Elliot's Story, by his mama

Post by Shawna

Elliot's life was full of shocks. 

At 12 weeks I had that unexpected ultrasound where the tech changed their expression, their posture, their voice, then they leave the room and you immediately know something is wrong. That knot in my stomach got tighter when the doctor came in. I'm not sure if I started crying before he even spoke. He told us that there was something wrong. Our babies abdominal wall had not fully closed and his intestines were growing on the outside. He briefly told us what it was. Gastroschisis. A word that became an everyday word of my vocabulary. When you hear that and have no medical background you think how does someone possibly survive through that! They told me a lot of babies survived but they also gave me the option of terminating the pregnancy. No way this was my baby! At first they didn't give us numbers. I was a numbers person before this. Before being on that percent no one thinks they will be on. I cried that whole week. Scared for my baby.

The next week we were sent into Boston and met with who was suppose to be Elliot's surgeon if everything went as planned. (There is no real planning with gastroschisis I have learned) Children's Hospital gave us a lot of hope. They said the survival rate for gastroschisis was around 90 percent. Ninety percent sounds great when you have never been in the 10 percent right?! They gave us all the info. (I wont go into all that detail.. check out averysangels.org for more info) They told us we would be seen frequently to check on his growth and to make sure his intestines were not dilated. We had a plan that I would start going to Brigham and Women to see a high risk OB at about 20 weeks and I would deliver there. Elliot would be transferred to Children's after he was born and stabilized and then the surgeon would determine when he would have his surgery and then his health care plan would go from there. They told us to expect anywhere from 4 weeks to any number of months but everything was looking great(for a gastroschisis baby).

At 18 weeks we found out that Elliot was a boy then he officially became Elliot! There was no change with his condition and he was still on track with growth. Once we began to go to Brighams was when the ups and downs began. Our first appointment went great and we also went back to Children's to do a follow up with his surgeon and also got a tour of what we thought was going to be home for awhile. 

Our doctor was amazing. Our plan was to go to 37 weeks then I would be induced for labor. I began us at appointments every other week but that quickly changed. I had a gestational diabetes scare but thank goodness the three hour test showed I did not have it. Each appointment Elliot's growth decreased but his intestines always looked good. It was awesome to see him change week by week and get to know his big personality so soon. My fluid started changing from low back to normal with each appointment. The pregnancy was stressful to say the least. I was in beast mom mode wanting everything to be perfect for my little boy and having no control on absolutely anything made me crazy! Hanging out with him in my belly made it all worth it. He was strong! My ribs felt it.

At thirty weeks a few days my doctor decided with my fluid levels being unsteady and his growth declining quickly that there might be something more be wrong and that maybe my placenta wasn't giving him enough nutrients. My next appointment he said that at the next appointment we would talk about giving him the shots to increase his lung maturity because he was thinking Elliot might soon be more safe out than in. He was showing 2lbs 1 oz on the ultrasound so was in the 2 percentile.

That was a Wednesday and my next appointment was a Monday(also was going to meet with Elliot's surgeon one last time before he was born) I did not make it to those appointments.. Thursday at about 3 am I woke up and was bleeding a little. We immediately drove into Boston where they ran tests and sent me home with no answers. Same thing happened on Friday. I was so anxious for Monday to meet with Elliot's real doctor. Sunday I woke up with cramps no bleeding. Elliot was suppose to have his third baby shower that day! I knew I didn't fell right so I figured better safe then sorry we better go in. I was shocked when they told me I was in labor. I knew it hurt but I didn't know that was labor. Shortly after we got there my water broke. I thought I had peed! I was one centimeter dilated so they brought me to labor and delivery. The immediate plan was to stop the labor for three days so Elliot could get the shots for his lungs. They gave me magnesium sulfate to try to stop the contractions. I have never felt so sick in my life! I felt like fire was rushing through my veins and was so nauseas. Between that, contractions and being scared for my baby I was not well. They brought me down for Ultrasound. I kept puking so I think that took awhile. After that they decided that Elliot's nst were not good and I needed to have emergency c section (mean while our families are at the baby shower thinking we will be home at some point that day). I'm not sure what I felt at that time because I was in such shock. Elliot made a little cry when he first came out but they immediately had to put a breathing tube in. I did not see him because they could one show us him for a second and I would puking into a bucket while my stomach was open on the table. I wish I knew more of the details of his first day but I did not see him. 

Elliot was born 31 weeks 5 days. He was 4 lbs 19.5 inches! Double the size we thought he was going to be. Elliot and his dad went to children's after he was stabilized. Elliot had his surgery that night and was recover well. I was so out of it at that point which I'm kind of glad because I would of been freaking about seeing him. But I knew he was safe and strong and I was proud! 

The next day I got to see him. Honestly I did not believe he was my baby at first. I couldn't imagine him fitting in my belly. He was so much bigger than I thought. It was scary seeing him with all the tubes and wires connected to him and he was swollen from the medication from the surgery. The next day he was much better and I got to hold him. That was so amazing. Then the next day both me and his day got to hold him and he was off oxygen. He was doing so great. We had some really great days with him. He was very alert and would focus right on us. He had huge hands and a strong grip. He was very curious. He loved his binky. He loved his head and belly being cradled. He always had his hands be his face. When he woke up he would only open one eye at first. He loved to be held. He was awesome. All the nurses talked about him. His family got to spend some good time with him too but they did not get to hold him. He had so much hair and I think the only trait he got from me was a bump on the top side of his head. 

It is hard to talk about his last two days so I am going so now share what I wrote an his one year anniversary of the most terrifying horrible day of our lives..sorry about the recaps and repeats of some of his story..
(I wrote this June 13th 2013)
 
"Elliot was a fighter. Very strong from the start. He was a superstar of the nicu. He was a pooper from the beginning (this is a big deal for gastro babies). He fought for his life like it was no big deal. He was a deep thinker you, could see it in his eyes. Everyday he looked so different and I fell in love with every face he made. He loved playing with his face and loved his binky. He yawned a lot when he was sleeping. He always grunted and made squeaking noises. He was an escape artist when he was all bundled up. When he had his "sunglasses" on for the lights he always managed to peek one eye at you. He loved to be held. He loved when we put our hands on his head and belly. He was so goofy and serious at the same time. He was so loved. He is so loved."

A year ago was the worst day of my life. I was sleeping in the children's hospital parent room when I get a call from Elliot's nurse to tell me Elliot is getting sicker and I should come see him. When I came to the nicu desk they had said they had moved him to a different spot. When I went to his bed he was getting an ultrasound on his belly. He looked tired. The doctors told me that his morning blood work was not good and that they thought it was an Infection but were not sure . they said they were going to put a breathing tube in so he could use all his energy to fight off what was wrong. There were a few nurses, two doctors ,ultrasound techs an administrative advisor. I helped the nurse put Elliot back into a little incubator while they were running tests and prepping for the breathing tube. They seemed concerned but I thought they were being cautious. I had to step back and let them work on him. The nurse said to me look he's looking right at you. I didn't know that was going to be the last time we would look at each other. I watched them put his little head back as they put the breathing tube. I kissed Elliot and told him the nurses were going to make him feel better. I was so scared for my little boy. I felt helpless. Elliot was sick the day before but they did not realize it because he kept his stats perfect. I was so tired that day watching my baby not feeling well. It was heartbreaking. 

After they put the breathing tube in It seemed to be going well so I asked if it would be ok to go pump and shower while they got him situated. They seemed fine with that. I felt so dirty from sitting in the nicu all day and sleeping in the dorm type rooms, I hadn't pumped in about 10 hours and I hadn't ate since the day before at lunch. As I walked out of the nicu I saw his surgeon walking in so in my head I thought oh good if there is something wrong with his belly he will be able to fix it. I went and did my thing as fast as I could. I wish I hadn't left for that hour. I walked in and I heard a nurse call "moms in the room" there was a lot more staff around him. They had a nurse there to explain to me what was going on. There was another nurse logging all the medication they were giving him from this cart they brought in. They were looking for a central line because they had to take out his other one. They were calling out so many things. One of the doctors was on the phone frantically. She had changed from the heels she was in earlier that morning to her doctor shoes. I stood back as the doctors and nurses said a bunch of things I didn't understand. The people working on him kept looking at his monitors. The respiratory therapists seems to be having complications. I was watching his heart monitor as it kept dropping. A nurse started calling out at 63 I believe. At 59 the alarms went off and they called out "start compressions". 

Almost everyone from the nicu immediately ran over. They asked me if I was sure I wanted to stay and they made me sit down. I couldn't handle it I ran out. I was pacing the hall when I saw two carts being rushed into the nicu. I knew it was for him. The nurse said she would come back with updates. I've never felt so scared and so far from home. Then they brought me in a room with a doctor a chaplain and social worker. They sat me down and the doctor told me they were opening him up in the nicu because they had no time to go to the OR, they told me they were making everything as sterile as possible and they needed to open him up to release pressure on his chest and to see if there was anything wrong with his intestine. She told me he probably wasn't going to make it. The doctor had to go back in and I sat waiting. At this point I don't even think I was crying because I was in such shock. This wasn't happening, my baby can't die I thought. People were in and out. Then the surgeon walked in and I knew. He said my baby had died. A team of doctors and nurses sat around me. I put my head on the table and started crying and weeping no no no. I could hear others cry as the put their hand on my shoulder. They all left the room and I can still distinctly hear the echo of my voice in my moms car speakers as I cried "mom my baby died" then hung up. 
As I waited for everyone to get there they asked me if I wanted to go see Elliot. I remember thinking that was morbid. I didn't want to see my baby not alive. When his dad came we went in to go see him. There he was as beautiful as ever. He was still my baby. He was still there and has never truly left. I wish I had held him longer that day when I was saying goodbye. I wish so many things were different. But as I continue to wish these things everyday or relive these moments over and over, I've learned you can't change it.

In the past year I have learned I am not alone. These memories have to flash through parents mind everyday for the rest of their life. This happens. And too often. There needs to be more done about it. Parents of loss are the voice of their children. Parents of loss join together and we often call it the club no one wants to join. We don't want you to join this club but we need more help beside the faces of loss to make this "club" stop growing.

I've had people say you post things so people feel bad for me. I Don't. I'm a very lucky mom to have the most amazing son. I've had people judge me. That's ok. If you think I'm posting this for attention I very much am. This taboo topic needs to be heard. Not just about Elliot but for every child gone to soon and their families. I want.. I need to make a difference in some sort of way. I want to help in any way that I can to have a parent not go through what I did that day. I want to be an advocate of awareness. I want to support the ones that unfortunately have to live with this ache. Elliot taught me so much and made me so strong. So I hope I'm heard. I hope I can bring knowledge to someone. If one thing i post helps one parent through this journey I've made a difference. If one fundraiser I do goes towards research then I've made a difference. If one person appreciates their child a little more because of Elliot's story then I've made a difference. When Elliot touches the lives of others I am the proudest mom in the world and I'm going to always help Elliot do that. 

Now that Ive gotten your attention there are some things you can do to help! First off hug your children a little tighter. You can also donate to Avery's Angels or March of Dimes. Donating blood or platelets can save so many babies lives. Or go online and pledge to see the movie Return To Zero. ( local leader Rebecca Hayes)

And if you want to make my heart smile just say Elliot's name to me.

Thank you everyone for the support over the past year. Some people have gone above and beyond. Some people have come out of no where. Some people stayed and stuck by my side. For all you amazing people thank you for helping me make the difference I want to and by doing so, helping me be able to mother Elliot.

My biggest thank you goes out to Elliot. He'll always be my baby but he's so much more. He's done so much. I wish I could better share life with everyone.