Day 21 at Home- January 30, 2013

Avery is 5 months old today!

 

It's hard to believe that Avery is 5 months old already(corrected age almost 2 months) and that she has been home for 3 weeks now. I enjoy each day more and more because she seems to cry less and less :-)

 

 We had Help Me Grow come out today to assess her. Patty from Help Me Grow says they just changed the way they do assessments and don't take corrected age into account anymore. (Corrected age is the age she would be had she been born on/near her due date). So they are assessing her like a "normal" 5 month old. She observed her and did a few tests like ringing a bell to see if Avery was startled. Avery does not get startled. I think listening to alarms and all the commotion for 132 days in the NICU has caused her to tune out any noises..which is good because she can sleep through our dogs barking constantly. She is pretty much behind in every aspect of development. The one thing she was good at is looking at you and listening to you when you talk to her. Tim got up a few times during the assessment and her eyes would follow him walking out of the room. Looking at the bright side of things, by her being behind in everything, we qualify for pretty much whatever services we are interested in.

 

We think we would benefit from Occupational Therapy and a dietitian to help with the feeding concerns. I asked if it matters that I could get OT through my insurance and she said no. She said I can go through Help Me Grow, the Cleveland Clinic or both. We decided we are interested in whatever services we could get because it's free (I have to pay a copay every time I go see someone with the Cleveland Clinic and if it's at Main Campus we would have to pay for parking) and we don't even have to leave our house which is a bonus since everyone is talking about what a horrible flu season it is this year. Plus trying to coordinate going to appointments with her feeding schedule is rough. It's not like we could just bring a bottle with us to appointments. We would have to lug around her feeding pump and supplies and then find some place to plug it in for an hour. 

 

The Home Care nurse is coming on Friday for another weight check.

 

Mommy and I smiling for the camera...oh wait, I don't really smile that much yet. I do kind of look like a bad ass in this picture

Daddy holding me

I took a nap in my crib for about an hour the other day

Mommy tried to get a picture of my pouty face. My lower lip sticks out a lot when I am pouty. She will get a better pic of this because I make this face all the time

Grandma S came to see me today

 

Mommy and I took a nap on the couch today

 

 

 

 

 

 

 

Day 18 at Home- January 27, 2013

There is not much to update so this post will mostly be filled with pictures which is what everyone likes anyways. We are still using the Gerber Good Starts Soothe formula. We have used the gripe water a few times since the last posting and it has continued to work pretty well.
 Avery is now 8 pounds. She is gaining weight but not as much as they want her to be gaining. She is gaining about 7 grams a day and they want her to gaining about 35. Home care will most likely be coming this week for another weight check. Help Me Grow is also coming this week to perform a 2 hour assessment on Avery to see what kind of services she might need.

Chilling in my swing (Thanks Doug and Michele!)

Hanging out with Daddy

 Hanging out with Mommy

Scarlett likes to think the Boppy is her pillow instead of mine

Grandma Deb came to visit me! Mommy used to work with her at CCF Independence

I am looking mighty cute in this picture

I was helping Mommy with an art project. Then Chewie ran past and the buttons went everywhere. He is a crazy boy sometimes

But sometimes he is the sweetest boy ever

I actually like bath time

Trying out tummy time. (Thanks Nichole and Theresa for the play mat)

Mommy tried to dress me up cute but I wasn't happy

 

This my attempt at a smile. I don't do it very often so I am not very good at it yet.

Aunt Terri came to visit me!

 Trying to hold my paci

Mommy says my snoring sounds like a kitten purring

Day 14 at Home- January 23, 2013

We had the appointment with Infant Nutrition at Shaker Rehab on Tuesday. They seem to think her crying is just colic, though they didn't see us tube feed her. The physical therapist tried feeding Avery and she cried during most of it. She ended up taking 10ml which is what she takes on average for Tim and I. The dietitian said we can stay on the Gerber Good Starts Soothe for the full week. If we don't see an improvement, she recommends we go back to Neosure. Main campus had us making her formula 22 calorie and the dietitian recommended making it 27 calorie. Avery is gaining weight but not as much as they would like (probably because she was crying constantly and using up calories). We have a follow up appointment in two weeks.

When Tim and I left that appointment, the first thing we did was look up home remedies for colic. Tim's friend recommended something called gripe water. (Thank you Sam!!) We bought some on Tuesday and after Avery cried for over an hour and a half we decided to give it a try. We gave her less than the recommended dose for her corrected age and in less than 4 minutes, she was a completely different baby. It was AMAZING! I highly recommend it to anyone whose baby constantly cries. Tim and I both tasted it just to see what it was like. It just tasted a little sweet.  We used it last night around 7pm and then around 12:30 and both times Avery stopped crying. She has been okay today and only cried when she was hungry or pooped out of her diaper all the way up her back. (Thank you mom for cleaning up her outfit).

Avery took 29ml for me from the bottle tonight. That is the most she has taken since she has been home. I was quite proud of her! The home care nurse is coming tomorrow morning for a weight check.   I will update again on Sunday, unless something amazing happens like Avery takes a whole bottle :-)

This is me waiting patiently for my Nutrition appointment on Tuesday

 

I love this stuff (and so do Mommy and Daddy!)

I need to learn to keep the pacifier in my mouth so Mommy and Daddy don't have to hold it for me all the time.

The other day I was eating lunch while watching Scarlett on the couch. (Mommy couldn't get both of us in the picture so Scarlett's head is cut off)

Sleeping so peacefully

Hi guys!

Day 11 at Home- January 20, 2013

Not much has happened in the past few days. Avery is still crying pretty much with every feed. We have switched formulas yet again. We are now trying Gerber Good Starts Soothe..its supposed to help with babies that cry all the time, have colic and is gentle on the stomach. It could take between 0-7 days for it to start working so I think we are going to try to hold out the 7 days and see what happens. On Tuesday we have our appointment with the feeding clinic. We are going to bring every bottle and every formula we have tried, her feeding pump and 1000's of questions with us.

Today, Avery's cousin, Eddie, got to meet her for the first time. He was very excited. He held her for a few minutes and then Kaitlin wanted to hold her and he didn't want to let her go. I will update again on Wednesday :-)

I am sleeping like a little burrito

This is my cousin, Eddie, holding me

My cousins, Eddie and Kaitlin, and Aunt Janet came to visit today

I am sleeping peacefully for once!

Day 9 at Home- January 18, 2013

There isn't much to update today. I wanted to write to let you know that I am going to be taking a little time off and only writing every few days now unless something amazing happens..like Avery takes a full bottle.  I think I will write every Sunday and Wednesday so you guys don't have to keep checking it every day.. We are currently at 27000+ views which is amazing to me!

Hanging out with Mommy this afternoon.

Sometimes I look so cute and act perfect!

 

 

Daddy was fixing my Halo sleep sack and made me look like an angel :-)

 

Daddy and I took a nap together on the couch today

Day 8 at Home- January 17, 2013

Avery had a great night but a rough day today. I'm not sure that formula is the answer. Similac Sensitive is milk based. It's possible we might have to try Alimentum which is hypoallergenic. We will wait until after speaking with the nutritionist next week before changing anything else.

Help Me Grow came to visit today. They asked us a few questions about what we hope to accomplish. Our main goal is to get Avery to take a whole feed from a bottle. She then talked about services they provide. They can follow her until she is 3 years old. We made an appointment for January 30 for them to come out and assess her. It normally takes about 2 hours. After the assessment, the case manager will review the results and then come see us and we will discuss what types of visits would be beneficial for Avery such as PT/OT, etc. and how often we would like them to come (weekly, biweekly or monthly). The best part is that it is all free of charge. What would be great is if we could end up getting PT/OT to come here instead of us having to drag her out in the cold.

This is my buddy Chewie. He comes and looks in my crib every night before bed to check on me.

This is the life..sitting back while getting fed and not having to do anything. Mommy told me not to get used to it because they are going to have me work for my food soon. (I was only like this for a couple minutes because my parents know not to leave me on the couch like this)

I took a quick nap in my crib for the first time. (Mommy was in the room putting away clothes and that is why I was allowed to have a blanket in here with me)

Day 7 at Home- January 16, 2013

Aves went to the doctor to get her second Synagis shot today. She was not a happy camper. Then we quickly visited Internal Medicine where I used to work and everyone got to see how cute she is. I made the executive decision to change her formula this evening. There is no reason she needs to be screaming and kicking at every feeding. We are going to try it for a little while and see how it goes. We are now using Similac Sensitive. She seems to be doing well on it. There is no crying during the feeding and none afterward. It's pretty amazing. We will be having a bunch of appointments coming up soon and this is why I don't have a problem making the decision about her formula. Next week we have the Nutrition/Bottle Feeding appointment with Children's rehab. During that appointment, we meet with a Nurse Practioner, Speech, PT/OT and a dietitian. We will discuss all of our concerns about her formula with them next week. Tim and I have decided that we can't wait a whole week before changing her formula. Avery always seems to be in pain when getting fed and it makes us feel like horrible parents that we can't do anything to help her so we finally decided to change....at least for now.

Tomorrow, Help Me Grow is coming to meet Avery and do an assessment. Help Me Grow is a state wide program that offers early intervention and developmental services. I have heard from a few people who have had preemie babies that say they loved having Help Me Grow come out. The services are provided free of charge and they come out to your house, typically once a month. Here is some more info about Help Me Grow..
http://www.helpmegrow.org/

I got a Bugs Bunny bandaid when I got my shot today. I can't believe Mommy is showing everyone my huge thighs

Mommy and I were talking to each other this afternoon

 

I like to watch HGTV just like Mommy does

 

This is a rare moment where I am sleeping like an angel

Day 6 at Home- January 15, 2013

There isn't much to update today. Avery is still having a lot of trouble with feeding. We are thinking about changing her formula again. How do we know she isn't allergic to milk? She seemed like a different baby when we fed her the Similac Sensitive. The pediatrician told us that there is something in there that isn't going to be good for her in the long run. I don't think what's happening everyday (crying for hours and hours at a time) is good for her either. She probably wastes all of her calories that we put through her g tube on crying and screaming. Tomorrow she has an appointment for her second Synagis vaccine.

 

 

 

 ***No captions tonight because Aves was screaming***

Day 5 at Home- January 14, 2013

Not much happened today. We went for a car ride to my work to fax some paperwork and for Tim to get some plumbing things straightened out. Avery seems to like car rides. Then this evening my parents came over and watched Avery. We did some exciting things such as go to Toys R Us and Old Time Pottery. (I feel like the movie "Old School" right here, but we didn't go to Home Depot or Bed Bath and Beyond). We bought a new bottle to try out. What a surprise, Avery doesn't seem to like it. She is still screaming for hours at a time. I am slowly starting to get used to it. It's about 10:30pm now, almost time for Avery's daily screaming fit that usually lasts for four hours. I better go have a glass of wine :-)

I think I am starting to like this chair

I still have a boo boo from the IV almost two weeks ago

I am all snuggled in my car seat. Sometimes I like to chew on the stuffed dogs on my car seat straps.

This thing likes to lick my head a lot

 

 Hanging out this afternoon