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