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Baby Camryn Leena Rose’s Story

June 19th, 2012 by Ashley Garetson

On the morning of February 18, 2012 I woke up in the utmost pain I’ve ever endured. From 8am until 7pm I endured the pain the whole time. Around 7 that night I finally called my doctor and told him I had begun to start spotting and was having terrible back pains. He told me to come in to the hospital just to get checked out. As soon as I hung up the phone I began bleeding very heavy. As soon as I arrived at the hospital all the pains and bleeding stopped. I was checked out by a nurse who said she believed she felt a little bit of cervix but was not for sure. I had no idea what that meant, I assumed it was good. Within 10 minutes my doctor walked in as I was having contractions. He checked me out and said he felt NO cervix and that I was dilated to a 9. I immediately began bawling. My fiance told the doctor there was no way she’s only 28 weeks. My doctor told me there was no stopping the baby now that she was coming whether we were ready or not. Being at a 9 already I could not be transported to a hospital with a NICU as I would deliver on the way. Within an hour the NICU showed up and got everything ready and set up. As soon as they were ready my doctor broke my water. As soon as he broke my water baby girl became breached. He flipped her around but as soon as that happened her heart rate shot above 220 and he rushed me in for an emergency c-section. I ended up having a double c-section (cut my uterus as well). Saturday February 18, 2012 at 11:10pm Camryn Leena Rose was born weighing 2lbs 9oz 15in long. She was life flighted straight to Stormont-Vail NICU (about an hour from where I was). We received our first phone call at 330am saying Camryn was doing AMAZING. As soon as she got there she was taken off oxygen and was doing that all on her own. She had a bubble CPAP that sent pressurized air to her lungs to help them work as she was so small. She also had an IV for her nutrients. I was in the hospital until February 22. Those were the longest three days of my life. Camryn continued to out do herself day by day. On the morning of March 7, 2012 my fiance and I received a phone call that Camryn was not doing well. They thought she had a GI tract infection. When we got there at 930 that morning we received information that she was diagnosed with NEC. Her heart rate was in the 200, her temperature was 100.2 and she was about to receive her 2nd blood transfusion since she arrived there. My fiance and I went back to the Ronald McDonald House as I could not continue to stay there and watch her be in pain. 600pm that night we gave them a call and Camryn was doing better. She was stable; her heart rate was back to normal, her temp was normal. Within the hour we received a phone call saying Camryn had taken a turn for the worse and we needed to get there ASAP. Thank God we were 2 minutes away. As soon as we arrived we were told that as soon as they got Camryn stable the Neonatologist would come talk to us. Withing 5-10minutes the doctor came in. She informed us that Camryn’s heart rate was between 60-90, she was on a ventilator, her ph level was quite low so they were to assume her potassium level was high. I was not ready for what I was about to walk in and see. When we walked into Camryn’s room she had 4 more IV’s in her (not including her picc line), and she was on her ventilator. I went straight to her to talk to her. She was not even able to grab my finger. The Neonatologist informed Craig (my fiance) that Camryn’s survival chances were 50/50 and that whenever her heart rate dropped below 60 they were to do CPR and that every time they lost her they could give Camryn up to four epi pens. Around 830-900 we lost Camryn for the first time. She received three epi pens and they saved her. They put her on the highest powered ventilator they had. Within an hour we lost her for the second time. She received four epi-pens and the doctors and nurses could not save her. Within twelve hours NEC took Camryn’s life. Today Camryn would be 4 months old 1month adjusted. My fiance and I created the Camryn Leena MVP Foundation. Camryn’s foundation was created to help out the NICU Camryn was at and to help the families out as well. We intend within the next two years to create a scholarship for Preemies to apply for; we will give two scholarships each at $500.

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Baby boy survivor

June 19th, 2012 by Natalie Perez

When I found out I was pregnant it was the most amazing feeling in the world, even though I was young and I was not ready I felt so complete and so happy. For 9 months I took the best care of my self possible I ate health I did everything I was suppose to. I was so happy and exited to become a mother. My life never felt so complete. July 26th 2011 I met him. My little Prince Roman Alexander Weighting 5pounds 11oz measuring 19in. Full term and healthy. I was in love. 3 days later we went home. To my surprised the worse was about to happen. After 3 days of being home I noticed while changing his diaper there was blood in his poop. I had no idea if it was normal or not so I rushed him to the er. They did xrays and thought he was only allergic to cows milk but the blood kept coming I was so nervous than the doctor told me something serious was going on and he might need surgery in that moment my tears came gushing out. I was so sad I could believe my baby was sick. After an ultrasound they confirmed he had NEC. Immediately all feedings were stopped and he got an iv for fluid to keep him hydrated the next day they started tpn and lipids trough a pic . He was also on antibiotics. They put a tube down his nose into his stomach and I saw there was blood. I was so scared and heartbroken but I couldn’t give up. A week later my mom left to Mexico because my brother was sick I couldn’t believe everything that was going on. While my son was fighting for his life my brother had lost his. He passed away. I was in the hospital with my son I couldn’t concentrate in anything else than getting my son healthy. After 10 days if antibiotics the infection was gone we began feedings and went home 5 days later. Everything looked good but I would notice my son would cry a lot while passing gas, I thought maybe he had colic. 2 weeks after going home my baby was back in the hospital his belly was distended and soon after he was throwing up they did test and x-rays for about a week than we found he had a narrowing where the infection had occurred once again I was terrified but I knew I had became a mother for a reason and we had gone through so much already. They did a surgery to remove 4in of his intestine I still remember the agony I felt while I was in the waiting room. The surgeons kept me updated on everything that was going on. 3 hours later my baby was out in the NICU. When I saw him after surgery my heart broke he was connected to all kinds of things I couldn’t stand seeing him like that. I would of done anything to make my baby not go through that. I held him all day and night except when they needed to check him. I made sure he felt me near at all times. He slowly started getting better. He is now 10 months and he makes my life so complete him and his dad are all I have with me. My son is funny and smart i’m so blessed he got through everything everyday I thank God for letting me keep him. I love my son so much. He eats everything I give him except dairy. He is a little thin and small but he is healthy. He is a warrior like all the baby’s in this page. My son changed so much lives and everyday I try to be better for him.

Baby Matthijs’s Survival Story

May 30th, 2012 by Jolanda de Boer

Hello everyone,

If my english isnt all that great its because I am from holland.
I am 25 and my daughter (premature) is 7 and my son also premature is almost 2.5 years old.
4 days after he was born, the doctors told me that he was sick and he needed special care in an other hospital.
The ambulance drove him there, and I had to go in an other ambulance, with my husband driving behind us. At the NICU they diagnosed NEC, and they stopped feeding him, and he was treated with antibiotics. For a few days we thought he didn’t need surgery.   Almost a week after he was transferred we wanted to bring his sister with us to the hospital.  Almost immediately the doctors came to us, and they told us that he was getting sicker and so the did an x-ray, they could see a few sick parts and air in his intestines. They rushed him to the operating room and took the sick part out. When he came back he had 2 stomas. I was afraid I could not handle the care of all of this, but my husband helped me through. When our son was 4 months they put everything back together. We were glad to see everything was normal, but it wasn’t. When he was 1.5 years old, he still had diarrhea and his diaper area always was red and bleeding. I had enough of all of this. So we made an appointment at the hospital. After 1 visit they found out that he has short bowl syndrome. He takes medicine now (questran) and everything is going great as we speak 😀 there is hope for all the parents who have a baby with NEC. Here in holland is no such site as this, so i think this is great. lots of love, Jolanda

Baby may have NEC, Mom needs support

May 29th, 2012 by Shaquesta

Hi, everyone.
I found this page through google as I was trying to learn more about this ugly infection. I read a few stories and it breaks my heart to see a baby go through this. You’d think in the year 2012, there would be enough medication to kill this hideous infection. My baby girl was born on April 25 at 29+5 weeks due to incompetent cervix. I already felt guilty having her early but now she is 32+4 and I got some news today that put me in tears. They told me they tested her for blood in her stool an it came back positive, however, they never visually saw any blood. They told me they took her off the breast milk and start her on formula (I forgot the name it it). I asked the nurse will it help with her problem and she told me yes. As I was leaving, I spoke with the nurse again and she told me there COULD BE a chance that my baby have NEC. I’m like what’s that? That’s when she told me what it is. I felt dead leaving the hospital. They’ve done X-rays and her intestines are fine and her belly looked good also. She’s been gassy lately also. She’s already getting antibiotics for her eyes and nose which has bacteria. She told me that those are two completely different things. I’ve been praying so much and so hard. My baby goes hours without a stool, sometimes they help her stool. Every time, it’s a big stool, so I’m just hoping that’s what it is. She’s been doing extremely well since birth. She never had any oxygen, no lung or respiratory problems, taking her feedings…. The only thing she had was a little jaundice that she’s overcome already. I’m so extremely scared. I’ve already lost a son at 21 weeks last year. I can’t take to see my baby go through that. I already feel like such a failure as a mom for take caring her to term 🙁

Baby Brother Campbell’s Story and Baby Brother Joseph’s Survival Story

May 29th, 2012 by Laura Martin

On October 31, 2009, our twin boys, Joseph and Campbell, were born at 24 weeks gestation. Campbell passed away after 23 beautiful days of life as a result of bowel perforations caused by a medication he received.

Joseph spent 228 days in the NICU before coming home on June 15, 2010.

We were slated to bring Joseph home on April 12, 2010 at five and a half months of age. On April 10, just two days before, we received a call from the hospital that Joseph was gray, bloated and they had placed him on a ventilator. How could this be?! The day before, we had spent the entire afternoon and evening with him. We knew he wasn’t feeling well and the doctors had ordered a septic work up but never, ever did we dream he would be on a ventilator the next morning after being on minimal oxygen.

This couldn’t be happening. We had everything set up at home to bring him home that week. We had already buried one child and I feared we would be burying another.

The hours on that Saturday wore on and on. Joseph became more and more bloated and required more and more support from the ventilator. His x-rays were blurry but his intestines had not perforated. We met with the surgeon that night. He gave us all of the grim statistics. If we do surgery and he lives, he will spend so much of his life on TPN that he will die by the age of two waiting on a liver transplant. If we do surgery, there may be no intestine to save.

We decided to wait until morning.

My husband and I went home to try and sleep for a couple of hours. I called the hospital at 5 am and Joseph was slowly becoming more and more bloated. We headed straight to the hospital and told our families to meet us there. When we walked in the NICU, the surgeon had a cup of coffee in his right hand, his left hand on his hip, and was staring at x-rays. I knew they were Joseph’s.

He saw us and said, “We have to do surgery now. His labs are stable and if we don’t take him in now, he may crash. I’m not sure what we will find.”

As our families lined the hallway of the NICU, we followed Joseph and the surgery team to the operating room. We said our goodbyes and feared we wouldn’t see him again. No parent should have to bury a child, let alone two children.

After what seemed like an eternity, the surgeon came to talk to us. Joseph had only 41 cm of salvageable small intestine. Everything else was completely gangrenous. Because he had the minimum amount of intestine to survive, the surgeon gave us the option of closing Joseph up and letting him go. He then looked at us and said, “I don’t know you very well but I know you, and he, are fighters. I would give him a chance.” Of course! For us, there was no option but to give him a chance. Joseph’s twin brother never had a chance of survival but Joseph did.

The surgeon left to finish the surgery and we were able to see Joseph several hours later. We were suddenly thrust from the mind set of going home to knowing we would be in the hospital even longer.

A month later, much quicker than anyone anticipated, Joseph had in intestinal reconnect surgery. Almost one month to the day after his reconnect, Joseph came home for the first time on June 15, 2010 after 228 days in the NICU.

The doctors removed Joseph’s port and took him off TPN the day before coming home. He came home on continuous g-tube feeds. Today, he still has his g-tube and requires continuous feeds at night and during naps. He is learning to take food by mouth and is doing remarkably well.

Joseph is a miracle. It is still a mystery how and why he had NEC at five and a half months of age (almost eight weeks adjusted). It is still a miracle how how and why he is doing so well on such minimal small intestine.

We are blessed.

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