rough seas.

Avery had a rough day today, which means I had a rough day too. They think maybe her condensed feeds are giving her reflux and making her desat more. Which in turn makes her more sleepy. 
I only got to hold her for 15 minutes today because I noticed her feed tube was out and by the time the nurse got it back in she didn't think it was a good idea to resume the hold. Bill graciously offered to give up his hold tonight, but she was still having a rough day and they didn't think a hold was a good idea. It makes me feel bad because my mommy instinct tells me that she enjoys the time w/ her mommy and daddy as much as we do. But ultimately we do what they think is best for her.
She did have enough energy to go through 3 diapers in one change. That took some energy!
Avery also started wearing clothes today. They are still a little big on her but she'll catch up soon enough.

i have a chin.

Proof that there is a chin under all that tape. Avery has pulled her feeding tube out twice in the past 24 hours which means they replace it and all the tape that holds it on. So we snapped a few pics to document there really is a chin and not just tape.

Her daddy's chin



I love how she gets the same little lines on her cheeks as her daddy when she smiles.





Proof



progress.

Wow, what a busy week. Obviously the first thing to go when things get busy is the blog. Sorry!
Avery is a total rockstar. She is up to 2 lbs 14 ounces as of Wednesday night. She has tolerated her feeds well since the very beginning, but lets face it, getting fed through a tube 24 hours a day just isn't a realistic lifestyle choice. So her doctor decided yesterday to start consolidating her feeds down to shorter periods of times with the idea that soon she'll take the whole feed at one sitting every 3 hours; a more normal feeding schedule.  Yesterday was her first day and they did a 2 hour feed w/ one hour off to digest. She handled it like it was no big deal so today she is doing her feeds over 1.5 hours with 1.5 hours off. So far she has had minimal residual and her belly looks great. All these transitions mean we are getting closer and closer to her nippling her feeds and hopefully closer to her coming home.
She is also now a full time cannula baby. They went back and forth for several days but yesterday something clicked with her and she didn't tire out from being on the cannula. As long as she continues to be stable, she'll probably say adios to the CPAP from her bedside where it sits just in case. This also means her lungs are getting stronger. Today during our hold she was practically down to room air, which is fantastic. I like to think it is her way of saying "I love these holds with my momma. You should let her hold me all the time."
Avery has also started working with the Developmental Therapist. She set her up on "work out routine." Really it is a set of joint compression exercises we can do with her to help stimulate her bone and muscle development. As I stand there doing her little exercises with her I can't help but wish that I could exercise while laying in bed! Lucky girl.
As I mentioned before this has been a busy week. I return to work on Monday and am trying to fit a whole list of "to dos" in to one week. I had my 6 week follow up on Wednesday w/ my doctor and he has cleared me for regular activity that doesn't involve heavy lifting. So that means going back to work. I have mixed feeling about this. When I was on bed rest I missed work terribly and couldn't wait to get back. But now I am in such a routine that doesn't involve work, that it is hard to imagine going back. I know ultimately it will make the days go by faster and before I know it Avery will be coming home and I'll be leaving work again. But in the meantime I'm sad to give up my afternoon snuggle times w/ her. I will still be able to use my lunch break for visits, but probably won't have enough time to kangaroo care with her. Just thinking about this makes me tear up and I try not to think about it. I know I'll make the adjustment, as I have had to adjust to every new situation over the past 11 weeks.

Anyone want to preorder the adult version of this cabana? How cozy would it be?

Her first outfit courtesy of her auntie Erin. So cute.

Look at those cheeks.

Little feet

This is after her exercises. She was exhausted.

Does this paci make my face look big?

Some new additions to the nursery: stripes and the rug. I'm not 100% convinced on the rug, but maybe once I get more stuff added w/ the colors.

big little lady

Oh my goodness is our little lady growing. Every night for the past 3 nights she has put on 2 ounces and as of last night she was up to 2 pounds 10 ounces! She even has mini fat rolls. It is pretty adorable. At this rate she'll fit in her car seat before we know it. Although she has a lot more work do to than just fitting in her car seat to come home.
She is still splitting her time 50/50 between the CPAP and the high flow cannula. Hopefully in the next 24-48 hours she'll increase her time on the cannula and slowly start to ween off the CPAP. She seems to have a total distaste for at this point for the CPAP and by the time we opened her bed up today for her 4:30 care she had it ripped off her face.
Other than that we are slowly starting to talk more about her progressing her feeding to prepare for nippling. Sometime soon she'll stop the continuous feeds and take her feeds every 3 hours through her tube but all at once. And then the next step is starting to introduce her to nippling. I can't wait to feed her some other way than directly to her belly. I watch her suck on her little pacifier and hope she is developing the skills she'll need to succeed at the bottle or breast or both.
Avery also had her first non-grandparent visit this weekend. She is very limited in her authorized visitors while in the NICU and according to the staff only her aunts and uncles are allowed for visits beyond us and grandparents. So this weekend while my sister and brother in law were in town they went up for a visit since she has been doing so well. And boy did she turn on the charm. Avery was on her best behavior. Better than I have seen her be in a long time. Super calm and cute and just stared at her Auntie Erin. It is SOOO hard not being able to introduce her to everyone. I can hardly wait for that day. In the meantime, we share as much of our experience as we can on here and update pictures as often as possible (although she is making it tough to keep up with her). But soon enough we'll be screening visitors at our door for the healthy status and making everyone wash and sanitize so we can introduce her to the world :)
Yesterday the crib arrived! We put it together today. Well I sat and watched Bill and helped out a bit. It was super easy to assemble and I love the final product. Thanks Grammy and Papa for the crib. Avery is going to love it!

Visiting with her auntie Erin

The crib.

Look at her rolls! I love them :)

its the littlest things...

I know I said in the last post I would write more because I was too tired well apparently I am still tired because I am just now getting to it. Sorry for the delay.
So let's see where do we start. On Sunday Avery celebrated her one month birthday. She also hit the one thousand gram mark which means....no more gloves. I must say that Monday morning when I did her first care without gloves it was amazing. She has the softest baby skin ever and holding her little hand skin on skin is so much better than with those silly gloves. I must say that without a doubt the ONLY thing I will miss about those gloves is the smell. This may sound weird, but even after getting home from the hospital my hands would still smell like the gloves and I connected that smell to Avery. I won't miss that smell enough to want to start wearing the gloves again and if I do miss it, Bill accumulated a nice little stash over the first month that sits on his dresser.
Avery has also double her birth weight. Check that. As of tonight she has more than doubled her birth weight. She is now up to a whopping 2 pounds 5 ounces. She is a growing machine. The bigger she gets the stronger she gets. Both physically and with other things like her breathing. I my non-medical opinion, I think if she keeps it up, she will be off the cpap and strictly on the cannula in no time.
We are now back to 2 holds a day and they are letting us hold her for longer each time. Today I held her for a total of almost 2 hours between the 2 holds (Bill has pool on Tuesday, so I get both holds :)). While I wish I could hold her for hours longer, 2 hours feels like infinity compared to not getting to hold her at all.
She also had her one month head scan today and more good news--no bleeds! By now the chances of her getting a bleed are significantly less since she hit the one month mark. Yea! And the little spot they saw in the previous 2 scans has not grown and they are now saying it may be part of "normal growth development" but will continue to watch it.
Avery's first Halloween was a huge success. I made her a hula girl costume and she was super adorable. The nurses all got a good kick out it and she even made the picture wall. It was fun having her be part of the day even though she was in the NICU.
Today I was reminded that it truly is the littlest things in life that matter. Avery was having some trouble with her feeding tube and needed to have it replaced. I just happened to be there for her care time when this happened. They decided to change out the duaderm on her chin at the same time and for the first time I got to look at her chin. I know this may seem silly, but at that moment when I was looking for the first time at her littlest chin, I saw the littlest dimple and realized she has the littlest version of her daddy's chin, something we didn't know for the first month of her life. And that little chin gave me the biggest moment of joy. It was an adorable, recognizable reminder that in these crazy days the little things are so important.

Our first hand hold w/out gloves

Sucking her thumb.

Avery's first Hula-ween :)

what a difference a month makes...

Today is Avery's 1 month birthday and to celebrate we took some comparative pictures. They really speak for themselves. I have more to write but I'm too tired so I'll post again tomorrow.



One day...

 

One month



the fun stuff

Through all the ups and downs we have started working on some of the fun stuff of expecting a baby, like putting together the nursery. Earlier in the summer Bill and I pretty much gutted the room next to ours in preparation of setting it up as the nursery. My mom and sister Jill came over and helped Bill install hardwood floors and paint the walls. Bill put up the wainscoting and that's as far as we made it until this weekend. This weekend we bought the first piece of furniture. A beautiful custom piece done by a fabulous little shop call Paint in my Hair. I had been looking for pieces of furniture on Craigslist when I came across one of their postings. I started reading their blog and just loved the stuff they did, so when my mom was in town this weekend I suggested we make a visit.
We found a perfect dresser that was already in the process of being finished, and Justin, the owner said if we wanted it I could pick a color to finish it in. I hadn't really settled on a color pallet for Avery's room yet, so under pressure I picked a beautiful yellow color. The top had already been finished in a dark stain and the combination is gorgeous!
Check out their blog for some pictures of the finished piece and all their other stuff. I love supporting local businesses, especially ones with fantastic stuff like theirs! I'm already brainstorming what I can get from them next or have them refinish. Better yet, maybe I'll take one of their classes...:)
Paint in My Hair: http://paintinmyhair.blogspot.com
Here are some pictures of the progress so far. I'll be sure to post more as we complete the transformation. And check back later for one month birthday pictures.

Blank slate

I guess once you rip the carpet out you're committed to new floors

Bill vs. the curtain holder thing. Bill thinks he won cause it is no longer on the wall. I beg to differ.

Floors are in and looking oh so pretty

Getting closer...

The walls look blueish in the pictures but they are actually a very light grey.