Mother's Day

I'm sorry I am a little behind on posting. I have a bunch of pictures to share. Avery has been doing well being out of daycare except for today. She had a fever last night of 100.5 and then in the middle of the night it was 101.5 and this afternoon it was 103. Besides the fever, she has been a little more clingy than normal. I don't notice any coughing so I am hoping {fingers crossed} that this is just a fever from teething. She has about 11 teeth now and it seems more are popping through.

For Mother's day Tim asked me what I wanted to do and I decided I wanted to take Avery and the dogs to Bow Wow Beach in Stow. We had never been there before but it seemed like it would be really cool. It is a 7 1/2 acre property that is fully fenced with a 3 acre lake in the middle, a beach, grassy area and a dock that dogs could jump off of. The weather was awesome on Mother's Day. We got to Bow Wow Beach and there is a sign that said no one under 48 inches is allowed in :-( Booo, Avery couldn't go in. I am assuming because A) some dogs hate kids and B)some kids love to chase dogs. Avery and I sat outside the fence and she ended up having a great time. Every time a dog ran past us, she waved her hands in the air and made noises at it. She loved it!

We saw my mom and family on Mother's Day but didn't get to see Tim's. Tim's mom had laryngitis but we didn't want to chance it so we decided not to visit. We still have a present for you! We will come over some day soon!

The other day I was trying to organize Avery's millions of plastic totes of clothes she has and I took out the preemie clothes to reminisce. It is so hard to believe that those clothes used to be too big on her!

Me and my brother and sister decided to watch Daddy work in the yard

Look guys, there's Daddy!

Hi Daddy!

Hey, how did you get on that side of the door Chewie?

Check out these pants. Supposedly I used to be able to fit in them.

Giving Mommy some hugs

Look how I have grown!

Preemie onesie with feet compared to 6-9 month onesie without feet!

Look how long my hair is getting

My legs look huge in this picture

Mmm popcorn...this could be how I got the huge legs

Chewie, would you like to eat my hair bow?

We went to the zoo again. I was waiving at all the animals

That is one weird looking dog. 

This weird looking dog wanted to get close to me so it jumped right over by me.. Mommy had to move me away because she didn't know if it was going to bite. Mommy later told me it wasn't a dog

Hanging outside with Mommy and Daddy

Me and Mommy...Sophie photobombed the picture in the background

We took a family selfie

How cute am I? I am posing and everything

Daddy is trying to pose..I was like, what are you doing? I can pose much better than he can

Aunt Janet, Eddie, Grandma B, Mommy and Kaitlin on Mother's Day

Mommy and I posing

Bow Wow Beach!

Hanging out at Bow Wow Beach. One of my favorite new places!

Grocery shopping with Mommy and Daddy

I just wanted to look through the mail

I don't remember what we were looking at but it must have been interesting since me, Mommy, Chewie, Scarlett, Sophie and Lily were all looking at it.

I have a lot of toys but I have fun playing with the cat food

I thought Mommy might get hungry so I put some food in her purse. Hey, I even gave her chicken flavored

Daddy and I got Mommy an orchid and I decorated the container with my foot prints and hand prints.

Here is a close up (Daddy traced my hands and feet and put the cut outs on the pot)

Hanging out with Mommy

Avery got her weekends mixed up

I think she thought this weekend was mothers day(since she seems to like to spend holidays in the hospital) because she decided she wanted to get taken to the hospital in an ambulance and get admitted. On Friday she had an appointment scheduled with her pediatrician for a hospital follow up from last week and for a cough. She was doing well after getting discharged last Thursday from Fairview. She went to daycare on Monday, Tuesday and half a day Wednesday and  when we picked up her on Wednesday, daycare said she was coughing the whole time. We kept her home on Thursday and debated on sending her to daycare on Friday. Friday morning she didn't seem to be feeling that great and was coughing still so Tim rearranged his plumbing jobs (his poor customers , thankfully they are understanding) and took her to her follow up appointment.

They took her pulse ox and it was in the low 80's so they decided to call the ambulance to take her to the ER downtown. I was in a meeting at work when Dr Love called and told me what was going on.. Definitely not the call you ever want to get, saying your daughter is having breathing problems and is being taken to the hospital by ambulance. 

I went straight to main campus ER from work since I work close to downtown. When I walked in I heard someone's alarms going off and I thought to myself, please don't be Avery's room please don't be Avery's room and low and behold, it was Avery's room. Itwas very scary because there were about 10 people in her room trying to get her stabilized and it was pretty chaotic. Definitely not what I was expecting to walk into. When I got there Tim was holding onto Avery's arms and trying to keep them away from everyone poking her. I then took over to give Tim a break. Right after I started holding onto Avery, Tim started crying. It is definitely hard not to cry when she is staring up at you while you are holding her down while everyone is poking her and working on her. I didn't cry while I was holding her because I didn't want Avery to see my cry. I think it would have made her more scared. The doctor told me they couldn't get an IV started and they might have to do an IV through her bone. They reassured me that the bone didn't have nerves, etc so it wouldn't hurt that much. I know they were trying to calm me down because how can drilling through bone not hurt? They had another doctor come in and try to get an IV started which failed. All in all they tried 8 different times in various places and still couldn't started one. They decided to give her a break for a second since her heart rate was really high. We tried giving her some pedialyte by bottle along with pushing some through her gtube. She seemed to perk up after that. She ended up stabilizing and they never did end up needing an IV. Thankfully they didn't do the one through her bone. 

She was transported up to our home away from home, M33(children's hospital). When she got up there she didn't even need oxygen. She still wasn't feeling good but she looked much better than 20 minutes before. 

She had a cough, congestion and green goop in her eyes. They said the eye discharge is most likely from the viral infection and not pink eye since her eyes weren't red at all. They hooked her up to a pulse ox machine and she was maintaining herself without needing any oxygen. They suspected a respiratory virus again (or it was still from last week) so the plan was to observe her, give her oxygen if needed and make sure she was eating and drinking. 

Spending the night there was rough. She woke up about 4 times, sometimes wanting to eat and sometimes due to coughing.  In the morning, she was still having a very moist cough but they said she seemed well enough to go home considering she never ended up needing any oxygen assistance while on the floor. She got discharged around 1:30pm on Saturday. 

Last night was rough again and she woke up 4 times. Tim and I are completely exhausted because we are still trying to play catch up from last week. She seems to be feeling pretty well except her cough sounds horrible and she is very congested. 

We have decided to pull Avery out of daycare yet again for about a month to a month and a half and see how it goes. All of us need a break and we can't keep going to the hospital every week. She did fine in daycare last summer(she started in June)except for a few times she had a bad cough which required no ER trips or hospital stays.  We are still working on arrangements for various members of Tim's family to come watch her here at home for a short term solution but we need to come up with a long term solution. If she can't go to daycare in the summer, we are going to have to find a different solution.

It would make sense for me to be at home with her because Tim could make a lot more money than I can but the only reason I am still working and not staying at home with her is because of the health insurance. We get such great benefits with the clinic and we can't give that up right now because of all of Avery's issues.  I suggested me possibly quitting my current job and getting a part time job with the Cleveland clinic and working a few days a week so we could keep our health insurance and Tim would have two definite days he could work while I would be home with her a few days. 

We talked about possibly having an in home sitter or maybe someone who watches only one other baby. 

We also talked about Tim going back to working nights and weekends. I think this is going to be a last resort because 1. We would never see each other and 2. None of us would ever get a break.

I know even if Avery ends up doing ok in daycare in the summer we are probably going to have to pull her out again next winter so that is something else to think about. 

See all that stuff at the bottom of the bed. That's all the stuff they used to try to get an IV in me. 

Drinking some pedialyte with mommy 

Starting to feel better. I was playing with a spider toy they gave me in the ER, watching some tv and hitting mommy in the face with a cup. 

More playing.. 

I am ready to break out of this joint. I am getting discharged today!

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