Thursday, December 29, 2011

i've got the due date blues...

Tomorrow is a day I have been dreading…my due date. I don’t know that I can fully explain why I have been dreading it. Maybe because I had hoped Avery would be home by now. Maybe because it is a reminder that in a perfect world I would be unpleasantly plump right now willing her to come any day…any time.  Very different from three month ago when I was willing her to stay in, hold on a little longer, and not let the perfect moment for her arrival slip by without us knowing. 
I have looked forward to being a mom and being pregnant since I was little. I have watched my sisters,  friends and strangers grow and have full term babies. I have watched them swell, have sleepless nights, watch their bellies move with the baby, cringe at the stretch marks. I couldn’t wait for my turn for all of that. I didn’t get any of it.
I have had people tell me that I am ‘lucky’ to have avoided the 3 trimester and all that comes with it. I think if they walked even one day, one hour in my shoes over the past 3 months they wouldn’t think I am so lucky after all. It is unnatural as a mother to watch your baby suffer through the things Avery has been through. While she should have comfortably be cooking away inside, I watched her struggle to breath, get poked and prodded, hooked up to medical devices. She has spent her last 3 months of growing in an institution being closely monitored instead of being safely tucked away inside. There is nothing lucky about that.
The closer my due dates gets the more I find myself longing and wishing to know what it is like to be pregnant. Wondering if I will ever have a chance to know. Was Avery’s situation a fluke? Or am I destined to always have high risk pregnancies that end early? I will never know what it is like to go in to labor. I will always have a planned c-section with any future pregnancies I have.
I am so thankful that everything has worked out the way it did given the circumstances but given the choice I don’t think Bill, Avery or I would ever have picked to forgo the 3rd trimester. We have the most perfect, wonderful, amazing, strong daughter out of all of this, but the road has been tough for all of us.  Not a day goes by that I don’t feel a little bit guilty for the way things turned out—I think any mom would. 
I know I will make it through tomorrow. I strongly believe that after tomorrow passes I can put to rest some of the thoughts and feelings I have struggled with over the past 3 months. In a different, unconventional kind of way, I still have a full term baby.  We will still, hopefully, park our car outside the Women’s Center and pack up our little wonder to bring her home and make all the adjustments to having a newborn.  
In the meantime here are some pictures of Avery as she quickly approaches full term due date status. It is a big deal around the NICU. Especially for her. Hopefully someday soon, very soon, we'll be bringing her home...
Big yawns
Hanging w/ my ma. She really needs to get her hair did!
6 lbs! I'm huge. 
I LOVE bath time. 
Hi daddy. I'm being VERY serious about this bath stuff. 

It can't be over yet! 
Having a stare down with my mommy. 

Wednesday, December 28, 2011

my face is free!

Am I not just the cutest baby ever without all that silly stuff on my face. No more cannula. No more NG tube. No more sticky dots. No more duraderm.  Just a face full of cuteness.

As long as I keep eating my feeds from the bottle and keeping my O2 saturation up, my face will stay this way all the home.
I am also almost 6 pounds. Yep you read it right. 6 pounds! I'm still pretty tiny as you can tell in the above picture with my head in my daddy's hand, but I'm a growing girl. I have even out grown some of my clothes!
Hopefully soon I'll be home relaxing with my mommy and daddy. I'm working SO hard on my feeds and today I rocked it out!!

Sunday, December 25, 2011

merry christmas from our family to yours.

Our little elfkin
We watch her even when we're not there and she loves to stare it the picture.  She even lost her black and white book  (it hung on the other side of  her) privledges because she wouldn't fall asleep :)

Please stop mom!!

Just a quick update. Avery had her MRI on Christmas Eve. What a way to spend your first Christmas Eve right? Well we got the results today and they said her brain looks good. Immature, but that was expected. The little dot in her white matter that was concerning is not presenting itself as anything to worry about! Phew! 

Hope you all had a wonderful and blessed Christmas. 

Thursday, December 22, 2011

all i want for christmas... you.

I don't want a lot for Christmas
There's just one thing I need
I don't care about the presents
Underneath the Christmas tree
I just want you for my own
More than you could ever know
Make my wish come true
All I want Christmas...

Every time I hear this song on the Christmas station I can't help but think of Avery (actually I'm always thinking of her but this song especially reminds me of her). Unfortunately it does not appear as if she will be home for Christmas. There was a chance there early last week that they were telling us they were trying to get her home with us for the holidays but it just didn't happen. She still isn't taking all her feeds by bottle, although today she set a record 3 in a row and then smashed her record 3 hours later with her 4th full bottle feed! She knows the holidays are coming and is doing her best to give me my Christmas wish--to come home.  So even though it won't likely happen by Christmas, we still have New Years to shoot for :)

Yesterday we had a rough day. Avery was put back on the cannula after being off for almost 3 full days. She is at 21% oxygen which is considered room air and only needs 1/2 liter of pressure which is like a soft wiff of air, but she seems to enjoy it. Of course it was hard seeing her put back on it again, but if we have to we'll take her home on oxygen.

We also found out our little lady has kidney stones! What?! How can something so little have kidney stones. They only happened upon them when doing a kidney ultrasound looking for something else.  I of course was worried about how much pain she must be in having had a friend who described her stones as worse than labor.  And she is a full grown adult.  Avery's kidney stone is 3 mm, which is a decent size. Luckily we found out today they think they will just dissolve and we will continue to track them with ultra sounds.

On Tuesday Avery, her nurse Gayle and I did a little Intermediate Nursery photo shoot. I made her a special Christmas tutu and some Christmas tights.  Gayle rigged up some fancy backdrops and Avery did her thing. Below are all the photos from the shoot. Seriously adorable right?!

In case I don't have time to post this upcoming weekend I want to wish a Merry Christmas to everyone! I hope you enjoy time with your family and friends.  I know this Christmas we have the best present ever in Avery!

I just had my eyes dilated so this is as far as I can open them. 

This unicorn was a gift from the March of Dimes. 

Thank you Nurse Gayle for all your help setting backdrops and posing me 

Friday, December 16, 2011

a special birthday shout out

Dear Auntie Jill-
Today in honor of your birthday I weighed in at a whooping 5 lbs 6.6 ounces.  That's almost 5x's my birth weight! I'm huge.

I also ate quite a bit from the bottle today. It is exhausting, but I know I have to be able to do it to come home, so I'm trying as hard as I can.
2 days ago I got taken off the high flow cannula and am on 1 liter oxygen flow at mostly room air. So far so good. I'm a little sleepier than normal, but I'll get it all figured out.
The nurses say they are trying to get me home for Christmas. I hope so.
I can't wait to meet you auntie, but I love you and hope you had a great birthday. Until we can meet here are some pictures of me being all sorts of cute. It is what I do best!
Love you! Avery

Monday, December 12, 2011

2 posts. 1 day.

Just a post of cute pictures but make sure you read below for my previous post on the baby shower and an Avery update...
I LOVE how she is clasping her hands. So sweet.

Pouty lips.

Helping daddy hold the bottle.

Pretty girl

showered with love.

Saturday 2 of my dear, dear girlfriends hosted a baby shower for Avery and I. I can say without hesitation that it was not what I EVER expected my baby shower to be like because 1) I wasn’t pregnant and 2) since I wasn’t pregnant I was able to enjoy a mimosa. I did however wear a maternity dress I bought the week before I was put on bed rest. I never had a chance to wear it and if I was ever going to feel 100% ok with wearing maternity clothes AFTER having a baby, this was the day (don't get me wrong...I still love to rock the spandex waist banded pants not because I so much need to anymore but because they are so much more comfy than non-spandex waist banded pants!)HUGE shout out to Twyla and Meagan for planning such a great event. The food was delicious, the company was great and the memories will last forever.
My lovely hostesses
Bill, Avery and I are surrounded by wonderful friends and family who have generously given us their love, support, and gifts! We are very lucky.
Avery is doing well these days. She is still on the high flow cannula, but only at 2 liters. The Developmental Therapist came up with a compromise that allows us to lower her flow to 1 liter while she nipples her feeds and then turn her back up when she is done. This is a best of both worlds kind of situation because it allows her to work on her nippling without the constant airflow in her nasal passage and gives her the extra pressure to rest her lungs when she is done with all that hard work. It seems to be working well. She at 2 full feeds yesterday-one from bottle, one from breast and ate her full feed from breast at lunch today!
She is 2 days in to a 3 day round of immunizations. They seem to knock her energy level down quite a bit but for the most part she is tolerating them well. Tonight she will get her last cocktail shot and then at some point they will give her the immunization for RSV.
She has been on a growing plateau for the past 3 nights. She hit the 4 lbs 15.7 ounces mark on Friday night, so we just rounded up to say she was 5 lbs thinking that for sure the next few nights she would officially go over that hump. Wrong. She continues to stay steady at 4 lbs. 15.7 ounces.  I still can’t believe sometimes how far she has come in terms of her growth.
I’m working on a fun, holiday themed post for sometime in the near future…so stay tuned!

Look at all that loot!

Twyla's got cupcake making skills.

Wednesday, December 7, 2011

that point.

I'm sure you all know that point and have met it at some time in you life. That undefinable point where you feel like you can't push on any further but know you have to. That point where you have to look deep, like really deep, inside yourself to find the strength and energy to keep going. I have reached that point. I could tell I was getting close to that point over the last week and then today I got a voicemail that punched right in the gut and right to that point.
Avery has been doing so well. She was taken off the high flow cannula to just a regular cannula (basically just extra oxygen w/ little to no extra pressure).  We have been working on her bottle and breast feeding and making slow progress...but progress. It has been a possibility all along that she may have to come home on some oxygen, but she couldn't come home on the high flow so being weened down to the regular cannula was one step closer to coming home. And then I received the message today that she is not tolerating the regular cannula and needed to be put back on the high flow. *insert punch in gut here*
I had just started really, like really, really, getting hope that she would be home soon and this felt like a HUGE step backwards. At least on the regular cannula she can progress forward with her feeds and even come home if she's still on it. Neither of that can happen with the high flow. Imagine trying to enjoy your food while someone was blowing air in your nose....doesn't sound fun. So the developmental therapist didn't want to push it too much while she is on high flow. But yet she has to be able to eat all of her feeds by nipple for a full 48 hours before she can come home.
This is hard. And unexplainable kind of hard. I can't wait for her to come home and I'm still holding out hope it will happen before Christmas. But if not I will continue to search deep, deep inside myself to find the energy to keep trucking along. If Avery can do it, than surely I can as, she is so worth it!