Posts Tagged ‘NICU’

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.

Thank you to all nurses!

Wednesday, May 10th, 2017

Nurse holding babyIf your baby was in the NICU, you most likely spent a great deal of time with her team of nurses. Likewise, if you had a difficult pregnancy, a nurse was probably by your side assisting you the whole way.

Nurses are critical in the care of mothers and babies. Many families who have had a baby born prematurely or with a health condition have told us just how fantastic the nursing staff was at their hospital. Nurses are hardworking, compassionate, highly educated professionals who work around the clock to ensure that you and your baby get the care you need.

In honor of National Nurse’s Week we want to thank all of the nurses that have impacted March of Dimes’ families. In particular, we wish to congratulate the four nurses who won the March of Dimes Graduate Nursing Scholarship Awards.

To recognize and promote excellence in nursing care of mothers and babies, the March of Dimes offers several $5,000 scholarships annually to registered nurses enrolled in graduate programs of maternal-child nursing. The March of Dimes Dr. Margaret C. Freda Graduate Nursing Scholarship Award was established in 2016 to honor long-time March of Dimes National Nurse Advisory Council Chair, volunteer, and friend, Dr. Margaret Comerford Freda. This award is given each year to the highest scoring graduate nursing scholarship applicant. Congratulations to our winners!

Did you have an amazing nurse that took care of you or your baby? How did he or she impact your NICU stay?

Share your story and help us thank all nurses for their unending dedication and incredibly hard work.

 

Why reading aloud to your baby is so important

Thursday, February 16th, 2017

AA baby mom dad brother in NICU.jpg.resizedDid you know that reading to your baby helps promote language skills? Science has shown that reading to your baby helps build vocabulary, speech, and later reading comprehension, literacy and overall intelligence. Yet, less than half of children under the age of 5 are read to every day.

Reading aloud to your child is such an important aspect of language development that the American Academy of Pediatrics (AAP) offers guidance on how to read to your child, including book suggestions for every age.

But what if your baby is in the NICU?

Even if your baby is in the Newborn Intensive Care Unit (NICU), it is still incredibly valuable to read to him. The March of Dimes is partnering with Jack and Jill of America, Inc. to provide books to families who have a baby in a NICU. Parents are encouraged to choose books and read to their babies as often as they can.

In this resource, the AAP explains “Why it is never too early to read with your baby.” They say: “When parents talk, read, and sing with their babies and toddlers, connections are formed in their young brains. These connections build language, literacy, and social–emotional skills at an important time in a young child’s development. These activities strengthen the bond between parent and child.”

Why start reading today?

Today is World Read Aloud Day, a perfect time to start a new routine of reading to your child.

If you’re not sure what to read, you can ask your local librarian in the children’s room. You can also acquire books for a home library at second hand stores or even recycling stations. The “dump” in the town where I raised my kids has a book shed where you can drop off or pick up used books for free. And don’t forget, garage or yard sales are great places to get books for nickels. Having a mini-library at home has been shown to help children get off on the right academic foot.

But perhaps the best reason to read to your child is because it brings you together. The snuggles and cuddles, laughter and silliness that may result from reading a wonderful book, brings happiness to both parent and child.

Whether it is in the NICU or at home, reading aloud to your child is one of the most powerful things you will ever do. So grab a book, snuggle up, and enjoy!

 

Is breastfeeding a preemie different than a full term baby?

Friday, February 3rd, 2017

preemieThe answer is yes.

You’ve probably spent the last few months anxiously getting ready for your baby’s arrival. You’ve probably also thought about and decided how you are going to feed your baby after birth. Unfortunately, your breastfeeding plans may need to change in order to accommodate your baby, if you gave birth prematurely (before 37 weeks of pregnancy).

Breastfeeding in the NICU

If your baby is in the NICU, you may need to start pumping to establish your milk supply. Although you won’t have your warm baby at your breast, give your baby any expressed colostrum or milk you produce. Breast milk provides many health benefits for all newborns, but especially for premature or sick babies in the NICU.

Read our tips and tricks to breastfeeding your baby in the NICU.

Late preterm babies

If your baby was born late preterm, between 34 weeks and 0 days and 36 weeks and 6 days of pregnancy,  the good news is that she may not need to spend any time in the NICU. The bad news is that breastfeeding a near-term baby can be very difficult. Late preemies are often very sleepy and lack the energy they need to latch, suck and swallow. Also, late preterm babies are vulnerable to hypothermia (low body temperature), hypoglycemia (low blood sugar), weight loss, slow weight gain and jaundice among other conditions, which may interrupt your breastfeeding progress.

Full term babies

Breastfeeding a full term baby has its challenges, too. But, compared to a preterm or late preterm baby, there are more opportunities to be successful with breastfeeding from the start, due to fewer health obstacles.

Stay positive

If your baby is spending time in the NICU or having trouble breastfeeding, the breast milk you provide your baby through expression or pumping is very beneficial to his growth and protection from illness and infection. Seek help when you need it through a Lactation Consultant, a nurse or your health care provider. If you are in the hospital, ask your nurse if they have a support group where you can connect and share with other moms going through the same situation.

Learn more in Breastfeeding 101.

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

 

Parent navigators – a lifeline for NICU moms and dads

Tuesday, January 17th, 2017

Preemie on oxygen.jpg resizedIf you’re the parent of a baby born prematurely, you know the stress and anxiety that is a part of having your baby in the Neonatal Intensive Care unit (NICU).  Even if the entire NICU staff is super supportive and answers your every question, you may still feel like you’re on an ocean in a life raft without oars or directions. The feeling can be overwhelmingly scary.

Then, once your baby is discharged from the NICU, you may begin a whole new journey of medical visits, specialists, therapies, and figuring out the complex world of health insurance. If your baby has special healthcare needs, these next steps may be confusing at best.

Enter Parent Navigation Programs. These are programs designed to assist parents of children with special healthcare needs. The hook is that parents are assisting parents. The parent navigators have been in their shoes, as they have children with special healthcare needs.

One of our NICU Family Support Partner hospitals, Children’s National Health System in Washington D.C., employs parent navigators to provide support to parents of children with complex medical conditions. They help the parents of newly diagnosed babies or young children navigate the complicated healthcare system to get the care their child needs and to access vital community resources. And, perhaps the best part is that these parent navigators provide the emotional support that only another parent of a special needs child can fully understand.

Children’s National started their Parent Navigator Program in 2008, and is now launching a new program aimed specifically towards parents of newborns in the NICU. These babies may be born prematurely (before 37 weeks of pregnancy), with complex medical conditions and/or with birth defects.

“This short-term, peer-to-peer “buddy” program looks to decrease stress, anxiety and depression in mothers of NICU babies during hospitalization” says Michelle Jiggetts, MD, MS, MBA, Program Administrator of the Complex Care Program and the Parent Navigator Program at Children’s National.

The success of this new program will be measured scientifically, by looking at the differences between parents who leave the NICU with a parent navigator, and those who do not. They will measure caregiver stress, anxiety and depression, as well as the amount of healthcare services a baby uses after leaving the NICU. The hope is that the group that had the benefit of a parent navigator for a year following their baby’s hospital discharge, will fare better overall – both parents and baby. You can learn more about this unique program, here.

According to Dr. Jiggetts, the parent navigator’s role is to:

  1. Provide peer-to-peer mentoring and support
  2. Link families to community resources and support groups
  3. Coach parents to be active partners and communicate effectively with health care providers
  4. Suggest useful tools (e.g. care notebooks) to help organize medical information
  5. Help families navigate the healthcare system and insurance issues
  6. Encourage families to focus on self-care

It seems like a no-brainer that a program like this will be incredibly helpful. As we all know, babies don’t come with instruction manuals, and infants with special healthcare needs have their own intense challenges. Having a peer “buddy” available to provide the low-down each step of the way must be a life-line that any parent would appreciate, but especially a parent of a preemie or baby with a health condition.

Even though you’re in a life raft on that ocean, you’ve now been given oars and a compass, and land is in sight.

 

Helping your baby thrive in the NICU

Friday, December 2nd, 2016

This video clip contains great information on nurturing your baby in the neonatal intensive care unit (NICU). In the video, real NICU parents describe different ways to bond with your baby while in the hospital, including skin-to-skin or kangaroo care.

 

 

For more helpful information about caring for your baby in the NICU, please visit our website. Learn about resources and support that can help you and your family while your baby’s in the NICU. Also, you can go to Share Your Story, the March of Dimes online community for families to share experiences with prematurity, birth defects or loss.

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

What if my baby needs surgery?

Friday, November 11th, 2016

mom-and-preemieThe idea of surgery is scary for anyone. But learning your premature baby needs to have surgery can be terrifying. Learning what you can expect may make things a little easier. The following information is adapted from Preemies: The Essential Guide for Parents of Premature Babies.

Ask a lot of questions

  • Talk to your baby’s neonatologist, the surgeon who will be operating, the anesthesiologist, and any other specialists who may be involved in your baby’s care.
  • Don’t be afraid to ask ANY questions that you have. It may be helpful to write them down as you think of them so that you don’t forget to ask when you see your baby’s doctors.  You may meet with someone unexpectedly and you will not want to miss the opportunity to get answers to your questions. Perhaps keep a notebook or pad in your handbag so you can jot down your thoughts as they cross your mind.
  • Also, take advantage of talking to the NICU nurses. They have cared for many preemies and understand your fears and concerns and can give you an idea of what is going to happen.

Surgery

  • Most premature babies are put under general anesthesia for surgery. This means that your baby will not be able to move during the surgery. She will not feel any pain or have any memory of the procedure.
  • If general anesthesia is used, your baby will not be able to breathe on her own and will need to be on a ventilator.
  • The surgical team will be monitoring your baby to make sure she is as comfortable as possible. During the surgery, your baby will be kept warm. The room temperature will be raised and she will be covered as much as possible. IV fluids may be warmed as well.

Recovery

  • Preemies need very special care after surgery. Immediately after surgery, your baby will remain in a recovery area while the anesthesia wears off.
  • The surgical team will then accompany your baby back to the NICU and update the neonatologists and bedside nurses.
  • It will take some time for the anesthesia to leave your baby’s body. This means she may be on a ventilator to help her breathe. If your baby didn’t have a breathing problem before surgery, she may be removed from the ventilator within hours or up to a few days after surgery. Babies who did have breathing problems will most likely need to be on a ventilator for a longer period of time.
  • Pain can delay healing and recovery, so your baby’s NICU team will be watching carefully for any signs that she is uncomfortable. The medication your baby receives to manage pain depends on a number of factors. Make sure you ask the doctors and nurses if you have concerns.

Asking questions and understanding what to expect before, during, and after your baby’s surgery, can help you feel more confident and better prepared for the procedure. You may also find it helpful to talk to other parents who have been through a similar experience with their preemie. Share Your Story, our online community, will allow you to connect with other moms and dads who can offer advice and support.

And, of course, we are here to answer any questions you may have. Send them to AskUs@marchofdimes.org.

 

 

 

 

It’s Prematurity Awareness Month – Come chat with us!

Monday, October 31st, 2016

parents in the NICU

We have several Twitter chats scheduled in November, in honor of Prematurity Awareness Month.

Please join us:

Wednesday, November 2 at 1pm ET with neonatologist Dr. Suresh of Texas Children’s Hospital. Use #preemiechat

Topic:  Prematurity – causes, complications, and coping in the NICU

 

Wednesday, November 9 at 2pm ET with Mom’s Rising. Use #WellnessWed

Topic: Can your preconception health reduce your chances of giving birth early?

 

Tuesday, November 15th at 2pm ET with Genetic Alliance and Baby’s First Test. Use #preemiechat

Topic: Is prematurity caused by genetics? Can it run in families?

 

We hope to see you on Twitter!

For questions or more information about these chats, text or email AskUs@marchofdimes.org

birth announcement

Respiratory Therapists help babies and families breathe easier

Wednesday, October 26th, 2016

help-breathingIf your baby is in the neonatal intensive care unit (NICU), it can be nerve wracking to see him hooked up to machines, especially if he is having difficulty breathing. This is when a respiratory therapist (RT) can help.

“If a baby needs respiratory support, parents should not be afraid. We give them only what they need” says Ana Anthony, a respiratory therapist at Children’s National Health System in Washington, D.C., one of the finest children’s hospitals in the nation.  Ana notes that “Every day may be a different challenge. The babies will go through ups and downs – the body is very complex. Our goal is to have the baby breathe on his own.”

It’s Respiratory Care Week, a time to recognize the respiratory care profession and to raise awareness for improving lung health. According to the American Association for Respiratory Care, “Respiratory therapists provide the hands-on care that helps people recover from a wide range of medical conditions.”

Respiratory therapists work in a variety of settings including a hospital NICU. Babies born too early run the risk of having breathing problems because their lungs may not be fully developed. Other babies might have breathing issues because of an infection or birth defect.

Due to numerous medical breakthroughs, more and more babies who need treatment for breathing problems or disorders benefit from respiratory therapy. In fact, neonatal respiratory therapy has become its own medical sub-specialty. A neonatal-pediatric RT is trained to use complex medical equipment to care for the smallest babies with mild to severe breathing challenges. They visit their patients daily, as often as needed.

You may have been introduced to your baby’s respiratory therapist if you have a baby in the NICU. A respiratory therapist would have evaluated your baby’s breathing soon after your baby arrived. The RT looks to see if your baby is breathing too fast, if the breaths are shallow, or if your baby is struggling to breathe. Then, together with the NICU healthcare team of doctors, nurses and other specialists, the RT develops a care plan to help your baby.

Respiratory therapists are rigorously trained, first earning a college degree and then specific certifications. For example, Ana holds several credentials: a BSRC (bachelor’s degree in respiratory care), RRT-NPS, (registered respiratory therapist with a neonatal pediatrics specialty), AEC (asthma education certification) and ECMO (extra corporeal membrane oxygenation). If these titles sound impressive, it’s because they are! RTs are put through intense education and hands-on training and stay current with breakthroughs or changes in the field by obtaining different certifications.

Ana Anthony speaks for all RTs when she says “We love what we do and strive to have the best outcome possible for all our patients.”

 

You can learn more about respiratory issues that preemies may face, in our article. Did your baby receive care from a respiratory therapist? Tell us about your experience.

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

Note:  This post is part of the series “Delays and Disabilities: How to get help for your child.

 

Give them tomorrow

Wednesday, September 7th, 2016

Give them tomorrowToday is an important one here at the March of Dimes.

Today we launch our new campaign, Give them tomorrow, to raise awareness and funds to fight birth defects and premature birth, the #1 killer of babies in the United States.

This campaign is different. You have the opportunity to help give a fighting chance for every baby by:

  • sending a message of hope to a family of a baby in the NICU (newborn intensive care unit), which the March of Dimes will hand-deliver.
  • sharing your baby’s first milestones at #babysfirst with our social community.
  • engaging with us on World Prematurity Day, November 17th to raise awareness and learn about the cutting edge prematurity research that saves babies’ lives.

We have set a goal to generate 380,000 actions to save babies’ lives, to symbolize the 380,000 babies born too soon each year in the U.S. That’s 1 in 10 babies born prematurely (before 37 weeks of pregnancy). This rate is higher than most other high-resource nations.

Even babies born just a few weeks too soon can face serious health challenges and are at risk for lifelong disabilities including breathing problems, vision loss, cerebral palsy, developmental delays and intellectual disabilities. The problem of prematurity involves babies being born too soon and often with birth defects and complications that affect them for life — that’s if they make it through the first critical days and weeks. There are so many challenges for these babies and their families from day one that tomorrow is a dream.

Give them tomorrow is supported by our corporate partners who are committed to saving babies’ lives. Partners in 2016 include Mud Pie, Philips Avent, Famous Footwear, ALEX AND ANI, ALDI, Bon-Ton, and Anthem Foundation.

Won’t you join us today as we make a difference in the lives of all babies?

Together we can give them tomorrow by doing something today.

 

We're in this together

 

The March of Dimes is the leading nonprofit organization for pregnancy and baby health. For more than 75 years, moms and babies have benefited from March of Dimes research, education, vaccines, and breakthroughs. For the latest resources and health information, visit marchofdimes.org and nacersano.org. You can also find us on Facebook or follow us on Instagram and Twitter.