Avery's Adventure

Wednesday, April 23, 2014

Another Holiday, Another Trip to the Hospital

Sorry that it has been awhile since the last post. We ALMOST made it through a holiday without spending any time at the hospital. Avery has been battling a cough for a few weeks and she has had a fever off and on for about the same amount of time. Avery was doing well on Easter. I thought she was fussy because she hadn't napped the whole day. We went to Tim's parents for dinner and Avery fell asleep on the way there. (They only live 4 streets away from us). Avery slept the whole time we were eating and woke up afterwards while we were sitting around talking. She was being fussy and didn't seem very happy and I thought it was just because she was still tired. She felt hot so we took her temp when we got home and it was 103. We gave her some tylenol. Before bed we gave her some Advil. She woke up screaming at 11pm. Tim went into her room and said she was burning up. We quickly gave her some tylenol and then took her temp. It was 105. She has never had a temp that high. She became lethargic and her eyes were rolling back in her head. We didn't know what to do so we called 911 and put a wet wash cloth on her forehead. Out of all the times Avery has been sick, I have never been so scared. When Tim was talking to the dispatcher on the phone, he was tearing up and could hardly tell them our address. The paramedics came to our house and she was still lethargic. They took her pulse ox and it was 98 so that made me feel a little better. They asked us a few questions and she became more alert. They said she was stable enough for us to transport to the hospital or they could take her to Parma. I asked them if she was ok enough for us to take her to Fairview and they said yes. Nothing against Parma Hospital but all of her records are at Fairview since its a Cleveland Clinic hospital. It made more sense for us to take her there.

We got to the hospital and Avery cried most of the time. They took her pulse ox (98) and her temp which dropped to 100.4. They did a chest xray and a strep test and said she was fine and sent us home. They probably thought we were crazy taking her to the ER.

I stayed home from work with Avery on Monday because she still wasn't feeling well. After alternating Tylenol and Advil the whole day, her temp never dropped below 100.7. When Tim got home from work, it seemed like every time she exhaled, she was in pain. We gave her a couple breathing treatments but she was inconsolable. She was crying no matter what we did. I texted her doctor (did I ever mention I love her doctor?) and she called me and asked us a few questions. We made an appointment with her on Tuesday at 10am at the Broadview Hts location. I knew that since she wasn't at Independence, that I would probably end up having to go to Independence anyway for blood work and xrays since the Broadview Hts office doesn't have that equipment there.

She looked Avery over and her temp was 100.6. ( I brought our thermometer with me to compare and mine said 100.4 so it was pretty close. I definitely believe the 105 temp from the other night now.) She was ok for a few minutes and she ended up crying and being inconsolable. Dr Love knows Avery and has seen her a million times and knew there was something just not right with her today.

I told her the night before that her gtube has been randomly leaking a little bit. She looked it over today and sure enough, Avery had some stuff on her onesie right by her gtube. She also looked at the fistula in her mouth and said it looked much bigger than when she saw her a few weeks ago. The plan was to flush out her ears, then go to Independence to get blood work and a chest xray and abdominal xray, then come back to Broadview Hts to go over everything. While I was doing that stuff, the doctor was going to call the surgeon regarding her gtube and the doctor regarding her fistula.

After some crying, we managed to get everything done and came back to Broadview Hts. Dr Love talked to Dr Seifarth regarding the gtube. For those of you that don't remember, he is one of the most beautiful doctors in the country..lol. He didn't understand why the attending doctor put her gtube in went it fell out in February. According to him, the doctor should have called a surgeon to do it so it's possible its not in the correct place. We agreed to make an appointment with Dr Seifarth's office, get it looked at and most likely exchange it for the mini button.

She also called Dr Doumit and he said the only way the fistula would have gotten that big was due to physical trauma, meaning something she put in her mouth poked and split it open. She doesn't put very many things in her mouth these days so I have no idea what it could have been. We are going to move up our appointment with Dr Doumit to sometime in May.

Dr Love looked in her ears and there was no sign of infection. If I was ever hoping for Avery's ears to be infected, today would have been the day. It would have been a simple fix and it would have explained the fever and random fussiness.

We went over the xrays and she said that it looks like Avery has a little bit of atelectasis (where part of the lung collapses or doesn't inflate correctly) and bronchiolitis. She said she wasn't concerned about this because her pulse ox was good and if this was causing her discomfort, it would be constant and not like the intermittent pain she is having. This was not the cause of her random fussiness.

She said she got to thinking when I called her on Monday night about the random bouts of fussiness and what could be causing it. She thought maybe it could be intussusception, where a piece of bowel slides into the next, much like a telescope. This could cause a bowel obstruction and one of the main symptoms is sudden loud crying or grunting which was exactly what was going on. Another symptom of this would be bloody stool. Avery has not had any bloody stool but she decided to check anyway. She then gave Avery a rectal examine , said the stool felt hard, and examined the stool to see if there was blood. No blood was noted which was a good sign.

After that Avery had to get a catheter inserted to get a urine sample. I was the lucky person to hold her legs. She is soooooo strong...or maybe I am a wimp(which is likely) but I had trouble holding her legs. The initial urine test came back negative but we have to wait for the sample.

Doctor love told us to go home and wait for the other bloodwork to come back. She said if some of her tests came back elevated, we would have to go to the hospital.

We ended up putting Avery to bed around 9:45 on Tuesday. Around 10:30pm we got the call regarding her results and it wasn't the news we were hoping for....

Here are some pics from the past week...

I think it's time to baby proof the drawers and cabinets mom and dad.

Thanks Chuck and Heather for my bunny!

Thanks grandma and grandpa for my basket!

Puzzles at the library. I liked throwing all the pieces on the ground.

Playing with bubbles that were in my Easter basket from Grandma and Grandpa

Riding the tram at the zoo.. We could actually go up and see the monkeys! I hardly ever go up there because mommy can't lift my stroller onto the tram while holding me (remember she said she was wimpy) Daddy came to the zoo with us this time!

Looking at the monkeys

Hey look over here, I am practically a celebrity. You should be taking a picture of me instead of mommy taking a pic of you.

Riding the tram with Daddy

Puzzles! I still don't put the pieces in the correct spot but I like to play with them.

Sophie, look a toy. Here take it! It was amazing that she didn't run away because she really isn't a fan of me

Hanging out with mommy

Playing with chalk outside. It was such a nice day on Easter

My basket from the Easter Bunny

Playing with ny new frog book

Daddy was reading to me. He hates reading but he loves me :-)

My favorite bunny, Chewie! He is so silly

Watching the dogs through the window

Look what I made at daycare. The eyes are my handprints!

Opening a basket from Uncle Greg and soon to be Aunt Lauren

I got to hang out with my cousin Christina

Family pic!

Lauren, Greg and I. I was excited to see Lauren because she used to babysit me.

Grandma and Grandpa!

The ER at Fairview Hospital

I got a chest X-ray so mommy picked this sticker out for me.

Chewie made sure I was ok the next day.

Monday, April 14, 2014

Having fun with the animals

Not much has happened this past week but I wanted to share some pictures with you guys. We attended my niece, Kaitlin's 7th and nephew, Eddie's 4th birthday party on Friday. My sister hired Outback Ray. He brought about 10-15 animals with him to educate the kids including snakes, turtles,geckos,chinchillas, etc. I thought his show was great. He was awesome with the kids and I love animals so I really enjoyed the show. I highly recommend him.

http://www.outbackray.com

Avery was sick last week and she is still having a runny nose and cough this week. She is acting like she is feeling better though so that is good.

We ended up buying a season pass to the Cleveland Metroparks Zoo. I feel that we are going to use it a great deal and it's nice being able to go for about 2-3 hours and if Avery is getting fussy, we can leave and not feel like we wasted out money because we didn't spend the whole day there. I ended up taking her there yesterday (Saturday) by myself. She did really well and her favorite thing was the petting zoo. When she saw the sheep and goats she would wave at them and make noises (like she does when she sees that the dogs are ready to come in from the outside). She wasn't really a fan of getting her picture taken while she was there but there are a few shots.

I finally got a picture of the fistula (hole) in Avery's mouth. It is right in the center, though the picture makes it look likes it's on the side, and it's about 2-3mm according to the doctor. The picture does show that Avery's two front teeth are pretty yellow. This happens a great deal in preemies. Most of the time when their adult teeth come in they will be perfectly normal and white. The reason they are yellow is most likely due to loss of enamel and high bilirubin levels whe she was in the Nicu. Remember all those days she wanted to be a diva and wore sunglasses and was under the bilirubin lights in the Nicu? I have heard of some babies whose teeth come in completely brown so a little yellow discoloration doesn't matter. It could be worse.

This is a picture of me and Daddy from when I didn't feel well last week.

Mommy finally got a pic of this fistula in my mouth. It's the dark line to the right. The picture doesn't really show the exact location. She took it on an angle and the hole is actually right in the middle of my mouth.

Time for a bath. Both dogs wanted to jump in!

It's that time of year again... The march of Dimes March for Babies walk. I am going to go with Mommy and Aunt Janet this year if the weather cooperates. This pic is from last year. Thank you Deb, Cyndi and Sharon for the donations!!

Outback Ray, Kaitlin and his big snake named Sponge bob!

Happy birthday Kaitlin and Eddie!

Look how festive I was. I wore my cheetah pants to the animal show!

Grandma and Grandpa were there too!

Having fun at the zoo!

Looking at the elephants

Posing for a pic with mommy.

The goat photo bombed this pic of mommy and I

Always remember to stop and smell the roses. (I know those aren't roses but I thought I should quote a famous saying)

Mommy and I

Hanging out with Chewie while daddy was working in the yard.

Playing in my cozy coupe. Thanks Chuck and Heather!

Mommy knew this day was coming. I almost put the cat food in my mouth thinking it was my puffs that I like to eat. Luckily Mommy stopped me right after she took this picture.

Saturday, April 5, 2014

Daycare = Sick again!

Avery started daycare this past Monday. I received a call from her teacher saying she didn't eat much. I told her not to worry, that isn't anything new. (She must take after her mother :-) ) Avery starting getting back into the swing of things and on Tuesday she napped from 12-3pm at daycare.

She had her 18 month checkup on Wednesday. She is still a little peanut. She was not on the charts at all, only weighing 14 lbs 10oz. I am not surprised. She is still behind from her cleft palate surgery, her two hospital admissions in December, and her being more mobile and almost walking. She is developing cognitively and that is what I would be more concerned about so I am not worried about her weight that much.

Well since she went to daycare on Monday and Tuesday, it was time for her to get sick. On Thursday she developed a runny nose, cough and temp. Tim said when he dropped her off at daycare there was a little boy with a snotty nose staring him down. He said he is the one who got Avery sick..lol. Avery woke up around 3am Thursday night with a bad cough. I fed her a bottle and gave her a breathing treatment. She was not feeling well on Friday morning so Tim stayed at home from work with her. Later that day her temp was 100 so Tim gave her Advil. An hour later her temp was 101.5. Her temp then increased to 102.3. I had forgotten that you can take Tylenol and Advil at the same time so my mom brought over some Tylenol. About an hour later Avery's temp had dropped. Thankfully, we didn't have to take her to the ER. Today (Saturday) her temp was 99.5 when she got up. She was in a much better mood and I gave her a little bit of Tylenol. She was in a pretty good mood the entire day.

I (and possibly Avery and Tim) will be walking in the March of Dimes, Walk for Babies walk again this year on April 27. Tim and Avery will be walking if the weather is good. I am grateful for the March of Dimes when Avery was born. We would attend support meetings every Wednesday at Hillcrest Hospital, which were sponsored by the March of Dimes. They would feed us pizza and salad (which was nice not having to worry about what to eat for dinner that night while Avery was in the nicu) and we would get to listen to other's stories/experiences about their child in the nicu. They would also give us gifts on holidays when Avery was still in the nicu. If anyone would like to donate, you can here....
http://www.marchforbabies.org/personal_page.asp?pp=4767555&ct=4&w=6685422&u=Sb4878

I submitted a video to America's Funniest Home Videos a few weeks ago. It was the one where Avery was climbing all over Chewie and then all of a sudden, he books it out of there and Avery falls on the ground. When I originally submitted it, I had to fill out a bunch of disclaimers and paperwork. I completed the necessary forms and submitted it. This past week, they emailed me to complete additional forms. I hope that means that they will be showing her video on the show. Maybe Avery and Chewie will become tv stars :-)

This is my Mommy's friend, Leanne's baby. Aria and I are going to be best friend's someday.We had breakfast this past week together. I can't wait to hang out with her more.