Ava's Story

So, I'm going to introduce you to my youngest daughter, Ava Grace. She was born on August 10th, 2010 with a birth defect called gastroschisis. Basically, it means that her abdominal wall didn't close in utero, so her intestines were on the outside of her body. We went through a lot with her, but she's perfect now.

Getting pregnant with her was ridiculously easy, we got pregnant the first month we tried. We were living in our tiny, 2 bedroom apartment, getting ready to move into our new house, which was supposed to be finished being built in January. We had always planned on trying to get pregnant when we moved into our house. But one day in the car, Jake looked at me, and said "You know, even if we started trying now and you did get pregnant right away, you'd still be pregnant for 9 months. We'll be in the house by then." And just a few days before that, I found myself thinking "no one gets pregnant right away, so we should start trying now." It was just funny that we were both thinking the same thing.

So we started trying in November, and found out in December that we were pregnant. I had planned out a cute way to tell Jake, whenever we did get pregnant. His favorite band is Nine Inch Nails, and I was going to buy a Nine Inch Nails onesie that I saw on Ebay. I figured I had time to order it, not expecting to get pregnant so soon. But one night, I was sitting on the computer, looking at curtain rods, and I showed one I liked to Jake. He said "Babe, I'm not going to know what I like until we move in." To which I replied "Well, you can just move into the house by your damn self then!" Which is totally out of character for me, Jake and I hardly ever fight or bicker. I think I can remember only three fights that we've had in the past four years. So we're both sitting there in stunned silence, and he says "I'm going to go buy you a pregnancy test, you're not acting like yourself." So he leaves, comes back in a 15 minutes, I take it, and immediately, two lines pop up. He even bought an extra test, which I took, and again, two lines.

So we started our OB appts at a local place, and everything was business as usual, until our 16 week appt. They called to say that my quad 4 screening came back abnormal, and we'd need to see a specialist. At first, the specialist didn't have an opening for 8 days, but they were able to get us in 4 days later.

So we had our appt, did the ultrasound, and the dr said that Ava had gastroschisis, and that "If you had to pick a problem, this is the one you would want." There is a 90% success rate with gastroschisis, and the hospital that I was going to have her at is one of the best in the nation. So we started seeing Dr Yost and Dr Magee for weekly sonograms. Then at 30 weeks, they were bumped up to twice a week. Did I mention that the hospital that Ava was going to be at, and the sonogram office was a 70 mile round trip from our house? We ended up putting a lot of miles on my new car, and spent a lot of time in the car. But I can't complain, I know of some gastro mommies that are two hours away from their NICU.

So at each appt, they would check my fluid levels, and her bowel dilation. They wanted my fluid to stay above 8, and the dilation to be below 2cm. It was stressful, at each appt, you didn't know if you were going to be sent home on bedrest, to the hospital on bedrest, or to labor and delivery to have her. I ended up on home bedrest at 30 weeks, and twice I was on hospital bedrest due to low fluid levels.

So finally at our 35 week appt, Ava's bowels, which had been fluctuating around 1.5 to 1.8, were at 2.14. So Dr Yost left the room and said she was going to call my dr. She comes back in a minute, and says "Head on over to labor and delivery." Luckily, my mom had been watching the older girls every time I had an appt, just in case of something like this. We called Jake's dad on the way to the hospital, and told her we were having Ava, and he said "I'm on my way". Yes, Jake's dad just finished up what he had to do at work, and drove the 11 hours down here from St Louis to be there for us.

So we check in, Jake gets suited up, and we're told that we're set to go down to the room at 11:45. Yes, my dr is going to do my c-section during his lunch break. Am I the only one who thinks it's crazy that a dr has no idea what his schedule is going to be for that day, and a lunch break can equal surgery instead?

My man is even sexy in scrubs.

So we have her, and she's 7 lbs 8 oz. Which is amazing, considering she was one day shy of 36 weeks, and most gastro babies have Intrauterine growth restriction. The dr said that if I had gone full term, she would have been a 9 or 10 lb baby.

I love that you can see him smile, even behind the mask

Ava had a "significant" amount of her bowels out, so she had to have a silo. Basically, they put the bowels in a bag, suspend it above the belly, and let gravity help. If they put in too much at once, it'll compress the lungs and make it hard for them to breathe. They use a respirator to breathe for her, since they have to keep her on a paralytic to she won't move and pull on the bag.

Ava with her silo baggy.

It took 4 surgeries to close her up completely.  We weren't able to hold her until she was 2 weeks old, since they didn't want to hurt her incision by her being held.

Ava after her fourth surgery (6 days old), finally closed up!

The first day we were able to hold her (2 weeks old).

With gastro babies, it's a waiting game. Are they going to eat? Can they eat? Are they going to poop? Is there an intestinal blockage? You end up so obsessed with poop and feeding. Every morning we'd call and ask "Did she poop?" Basically, if she can't poop, there could  be a blockage somewhere, or a kink, which would have meant another surgery.

Do you see all the wires we had to deal with when we'd hold her? 

So Ava is finally pooping, but when she'd try to eat, she'd projectile vomit. Not like just a dribble, but it would shoot out of her crib. So they did a barium, and found two issues. One is a hiatal hernia, which is "a condition in which a portion of the stomach protrudes upward into the chest, through an opening in the diaphragm". The other was pyloric stenosis, which is "a narrowing of the pylorus, the opening from thestomach into the small intestine." Basically, the pyloric stenosis was keeping the food from being emptied from her stomach, so it would just sit in there. And the hiatal hernia would push that food up into her esophagus, and she'd projectile vomit. She had the pyloromyotomy first, when she was 34 days old. The surgeon wanted to wait and see if the hernia would fix itself, since it was a more invasive surgery. But it didn't, and she was still projectile vomiting, so she had a nissen fundoplication done at 55 days old (they wrap the top part of the stomach around the bottom of the esophagus. So when her stomach would try and push the food up the esophagus, the stomach would instead squeeze the esophagus and keep the stomach contents in there). Luckily, that surgery fixed her issues, and she did great with all of her feedings, and we got the okay to take her home at 66 days old.

This is what we found when we brought Ava home, courtesy of our friends.

NICU is a blur of medical term, stress, and emotional ups and downs. It's two steps forward, one step back. It was hard to drive the 40 minutes there, just to find out that Ava had been awake all morning and would sleep the whole time you were there. It's hard to see your baby paralyzed and unresponsive. I still look at her old pics to see how far she's come. We had an amazing support team. First, our friends were invaluable. They arranged meals to be brought to us on Mondays, Wednesdays and Fridays, since I was on bedrest and couldn't cook. Friends would watch Arielle and Jasmin so Jake and I could visit Ava together. And his work threw a benefit for us at a local restaurant to help with medical costs and other expenses (we visited Ava everyday, so you can imagine the gas and parking costs). We had a amount that we "figured would be raised" and an amount "we hoped for." They ended up raising four times the "hoped for" amount.

The other support we had was through a group called Avery's Angels. The founder, Meghan, lost her sweet baby due to surgery complications from gastroschisis. And instead of being resentful, she took that emotion, flipped it, and started Avery's Angels. She noticed that there wasn't a lot of information about gastroschisis, and wanted to start a group where people could ask questions or even vent to people who have been through it. So I'm now considered a veteran, meaning I've been through it, and can offer help and support to those who are going through it now (whether they are still pregnant or in the NICU). So every now and then, I'll get an email with "new mommies" that need support, and I'll contact them. Meghan uses a butterfly to symbolize Avery. I don't know if you believe in God or angels, but look what I saw on my kitchen window as soon as I got off the phone with the dr and he said we could bring Ava home in two days.

My "Avery" butterfly visitor.

It scary. Gastroschisis used to be a 1 in 5000 births thing. Then it was 1 in every 2500 births. And the last report said (I think) 1 in every 2200. And they don't even know what causes it. But at least, now there is support for gastro parents, and awareness of this birth defect is getting out there. I had a WONDERFUL Avery's Angels mommy there for me, Siovhan, and I only hope I can be as helpful and supportive as she was. Avery's Angels is always looking for donations of new or gently used button up front onesies. Gastro babies have to wear a lot of wires, and the button up onesies are the easiest to get them into. If you would like to donate any onesies, please let me know and I can get you the address to send them too.

But I'm so thankful and blessed for our miracle girl!

Daddy and Ava on Christmas Eve

Ava's incision (the surgeon used the same incision site for both the nissen and pyloromyotomy surgeries) and her "man-made" belly button

I could write so much more about our experience, I kept a journal during her NICU stay of everything. It made it easier to keep track of her medicines, her progress, her weight, etc. We had such amazing doctors and nurses. Our primary nurse, Sara, did such an amazing job with Ava, and was so patient with her. I felt like she loved Ava when we weren't there with her. And the surgeon did an amazing job at giving Ava a "normal" belly button, I would hate for her to be self conscious about her tummy.

Things are pretty normal now. Ava has to be on Neocate formula, it's an easy to digest formula where the proteins are already broken down. One can is $42, and lasts her about 4 days. Thank GOD that we don't have to pay for it, or we'd be eating mac n cheese all month. After her nissen surgery, the surgeon said that she may not be able to burp, and it's highly unlikely she'll be able to spit up/vomit. But she will get out a little burp now and then, and it's nice to know that you won't get spit up on :) She might just have to avoid carbonated drinks when she's older. But no burping = a baby girl that toots A LOT.   :)

I tried to condense it down as much as possible, but if you have any questions, please feel free to ask. And please say a prayer for all those gastro parents and babies, present and future. The NICU is a hard place to be.

Talk, Eat and Laugh. My kitchen letters

We have a space above our kitchen cabinets that is probably, oh, 18 inches or so. 24 maybe. I can't tell and I'm horrible with guestimates. Anywho. I know some people put greenery and such up on top of cabinets like ours, and while that may work for their kitchens, it's not really our gig. 

This is one of the newest projects I did for our house. I get a bit antsy if I'm not able to craft, I think it's soothing to make something pretty. Especially when someone comes in the house, comments on something I've made, and asks me "Where did you buy those at?" Best. Compliment. Ever.

This project took a while to complete. Not because the project itself took a while, but it took a while to get all the letters. I got all of these letters at my favorite store, Hobby Lobby. Each letter was $2.47. I refuse to pay that much, since it would have cost me over $30 on just the cardboard letters. Not including the money on the scrapbook paper, and the wooden boards I have it all attached too. I'd be looking at a $40 project, and that just won't do.

We all know that Hobby Lobby gives a 40% off one item coupon every week. You can use "one coupon, per customer, per day." So I would pick up one during the day, and then text my hubby and tell him what letter to pick up on the way home from work. With tax, each letter cost me $1.60. So I saved about a buck per letter, and $12 over all. Not too shabby. I think I ended up buying 7 or 8 different types of scrapbook paper. And if I planned it out right, I was able to use one 12x12 sheet for 2 letters. Oh, and for those of you with smartphones, if you forget to print out your coupon, you can pull up the coupon on your phone, and get the 4 digit number off of it and give that to the cashier for your discount.

The first thing I did was put each letter, face down, on the back side of the scrapbook paper I had picked out. I then traced around each letter. Then I put the paper to the side. Now, the in progress pictures are not my kitchen project, it just the same process. I didn't take pics of my kitchen project, I did those a couple of weeks ago before I decided to check out the loveliness that is blog-land.

This picture shows a letter traced on the backside of scrapbook paper, the letter on the right is after I cut out one of them. These letters are going in my baby's room, she has a safari theme in there.

So, now that we've traced out all of the letters, and put that paper to the side, we need to work on the the cardboard letters. You might like the look of the cardboard. I wanted it to match my kitchen better, so I picked a pretty brown color. You just need to paint the sides, and edges of the front (you paint part of the front in case the paper doesn't cover it all the way. You don't want to have a pretty color on the sides, and see the cardboard on the front).

No, I'm not doing purple with the monkeys. This is a letter that I'm working on for my oldest daughters room. We're doing a section on her wall with different A's. I didn't paint the sides of the monkey letters, I thought the wood worked with the paper. And yes, I know, that these are not the same letters as my cardboard kitchen ones, but the process is the same. On my kitchen letters, I wanted more depth, so I took a paintbrush with a little bit of cream paint on it, and lightly brushed it on the sides.

Can you see it on the sides in this picture?

So now that you've painted it, set it to the side. I just used those little craft bottles of paint you can get at Walmart or HL or any craft store for a buck. They dry really fast. If you're going to attach your letters to a board, go ahead and paint that too. I attached my letters so I didn't have to worry about spacing them out when they were on my cabinets, plus I didn't want my skinny letters (like the T) to fall over. The wood board I got at Hobby Lobby too, I think it cost me a buck? Gotta love the half off sales that HL has all the time. I had my husband space out the letters (gotta love being married to a graphic designer who knows about letter spacing and such) and then he cut the board down to size before I painted it. He always ends up with extra work when I'm doing a craft project. He never complains though.

So now we're going to cut out the letters so we can stick them on the front. I cut just inside the lines. If you cut it out right on the lines, it'll be just slightly too big for the front of the letters.

So now, you have your cut out paper, and your painted letters. I'm lame and don't have any progress pics of the next part. I always forget to take pics in the middle of my projects, just the beginning and the end. So we'll just use our imagination. First, you want to lay the paper on the letters, so you can tell if you need to trim it anymore. You'd hate to put the glue down, stick down the paper, and realize it's still a smidge too big. So once you're happy with the paper, you just put a thin layer of modge podge on the front of your letter, and lay your paper on it. I used to always have a problem with my paper bubbling up with I would decoupage, but this seemed to help a lot.

I put soda cases on my letters while the decoupage is drying. See my monkey letters poking out? (At this point, you haven't put the decoupage glue on the front of the letter, so no worries of the letters getting stuck to the soda case. I do put a piece of paper between the soda case and the letter, just in case I've been messy with the glue.

So I let that dry for a couple of hours, and then put the decoupage on the front and sides of my letters. I wanted my letters to look a bit more vintage, so when I was putting the mod podge on the front, I would add a tiny bit of brown paint to my paintbrush, and brush that on the edges.

You can kind of see it in this pic. I like the dimension that it added. 

At this point, I'll attach the letters to my board with some E6000 glue and let those dry. I do score/scuff up the board where it attaches to the letters, and the bottom of the letters, so the glue will have something to attach to. I did put some clear packing tape around the board and the bottom part of the letter, just for stability. I wasn't worried how it would look, since I knew it would be way high up on our cabinets. If I had to do it all over again, I would just put it under the board and up the back of the letter. But the E6000 might work on it's own, it's pretty strong (smelly) stuff.

And voila!

I did put bricks under the board when I put them up, the trim on my cabinet was visually cutting off the bottom of the letters. So the bricks propped it up about 2 inches.

My mom knew I love words in my kitchen, and bought me this at Hobby Lobby. It comes in an upper case version, and a lower case. I told her I wanted the upper case, to match my letters. My 7 year old saw it, and said "Why does it say Fat?"

So now, I don't see "Eat" when I look at it, I see "Fat". Maybe I should have told her to get the lower case. Oh well.


Linking up to these craft parties:

2011 is coming up, what happened to 2010?

So, I've decided to try out this blogging thing. I follow a bazillion blogs online, might as well join the "cool kids" and start one too.  My husband keeps telling me to post my crafts online, but "who wants to see those anyway" is what I've always thought. But who knows? Maybe I'll end up with a follower or two someday, and my crafts will inspire someone to make something pretty for their house. Or something like that. But, I'm sure it doesn't help that I remember to take pics at the beginning of my craft, and at the end, but somewhere in the middle I forget to pick the camera and take progress pics. Hmmmmm. Plus, I have no idea how to set up this blogger to make it look anything like the pretty blogs I follow online. So hubby's idea of starting a blog = more work for him. You gotta love being married to a graphic and web designer. "Honey, I need you to set up the html on my page and make me a pretty header and some pretty buttons." Add that to your honey do list, babe. :)

2010 was a heck of a year for us. I swear, it went by at warp speed. We had our youngest daughter, Ava in August. This year will forever be remembered as a year of pregnancy appointments, sonograms, and NICU headaches and stresses. Ava was born with gastroschisis, which means her abdominal wall didn't close in utero, so her intestines were outside of her body at birth. She ended up having six surgeries and spending 66 days in the NICU before she came home on October 15th. But that's a story for a different day. We're both so ready for a year where we look back, and think "Not much happened that year."

Everyone talks about resolutions that they want to keep for the new year. I've always been anti-resolution. I mean, why do you need a day on the calendar to make a change for the better? But, I've decided I want to make a change in my life, and it just happens to be the new year. I was on my last bag of sea salt and vinegar  chips (I buy them by the two's, I love those things) and I decided I wasn't going to buy them anymore. And then I started thinking about exercising more. And I decided I was going to start on the New Year, and finish my bag by then. So, I guess I'm not "anti-resolution" this year.

So, my goals for 2011? The same as 99% of the population, I'm sure. I want to lose weight. I mean, I can't keep the "I just had a baby" excuse forever, right? Ava is four and a half months old, and I'm not back down to my pre-pregnancy weight. I fit into my pre-pregnancy clothes, and my friends tell me to shut up and that I look fabulous when I say I want to lose weight, but I don't like the numbers on the scale. Pre-pregnancy weight? 118 normally. 116 on a good day. I got up to 142 when I had Ava (gained 24 lbs) She was born at 35 weeks and weighed 7 lbs 8 oz. The doctor said she would have been a 9 or 10 pound baby if she had gone full term. EEK! So here I am, four months after having her, and I'm chilling at 123 lbs. 121 on a good day. And yes world, a woman just announced her weight. I'm 5 '4 if that matters.

So my goal? I want to get down to 118 lbs. 116 on a good day. In a perfect world, I'd weigh 114, but that's probably not going to happen anytime soon. I love my coca-cola and sea salt and vinegar chips too much. Hi, my name is Jennifer, and I'm addicted to Lays sea salt and vinegar chips.

I was doing kick boxing for a while before I got pregnant. Talk about a work out! Whew, that class would kick my butt, three times a week. But it's such a sense of power to know you finished an hour of it, plus it's great knowing that if I got attacked, I'd hopefully be able to do something about it to defend myself. Either that, or scream like a little girl and run the other way. But we'll pretend that it'll be the first one. Apparently I was pretty good at it too. At my first class, the instructor asked me where I had trained at before.

yes, that's my leg when I kickbox. Apparently I throw knees and kicks pretty hard.

So that's my goal. Working out more. Which is hard to do since we're down to one car, and if I want to use my car during the day, hubby has to have someone come pick him up for work and take him home. Or I have to pack up all these rugrats and take him in. His car has been in the shop for forever, something about the computer going out and the shop is waiting on a new one? I don't know. I have a ton of work out videos in the house (Turbo Jam, P90X, etc) but I'm the type of person who can't work out to a video. I have no accountability if someone isn't there watching. It's too easy to hit the fast forward button if I don't want to do something. At least if I do it when hubby is home, he'll call me out when I'm being lazy, which is what I need. He's been holding the thai pads for me for the past week, which has been awesome. It just feels good to get moving again, and to hit something (not that I'm violent, but it is fun). It's COMPLETELY different to pretend to throw a hit, like on my Turbo Jam video, and to actually hit something. We've been doing two nights on (half an hour) and one night off. He basically takes what he learned in class, and calls out things for me to do, while he holds the pads for me.

So fingers crossed and prayers said that I won't cave in and buy sixteen bags of chips, and keep my eye on the goal, er, scale. Besides the coke and the chips, I eat pretty healthy. I don't buy junk food, because if it's in the house, I'll eat it. I even make sure to buy the girls snacks that I don't like, so I'm not tempted. But those chips, they sure do call my name.

What's your resolution?