Avery's Angels     
Gastroschisis Foundation
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December 2nd at 13 weeks pregnant, we found out our baby boy had gastroschisis. All Jared and I heard was �gastroschisis is repairable, there won�t be many if any long term complications.� We both are inherently positive people so the nightmare that had entrapped us in the 36 hours since we got the call our blood tests had come back showing a problem melted away. I came home and poured over my belly anything that appeared legitimate on the internet to find out all I could about what my little boy would be facing. There wasn�t much, if anything at all. I started keeping a 5 tab note book on my questions and all his information. We didn�t have a choice about being brave or not, our son was going to confront it all before he was born and with his first moments on earth. We just had to do what we could. But the doctors and specialist raved about how much Avery was staying on the growth curb, highly uncommon for gastroschisis babies who stay in the lowest percentile for most of their development. Avery stayed right on the curb. The portion of the bowel that was out looked to be just a tiny loop. We had a future to plan it seemed, with him; little league, muddy shoe prints, football, golf caddy for daddy, mommy�s baby boy. He was strong and it was looking very good.

Avery John Rauen was born April 14th 2009 at 11:37PM. It was a beautiful day, we had an incredible room with the most wonderful staff watching over us. Jared and I feel more in love in those hours then we had in the 18 months we had spent together before it. I labored from 12pm until 11:37pm when, like he would for the rest of his day, gave the tiniest cry to say �Hey, I�m here and it�s bright�someone may wanna look into it�� then calmly looked around at the flurry of doctors nurses and activities going on around him, his father�s head and camera darting in and out to catch a glimpse of him through it all. All I got in those moments was the slightest touch of his hair covered head and they whisked him away to the OR for his surgery and evaluation. Again, the doctors said, �He looks great, it�s a little loop and we think it�s going to be an easy road for him.�
At 6am, about 3 hours after we both got settled into our perspective floors, he was out of surgery with everything tucked into him and me I had a few moments of shut eye and a hearty pump, parents met baby. Avery was hooked up to a vent and on strong pain meds so we were instructed to not touch and keep our voices low so he wouldn�t startled and be uncomfortable.
The next day, I sat in the customary wheel chair amongst mothers holding their tiny bundles and balloons and clutched my bag. It was the second time in those 48 hours my heart literally felt like it was wrenching out of my chest. I started to sob as we pulled away to go home, and Jared looked at me and said �O Darling, you can�t do that, you have to be strong so I can be strong.� We drove home the hour away from the hospital and picked up my medicine from the pharmacy. Jared went out to get us dinner and I collapsed in a heap and screamed and cried until he walked back through the door. An empty jungle green nursery door stayed closed much of that week as we learned to be visiting parents.

3 days later we held our son for the first time. It was the most incredible feeling we'd ever known. We began to know the hospital staff well, from the receptionist and guards down stairs to the NICU receptionists and nurses and doctors. Everyone knew us; we were always full of sunshine and laughter, practical jokes and off handed remarks. I brought cake or desert every Tuesday to mark Avery's 1, 2, 3, 4 etc. birthdays. Avery's primary nurses, Haley and Melissa became our family.
We hit the 6 week mark, which in standard prep they tell you "6-8 week recovery and home!" and Avery hadn't pooped and feeding wasn't even in the cards. We were agitated and concerned and didn't know what to expect, what was normal. Everything was being handed to us through the doctors, who weren't always readily available, which practically speaking isn't too surprising considering we were calling a NICU our home. There wasn't anyone to ask questions to "hey, is this what you had happened" and we just had to trust our doctors when they told us "Eh, this is normal, about half of our babies have extended care paths." I remember one of our nurses rolled her eyes at us recanting what we had been told "I don't know why they still tell people that, most of the babies I've seen with gastroschisis stay at least 9 months." Um, that's not what we prepared for. Our son was strong, he was healthy, and he looked good! That's what everyone had said!
We spent mother's day together. There were at least 4 central lines changed, a bed move that we hadn't been alerted to and walked in to an empty pod and freaked out, there were disgruntled nurses and plenty of temper tantrums on both sides.
Another surgery and we had poop about 2 weeks later. I saved the napkin the nurse wrote the note on when she had stepped away for her break knowing we would show up. Here it was! Here was the end! But the distention wouldn't go away. We tried to feed and he would throw up when they tried to up any amount. I pumped religiously, filled up 2 allocated freezers full at the hospital, our home freezer and our family's freezers. He only had one bottle defrosted before they said "not right now." Avery ended up with a site infection and bush with NEC that the doctors took care of, but still, his bowels weren't working. Barium studies and x-rays and still no answers. Our little boy looked perfectly healthy; the only problem was his tummy wouldn't work. It was even frustrating to his doctors, we were all desperate to quit the NICU and finally be a family. Another 7 weeks later, it was surgery time again.
They told us 8 am so we showed up at 6am to spend some time with our boy, knowing it would be a few days again, like always with him on the vent before we could hold our blue-eyed boy again. He looked surprised to see us and bounced around a little bit, offering his quiet smile to his daddy and snuggling into me. He watched his beloved mobile and discussed the ridiculous colors of the wild-eyed animals with us. We walked behind the bed as he went down into the OR. I held him as the anastisologists briefed us again and his surgeon, Dr. Helmrath came by to tell us it would be soon and things would be OK. It was 9am. And I kissed him and he was rolled away.
At 12pm Dr. Helmrath met us before they had his bed up from the OR. It had gone really well! There was only one dead spot and he had put in permanent central line, an ostomy to rest a part of the bowel and a G tube to feed. We were going home as soon as Avery was off the vent and the GI doctors could come up with a plan�a week or so maybe. We�d be transferred to the 7th floor and finally able to stay in-house with our boy! We went to his bedside to see him. His blue eyes were fluttering open and he seemed distressed, and paper white. Blood was pouring out of his ostomy site and we asked �What�s going on.� �O, the bowel is vascular so bleeding is common, it�s OK, and we�ll sedate him a little more to keep him comfortable.�
We had plans to meet up with Avery�s aunt and see a movie later that night. But I wasn�t going until his stats leveled out.

3am the next day, we were sleeping in one of the 2 overnight rooms for parents learning to take their special needs children home. Avery was in the red, doctors were staying over their shifts to stabilize him and keep him here. He had 2 nurses on his solo care, an oscillator forcing air into his lungs that were being smushed into his chest by his ever expanding gut. His body was shaking from the force of the machine and his new line was full of 20 different machines and lines forcing transfusions, clotting agents, antibiotics, fluids, lipids and nutrients into his body.

The next 2 weeks were full of �he�s not out of the woods yet� emergency bedside surgeries, I was an honorary NICU nurse, and we never left the hospital. I would change bandages and read him stories; played his baby Mozart, whisper my plans for him, for us, talk to his doctors and nurses. I would watch his monitors for hours on end, my skin grew pasty, I never stepped out of the hospital. We started to see his body finally stabilize and we decided, maybe we could go home, besides they needed the room for families waiting to go home. We went home on the night they decided to start weaning him off the agent that was keeping him sedated.
I got the call the next day, from Jared when I finally returned to work. �He�s not responding, we�re headed to the ECC, don�t worry mama, he�s going to pull through.� It felt like the 103 days were crashing down around me. Jared came home, and I did too and we made plans to get to the hospital to learn the results. It was 6pm, and the resident met us bedside. �Um. Dr. Marshall said she would come if you needed her to.� �Just tell us.� �I don�t know how to say this, but there�s nothing there.�

I collapsed. Jared didn�t understand. We sat in the room, and kept saying over and over �I can�t believe it; this is a dream, right?� We cried, Jared searched the internet for stories on recovery from total brain inactivity, there wasn�t anything. We spent the next 3 days coming to terms with it. That Thursday we decided to say our goodbyes that night and hold him as he left us.
They offered us, seeing as I had wanted to do it around the same time he was born, 11:37, the butterfly garden onsite. The hospital visiting and general activity would be died down. The hour before they put him in his own room and nurses and family could come see him while his

machines still breathed for him. Then Jared and I walked behind his bassinet as they pushed it out to the butterfly garden, and they took the tubes out. We held him as the wind whisked around us. It was the first time since he was born, we had seen our son without a tube or a line. Our care team had set out candles and made the area special. His doctor came and pressed a stethoscope to his chest in 15 min intervals until she said �he�s gone.� I held his body all the way up to the morgue and we watched them slip on the toe tag and put him in through the steel refrigerator doors. �I was with him in the very beginning and I want to be with him until the very end.�

Avery's Story
Apr 14th 2009-Jul 30th 2009

Avery stood for hope for me, for us. I walked away knowing that he was the best thing that had happened to us, and that was who he was. He was beautiful and complete and strong. He had always been strong, until the end. And that�s how I want him to be remembered. That�s why I didn�t want to face the throng who gathered behind us at his funeral. I didn�t want him to be the �dead baby.� I wanted him to always be just the hope and the joy, and the 9 months of waiting for a baby and to be mom, and the 107 days I got to be his mother here, the tiny feet and hands, the wondrous love that would move cars off roads and crumble mountains into dirt, stop a storm and make anyone woman a superhero. That�s what he was. That�s what he would be.
So with the prompting of all whom we had grown close to at the hospital, the whole section of the church at Avery�s funeral full of highly ranked medical professionals, I started Avery�s Angels. I knew there were thousands of us out there. Through them and through future others I could give Avery a life, a life of hope and joy. Everything he was meant to be I would make sure and advocate for him to be. Just like any mom would.

I am after all, Avery�s mom. -My first born, my best and bravest.

aaaaaaaaaaaaiii