Prematurity Awareness Month Stories: A Big Surprise!

For Prematurity Awareness Month, we’re sharing Sharon’s story…

This is the story of our son Daniel Joseph Goodwin IV born on May 29th, 2017. 

We had been trying to get pregnant for five years but after going to doctors, I was diagnosed with PCOS, a condition which made it hard to get pregnant.  We tried many years thereafter with no success. 

On the morning of May 29th, I had abdominal pains and so my husband rushed me to the hospital.  The ride there was very scary because we had no idea what was going on with me.   I thought my ovaries had ruptured because this could occur with the condition I had.  My husband was there with me in the ER and once the nurses took me to see the ultrasound tech; he went to charge his phone to call his family about what was going on with me.  

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Prematurity Awareness Month Stories: Inspired to Do More

For Prematurity Awareness Month, we’re sharing Ruby’s story…

Preemie Love was founded by Ruby Kimondo on May of 2015. Her motivation to start Preemie Love was driven by her own personal experiences with prematurity.

Ruby is forty years old, married and with four sons. She experienced severe Preeclampsia in all four pregnancies leading to three of her babies being born at twenty eight, thirty and thirty four weeks. Her third pregnancy was managed well into week thirty eight, thus giving her the only full term baby out of the four.

At twenty six years old and expecting her first child, Ruby had no idea of a pregnancy condition called Preeclampsia and knew very little about babies born prematurely. When she saw her baby for the first time, looking so tiny and fragile at 1300g, she broke down and cried. Thus began her long journey through Prematurity. Weeks of daily commutes to the Newborn Intensive Care Units (NICU’s) to see her babies, uncertainties as to the long term outcomes of these long stays in Neonatal care and finally to the daunting task of caring for her underweight babies at home.

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Prematurity Awareness Month Stories: Heartbreaks and Blessings

For Prematurity Awareness Month, we’re sharing Elisabeth’s story…
In April of 2015, we found out we were pregnant shortly after we found out we were adding a girl to our family of three! We were so excited and started planning and imagining our new life! Ean, our now 8 year old (who was 6 at the time), was especially excited to add a new baby to the family.
Then one day at work I felt like I was getting sick with flu like symptoms. I was so uncomfortable but when you’re pregnant you don’t have many options for medications to help you feel better. I called the doctor’s office and made an appointment for that day. But at the office they were too busy and sent me to labor and delivery. I guess they must have known something wasn’t right because during my check-up they discovered I was 5 cm dilated and didn’t even know it.
At that point, I was just 23 weeks and 6 days pregnant. Two days later, on August 28, 2015, I gave birth prematurely to our daughter RubySue Star. She weighed just 1lb 6.5oz and was so beautiful even though she was so little. But RubySue was sick, not just born too early sick but already very sick. On day 9 of her life we found out she had NEC. There was a tear in her intestines and she was not doing well. On Sept 6, 2017 she passed away. 
We decided we wouldn’t try again so I began taking birth control, but to our extreme surprise in December of 2016 we found out we were pregnant again. We were so scared and so got prenatal care right away at just 5 weeks along. At that first appointment we were told our due date: August 28, 2017…. RubySue’s 2nd birthday in heaven. 
That’s when we knew we were meant to have another baby.
I was put on weekly injections and received a cerclage to help keep this baby – another girl – inside. To our surprise I started having complications and I ended up on bed rest in the hospital. Unfortunately Harley Rose was born as premature as her sister, at 23 weeks and 2 days n May 3, 2017 weighing 1lb 4oz. After testing, the doctors found out I had a severe infection and we were lucky it didn’t pass to Harley. Harley had a grade 4 hemorrhage in her brain (Ruby had had a bilateral hemorrhage also a grade 4) – the worst a preemie can have.
But Harley Rose came home before her original due date and has been defying all odds since birth. Today our “23 weeker” is doing very well – she is 9lbs 12oz at 5 months old – the same amount of time she was in the womb. She is our NICU miracle… our beautiful amazing blessed baby. 

Prematurity Awareness Month Stories: The Power of Positivity

For Prematurity Awareness Month, we’re sharing Kimber’s story…

My son, Ryder, was born at 28 weeks on August 6th, 2017. We spent two very long months in the NICU.

I started having what I remembered to be contractions but they were accompanied by HEAVY bleeding. I drove myself to the hospital with no known complications to find out I had a positive early labor test and short cervix along with being 1cm early August.

I spent two days on bed rest receiving steroids for Ryder’s lungs. By day two, doctors were sure I was ready to go home on modified bed rest to get me back to my two-year-old daughter, Blakeleigh, and our everyday life. I was getting dressed to go home and they wanted to do one more cervix check since I live 45 minutes from the closest L&D.

Turns out I’d dilated to 3 cms with off the chart contractions that were accompanied by no pain, and later that night I went into full blown labor again. I could tell something was wrong even though no one would tell me anything except I was being moved to a L&D suite to be “monitored”. Only once I was moved and situated, my nurse told me I was 7 cm dilated and they needed to transfer me another 20 minutes away by ambulance so we could be at a hospital with a high level NICU.

I was too early, my waters were bulging, and an ultrasound showed baby was transverse. I was told if baby came vaginally it immediately became life threatening for us both. My heart sank. I’ve never been so afraid and yet so strong in my life. Everyone in the room along with paramedics began praying over me and my baby. I had an emergency c-section at 3:06 on August 6th, Ryder was born.

Our NICU stay was blessed compared to some. We were never ventilated and started off in an isolette on CPAP at 2lbs 11oz. My son progressed through the A’s and B’s, jaundice, anemia, ROP, an abnormal newborn screen, moved from CPAP to a cannula and was moved to non critical side of the NICU by his first month of life.

Days after I received a phone call at 3 a.m. telling me I needed to make the hour drive to be with my son immediately and consent to care. I must have asked what was wrong a hundred times and all I kept hearing was “It’s bad, come now.” I made the hour drive through endless tears to find out my son had NEC days after major improvements. We went through endless possibilities of what may turn our somewhat routine stay into a life altering surgery or loss. Antibiotics and an amazing team of NNP and doctors’ early intervention saved my sons life.

Eventually we overcame all the trials that once seemed to overcome us in the NICU. We spent our most recent and last weeks in the NICU with a “feeder-grower”. At exactly my sons two month mark of life he graduated from the NICU.

I’ve learned the power of positivity works miracles. Preemies teach you more about life than you could ever teach them.

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

Prematurity Awareness Month Stories: Losing the Birth Experience You Wanted

For Prematurity Awareness Month, we’re sharing Ivy’s story…

During my first pregnancy I had all of these incredible visions of what giving birth would be like. I was convinced I’d go past my due date, I’d labor in water, I’d have my bags packed with everything I needed, and most importantly I’d get to spend the golden hour snuggling my precious baby girl and breastfeed her for the first time.

But like many women quickly learn babies don’t always follow your plan!

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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.
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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.

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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!     

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