Night 3 at the Hospital

Avery seemed to have an okay day today. They kept everything the same and still had her sedated. She has been having some Bradys (where her heart rate drops below 80 beats per minute) because of the precedex. They said its completely normal and nothing to be concerned about. Avery always brings her heart rate up by herself and never has to be stimulated. They know she isn't having heart problems, that its just due to the sedative. 

I'm not really of fan of being at main campus. I feel like no one tells us anything. I have finally learned that Avery's chest X-ray showed that she had no pneumonia but it did show a thickening in the bronchial walls which is consistent with bronciolitis. I also found out that her respiratory virus panel came back negative for all respiratory viruses (flu, rsv, etc) but was positive for rhinovirus which is basically a normal URI(upper respiratory infection) that kids and adults get. 

Today Avery seemed much more alert even with the sedative. We were holding her and she was looking all around the room and studying her christmas stocking that we hung on her wall. She also flipped over(even while being attached to a bunch of cords and cannula) and as I was trying to adjust her, she crawled to the top of her crib. Just now as I am typing this blog she started causing a commotion and I went to see what was the matter and she somehow managed to get all the way to the bottom of her crib. She was mad because all of her wires were pulling and they didn't have enough slack. I am hoping this means we have seen the worst of this illness and that she is starting to feel better. Hopefully tomorrow they will lower her oxygen settings, maybe switch to a regular cannula and get our poor girl something to eat. She hasn't had formula   in almost two days. The only thing that has been in her belly is Motrin, Tylenol, vitamin d and some water to flush her gtube. 

I am spending the night at the hospital and Tim is hopefully going to get a good nights sleep at home. He worked today and works tomorrow and was with Avery all last night. 

Here are a few pics from today..

We got to hold Avery today but its a little bit of a pain because of all her wires. I guess we have experience dealing with a bunch of wires from when she was in the Nicu.

The elf visited Avery today 

St Nick came a day early and brought Avery a stuffed animal from one of her favorite tv shows.. Bubble Guppies. 

Daddy and Avery 

Not improving so on to the PICU...

She spent the night in the Pediatric unit. She fussed, cried and coughed all night long. Her breathing was still labored and getting worse. They decided to transfer Avery up to the PICU (pediatric intensive care unit). Tim and I broke down a little bit when they were transferring her. The PICU is just like the NICU..All the monitors and beeps and cords that come with the NICU along with all of the worrying. When she was transferred there they decided to put her on a high-flow cannula.

They ended up increasing her oxygen and she was still having breathing issues. She would also be resting and all of a sudden wake up, start screaming and flailing her arms. She did this when Tim and I were there and she desatted to 84 and was turning blue. Definitely a scary moment. She finally calmed down and they got her oxygen levels back to where they should be. Tim and I told the nurse we were going to go home for a few hours, shower, eat dinner and then one of us would be coming back to spend the night.

When we got home, Tim looked at his phone and realized he had a missed call. It was the PICU. You never want to see them calling because it's never good news. Avery had another episode when we were gone, screaming, flailing her arms, turning blue, and desatting. They decided the the high-flow cannula she was using wasn't working so they switched her to a RAM cannula. Not really sure of the difference because all I heard when they were explaining it was "this is pretty much the last step before she gets intubated". We definitely don't want her to get intubated. Babies are never comfortable when they have a tube down their throat and it's kind of the last resort. If the intubation doesn't help her, nothing really will. Plus, the 50 stitches she has her in mouth with most likely get ripped up when they try to intubate her and we would have to start that healing all over again. Definitely something we do NOT want to be doing.

She was still very fussy and they took her temp and it was 102.8. They gave her tylenol. Lately tylenol has seemed to really calm her down. Not this time. Still kicking, screaming, and after an hour, her fever was still 102.3. They decided to give her Motrin. She was still fussy after the Motrin so they gave her magnesium sulfate which they said would help relax the smooth muscles including her lungs and also gave her precedex which is a sedative. We have been wondering why they didn't try a sedative sooner.

Tim is spending the night at the hospital and I decided to come home and spend the night with the dogs. I was supposed to go back to work tomorrow but I will be spending the day at the hospital and sleeping over. Thankfully my new department understands and I really appreciate it. Not a great way to start a new job. Believe me, I would rather be working than going through all of this.

Tim and I have decided that one of us needs to be at the hospital at all times. It seems like they have really been slacking lately. Yesterday one of the doctors was just about to stick her finger in and feel the roof of Avery's mouth. I yelled Wait Wait Wait, you can't do that, she has 50 stitches in there. Then there was another instance regarding her feeding and they didn't realize she has a gtube. Then they kept saying "does she have a pacifier" when Avery is upset and we repeatedly have to tell them she can't have one because of the surgery. Every single person who walks in her room now gets the "She has 50 stitches in her mouth, do not stick anything in there" speech. I should have just recorded it because I am sick of repeating myself. I just wish they would do what they are supposed to do and look at her chart before trying to treat her.

They finally did a swab to see what (if any) type of virus Avery has. The results should be back tomorrow. They won't really treat it any differently but they decided to do the swab anyways. I am trying to get them to get another chest xray to rule out pneumonia or anything else. They did one when she was at Fairview yesterday but a lot can change with Avery in just a short amount of time.

I have taken some fun pictures of Avery this past weekend but I will post them once we are through with the PICU. Until then, sorry for the not so fun pics....

So sad the the elf had to visit Avery in the hospital :-( There will be more fun pics of him from home but I will have those in another post.

Transporting Avery to the PICU

Avery's new room in the PICU. Yep, Tim will be sleeping on that cushioned bench tonight.

One of the VERY few times Avery was sleeping

Avery's new cannula and breathing machine.

She is not having fun here. Look at all the things she is hooked up to

Her best friends at home miss her. I said Avery's name when we were at home today and Chewie's ears perked up and he got all excited. It was so cute.

Our Home Away from Home

Yep, we are back at Main Campus. Avery started coughing last night. We didn't think anything of it because she coughs about 50% of the time. This afternoon she started having trouble breathing. It seemed like she was trying very hard to breathe and her belly didn't look right when breathing. We took her to Fairview ER. What's nice about Fairview is that if you are a pediatric patient, you don't really have to wait. Once we were registered we waited a total of two minutes in the waiting room. When she was first triaged, her pulse ox was very low (70 something) and they thought there was something wrong with their machine because she didn't look a dusky color, etc. They ended up trying again and it went up to around 85. Still not good. They decided to do albuterol, some blood work, a chest xray(thank God it wasn't like the traumatizing one she had a few months back) and put her on oxygen. 

They also decided to call the critical Care Transport team. Yuck, Tim and I both knew what that meant... Getting transferred to main campus to spend the night. 

I rode with Avery in the ambulance to main campus. She still had labored breathing when she got here. They did another albuterol treatment and she seems a bit better. 

They think its just a virus. They don't want to test her for what type because they said they would pretty much treat her the same no matter what. Continue monitoring, giving oxygen and albuterol as needed. 

I am off to bed. It's been a long day. I will try to update tomorrow. 

Getting oxygen at Fairview ER

Being transported by the critical care team

My new crib for the night

Hit the rock 

This was right after my Tylenol. I smiled at Mommy. 

Home Sweet Home

Avery did pretty well during the first night after her surgery. Luckily we had a bed and a recliner in the room. Tim and I actually slept very well that night. She woke up a few times throughout the night. The next morning her breathing didn't sound too good. She sounded almost like she was wheezing so the respiratory therapist came up and we all decided that an albuterol breathing treatment sounded like a good idea. She still didn't sound great throughout the morning and early afternoon. It was looking like we were going to be spending another night (another Thanksgiving night to be exact) in the hospital. Since the surgery, Avery wanted nothing to do with eating. She didn't even want us to use a dropper and drop formula into her mouth. We gave her some formula through her gtube and gave her some pain meds. One minute she was cranky, fussy and uncomfortable looking. The next minute she was a completely different baby. Even the nurse noticed. She was trying to crawl around in her crib, climb on Tim and was happy and smiling. The nurse paged the doctor and we were able to come home!

The first night at home wasn't too bad. She went to bed around 10:45. I gave her some oxycodone around 4:30 and she wouldn't go back to sleep. For some reason, I think Avery has a reverse reaction with the oxycodone. Instead of making her calm and sleepy, it makes her more awake. After about 45 minutes she fell back asleep until 8:30 this morning. She is doing pretty well. Much better than I thought she would be doing. Some moments she is smiling and acting completely fine and then the next minute she is fussy and nothing seems to comfort her. She is still refusing to eat anything by mouth. I am definitely thankful she has a gtube. If she didn't, we would still be at the hospital.

Another issue she was having is that she hadn't pooped since Tuesday. It's most likely due to the anesthesia and pain meds. We decided to give her some prune juice to help things a long. We gave her some throughout the day. I was worried there would be a blowout when she finally pooped. We were giving her a bath and all of a sudden I looked down and she had pooped in the water. Go figure! It could have been worse, it could have been diarrhea.

Dr. Doumit called me this morning to see how she was. I asked him how many stitches were in Avery's mouth and he said about 50. 50 stitches in our little girl's mouth. No wonder she doesn't want to eat. I wouldn't want to either if I had 50 stitches in my mouth.

We haven't really had to use the arm restraints which was one of my biggest fears about the surgery. I am off of work for a week so I am constantly watching her. She has only tried to put one thing in her mouth so far. I am sure this will change as soon as she starts feeling better and wanting to chew on everything in sight.

I hope you all had a great Thanksgiving. Tim and I are thankful for all the love, support and prayers from our friends and family. We were so happy that Avery got to come home yesterday and not spend another holiday night in the hospital.

I fell asleep holding onto my bib and Care Bear

Snuggling with Mommy

 I received some pain meds and then stared at my glowing toe for awhile :-)

Ta Da! I am feeling much better. Check out my sweet hair!

Home at last and playing with my new toy. Mommy and Daddy wanted to get me something that I wouldn't try to put in my mouth.

Surgery Day- part two

We finally got moved up to a room around 2:45. Avery has been resting fairly well while we hold her. She was originally given fentanyl for her pain right after surgery, then was given IV Tylenol (which supposedly is better than regular Tylenol but I don't believe it) and the doctor ordered morphine but she hasn't had any doses of it yet. We are trying to stay on top of her pain but I think the nurses are going to wait until she gets fussy before giving her any more. It's been about 3.5 hours since she was given the Tylenol through her iV.   So far so good. The restraints do not stay on well at all and have already come off about 4 times. It should be a fun game trying to keep them on her. She hasn't complained or been upset about them yet but she is still pretty groggy and tired.

Tim and I are going to go home for a few hours and then come back later and spend the night here. Hopefully everything will go well tonight. Here are a few pictures from today. 

Ignore the dumb face I am making in this pic

Arm restraints. They even have a red headed girl on them.

Pulse ox, IV and allergy bracelet identifier. The only reason she is wearing the allergy bracelet is because I told them I didn't want her to have augmentin for antibiotics because that's when she had the horrible diarrhea and diaper rash. 

Rocking my girl to sleep

Tim holding Avery's hand

Avery's room for the night. Luckily there is a bed in there that Tim or I can sleep in. There is also a recliner and rocking chair in the room.

Surgery Day :-(

I will give you an update of what i know so far.

Its now 1:00 and we have been here more than 6.5 hours. Well we got up around 5:10am and checked in at main campus around 6:30. Her surgery was scheduled for 8:30 but they didn't start until 10:04. The doctor just came out and said everything went well. They had a little trouble intubating her. Dr Doumit said her mouth was so small and he couldn't even put his finger in there to close up the stitches, that he had to use instruments to close them. She will be on a milk diet for 4-5 days and then she can have puréed baby food or soft food like mashed potatoes. For the first day or two we will use a dropper for the formula and after  that she can suck on a bottle. She will be in arm restraints for 2-3 weeks since she puts things in her mouth.

I couldn't believe all the love and support that we received from people regarding her surgery. It was overwhelming. Her teachers at daycare made her a card, my friend Karen sent her a card and package and her cousin, Eddie, sent her a video message. Not to mention all the posts on Facebook. We love you guys and I will update more once we get to see her. 

Some random pics. Avery will not be commenting on them because she is not feeling up to it right now.

Care package from Karen. Cheer care bear and a Brave figurine because Avery is the "bravest" redhead that Karen knows. (Sooo cute, thanks Karen!)

Card from daycare 

Happy Birthday Tim!

Wednesday was my last Wednesday off with Avery. We decided to go shopping. We went to Southpark and Avery got her picture taken with Santa. I know it's a little early but she will soon have her arms in restraints for the next 3 weeks and will probably be an unhappy camper. Avery also had her pre-op appointment on Wednesday. Everything went fine. She is still a little peanut...only weighs 13lbs 15oz. She also received her flu shot and Synagis shot. She woke up crying at 12:45am. She was burning up. Her temp was 102.3. She never had a reaction to any of her vaccinations before. We gave her some tylenol, sat with her until she fell asleep and then checked on her an hour later to make sure her temp had gone down. It had so we went back to bed. Her temp was 99 in the morning. She did fine at daycare on Thursday but took a 3 hour nap when she was there.

One of Avery's Christmas gifts is going to be a 6 month subscription to Citrus Lane. It's kind of like a Bark Box for kids. It comes every month and is filled with products recommended by moms. When you sign up, you enter your baby's birthdate and they send age appropriate items. You can also select male, female or gender neutral gifts. We received our first one this past week and I couldn't wait until Christmas to open it. In it we received some reusable snack bags, a coupon for a free pouch of baby food, a cute spoon and fork, lip balm(sometimes they throw a special treat in for mom) and a really sweet toy boat that you can use in the bath tub. The boat is also a pitcher so you can use it to rinse shampoo out of your baby's hair. If you would like to sign up, please use the link below. You will get $10 off your order and I will get a $10 credit.
https://www.citruslane.com/invitedby/Susan.Svitak.2257762

Today is Tim's birthday! I ended up dressing some of the kids up in party hats to surprise him. It took a little bribing but it turned out cute.

Today was also my last day of working in Call Center Support Services at Cleveland Clinic. I had a great time working with all of them. They were there for me when trying to get pregnant, the days I would come in to work crying because Avery was having a bad day in the nicu, and also were there to celebrate the good times. I will miss them but know I will still be working with them on some upcoming projects. I am excited to start in my new position in the Telecom department with the Cleveland Clinic.

Avery has her surgery on Wednesday. When we went for the pre-op, Dr Love said she is so excited for us. I looked at her like she was crazy. I told her that she is not going to be the one that Avery is going to hate for the next three weeks when she is healing. She said it is going to be great. This surgery could solve all her issues. She won't be as congested all the time and she will finally be able to eat whatever she wants. Right now she is very interested in everything Tim and I eat but she has trouble eating it. We gave her mashed potatoes the other day and she choked on them because they got stuck in the hole in the roof of her mouth. I just had to look at it from a different point of view but Dr Love is right. This surgery is (eventually) going to be great for her. I will try to update everyone on Wednesday night about how her surgery went.

Not sure if you have seen this or not but it's about a family that had a baby born 15 weeks early. So many similarities to Avery. The husband made a video for his wife's birthday regarding the first year of their son's life. Watching the video brought back so many emotions that I experienced when Avery was in the NICU. Even though this video didn't have Avery in it, I feel like it tells her story. Click the link below to watch it.

http://vimeo.com/78393869

I love my fridge toy. 

Look, I have all these toys but I like playing with diapers instead!

 Read my shirt...it's so true!

Playing with Daddy

I wasn't very happy meeting Santa because the last time I met him I was in the NICU.

Kaitlin came over the other day to play with me.

Here is my first Citrus Lane box. Mommy is going to wrap it up and give it to me for Christmas. I think I am going to love getting these boxes every month.

I am Wall to Wall Plumbing's biggest fan!

Happy Birthday Daddy! We love you!