Archive for May, 2012

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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Baby Landon’s Survival Story

May 29th, 2012 by Rebecca Buchholz

Landon was delivered via emergency c-section Easter Sunday, April 24, 2011 @24 weeks. I developed a sudden onset of severe preeclampsia/ HELLP. He weighed 1 lb 2 0z and 11 1/2 inches long. he was a fighter from the start and he had the best primary nurse to help us through everything.
He was doing well, taking a little of breast milk at a time, opened his eyes, seemed very alert and showed his annoyance of his nest. A week or so before Mothers day his stomach started turning black/blue and become distended and more noticeable. He wasn’t tolerating the breast milk and seemed very uncomfortable. A drip was placed to try to drain whatever was causing his discomfort; didn’t work.
On mothers day he had an exploratory surgery, it was decided that day and it was the hardest decision to make, he was so tiny and frail. Surgery seemed to take forever. it was found that 60% of his bowels were bad, luckily there would be enough left after removal for a life to live; what type of life we were not sure. He made it through surgery and became puffy and once again uncomfortable. His abdomen was not closed, only the inside which needed to heal first. Landon had an colostomy bag and whatever he would produce would be put in the other side to get his bowels working the way they needed to.
August 12, 2011, two days before his due date he had his ostomy takedown surgery and was reconnected. His scar reaches hip to hip and will grow with him.
He had two major surgeries between the previously mentioned for a heart murmur and central line placement. Around 5 months 1 month adjusted he developed pnuematosis and was brought back to one of the critical NICU rooms. All the staff was worried and knew him very well. whoever was working and could be by his side was there to check on him.
Landon made it through everything, there were tough times and funny times. Even though he went through a lot he is a happy boy who loves attention and hates being alone. Guess that comes from so much attention for 7 month in the NICU.
He is now 1 year old 8 months adjusted , 14 lbs 8 oz and 26 inches long with two teeth! loves his jumper and is very active. He takes Neocate for formula and will have a limited diet when he gets older. He love peas but not green beans so much. we will start on the next color for food in a little while.
Mothers Day 2011 was one of the hardest days for our family; next to Easter 2011. But if we had not done the surgery this would have been a completely different story. When it comes to NEC, you can not rush the feeding process; it only sets you back a couple of steps.

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Baby Jason’s Story

May 16th, 2012 by Andrea

This is about my son Jason. My husband and I tried for 6 yrs to have a baby and in august of 2011 we found out we were finally going to be parents. It was the happiest days of our lives. Everything was going great with the pregnancy. My doctor even said I was having a text book pregnancy. Two weeks later I stated spotting I called the dr office and got the answering service they told me not to worry its probably nothing. Just lay down and relax. My gut told me differently and had my husband take me to the hospital. When we arrived they medical staff said it was a good chance it was nothing. I was checked just to find out I was in labor 3-4 cm. I was taken to the hospital that nicu. My son was born at 24 wks 5 days at 5:34 am 14 1/2 inches long and 2 lbs 1oz. Breathing on his own he even came out crying we didn’t get to hear cause the took him away so fast. We were told he was doing great on feb 2 I got to hold him for the first time. Two days later we got a phone call saying he took a turn for the worst and was being transfer to a children’s hospital. We were told he had developed NEC. Which lead to bp/breathing problems. At 2:45am he had his first of very many surgeries. There was lots of up and downs. Finally in march he was having lots of good days we were told we would be able to bring him home and to go ahead and have a baby shower. Just over two weeks later when visiting him something didn’t seem right. He hadn’t peed in over 12 hrs. We left the hospital and came home we had a funeral to go to in the morning. We got up the next day April 4,2011 our hearts told us something is not right we went up to the hospital instead of the funeral. He was no longer hook up to many meds the only thing going was the monitors. We were pulled into a private room and was told the NEC took over he went into multi organ failure. We took him off life support he passed away in arms that was only the second time I got to told him the first for my husband. Our son Jason passes away in my arms at 1:20pm on April 4,2011. I still find myself crying for him about 1-2 times a week. I miss him so much the only thing that seems to help is two months after he passed we found out we were pregnant again and have a beautiful baby girl.