Day 124 in the NICU- December 31, 2012

Well Avery was supposed to be getting transferred today to Main Campus in order to have surgery on Wednesday for the peg tube. They told me she was going to get transferred sometime after 4 because Main Campus NICU was full and they had to wait for someone to get discharged before she could be transferred there. I got up to the NICU around 3:15 since I figured it would be a long day. Well 5:00 comes around and we still hadn't heard anything. Then around 6:30 they said that they aren't going to transport her tonight because of the weather. Not 5 minutes later, they came back in and said that they don't have a transport nurse for her tomorrow so she is going to be transported at some point tonight. I was right when I said it is going to be a long night. It's about 7:30 now and we have no idea when she is going to get transported.

Here are some pictures of (hopefully) her last night at Hillcrest.

I cuddled with Mommy for about 3 hours  :-) I am cuddling with Daddy now as Mommy writes this

Those are some nice thighs if I do say so myself, hence the needing the #1 diaper size now

I love laying like this on Mommy and Daddy

Day 123 in the NICU- December 30, 2012

Avery is 4 months old today!

It's hard to believe that Avery is 4 months old already. I remember her being the frail, 1 lb 8oz baby and now she is now a 7.02lb little girl! She is also now in Size 1 diapers. Her thighs were too fat for newborn diapers :-)  This is most likely (for real this time) going to be her last night at Hillcrest. The doctors are going to be sending her to Main Campus tomorrow to prepare for her upcoming surgery on Wednesday. We are nervous but excited because that means she is one step closer to coming home. They will transport her tomorrow and have a day to assess her and get to know her and then they will perform the peg tube surgery on Wednesday. We were told it will be a few days of recovery and teaching us how to use/clean the peg tube and then she should be able to come home! (John, are you reading this? I might be on leave soon!) We are trying not to get our hopes up too high because plans are always changing around here. Tim and I have decided to go home and make sure her room is ready :-)

Hey, you can't see my chins from this angle

 Oh, there they are

Mommy says I snore just like Daddy

I took a bunch of pictures tonight. Here they are.......

Day 122 in the NICU- December 29, 2012

Not much going on today. Tim spent the night in the NICU and Avery was up for almost 4 hours crying. Needless to say, he didn't get much sleep. Avery is now 6 lbs 13oz and is 19 1/4 inches long. She was tired and fussy today. She only took 5ml at her 8am feeding and 3ml at her 2pm feeding. We are really hoping to set up her surgery because at this time, she is not improving at the NICU so she might as well be home.

Sleeping good for Mommy since I was up all night with Daddy

 I am so cute

Ballerina feet!

 I don't know what I am doing in this picture.

 I have chubby hands

This outfit has cute little bows on the sleeves

 Ruffle butt (or maybe it's a tutu because this outfit has ballet slippers on it). This picture is good for showing off the bald spot on my head.

Day 121 in the NICU- December 28, 2012

I am exhausted so this post is going to be pretty short. I worked from 7am-5:30pm, went to the hospital after work and just got home at 11pm. Have I mentioned before that I can't wait for Avery to come home?  Avery's fever went away and she finally pooped (4 times!). Not much else to update. We did let the doctors know that since Avery has been bottle feeding for probably close to a month now and hasn't shown much improvement, that we are interested in her getting the peg tube/g tube so she can finally come home and Tim and I can work with her. Right now it just seems like her progress regarding bottle feeding has stalled. If it's going to be stalled, she might as well be comfortable at home instead of in the same NICU room she has been for the past almost  months. There is talk about scheduling the surgery at the end of next week. I am not getting my hopes up because we all know every 5 minutes things change in the NICU.

Sorry, no captions tonight. I am too tired. I am falling asleep while I write this.

Day 120 in the NICU- December 27, 2012

Wow, things change in a manner of minutes in the NICU. I loaded up all of Avery's belongings that she has managed to collect these past 4 months and took them to the car. When I got back to her room I found out she wasn't going anywhere. Rehab refused to take her because she was still desatting. The doctors at Hillcrest aren't concerned about it because she brings herself right back up with no intervention from the doctors or nurses. Rehab said their nurse to patient ratio can't handle monitoring Avery for desats. Anyways, now the game plan is to stay at Hillcrest, keep working with Avery on bottle feeding until next week and then they will come up with a new plan.

When I was there this afternoon, Avery had a fever of 100.1. The doctors were just going to monitor it and see what happened. I just got a call tonight and it spiked to 103 so they are doing a bunch of bloodwork to make sure she doesn't have an infection. They also gave her some tylenol. I hope she feels better tomorrow.

Mommy had the day off of work so she spent a lot of time with me today.

This is how chubby the arm is of a 6lbs 12 oz baby!

I have not pooped since Christmas so my tummy hurts. Laying on my belly made it feel a little better.

Day 119 in the NICU- December 26, 2012

Well, today is Avery's last night at Hillcrest. She is being transferred to Children's Rehab tomorrow. They are going to work with her on bottle feeding for the next two weeks. After two weeks, they are then going to decide if she needs a G tube in her stomach, more therapy, or is ready to come home. I am happy we finally have a game plan. I am a little hesitant with her going there though because the thought of them transporting her scares me. Plus it's not in the greatest of neighborhoods and she is most likely going to have a roommate. Having a roommate scares me because that means other visitors will be coming into her room and I can't tell them not to come in. What if they are sick and get her sick? I am excited for her to go there though because it will be a much needed change of scenery for her. She has been in Room 22 for the past 14 weeks(the first 2 weeks she was in room 2) and only had a chance to see something different when getting her MRI and swallow study in a different part of the hospital.

Avery had a hearing test today. She passed in her left ear and they said it was inconclusive in her right ear. She will need to have a follow up audiologist appointment in 30 days. She also was supposed to be getting part of her 4 month vaccinations today and will get part of them tomorrow.

My friend Jen whose twin daughters were in the NICU sent me the below article. It's about a woman who had a baby at 23 weeks and had to decide if they should try to save her or let her go. It is a lengthy article but if you have the time, I highly recommend you read it. It is probably one of the best articles written if you would like to get a perspective on what it's like to be a NICU parent. There are 3 different parts of the story and there are some pictures and video as well.
www.tampabay.com/neverletgo

Mommy took a picture of me getting my hearing test. 

I was sound asleep when Mommy left to go drive home in the blizzard.

Day 118 in the NICU- December 25, 2012

Merry Christmas everyone! Today was a busy day. We are pretty exhausted so I am not going to write much. We asked the doctors when Avery is going to get transferred to rehab. They said most likely it will be on Thursday or Friday. She gets her 4 month shots tomorrow. Is it bad that I am secretly hoping she will have a brady tomorrow so the transfer gets delayed 5 more days?

The elf was here but now he is gone. Mommy said he went back to the North Pole and will come back next year.

I have Daddy wrapped around my little finger. I had him unwrap my Christmas present for me.

Who am I kidding? I have Mommy wrapped around my little finger too.

Merry Christmas to all and to all a good night!

Day 117 in the NICU- December 24, 2012

Avery had an okay day today. She tried a Similac bottle and seemed to do okay with it. I think she would have done much better if she wasn't so gassy. Today is Christmas Eve so I brought a gift to the hospital for Avery. Before we had Avery, every year I would buy Tim and myself some pajama pants. We would open them up on Christmas Eve and then wear them Christmas morning when opening presents. I ended up buying Avery some really cute Santa pajamas(see below).  Tomorrow is going to be a busy day. We will go over my sister's house in the morning and see my parents there. Then we will come up and hang out with Avery for awhile. After that, we will go to Tim's parents' house to eat dinner and then to his Grandma's house for the annual Christmas picture. It will definitely be a busy day tomorrow.

This is me with my Mommy and Daddy

 Look at the pretty bow in my hair

 These are my new Santa jammies

 Mommy loves these jammies. She had to show off my ruffle butt

Day 116 in the NICU- December 23, 2012

Avery still isn't doing too great with the bottle feeding. When I was there she took 15ml and when Tim was there she took 20ml and then 5ml. The doctors don't normally make any changes on the weekends. Therese from March of Dimes gave us an ornament with Avery's footprint on it. It is very cute and thoughtful. We are getting more and more impatient as the days go by. We just cannot wait for Avery to come home so we can finally feel like a real family. It is difficult going home everyday, having to leave our daughter at the hospital.

I was all cozy today when Mommy came to visit

Visions of sugar plums danced in their heads...actually, visions of a creepy elf is what is dancing in my head.

Here is the ornament Therese and I made for Mommy and Daddy