March for Babies

On Sunday Tim’s sister, Terri, my sister, Janet and I attended the March of Dimes March for Babies walk. It was nice that it was in the Wade Oval area instead of downtown this year. The scenery was much better to look. I was happy that it didn’t rain like it did last year. It also seemed much more organized. We didn’t have to wait in any lines for registration or free giveaways.

Being there on Sunday made me feel so proud to have a preemie and be a part of this journey with all of these amazing preemie families. I had to stop listening to the ambassador family’s speech at the start of the walk because I was starting to tear up.

I am happy I didn’t bring Avery to the walk because it was pretty cold. I don’t know why they don’t hold this walk like a month later, knowing there are going to be so many small children and babies attending.

I can’t wait to do the walk next year.

Tim and I got asked by Therese from March of Dimes to come and talk at the support meeting at Hillcrest regarding our nicu journey and what we have experienced by having a 25 weeker. I always attended the meetings on Wednesdays when Avery was in the nicu because I loved hearing about each baby’s story. I still tear up when talking about her birth and nicu stay but I am so proud of how far she has come.

This is my mommy and Aunt Janet walking for me

My Aunt Terri and Mommy. I am so happy Aunt Terri did the walk this year

Lots of people!

Even the horses were supporting March of Dimes

Look how pretty it was

Mommy and Moon Dog, the Cavs mascot

There is no place like home

Avery was doing well so the plan was to discharge her on Thursday. On Wednesday night she still hadn't pooped since Monday so we tried pushing some prune juice through her gtube to get her to poop but it didn't work. The hospital staff said they weren't going to give her anything until it had been three days without her pooping.  We ended up giving her more prune juice on Thursday morning and still nothing. I told them that she needed something to help her. I wasn't going home without her pooping. They ended up giving her a glycerin suppository and 20 minutes later she pooped. She looked so relaxed after that.  I bet it was such a relief. We got discharged around 12:30 and headed home. The dogs were excited to see her. 

Since we have been home she has been doing okay. She is definitely not 100% and I still think she is trying to poop but can't. We have tried giving her prune juice, pears, bananas, etc and still nothing. If she doesn't poop by Sunday evening, we will probably end up giving her another glycerin suppository. 

I'm sad that she was in the hospital because now she won't be able to participate in the March of Dimes March for Babies walk on Sunday. Oh well, maybe next year she will walk in it. 

She received her last Citrus Lane box this month. Tim and I decided to cancel the subscription to save money for a down payment for a new house. It wasn't that much money but every little bit helps. We also cancelled the Bark Box for our dogs. 

I am sad to see both subscriptions go since Avery and the dogs really seemed to enjoy it but we need to get out of this house. Thursday night we brought Avery home from the hospital and our neighbors (who are always drunk and yelling) were screaming at each other right after we finally got Avery to bed. Tim called over there and kindly asked them to keep it down. They just have no respect. Also, a month ago I heard what I thought was a few gunshots when I was up at 2am feeding Avery. Then that next morning around 7am heard it again. I didn't think much of it until Tim found a bullet on the ground in our garage. We called police and they investigated and it came from our neighbor diagonally behind us. It shot right through the back of our garage and ricocheted off of a few things. The case is most likely going to trial so we can't talk much about it but needless to say, that bullet could have killed us or Avery if we were in the garage 

at the time. We don't even live in a bad neighborhood but we definitely want to move and have more land away from any neighbors.

I am all ready to finally leave Fairview hospital!

The dogs were super excited to see me when I came home. I played it off like I didn't care but I really did miss them when I was at the hospital. 

My last Citrus Lane box included some bowls, a pink racecar, a storybook with cd and a puzzle (and some organic dish soap that I don't care about).

Spending the night.. I mean nights.. At Fairview

On Tuesday night we received the call from Avery's pediatrician to go to the hospital. Avery's white blood cell count and her SED right (which indirectly measures how much inflammation is in the body) was very elevated. Dr Love called the hospital and we bypassed the ER and went right to the Pediatrics floor. We got Avery settled in the room by midnight and then they gave her a shot of Rocephin (antibiotic) in her leg. They repeated her labs on Wednesday morning. They said her WBC and SED rate had lowered but they were still higher than normal. Her temp was 100.8 this morning.

Dr Seifarth ended up coming to see Avery and changing out her Mic-key button for a Mini button. He checked the placement and made sure it was inserted correctly by using a syringe and pulling back some formula Avery previously ate. Avery didn't move or cry at all when that was taking place yet she screams when they take her temp or blood pressure.

Avery's mood seemed to pick up a little and she did not want to sleep. Tim and I are completely exhausted and just wanted Avery to fall asleep. She took about a 1/2 hour nap today but that was it. She might have slept longer but then they came in to change her gtube.

Avery hasn't pooped since Monday. That is unusual for her. She normally goes everyday. They won't give her anything to help her out until its been at least 3 days. I feel like part of the pain she is experiencing is from feeling constipated. I know she has been trying to go but she just can't. We bought some prune juice and pushed just a little (3ml) through her gtube hoping it will get things moving.

We finally got a diagnosis. Avery's respiratory panel came back positive for adenorvirus. Here is a little about the adenorvirus...

http://kidshealth.org/parent/infections/lung/adenovirus.html

They decided to keep Avery for one more night to give her one more dose of Rocephin. We are waiting on the results of her urine culture and that would help if it would come back positive. I also refuse to leave until Avery poops. I feel like that is causing some of her discomfort. Praying everything goes well and she will get discharged on Thursday. I am thankful my manager and coworkers have been very understanding throughout this experience.

Here is my new crib for the next few days. 

They put this sensor on my leg so no one would steal me 

Hanging out with mommy 

"Eating" breakfast with daddy. I didn't really eat anything besides a few bites of yogurt. 

This is one of the times when I was feeling good throughout the day. I love playing with these cups. 

Check out my cool new bracelet 

I felt pretty good on Wednesday....so good that I didn't want to nap at all.

Here is Dr Seifarth putting in my new gtube. 

There is it. It took him 5 seconds to change it out and then he checked it to make sure it was in the right place. 

Hanging out with my Daddy 

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.

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.