Posts Tagged ‘NEC’

NICU dad x 2 – the story of Jack and Josie

Friday, June 16th, 2017

Kyle Daddio and son JackIf there is one father who can talk about being a NICU dad, it is Kyle Daddio.Kyle Daddio and daughter Josephine

His son, Jack, was born at 26 weeks, more than 3 months prematurely. His daughter Josephine “Josie” came along three years later, born at 26 weeks as well. Both babies weighed one and a half pounds at birth.

Jack spent 121 days in the NICU, while Josie clocked in at 91 days.

Fortunately, Jack is doing well now, and Josie has recently gone home from the NICU to join the family.

In honor of Father’s Day, we asked Kyle to share his feelings about being a NICU dad, and to offer tips to new dads going through a similar experience.

What was the hardest moment you experienced in the NICU? 

February 13th, 2014, when our son Jack was 7 weeks old. It was the worst day of my life. It was a Thursday and, like I had been doing every day, came into the NICU early in the morning before work to read the newspaper with Jack while he was in his isolette. On Monday evening of that week Jack’s nurse had noticed that his belly started to become distended and was concerned. They began pumping him with antibiotics, running tests and getting x-rays.

The result was that he had Necrotizing Enterocolitis, NEC, which is an infection in the bowels. By Thursday morning his condition had not improved and the NICU staff was doing everything they could not to have to perform surgery. On that Thursday morning while I was reading the paper with Jack, he flat-lined. I was rushed out of the room while all the nurses and doctors ran in. His stomach was so distended that his lungs did not have enough room to fully expand, and it eventually became too difficult for him to breathe even on a ventilator. I was let back in the room about 30 minutes later to see Jack on an oscillator. I called my wife Katie to come down to the hospital and the doctors notified us that surgery was now more possible.

When he flat-lined again at 2pm, surgery was now necessary and the surgeon came in to speak with us. He notified us that given Jack’s small size (2/1/2 lbs) they were unable to know exactly how severe the infection was, and that this type of surgery at his size, given his current condition, had a success rate of less than 50%. A nurse then approached Katie and I with some holy water and said “I read on your form that you’re Catholic. You should baptize your son now.” We baptized him, and then followed the nurses and doctors as they wheeled Jack into the operating wing.

In the hall approaching the OR, Jack flat-lined for a third time. They resuscitated him and brought him into the OR for surgery. At that point we had no idea what was going to happen. We went back down to the NICU family room and sat silently waiting for a report from the OR. Many of the NICU nurses came and sat with us during that time, which was an incredible gesture. After nearly 2 hours, a call came down from the OR that the surgery was successful and Jack would be back down to the NICU for recovery in an hour or so. They removed his sigmoid colon and gave him a colostomy bag. The surgeon later told us that from a surgical standpoint it was a very good situation. The infection was focused on a small area that could easily be removed and should not have long standing effects on Jack’s GI tract. He is now a happy and healthy 3 1/2 year old and has had no resulting issues.

As a father and husband, how did you take care of yourself as you were taking care of your family throughout this difficult period?

My one advice I always tell other dads is you have to cry. You have to process your emotions at some point otherwise you will never get through it. For me, it was most mornings in the shower. On the nights that we actually slept, I would wake up in the morning and think “how am I going to get through another day of this. This isn’t how it was supposed to go.” Once those emotions hit you, you can’t push them down, you have to let them out, otherwise you’re not helping yourself and its going to begin to affect those around you.

The second thing you should do is use your support system. We were lucky enough to have our family near when Jack was born in NY, and they were absolutely amazing. When Josie was born in Colorado, family began jumping on flights the second they got the news. My father arrived the day before we delivered and my mom and brother arrived the day she was born. They made sure we had nothing to worry about other than being at the NICU with our kids, and they were very good about taking us out to get our mind off of everything. Taking us out for dinner, taking us to the movies, anything to step away from everything for a few hours.

Any tips for new NICU dads on how to support your wife or partner during this process?

My wife takes care of everything in the house, so anything I could do to shorten that list was help to her. With our son Jack, he was born while we were visiting our family in NY, so we were living at my aunt and uncle’s house for the nearly 5 months while he was in the NICU. It was an incredible gesture for them to have us but it wasn’t home. So I traveled back to Chicago to get some items that would help with our everyday lives.

With our second trip to the NICU with Josie, we had our 3 year old son Jack at home, so spending time with him so that Katie could be at the hospital with Josie was my main focus. Jack had school every day and therapy in the afternoon 2 days a week, and I was lucky enough to be able to work from home for the first 2 months of Josie’s NICU stay and help with Jack.

The most important focus for me was to make sure that Katie was getting as much time as she needed with our baby at the hospital.

What’s some advice you wish you’d had when your baby was born prematurely?

Knowing the possibilities. What are the chances that our child could be born prematurely? Why could they be born prematurely? If they’re born prematurely, what are the risks and things that can happen in week 1, week 2, etc.? We had no knowledge of anything dealing with prematurity. We had never been introduced to the March of Dimes or knew anything they did with prematurity research. It wasn’t on our radar and so we never thought about it. Our doctors never spoke about it and we never thought we were at risk so why would it ever happen to us? We joke now that after 212 days in the NICU between our two kids that we have a full year of nursing school under our belts. I have learned things and seen things that I would never have thought of prior to this experience.

We want to thank Kyle for sharing his story and giving his advice. We wish him, other NICU dads, and all fathers, a wonderful Father’s Day.

Please feel free to send a message to Kyle and his family or to share your NICU story with us.

Necrotizing enterocolitis (NEC)

Friday, November 20th, 2015

Passing the time while your baby is in the NICUNecrotizing enterocoloitis, also known as NEC, is a condition of the intestinal tract that almost only affects premature babies. It often begins 2 or 3 weeks after birth and appears in preemies who seem to be getting better. NEC occurs when the lining of the intestine becomes inflamed. Most of the time, the damaged section of the intestine will heal on its own. But in some cases, the tissue dies. When this happens, that part of the intestine no longer works the way that it should. This damage may cause the intestine to tear. The bacteria in the intestine can then enter the blood and this can then lead to infection throughout the body.

What causes NEC?

Researchers are still not exactly sure what causes NEC. But in premature infants, it is probably related to the immaturity of the baby’s intestine. Some other factors that may contribute to NEC include:

  • An injury to the immature intestine
  • Reduced blood flow to the intestine
  • Growth of bacteria in the intestine that damages the intestinal wall

What are the signs of NEC?

NEC can be difficult to diagnose. The early signs can be similar to other infections or to problems caused by feeding difficulties often seen in preemies. However, NEC can get worse very quickly. Some common symptoms include:

  • Loss of appetite, not tolerating feedings
  • Red, painful, and swollen belly
  • Diarrhea or bloody stool
  • Decreased activity
  • Body temperature instability (may be lower than normal or fluctuate)
  • Episodes of low heart rate or apnea
  • Sometimes greenish vomit

Doctors can diagnose NEC with an X-ray of the belly.  When they examine the X-ray, they are looking for tiny gas bubbles inside the walls of the intestine. They can also see if air has leaked out of the intestine through a tear or hole.

How is NEC treated?

Early diagnosis and intervention is very important. Typical treatment includes:

  • Stopping oral (mouth) feedings and replacing with IV nutrition to give the bowel time to rest,
  • Inserting a tube through the nose and into the stomach to remove air and other secretions from the intestine,
  • Giving broad-spectrum antibiotics to treat and prevent infection,
  • Continuous monitoring using X-rays, blood and urine cultures,

If these interventions work, NEC typically lasts 2-3 weeks, although the critical stage is often over after a few days. Usually doctors will continue IV feedings until the intestines heal and the pockets of gas have been gone for 5 or more days. They will then start to gradually re-introduce oral feedings.

Surgery may be necessary for those babies who do not respond to the treatments above. In that case, the surgeon will remove the damaged section of intestines.

How can NEC be prevented?

Researchers are trying to better understand NEC so that they can prevent it. However, here are some things that seem to be beneficial:

  • It is important to start oral feedings early. The introduction of tiny amounts of milk to the digestive system may help the intestine to mature faster and possibly reduce the chance of your baby developing NEC.
  • Early feeding with colostrum and breast milk may be beneficial. It is easy to digest, supports the growth of good bacteria in the intestine, and helps to build your baby’s immune system.

If your baby has NEC or had it in the past, please go to Share Your Story where you can connect with other families and find comfort, support, and advice.

Have questions? Text or email us at AskUs@marchofdimes.org.

Don’t give SimplyThick to premature babies

Monday, May 23rd, 2011

simplythickThe Food and Drug Administration (FDA) is urging parents not to give premature babies (babies born before 37 weeks of pregnancy) the thickening product called SimplyThick. The product may cause a life-threatening health problem called necrotizing enterocolitis (NEC). With NEC, tissue in the intestines gets inflamed and dies.

Some premature babies have trouble swallowing. SimplyThick is a product that’s added to breastmilk or formula to make it thicker. Health providers recommended SimplyThick because it helped premature babies swallow their food and keep it down, without spitting it up. SimplyThick was available from distributors and local pharmacies.

The FDA learned that some babies got sick with NEC after they were sent home on an eating plan that included SimplyThick. Sadly, some of these babies died. NEC most often happens early in a premature baby’s life while she is still in the hospital, not after she’s sent home. NEC is very dangerous to a baby’s health.

At this time, the FDA isn’t sure what about SimplyThick is making babies sick. The organization is actively looking into the link between SimplyThick and these illnesses and deaths.

In the meantime, the FDA urges parents to stop using the product immediately, even if their babies don’t appear to be sick.

Call your baby’s health care provider if she shows any of these signs:
• bloated stomach
• greenish-tinged vomiting
• bloody stools

For more information on SimplyThick and the risk to premature babies, visit the FDA website.

If your preemie needs surgery

Friday, January 14th, 2011

As if parents of a premature baby don’t have enough to worry about, sometimes their baby needs surgery. Some babies require surgery to repair a heart defect, or NEC (necrotizing enterocolitis – a serious problem with the intestines) or other bowel condition. Some require the surgical insertion of a central venous line to receive special nutrition or antibiotics. Others may need a shunt placed to drain excess fluid from the brain, or hernia repair, or surgery to prevent reflux…

Preemies: The Essential Guide for Parents of Premature Babies can be a valuable tool for parents. When discussing possible surgery for a baby, the authors offer four important points for parents to consider:

1 – Do you know why your baby needs surgery, what the benefits and risks of the procedure are, how urgent it is, and what’s involved in her recovery? In other words, do you know enough to give “informed” consent for the operation?

2 – Do most doctors agree on the best treatment for your baby? If there are alternatives to surgery, do you know their risks and benefits, and what would happen to your baby if surgery weren’t done?

3 – Were you and your partner given enough time to reflect, have family discussions, and reach a considered decision about your baby’s surgery? Are your values and feelings being taken into consideration by your baby’s doctors? Has the medical staff been supportive?

4 – Do the doctors and nurses know how to reach you shortly before, during and after the surgery?

The main focus here is to gather as much information as you can.  Write down your questions whenever they pop up so you won’t forget any of them, and then review them with your baby’s doctors. There is no such thing as a stupid question, so never be shy about asking a question or speaking up if you don’t understand. This is true at any time, while in the hospital and throughout your child’s life.  Communicate – information will help you make the best decisions.