-tube in her body. She also started out her day in a little bit of pain and was fussy. She had to have a dose of morphine to get her over the hump, but has seemed comfortable this evening. They decided to re-start her feeds this afternoon, but we're still working up slowly. I asked them about starting with Pedialite (thanks for the suggestion Kathy - I'm looking forward to a copy of that manual!), but they didn't want to do that. :( They thought that the Pregestimil she's on was broken down enough that it would be just as gentle on her tummy and wanted to give her as much nutrition as they can. They're working her up VERY slowly. They started at 2 ml per hour, we're up to 4 ml and will be jumping to 6 ml in about 1/2 hour. The goal is to get her to 9 ml by tomorrow and then we'll work up from there. I was able to talk to her surgeon this afternoon and he said that as long as she's up to 36 ml he could see no reason why she wouldn't be discharged on Monday. Yay Elaina!

Now a couple cute stories from our day today. Elaina is enjoying her new found freedom from the no-no's. She's decided that it is her job to make sure that her oxygen is NOT in her nose. She rubs it out constantly and poor baby has scratched her nose with her fingernails due to her efforts. So she's in her crib, and I look over and this is what I see:

Notice, she's not happy. She's grumpy. BUT, I can see her face, NO feeding tube in her nose, NO oxygen canula in her nose, just her sweet face. :)

So I put her oxygen back on and tried to play with her. She was NOT amused. She did not like that I had my camera out to play. Here's what happened when I tried to play:



After putting her oxygen on again, I put my camera away(for a moment) and decided to try and find something else to make her feel a little bit better. Her nurse came in and gave her a sponge bath while I tried to think of ways to help her feel better. I've had Child Life on a mission all day to try and find a copy of Nemo for her to watch, but for some reason there isn't one single copy to be found in the entire hospital. I was just about to give up all hope when I was channel surfing (to see if I could find something that might capture her interest!) and Finding Nemo was on Disney Channel!!!! We caught it at the very beginning and her mood changed instantly. She started kicking and getting excited and then settled down to watch her movie. It was SO CUTE! A couple of times she started to smile at her favorite parts and then caught herself and went back to her straight face. Here she is "in the zone" watching her favorite Nemo:



She's been in a much better mood ever since. She hasn't needed any extra pain medicine, and she went to sleep without seeming to be uncomfortable.


Still no smiles today, but at least she had a good evening and enjoyed watching her movie. Hopefully I'll be able to get a smile out of her tomorrow!

Thanks again for all the love and prayers!
Hugs,
Hollie, Ben and Elaina

Darn it!

Good news and not so good news.
Good news first. We're out of the PICU. We got moved to the Children's Surgical unit yesterday afternoon. It was a much better transition than the last time. We actually got moved into the exact same room that we were discharged from in October. So that's kind of nice.
Now the not so good news. Elaina couldn't tolerate her feeds. We started out at 2 ml an hour, and then were supposed to move up 4 ml every 6 hours until full feeds were achieved. She tolerated the first increase, but when we tried to move it up to 10 ml an hour, she was miserable. They tried to feed her and vent it at the same time and it just backed up. Within about 30 minutes there were 3 hours of feeds backed up in the tube that was supposed to be dripping into her g-tube. She was very agitated, so it was decided to stop feeds. Surgery is concerned that her bowels just haven't woken up yet from surgery. That coupled with the fact that she hasn't been fed gastrically for the last 9 months means that we truly need to proceed with caution. She's also developed a small fever. This is her first fever since we were discharged from Primary Childrens back in October. They've drawn labs to make sure that she's not developing an infection. Her stoma site (where the g-tube enters her stomach) looks pretty inflamed, so I'm a little concerned. I've been asked why the tube is up so high on her tummy. I talked to the surgeon about it when he rounded this morning, and he said that it's just her anatomy. That's where her stomach is, so that's where they put the tube.
Well, the rest of her team is coming by for rounds, so I'm gonna go. I will post more either tonight or this afternoon when I know what the plan is and once it's been implemented.

Thanks for checking up on us!

Hugs,
Hollie, Ben and Elaina

The End of the Day...

Elaina on Saturday before the surgery. What a happy little girl!

Holding hands with Aunt Becky after surgery. She kept rolling herself onto her side.

Sleeping with her no-no's on. She has an NG tube in her nose to help drain some of her stomach acids and to keep air from building up in her stomach post op. They are using it to give meds and "burp" her. Since it's going through the new Nissen, it would be EXTREMELY painful if she pulled it out and it had to be put back in. Poor baby, we have to save her from herself!

She got some bigger no-no's. She quickly demonstrated her Houdini skills for the PICU staff. Her poor little tummy is all bandaged up.

Poor tummy. They put the g-tube up a little higher than I've seen them on other kiddo's. It's in the same area as the Nissen incision. I got to see it today during a dressing change. It looks pretty good, it isn't too swollen.

She was pretty upset that I wanted to "play" and take pictures when she didn't feel good. She refused to give a sad face to the camera and kept turning away. I didn't take very many pictures.

Finally sleeping after a rough day!

So here's the "plan". :) (You know how quickly that changes!)
We're supposed to start feedings tomorrow and then we'll move out of the PICU to the floor (Children's Surgical Unit). They will continue to work on feedings for a couple of days, with the goal of being discharged by Friday. She will go back to South Davis and we will then discuss the timeline for her to transition home!
It is going to take some time to work up to full feedings for Elaina. She has not been fed into her tummy since May of last year. This means that her stomach is very small and won't hold very much. She's alreay getting her oral meds into her stomach, but it seems to be slightly uncomfortable for her. I'm hoping that feeds will help that as well. They are going to have to start her out on formula very slowly, 2 - 5 cc's per hour on continuous feeding and slowly work her up to her full feed. It's going to take several days to stretch out her stomach. Hopefully she'll be feeling better tomorrow. She's still very sore and uncomfortable. I held her for a little while. I piled pillows all over myself and had the nurse gently lay her on the pillows. I was so worried that it would hurt her that I didn't hold her for very long. She took a nice little nap in my arms and then went back to her bed. I hope I can get in some better snuggles in the morning. Well, I'm off to bed. I just wanted to post some pictures!

Post Op Day 1

So Elaina is doing well today. We're still in the PICU and it's looking like tomorrow will be the earliest that we're moved to the floor. She had a pretty good night, no problems. They are trying to wean her off the morphine today and giver her Lortab. She's seems to really be struggling with the pain. She's had to have a morphine bolus twice to help her get through it. She was just given the 2nd one about 20 minutes ago so that she could tolerate a dressing change. The surgical nurse came to look at her g-tube and Elaina started crying, so we decided to wait to change the dressing until she was comfortable with the pain med. After her dressings are changed I get to hold her for the first time since surgery. Yay!
I will post again once I'm done with my snuggles!

In the PICU

Good news! She was able to tolerate coming off the ventilator and went straight to 1 liter of oxygen by nasal cannula. They have a ventilator on standby in her room, but it's looking less and less likely that she'll need it. Her oxygen saturations are in the high 70's and low 80's. She's in some pain, but the nurses are keeping on top of it. The doctor said that they are going to hold off on feeds for at least 24 hours. Right now it's still looking like we'll be in the PICU until tomorrow or Wednesday, then we'll go to the 3rd floor for a couple of days and then Elaina will be able to go back to South Davis. I've taken a few pictures, but the cord I need is buried in one of my bags and I can't get to it at the moment, so I'll have to post later. So far, so good. Thank you so much for keeping us your thoughts and prayers.
Love,
Hollie, Ben and Elaina

Update

The doctor just came out and talked to me. He said that she did very well in the surgery. There were no complications, and no blood loss. She tolerated the anesthesia well and they are going to try to extubate her now. I won't be able to see her in the PICU for about another half hour, so I won't know if the extubation was sucessful until then. If her recovery goes smoothly, she'll be in the PICU for 2-3 days, on the floor for a day or two and then back to South Davis. Hopefully she'll be back at South Davis by this weekend! I will update more in a few hours, once I've been able to see her.
Thanks for all the prayers!
Hollie

In the Waiting Room

They just took Elaina into surgery about 10 minutes ago. They told me that the surgery will last an hour to an hour and a half depending on how long it takes to get lines in. At this point they're not sure if she'll be off the ventilator after surgery or not, we'll just have to play it by ear. Elaina started her morning off pretty happy. She had lots of big smiles for me and some little silent giggles, but as the morning progressed, she was a little unhappy and fussy. She napped in my arms for most of the time that we waited, but I think that she was fussy because she was just hungry since they stopped her feeds at midnight. Please keep her in your prayers. Today is going to be a tough one!
Thanks,
Hollie

At The Hospital

Hi Everybody! This is Becky, I'm Hollie's little sister, and i'm here at the hospital for Elaina's nissen and g-tube surgery. Hollie asked me to post an update. We got here about 9:15 this morning, just a couple minutes before Elaina arrived. Hollie got to go behind the scenes with Elaina for the pre-op mumbo jumbo... and i sat in the hall... oh well. :) but what i've HEARD is that she's cleared for the surgery and we're just waiting for an operating room to open up. Apparently, the room that was scheduled for her needed to be used for an emergency surgery. So now we're waiting. Elaina is doing well, although a tiny bit fidgety/cranky because the poor thing hasn't had food since midnight. She's such a sweet little munchkin :) what a cutie! Thanks for reading, and I (or Hollie) will keep you updated throughout the day.
(((hugz))) Becky

Doing Well

This past week just seems to have flown by. I seriously don't know where the time goes! I was able to attend a Care Conference at South Davis a few days ago. It was nice to be able to meet with members of Elaina's "team" to get the full picture. Doctor, nurses, respiratory therapy, nutrition, child life, early intervention, etc. were all in attendance. The general consensus was good. Elaina is in a very stable place right now. They reiterated that she is still very fragile and the scales could tip very easily. I don't think that she'll ever get out of the fragile category. But stable is good. Her saturations are continuing to improve. She was between 88 and 90 when I was there for a few hours today. In fact, I thought she looked practically pink!! :) She's attempting to become mobile. She likes to scoot herself around in her bed. She'll start at the top of the bed and arch her back until she's at the foot of the crib. She turns herself sideways and sometimes trys to roll herself over. She gets about half way over and then runs out of steam. She's got the sweetest little personality. She's so playful and happy all the time! She really likes to watch Disney/Pixar movies. I think that she likes the colors and fun characters. Her favorites are Finding Nemo, Cars and Monsters Inc. She also loves to listen to fun upbeat music. We had a really good time today playing pat-a-cake, itsty-bitsy spider, and piggies on her toes. She is extremely tickilish but doesn't laugh out loud. So cute! That pretty much catches us up. Surgery is still planned for the beginning of February, her snotty nose and cough have cleared up, so hopefully she won't have any problems that could delay our big day. Well, I thought I'd finish up the post with a few pictures from my last couple of visits. She's just getting so big!! By the way, she weighs 20 lbs!!! But she's still at only 30% on the charts. Not bad for a little one that started life out at barely 5 lbs!

Sucking her thumb, I can't wait until the no-no's can be gone for good!

I think she might finally be teething. I don't feel a tooth quite yet, but she's drooling more and her gums feel harder to me. She rarely takes her fingers out of her mouth once her hands are free.

I think she was trying to talk to me. She's just so expressive!

Such a Big Girl! We'd just finished playing with some of her toys.

Chewing on some of her toy rings. I love how she is starting to explore things more with her mouth.

:) So cute! I love the ponytail on top of her head. :)

Her smile melts my heart every time!

Playing with her wires. At least it's not the NJ tube!

Trying to figure it all out.

Thanks for checking in on us!
Hugs,
Hollie, Ben and Elaina