Ava Elizabeth

Bowling babies

2011-03-16T14:21:00.000-07:00

Girlss!

2011-03-15T18:49:00.000-07:00

Snow Day

2011-01-14T18:46:00.000-08:00

Jumpy jumpy

2011-01-14T18:39:00.001-08:00

Happy girls!

2011-01-14T18:18:00.001-08:00

Forgot this one?

2010-12-27T18:44:00.001-08:00

Sled Attempt #1= Fail

2010-12-27T18:32:00.000-08:00

Little bit of snow

2010-12-27T18:28:00.000-08:00

Very First Sleepover

2010-12-27T18:22:00.000-08:00

2010-12-27T18:15:00.000-08:00

Goofy Girl

2010-12-27T18:13:00.000-08:00

Christmas with Old Grandpa

2010-12-27T18:06:00.001-08:00

Took lots more pictures here but the lighting ruined them =(

Round 2

2010-12-27T17:51:00.000-08:00

Christmas Part 1

2010-12-27T17:44:00.000-08:00

Mickey Mouse

2010-12-20T17:53:00.000-08:00

Snow bunny

2010-12-20T17:50:00.000-08:00

2010-12-20T17:47:00.000-08:00

My Favorite Pictures!

2010-12-17T18:13:00.000-08:00

Cast your vote fam

2010-11-26T12:54:00.000-08:00

K this is what we have got so let me know which one you want for the card or if you want copies. Don't just look at yourself, Jaimie. Baha.

Girlies

2010-11-15T20:14:00.000-08:00

Flower Love

2010-11-15T20:04:00.000-08:00

Great Grandpa's Girls

2010-11-15T20:00:00.000-08:00

Family

2010-11-15T19:57:00.000-08:00

Birthday Party

2010-11-15T19:47:00.000-08:00

Berkshires in the Fall

2010-10-10T20:03:00.000-07:00

Perfect place to get engaged=)

Pumpkin Carving

2010-10-10T19:45:00.000-07:00

Lollipop Girl

2010-10-10T19:42:00.000-07:00

Pumpkins

2010-10-10T19:08:00.001-07:00

Autumn!

2010-10-10T18:49:00.000-07:00

Ava Elizabeth, you are TWO!

2010-10-03T19:02:00.000-07:00

Old Pics of Leah Butt

2010-09-19T19:14:00.000-07:00

The First of Many Birthdays!

2010-09-19T19:03:00.001-07:00

Ava's Belly

2010-07-30T20:19:00.000-07:00

At 11months before second surgery

After surgery

Today

Gastroschisis Awareness

2010-07-30T19:46:00.000-07:00

But the needy will not always be forgotten, nor the hope of the afflicted ever perish.
Psalms 9:18

Be strong and take heart, all you who hope in the LORD
Psalms 31:24

Today was the first ever Gastroschisis Awareness Day and I was so happy to be a part of it. Avery's Angels is a non-profit organization founded by a family who's son lost his battle with Gastro and went to heaven on this day. Right now, awareness is so important because since few people know about it, it is difficult to raise money to support funding. It's easy to forget about this condition, as it affects many children but most do well with it. It is so important to remember that not all babies can beat this. I think it's important, too, for us to remember everything we have been through so we stay motivated to help others. When I was pregnant I would have done anything to talk to other parents. The few I found consoled me beyond words. Right now that's all we can do but someday, they will find out exactly what causes this condition and they will eliminate it-until then I don't know how any Gastro family can truly find closure.

Lots of Gastro mamas are recapping their stories for new families. I feel like I should but I also feel like there are no words to explain what we experienced, I worry that I'll forget but I'm also comforted by that fact. We found out over the phone that something was wrong with our baby, around 16weeks. We were sent to Baystate to find out exactly what was wrong, so we spent two days thinking worst case. We spent the whole day there, waiting for various doctors to review the ultrasound. We found out we were having a girl moments before finding out she had Gastroschisis. The doctors explained it so many times, I think they saw my eyes glaze over and my mind just shut down. I was just numb. I kept thinking it couldn't be happening. I just remember crying so much, so hard.

Months later, hundreds of doctors apts, and a bunch of bed rest later Ava was born at 11:18pm (I think!) on October 11, 2008 at 3lbs9oz I saw her for a second as they rushed her off to surgery. I saw her for the first time a day later. She was sedated with pain medication. I remember not feeling sad at all, I was just so happy she was done with her surgery and on the road to recovery. I had gotten to the point where I was desperate to have her because I felt like my job was done, I couldn't help her anymore. Due to the increase risk of stillbirth, I just wanted her to have the chance to fight for herself. I thought the hard part was over but it just kept getting harder.

We spent just over a month in the NICU, looking back it doesn't sound so bad. But it was over a month of not sleeping in my own bed since we were an hour and a half away, of our families driving back and forth to see Ava, of Ben leaving at 5am to get to work on time but also spend the night waking me up every three hours so I could pump and it was a ton of ups and downs. Ava did not take well to feedings, she didn't have an easy time healing like some Gastro babies do. She struggled every single day and all we could do was watch. We were there every day, I would hold her all day until Ben got there after work. I wish I had counted how many times I washed my hands going in and out because I'm pretty sure it would be an impressive number.

When Ava came home it definitely got easier but was not easy by any means. Her belly just wasn't right and despite lots of meds, she just wasn't a happy baby. I really think it took about 16months for her to settle! She's had two surgeries, which is nothing comparitively- especially since she had so much outside her body when she was born. She has her stomach and both intestines out and they were able to put everything back in the same night. The second surgery was for an unbilical hernia which is very common for gastro babies, since everything settles into place in a certain way. I wonder alot about how I'm going to explain everything to Ava when she gets a little older. I try not to think about it msot of the time because it still upsets me and I don't ever want her to be upset over it. I know it happened to us for a reason and I hope we can do something positive because of our experience.

I apologize for the lack of detail, I wanted to write something to honor this day but it's late and I'm ready for bed. Maybe someday I'll really sit down and write everything, so we don't forget. I just know alot of people wonder what I'm talking about when I mention Gastro so hopefully this helps!

Pretty girls

2010-07-22T19:40:00.000-07:00

Remember this outfit?

2010-07-22T19:37:00.000-07:00

Water, water, water.

2010-07-22T19:30:00.000-07:00

Summer Fun

2010-07-22T19:20:00.000-07:00

Walking on the beach

2010-07-01T17:47:00.000-07:00

Crazy crazy horsey ride

2010-07-01T17:31:00.000-07:00

Pretty, pretty!

2010-07-01T17:24:00.000-07:00

It's hard to write in the sand!

2010-07-01T17:22:00.000-07:00

Happiest boy in the world

2010-07-01T17:21:00.000-07:00

Boys in the water

2010-07-01T17:20:00.000-07:00

Short Beach Day 3

2010-07-01T17:16:00.000-07:00

Walk around the hotel

2010-07-01T17:11:00.000-07:00

Rides on the beach

2010-07-01T17:09:00.000-07:00

Beach Day 2

2010-07-01T16:40:00.000-07:00

Mommy&Daddy's Night Out

2010-07-01T16:37:00.000-07:00

Are they twins?

2010-07-01T16:26:00.000-07:00

Beach, Day 1

2010-07-01T15:39:00.001-07:00

Wavess

2010-07-01T15:21:00.000-07:00

Sunshine

2010-06-26T16:08:00.001-07:00

Water Babies

2010-06-24T19:14:00.000-07:00

Lots of Lovin

2010-06-24T19:12:00.000-07:00

Toes in the water

2010-06-24T19:11:00.001-07:00

Baby Ava's toes

and Baby Leah's toes!

Blue, mama, blue??

2010-06-24T19:09:00.000-07:00

Poppy's Girl

2010-06-24T19:07:00.000-07:00

Pool

2010-06-20T18:48:00.000-07:00

Six Flags Round 2

2010-06-20T18:45:00.001-07:00

Whitneys

2010-06-15T16:30:00.000-07:00

Rainy Day

2010-06-13T19:44:00.000-07:00

Aspennn!

2010-06-12T18:06:00.000-07:00

Two babies, two cameras, no pictures?!

2010-06-12T17:57:00.000-07:00

Baby Bun

2010-06-12T17:53:00.001-07:00

Day at the Lake

2010-04-25T10:30:00.000-07:00

What Big Girl Beds Are For

2010-04-25T10:09:00.000-07:00

Sunny Weather

2010-04-16T18:55:00.000-07:00

18 Months &Boston Children's

2010-04-16T18:40:00.000-07:00

We are hard pressed on every side, but not crushed; perplexed, but not in despair ...
2 Corinthians 4:8

I have no idea how it's been so long since I updated, I feel like so much has happened! I guess I should start with Ava's first trip to Boston Children's Hospital last month. It went well and Ben and I really liked the doctor. She put Ava on a reflux med and said if it was reflux we would see a difference in her appetite within 2 weeks. At that point we were to call to update her and plan from there.
Ava definitely didn't eat any better but after a month she gained 9oz! She had her 18month check up this week,and weighed 17.14lbs which was a significant gain from last month. Her pedi was happy and we were too...until we talked to Boston.

Dr.Hyguchi was far from pleased with Ava's progress. She said if the medicine was working Ava would have gained more than that and we would be seeing a clear difference. So she wants to continue with testing. May 4 we go to Boston for another upper GI looking for the esophigial diverticulum, a sweat test to further test for cysticf, and a calorie count with the nutritionist. She wants us to prepare for another sugery to attempt to fix whatever is in her belly. She said we would use our surgeon from Baystate and it would happen in the next year. After all the tests we go back in 2 weeks for the results. I have absolutely no opinion in this right now, I don't feel like there is anything wrong with Ava but if this doctor from Boston Children's Hospital is telling us there is definitely something wrong, what choice do we really have? I just pray that if there is anything wrong it's an easy fix.

Clearly Ava isn't on the chart for weight but she's in the 25%for height and 60%for head size, ha! She's doing really well with regard to everything else though. Starting to sleep better and longer; takes consistent naps, she's so outgoing, she loves everyone. She is just a generally happy baby who may not feel 100% like most people. You can tell she's uncomfortable sometimes and just refuses to eat constantly. I think the upper gi is going to be important in determining the next step. If they don't find anything this time they need to come up with a new idea or decide that maybe nothing is wrong- best case=)

Nana's pigtails

2010-03-09T16:15:00.000-08:00

Funny Outfit

2010-03-09T16:10:00.000-08:00

Loving the park!

2010-03-09T16:04:00.001-08:00

Little duck

2010-03-09T15:59:00.001-08:00

Round Two

2010-02-26T13:57:00.000-08:00

You will keep in perfect peace him whose mind is steadfast, because he trusts in you. Trust in the LORD forever, for the LORD, the LORD, is the Rock eternal.
(Isaiah 26:3-4)

Since we built Ava's first snowman she has been crazy about him! She pulls our hands to go outside and puts her coat on (or tries to) and wants to climb the couch to look outside at him. With all the rain we got yesterday tho he was almost gone today. Luckily we got some fresh snow today so I thought she would have fun building a new one which she could see standing at the window- by herself. This girl just can't make up her mind. She hated it! I mean come on Ava, it's only been a day. One of these times I need to get a picture of Ben making this face and put them side by side because I swear they are identical.

Once we came back inside she was much happier and she stood at the window looking at him (her?) for a while. So maybe it'll grow on her =)

Snowman

2010-02-24T14:37:00.000-08:00

The Snowy Day

2010-02-24T11:21:00.000-08:00

Feb. Birthdays

2010-02-21T16:27:00.000-08:00

Hanging out

2010-02-21T16:23:00.000-08:00

Playdate

2010-02-17T18:10:00.000-08:00

Get used to seeing this...

2010-02-17T18:08:00.001-08:00

More teeth..

2010-02-17T18:05:00.000-08:00

Valentine's Day!

2010-02-17T18:00:00.000-08:00

But my baby isn't sick?!

2010-02-09T17:45:00.000-08:00

For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
II Timothy 1:7

For you have been my hope, O Sovereign LORD, my confidence since my youth.
Psalms 71:5

Ava had an appointment with Baystate's Pediatric Gastroenterologist who we have seen 5 or 6 times in the past. They have generally been happy with Ava after performing multiple endoscopies, upper/lower gi's, and biopsies to test acid levels indicating reflux problems. Since all these test have come back negative various times we have all been comfortable in thinking there is nothing wrong with Ava's belly. Her Pedi hasn't been happy about her weight but since we have started being really strict with her diet I think we all have seen improvements. She seems a little more eager to eat and eats a little bit more. Her last check up she had gained 9oz which he was happy about. So I thought by seeing another doctor, a specialist, he would tell us she was doing fine and not to worry about all the little things...

I was wrong.

Dr. Angelides was very unhappy with her weight and the fact that she has not gained much within the past 6 months. He wasn't necessarily upset with the fact that she is little just that her curve has taken such a nose dive. Her chart in his folder is pretty pathetic but again I reminded him that we have done so many tests- including bloodwork and stool samples and that everything has come back negative so what more can we do? We talked about how much she eats and the fact that it has increased, the fact that she doesn't throw up or seem like she's in pain would imply that structurally there is nothing wrong with her belly but he said the fact that she isn't willing to eat and isn't "thriving" indicates that there is something wrong and we have to figure out what it is. He did say that it's not urgent but that we need to schedule an upper Gi- what he thinks he will find is the small outpouching or hernia that was visible in her first upper GI when she was in the NICU which wasn't visible on any of the other upper gi's or endoscopies. If this is what is there than it may be pressing on her belly making her not want to eat. This would also require another surgery...

Which is fine if that's what she NEEDS but I'm not convinced.

So Ben and I, with lots of help, decided it is time to get another opinion so we will go here People from all over the world go to Boston Children's Hospital and they see a lot more cases than most hospitals so we are thinking if there IS something wrong they will be able to find it. If she has to endure more tests why not let someone with a fresh perspective on the situation perform them? I just filled out a form to request an apt. so someone is suppose to call within 3 days and we'll just take the first available apt for a consult and go from there.

I think worst case options inevitably run through your mind when you hear this kind of stuff simply because we have no idea what the possibilities are. I'm worried - whether she needs another surgery or a feeding tube or anything else- that it won't ever be the fix that flips the light switch on. I mean when she was born we thought the repair surgery would fix her, then the first med, second, third, seventeenth, thirty-second, then maybe all the tests she had every other month, or maybe the surgery she had 4 months ago, but nothing worked- Maybe it played a role in evening out her system but nothing was the magic fix where all of a sudden she eats like a normal baby and enjoys eating. So I guess I'm just a little skeptical that after 16months of trying, trying, trying to figure out what's going on IF anything is going on that now is the time- but maybe that's what Boston can figure out? Right now we owe it to her to explore every option available because it's not just one doctor telling us "there's something going on" and despite the fact that I just see a perfect, happy little girl we're in line to get back on this roller coaster.

First Trip to the Museum..

2010-02-05T14:22:00.000-08:00

Wordless Wednesday

2010-02-03T16:09:00.000-08:00

Silly Girls

2010-02-01T17:58:00.000-08:00

Smartest girl in the world

2010-01-27T14:35:00.001-08:00

Outside Attempt #2

2010-01-27T14:13:00.001-08:00

Ava Babyy

2010-01-27T11:31:00.001-08:00

These two do everything together, including watching Teletubbies, I'm honestly not sure who's more into it!

Happy Birthday GreatGrandpaa!

2010-01-22T16:32:00.000-08:00

“Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.”
Isaiah 46:4

“Gray hair is a crown of splendor; it is attained by a righteous life.”
Proverbs 16:31

15 Months!

2010-01-13T14:27:00.000-08:00

When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.
(Isaiah 43:2)

On Monday Ava had her 15month check up and we actually had a good appointment for once! She weighs 16lbs 11oz which was a 9oz gain in about a month. If Ava maintains this kind of gain at 2years old she will just make it onto the weight chart. She is 29.5in tall which puts her in the 15-20th percentile. As far as a plan for eating goes we're still focusing on high calorie/protein food.We have cut way back on fruits and veggies which are only offered at dinnertime, her worst meal. She seems to be more eager about eating though, she'll finish an egg for breakfast, a hotdog for lunch, and maybe a little soup before bed. The doctor also liked the idea of adding Carnation Instant breakfast to her milk. He thinks she is ready for weening so we'll start playing with that idea pretty soon.

She had a behavioral therapist come today through Pediatric Development Center. Developementally she is doing really well but she throws temper tantrums frequently which are hard to help her unwind from. She has gotten better recently and she really is a sweet baby but I'll take all the help I can get in making her better. My worry is that if she has these tendencies not that we don't attempt to change then as she gets older they will become worse and it will be too late. She did give us a few ideas about how to help her but most of them were old ideas we have tried or I just know wouldn't work. Ava bites her nails alot and throughout the apt. as Ava started biting, the woman would massage her hands and Ava really seemed to like that- the same with her feet. She also encouraged us to get Ava attached to a blanket or stuffed animal for security but I don't think I like that idea. Overall we didn't learn too much but maybe a few little tips that will help in the big picture. One thing the woman kept doing was asking Ava to wait a second and I was shocked to see that Ava actually sat and waited. I think sometimes I don't this give little girl enough credit!

Abby lovesss Ava!

2010-01-13T14:05:00.001-08:00

The other morning I couldn't figure out why Abby was following us around all morning. Until I found Ava in our pantry with her hand in the container of dog food, giving Abby one at a time like they were treats. Abby loved it and it's Ava's new favorite thing to do. Think she'll be a vet? Ha!

Cousins

2010-01-13T13:43:00.000-08:00

This picture makes me laugh because despite my best efforts, I just couldn't get a normal picture of the kids playing.

Snow baby?

2010-01-13T13:36:00.001-08:00

Ava has always loved to be outside, rain or shine, so I thought she would LOVE the snow. Wrong!! I guess the one thing she likes more than being outside is wearing little to no clothing. Guess we'll give her some more time and try again=)

Tea Party

2010-01-13T13:32:00.000-08:00

One fish, Two fish, Red fish, Blue fish..

2010-01-13T13:14:00.000-08:00

Merry Merry Christmas

2009-12-26T19:20:00.001-08:00

Merry Christmas Eve Eve!

2009-12-23T13:54:00.000-08:00

And suddenly there was with the angel a multitude of the heavenly host praising God and saying, (14) “Glory to God in the highest, and on earth peace among those with whom he is pleased!”
Luke 2:13-14

I'm just not ready for Christmas to be over with! It is easily my favorite time of year and I think Ava's too=) We have been listening to her Christmas cd's over and over- she just loves dancing to them and clapping. She loves touching every single ornament on our Christmas trees and has already started unwrapping some presents, ha! I think her favorite part of the season is all the decorations around here. She absolutely loves all the snowman stuffed animals we put in a little corner for her. She'll spend forever bringing them into different rooms or from mommy to daddy. It's one of the few times she'll sit still on my lap. She'll find the snowman's nose, eyes, hat, buttons- she'll hug them and kiss them. The past couple nights she climbs onto the couches and reaches for them so we hand her one by one and she just laughs each time. She is going to be heart broken when they are packed away! We have spent days wrapping where she hands me tape and rolls around in the wrapping paper, I would finish wrapping a present and she would immediately unwrap it- I'm pretty sure I wrapped one present six times, ha! She is just at such a fun age right now- she understands things and truly enjoys them more than she had before. I know each year will get better and better but I think this year will always be one of my favorites!

Ava's new hobby

2009-12-23T13:51:00.000-08:00

Can you say blackmail? Ha!

Playing catch up

2009-12-23T13:40:00.000-08:00