We’re Celebrating Prematurity Awareness Month with 4moms & Hello Mamas!

We want to celebrate Prematurity Awareness Month and World Prematurity Day on the 17th in a big way – and so do the nice people at 4moms and Hello Mamas! That’s why we’re kicking off the month with a special giveaway that includes a brand new mamaRoo (that the winner can use themselves or donate to their NICU), a $100 Target gift card from Hello Mamas, and a big prize pack direct from Graham’s Foundation with proud preemie parent gear, books, and more!

There are lots of ways to enter, right here with the below widget and on social media! The winner will be chosen at random by Rafflecopter and will be announced on November 30th! Good luck!

a Rafflecopter giveaway

What Makes Graham’s Foundation Special

Parents of preemies describe the experience of having an infant in the neonatal intensive care unit, whether for four weeks or four months, as stressful, frightening, exhausting, and isolating. For many, the NICU journey represents both a family and a financial crisis.

Babies born extremely premature are often in critical condition with health problems that will last for several weeks, months, or possibly a lifetime. Parents of preemies face life and death decisions while trying to comprehend the medical issues their baby is struggling to overcome, and feel terribly alone, isolated from friends and family because the serious risk of infection from visitors means casual visits could have grave consequences to their babies’ health.

Research shows that parents of preemies struggle with clinical depression, anxiety, and PTSD. But research also shows that parents who receive support from other parents of premature babies feel less stress, and report fewer symptoms of anxiety and depression.

We set about determining how much money is invested annually to improve outcomes for preemies, but because prematurity is still considered an occurrence and not a diagnosis it makes it difficult to track.
Continue reading “What Makes Graham’s Foundation Special”

What I Learned from Our First RSV Season

Today’s post comes from Graham’s Foundation preemie parent mentor Jessica – she’s available to talk about preemie feeding challenges, IUGR, g-tube issues, and breathing issues.

My first RSV season with my son was full of learning. Here are the top 3 I learned while waiting for RSV season to end:

1)      RSV should stand for Ravenous Super Villain. To be honest, I had never heard of RSV prior to last year when I brought my son home from the NICU. Upon our discharge from the NICU in December, we were strongly encouraged to limit our son’s exposure to others during RSV season, especially since he was coming home on oxygen. They warned us if he were to catch RSV, he would likely end up with another hospital stay… and after having him in the NICU for 4 months, we would do anything in our power for that to not happen! Once home, I started looking into RSV more and more. The deeper we got into RSV season, I began seeing stories circulating on Facebook about children (particularly preemies) dying from RSV. It broke my heart to imagine this virus that I previously knew nothing about rocking the homes of many. I made it my absolute mission to protect my son as best as possible.

2)      RSV season shows my slightly OCD crazy, creative side… in a weird way. We essentially traded Christmas cookies and decorations for Purell and Vitamin C. I would get on the CDC’s website weekly to see the RSV trends in our state, and I would shout to my husband “another week inside for us!”. I virtually had people fill out questionnaires in order to visit… not going to lie, if they had been sick within the last few months, I would find an excuse for them to stay far away! I came so incredibly close to purchasing Hazmat suits for my family members as their Christmas gifts, but I had a feeling that it might be taking things too far so I pulled in the reigns on that genius idea. Speaking of genius ideas, I once tried to talk my husband into wearing a Jason mask around our neighborhood while pushing my son in the stroller, so that no one would even think about coming to say hi to us; he wasn’t so keen on that idea because the police would likely be showing up…. I however still think it was brilliant. When not worrying about the germs outside of my house, I worried about the ones inside my house. I sanitized door knobs, remotes, cell phones, and my dogs – all three of them. If someone would touch my son’s hand, I would go right behind them and wipe his hand. I felt like I noticed every cough, sneeze, nose rub, sniffle… it was as if I had a new radar. I remember going to the grocery, and feeling as if I had been exposed to zombies….

3)      It’s only a season. In life, there are many different seasons – seasons of joy, rest, sadness, etc. Instead of focusing on the negatives surrounding RSV season, I chose to focus on the positives. Some might have gone crazy being on lock down, but for us, we enjoyed spending the time bundled with our little man. We made it our mission to embrace the new normal. We would drink coffee on the weekend mornings and talk about all of the big plans that were before us. There were also many Hallmark movies and HGTV shows involved as well. We learned to have a lot of grace with family and friends – many of them didn’t understand the big deal with RSV season. Instead of getting frustrated with them, I educated them on the reason why RSV is such a big deal. I kept in mind that I couldn’t change our circumstances or the fact that RSV was rampant, but I could change my view. I could choose thanksgiving and rest during this season. When things look bleak, remember that the flowers will bloom again. In the meantime, stay warm and snuggle (and if your spouse lets you, buy a Jason mask and send me a picture).

RSV awareness month

Tips for Surviving the NICU with Older Kids at Home

Daneen 300x300Today’s post comes from our Preemie Parent Mentor, Daneen! She’s mentors parents coping with ROP and many other issues related to premature birth. To connect with her, click here.

Before the NICU experience, I felt quite confident (well mostly) as a parent of our 9 children. Then the premature birth of our triplets happened and everything began to spiral.  Does this resonate with you? I will share the tips that got me and our family through it.

Let me give you some background on our family.  We were the parents of 5 sons (ages 16, 8, 7, 5 and 2) ad 4 daughters (ages 16, 14, 11, and 2).  Life was hectic but good.  We got pregnant with triplets and they were born barely the 1st day of our 23rd week, 2 sons and 1 daughter.  I would like to think of myself as an organized person.  It’s just how I do it with a larger-than-most family.  But I had no idea what I was in store for.

Continue reading “Tips for Surviving the NICU with Older Kids at Home”

Premature Birth: At Odds With the Standard Growth Chart

Today’s post comes from Linda, our Operations Coordinator! Like many of us, her preemie journey included issues around growth and weight gain so we’re happy to share her story in her own words.

I thought our prematurity journey ended with our NICU stay.  Boy was I mistaken!

I thought that since my daughters were big and strong enough to come home and survive on their own without wires and feeding tubes and heat lamps that it would be smooth sailing…I couldn’t have been more wrong, or more naive. In a way, I feel our journey just began after our departure from the NICU.  My one daughter was barely 5 pounds and my other not even when we came home.  

I remember our first appointment with the pediatrician and being so excited to see where my girls would land on the growth chart.  Turns out, they weren’t even on it – they were on a corrected chart and even though they were a month old, the chart characterized them as negative 4 weeks old and they didn’t even make it on that chart either.  Thus, began our constant uphill battle with weight gain.  

When my third daughter came around I thought I would finally make that chart.  Due to placenta previa, I was forced to deliver at 36 weeks to a 4 pound, 12 ouncer who thankfully could stay with me and didn’t require any NICU time but the uphill battle of weight gain ensued and she also was negative 4 weeks on that growth chart.  I don’t know why I let that growth chart rule my life but the anxiety and the hold it had over me was unbearable.  

My twins are now 4.5 and my other daughter 3 and I am still at odds with that growth chart.  My youngest FINALLY made it on the chart for height in August at her last physical and I couldn’t have been prouder!  

But what does all my rambling about a growth chart have to do with anything really?  Well I felt like I was missing out on typical milestones – this was just the beginning of what I felt was missing out, but with time learned that my daughters would make their own milestones and I would be just as proud – if not prouder of them than if they made them “on time.”  They did make them “on time.”  ON THEIR TIME.

So, what if I didn’t get to complete the Year of Firsts calendar that I bought for them – it ended up becoming more of the Second Year of Firsts calendar in our house but that was OK.  I was finally able to come to terms with my fictitious view of normal and accept and embrace the real normal and I couldn’t be more blessed, thankful or prouder that my girls are exactly where they are today – three happy, healthy, petite, little crazy people!     

The Gap Baby – An RSV Story

Most young children encounter what’s known as Respiratory Syncytial Virus, or RSV, before age two. It’s a common seasonal virus with flu-like symptoms and in otherwise healthy children it can be no big deal. In preemies, however, it can be literally deadly. Prevention is possible, but as this video from the National Coalition for Infant Health explains, premature infants whose health plans don’t cover preventive RSV treatment may suffer – and unnecessarily so.

Share This Infographic for RSV Awareness Month!

Did you know that October is RSV Awareness Month? Awareness is so important because so many people just do not understand that Respiratory syncytial virus is so much more than a cold. In healthy grownups it may not be a big deal, but in medically fragile preemies RSV literally kills. We hope you’ll share this great infographic from with your friends and family (and encourage them to do the same) because if more people understand they can help prevent RSV, fewer preemies will contract it!

RSV awareness month graphic

Write for Us!

Would you like to share your story with the Graham's Foundation community? Interested in becoming a regular blogger for Graham's Foundation? Fill out the form here.