When I first started my blog, I posted the story of my daughter, Ava. It's pretty long, so if you want the cliffs notes version...
She was born with gastroschisis, a birth defect where her abdominal wall didn't close, so her intestines were on the outside. She spent 66 days in the NICU, and had a total of 6 surgeries (4 for the gastroschisis, and the other ones for a hiatal hernia and pyloric stenosis).
What helped me the most throughout it all was Avery's Angels. Avery's Angels is a support group for parents and survivors of gastroschisis. When you're dealing with a birth defect you've never even heard of, the most calming and helpful thing you can do is talk to someone who's been there. Doctors just give you the facts. Sometimes you just want to cry on the virtual shoulder of someone who's been where you are.
As some of you know, I'm a veteran mommy for Avery's Angels. My job as a veteran mommy is to offer support and information for new mommies on the board.
But there are more and more mommies on the board every day. You know why? The numbers are on the rise. What used to be a 1 in 5000 birth defect, is now a 1 in 2200. You know what else is scary? The causes of gastroschisis are still unknown. Did I mention that there is only a 90% survival rate? Do the math of 10% of 2200. Those aren't happy odds.
So today, Avery's Angels is participating in Rare Disease Day, which is today. By participating, they hope to raise awareness about gastroschisis.
Besides providing information and support, Avery's Angels also tries to send out care packages to gastro parents. But it's all done by donations and a lot of it is done out of pocket. AA is ALWAYS looking for button up onesies (preemie or newborn sized preferred) and mittens. Button ups are the easiest for gastro babies to wear, since they are always hooked to so many wires. Gastro babies also either have a repogle tube (which pulls secretions and bile from the stomach) or a feeding tube, and mittens help keep those silly fingers from pulling out their lines.
We went from this...
To this happy,
beautiful,
amazing,
smiling girl...
I'm doing my part today by writing this post. Perhaps I've educated you about a birth defect that you've never heard of. Maybe you'll say a prayer for all of those scared pregnant mommies, or those precious babies in the NICU unit at THIS EXACT MINUTE. Or maybe you have some button up onesies or mittens (or even socks) that are taking up room in your attic that you are willing to donate.
Today you'll find me wearing green, which is the official color of gastroschisis awareness.
All in support of this precious, perfect little girl.
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.
