Don’t Expect Hospital Upgrades to Improve Family-Centered Care in the NICU

A couple of years ago I was on a work trip in California, and while most of the country was still in the economic doldrums, I noticed quite a bit of new construction taking place. Upon closer inspection I realized that many of these buildings were going to become new hospitals.

Hospital executives across the country have justified expensive renovation and expansion projects by saying they will lead to better patient reviews and recommendations. One study estimated that $200 billion has been spent over the last decade on new buildings. Patient opinions have become even more important to hospitals since Medicare started publishing ratings and basing some of its pay on patient surveys.

My work is focused largely on prematurity and where our babies are cared for. Children’s hospitals and neonatal intensive care units have seen an explosion of growth and expansion over the last decade, which was well documented in a story in Business Insider: Prematurity Rates are Too High and Children’s Hospitals are Cashing In.

In the Kaiser Health News report, Growing Size And Wealth Of Children’s Hospitals Fueling Questions About Spending, Martin Gaynor, an economist at Carnegie Mellon University who has written extensively about hospital spending, says he was stunned when he toured the new Pittsburgh hospital.

“I couldn’t believe it,” he said. “It’s a beautiful, beautiful facility. It’s a very nice facility for the families and kids.

“It’s a very awkward question to ask,” Gaynor added, “but at some point one wonders just how nice does this have to be?”

Dr. Zishan Siddiqui at John Hopkins asked a similar question after they spent $1.1 billion on the construction of a tower and a new children’s hospital.

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Understanding Prematurity – How to Talk to Parents of Preemies

A Resource for Family, Friends, and Supporters

Graham's FoundationWhen a baby is born early and needs the kind of care only a neonatal intensive care unit can provide,it can be so hard to know what to say to the mom and dad standing watch over the isolette. When I was in the NICU with my daughter – even though she was relatively strong and her stay was relatively short – there were people in my life who retreated from my family because they were as afraid to say “Congratulations” as they were to ask “What does prematurity mean?” I understood their hesitancy because I was as unfamiliar with premature birth as they were, but it still hurt.

Being a parent of a preemie is tougher than most people know, especially in those early days when moms and dads are trying to figure out what prematurity will mean for their families while also coping with the challenges of having a baby in NICU. With that in mind, I’d never suggest that friends and family of parents of preemies say anything at all just to avoid saying nothing.

A report put together by the Inspire Preemie Support Community showed that 55% of mothers surveyed felt stressed out or isolated by insensitive comments (like how lucky they are to miss the later stages of pregnancy or to sleep through the night because nurses are caring for their preemies) and 20% described losing important relationships because of those comments.

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How My Preemies Taught Me to Fly

Our twins, Reece and Graham, were born 15 weeks premature on Thanksgiving day 2006. Our son did not catch the breaks you need when you’re born that early and after 45 days, we had to say goodbye. Our daughter spent 119 days in the hospital before we finally brought her home. As preemie parents know, the journey is long and in many ways, it really begins when you bring your baby home.

I have always wanted to be deeply involved with an organization where the mission mattered to me. I have been active with several non-profits since my college years as either a volunteer or board member, some to build my resume, others to build relationships and others where the mission mattered… deeply… to someone else but ultimately, not me.

In fact, I started to get involved with the American Heart Association because I grew up with a heart condition and had successful open heart surgery at age 19, so I was a candidate for “mission matters” involvement, but for whatever reason I didn’t feel the emotional connection in my core.

That all changed when our twins were born and our world turned upside down. After losing our son, I knew my life’s mission.

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A Preemie Mom to Preemie Daughters

This story was shared with us by preemie mom Emily. To share your own story, click here.

The NICU has been with me since the day of my birth. I’ve known that colloquial acronym for the neonatal intensive care unit for as long as I’ve known a child’s basic vocabulary, because I spent ten weeks there as an infant.

I never expected I’d be in one again, twice, as a parent to my own premature daughters.

I was born twelve weeks early, in the late 1970s, weighing 1 lb 15 oz, or 858 grams if you want to put it in the terms of the neo-natal intensive care unit. I stayed in the NICU for ten weeks, experiencing the stories that shaped my childhood questions to my mom of “tell me again about when I was born!” I learned that I’d had to learn how to breathe on my own, that I’d nearly died more than once, that doctors and nurses (always the heroes of the stories) had saved my life more than once, and that priests had baptized me more than once, just in case. I learned that the scars on my neck came from feeding tubes, and that the roughness on my heels served as a reminder of weeks and weeks of heel-prick blood draws. I learned that the one picture of me in my baby book – head too large for my body, skin too dark, eyes too wide, even though it was my homecoming day – didn’t look anything like the pictures of babies I saw everywhere else. I learned, too, that preemies are survivors and fighters, that life isn’t always easy for us, but we cling tenaciously to what we fought so hard to achieve.

When my own kids came along, larger and healthier and with far shorter NICU stays than I myself had faced, I broke all the rules.

My first daughter, now a happy and thriving seven-year-old, was born at 4 lbs, 9 ounces, at 34 weeks and 6 days gestational age. One more day, or a few more ounces, and I could have taken her home with me. She breathed room air, and nursed just a bit on her second day. I understood they had to prick her heel; that was how preemies had their blood drawn. But did she really need an IV tube in her head, the only place they could find a vein that worked. She looks so healthy, I kept insisting to anyone who would listen. I was too tired, too stressed, too stunned that an otherwise pretty healthy baby could still be a preemie, to see that the nurses needed to let me relax and let them do their jobs.

When we brought her home after a mercifully short 9 days, I nursed her as much as I could, switching her off bottles as her strength increased, until almost all her food came direct from the source. We took her on a stroller walk on a glorious fall day just 2 days after she came home. I carried her around town in a baby wrap, and people wondered at the tiny creature, smaller than most newborns, tucked safely inside. I took her to the grocery store, the mall, and to a fiber arts conference. Her grandparents chided me, reminding me that someone so small needed to be protected from germs, sheltered, until she was stronger. She nestled against me in her carrier, secure, content.

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Parents of Preemies Share Their Preeclampsia Symptoms

For Preeclampsia Awareness Month, we asked our community of preemie moms to share the symptoms that they had. Some looked a lot like normal pregnancy symptoms while other preeclampsia symptoms were definitely more alarming! And in few cases, preeclampsia was diagnosed with no symptoms at all!

While preeclampsia is relatively rare, it’s important to watch out for symptoms because left untreated it can develop into HELLP syndrome or eclampsia. It can also hurt your baby! Your doctor or midwife will screen you for preeclampsia at every prenatal visit by taking your blood pressure (and testing your urine for protein if it’s high), but if you know what to look out for you can potentially catch it early – before premature delivery is the only treatment option left.

Here are some of the symptoms our preemie moms shared:
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Thoughts On Celebrating a Preemie’s Birthday

This post comes from Graham’s Foundation Preemie Parent Mentor Brandi – many parents will be able to relate to her experiences celebrating her preemie’s birthday, which have come with ups and downs.

On Thursday, my son turned two.  We have been preparing for the celebration by making a practice cake and cupcakes with buttercream icing.  We have been practicing blowing out candles.  We have been singing “Happy Birthday.”  

This is the first birthday where I am not propelled backwards into memories of a pregnancy cut short, of the uncertainty and disconnect I felt while watching my son in his isolette, of feeling solely responsible for not being able to carry him to term.  I consistently monitored the developmental milestones to see where he may be falling short.  Overall, he was doing really well.  There were no major issues. His health was good.  When he got sick, it easily went to his lungs and we needed to use a nebulizer.  

He has come a long way in the two years.  Just by looking at him, you couldn’t tell that he was a preemie. He is a taller two year old who weighs 30 lbs and I am still amazed that we both are here. My son’s birth was by emergency cesarean section at 29 weeks and 0 days, due to Pre-Eclampsia and Hellp, weighing in at 2 lbs 13 oz and was 17 inches long. I got steroid shots for his lungs, but they didn’t really help much. He ended up on the Jet Ventilator, medically paralyzed with three pneumothoraces (chest tubes taking out extra oxygen from his chest that has blown out of his lungs).  I could just put pressure on his skin and not gently rub it. I didn’t get to hold him for a week and half because he was too unstable.  They didn’t even weigh him or change his isolette then. My husband and I went back and forth between the hospital and the Ronald McDonald House (where we were staying). Our new normal consisted of rounds and sitting by his bedside and figuring out pumping, bills, who to look after our stuff and what our new routine was.

Fast forward to now, and we are just checking in with our NICU doctor on a yearly or bi yearly basis.  We are still doing check ins with our We are trying out a different and more full of sound world because he had to get ear tubes in the end of December. I am pointing out a variety of different sounds to see if he can notice them and hear them. Now, it is a bit of a waiting and seeing “game.” When I was told by the audiologist that he failed the hearing test, even though our failing marks before would have been 30% and this time was more around 60%, I broke down. I ended up crying and was visibly upset. 

But her response was amazing. She told me the best case and the worst case scenario- he just needs more time and more interaction with sounds to see if he can notice them and respond, or we need to get another test done where he is put under anesthetic and they test the nerve and auditory part of the brain. At worst, he has some hearing damage. At best, he just need more time to experience the world as a fully hearing boy.  

I feel excited. I feel amazed. I feel thankful.  My son is a boy who didn’t have a choice about starting his NICU journey, but he is doing wonderful on it.  It has been and probably still will be a lot like a roller-coaster ride, but I wouldn’t want to ride through this with anyone else. 

15 Things You Might Not Know About Kangaroo Care for Preemies

kangaroo care benefits

The benefits of kangaroo care – skin-to-skin contact between parents and their preemies – can’t be overstated. While NICUs used to recommend that preemies spend a lot of time resting in their isolettes, it’s now common for doctors and nurses to advise moms (and dads) of premature babies to practice kangaroo care when preemies are stable. In fact, even preemies who need a mechanical ventilator or who have acute health issues can benefit from short skin-to-skin sessions with mom or dad!

What do the benefits of kangaroo care look like? Here are 15 really good reasons to practice kangaroo care in the NICU and even after you’ve made the transition home with your preemie:

  1. Kangaroo Care is shown to have a lasting and positive impact on brain development in preemies.
  2. Studies show that kangaroo care has significant long-term protective effects – even 20 years after the intervention.
  3. Kangaroo care has been associated with reductions in hyperactivity and other negative behaviors in preemies throughout childhood.
  4. It has also been associated with better social skills and higher self esteem as preemies grow.
  5. In the NICU, kangaroo care can help regulate heart rate, breathing and temperature in preemies.
  6. Studies show kangaroo care can improve head growth and weight gain.
  7. Preemies who get kangaroo care spend more time being quiet when awake and less time crying.
  8. They also sleep better and more deeply.
  9. And they tend to be more willing to try breast feeding and to be successful.
  10. Which is good because moms who kangaroo their preemies tend to produce more breast milk.
  11. Parents who practice kangaroo care feel closer to their preemies and less stressed about the challenges of prematurity.
  12. And it may help prevent or lessen the severity of post-partum depression in moms.
  13. Kangaroo care can reduce hospital re-admission for preemies and decrease hospital stays, lowering medical costs.
  14. Skin to skin contact stimulates overall physical development and seems to lead to better organ function in preemies
  15. It is also a natural form of pain relief for preemies and can help reduce the possibility of infection in the NICU.

But most importantly, kangaroo care is so often one of the things that preemie parents look forward to the most in the NICU! It’s something both moms and dads can do to help care for their preemies – which is especially important during those early days in the NICU when parents may feel powerless to do anything to positively impact a preemie’s life.

Today Was Supposed to Be Your Due Date

This post comes from our Preemie Parent Mentor Emily – her story will resonate with many preemie parents who wonder if there’s something they could have done to prevent premature birth. The fact is, however, that most premature birth happens without warning for reasons we don’t always understand.

Today was supposed to be your due date. March 15th – it was written in my head in flashing, neon lights. It was going to be the day when our dream of becoming parents would finally come true. Instead, the three of you made your terrifying entrance into the world seventy three days early. Some people said we were lucky, triplets never make it to their due date so at least we had an idea that they’d come early. Yes, we knew that on average triplets deliver at 33 weeks, we knew that having an extended NICU stay was possible, but we’d also been told that the chances of us triplets were approximately 2.5%. We’d beaten the odds on that one so figured maybe that luck would continue.

What no one ever mentioned in the days and weeks leading up to those chaotic thirteen hours when we learned that there was no stopping your arrival was the overwhelming feeling of guilt. I could barely comprehend what was happening as I looked at your impossibly tiny faces for a just second before you were whisked off by strangers whose sole job was to keep you alive after my body had failed you.

Every waking hour was spent wracking my brain trying to figure out where I went wrong. Every doctor, every nurse tried to reassure me that sometimes these things just happen but I was convinced that I was somehow to blame. If only I’d upped my daily water intake, if only I’d stopped working, if only I’d complained less about needing assistance to roll myself out of bed in the morning then maybe I’d still be feeling you tap dance on my bladder rather than seeing your fragile bodies covered in wires and tubes.

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