Skylar’s Preemie Journey

It wasn’t supposed to be like this.  I had envisioned that one day, my husband and I would welcome a newborn baby together in the hospital, surrounded with friends and family.  We would have a cute little nursery set up for her, with a rocking chair to help her get to sleep.  I would be HUGE, even after giving birth, and that it would take no time at all for my former gymnast body to get right back into shape.

It wasn’t meant to be.

After accepting that I would be a single mom, I had even more to grapple with.  Three days after deciding on her name with her father, I was swollen.  My face was noticeably larger, and I couldn’t feel my ankles.  I thought it was my pregnancy finally catching up with me, since I was six and half months along.  My friend Erin, who I have known since my freshman year of high school, came into work and said I needed to go check my blood pressure.  I walked to Giant, and wrote down on a piece of paper what my numbers were, looked at the guide, and saw I was in the range of hypertensive, whatever that meant.

From there, I drove myself to my parents, and in the meantime, I patted my belly, asking my little daughter if she was okay.  I got a couple of kicks back, and the worry subsided a bit.  While being checked out in the ER, my water broke (thank goodness my mom was with me, or I would not have known what the heck that was.) and I was bleeding.  Within the hour, my doctor said “We need to do a C-Section,” and I lost it.  I was wheeled into surgery, not knowing what was going on.  Another doctor came in, and said there was a 40% chance my little one wouldn’t survive the birth.  All I could say was, “Knock me out.  There’s nothing I can do about it now.”

My little one DID make it.  Skylar Elizabeth was born September 1, 2010 at 11:01 PM, weighing 1 pound, 15 ounces and measured 13.5 inches.  I first met her in a transportable isolette, as she was being airlifted to Children’s National Medical Center.  I don’t remember the transport team member’s name, but she was somehow able to make me laugh.  I knew Skylar was in good hands.

My blood pressure remained high for days, leaving me at Reston Hospital for three nights.  I was very lucky to have a friend, Katie, who happened to be a labor and delivery nurse at Reston, as my nurse the day after Skylar’s birth.  She helped keep me sane that day, and gave me hope.

I was finally released and driven to Children’s to see Skylar.  She was on an oscillator, and wires running all over her body. 

Skylar was born at 26 weeks and 6 days, gestationally speaking.  Even for her age, she was small.  Her eyes were still fused shut, and she had not eyelashes.  She was jaundice, and she had those funky blue lights on her that look like she was in a Star Wars movie.  I couldn’t hold her, and I could barely touch her.  Her skin seemed like it was almost wet, and it was translucent.

Holding her for her first kangaroo care, Nurse (and now good friend) Casey asked if I finally felt like a mom, after everything that had happened.  I was stunned for a second, because I didn’t know how to answer that question.  I didn’t know anything about the baby that lay before me.  She hadn’t opened her eyes, or reacted to my voice,  or seen me smile.  I was barely able to touch her, yet she was mine? In the years after, I realized I had emotionally distanced myself from my daughter.  She was on the edge, all the time, one step away from leaving this life.  How could I open my heart to her, if I could get a phone call in the middle of the night saying she had passed away?  I mumbled something to Nurse Casey, that “Yeah, I feel like a mom,” but I didn’t.  Holding her that first time though, helped.

The months that followed were hard.  Sky developed an hole in her intestine that didn’t require surgery, but a strawlike tube that went in one side of her stomach and out the other.  It cleared within days.  She had two hernias that did require surgery.  The night following her surgery, she relapsed, and needed to be intubated.  I thought I was going to lose her, within the week that she would end up coming home.

 It was about that time that I did feel like a mom, just not any moms that I knew.  I was a mom who could sit for hours in a hospital room, pumping breast milk, sleeping with constant beeping in her ears.  I could pick up a one and a half pound baby, attached to wires, and put her on my chest.  I could drive in Washington DC, one of my most feared places to drive, without directions.  I could keep up on doctor rounds, knowing the jargon they used, and what medical terms meant.

There was a day when I was home, where I was just sitting there crying.  I saw myself in the mirror, and I looked bloody awful.  So I wiped the tears away, and said to myself, “You have a choice.  You can be sad for all the things that have happened, for what’s not fair, and for the fear of what you can lose.  Or, you can smile.”  I chose to smile.  I had and still have every reason in the world to pity myself, and what Skylar has been through, but that’s no fun.  I’m not saying every day is the best day ever, but overall, it’s great.

Skylar came home on Black Friday of 2010, 86 days after her birth.  She came home unaided, no oxygen or monitors.  She had numerous follow up appointments, but that was just to monitor all that had happened to her, and to prevent anything from derailing out of control.

One of her follow up appointments included a hearing test.  Skylar, like so many other preemies, had failed her hearing test.  I was unable to make the appointment.  It was Show Week at my work, a week to showcase all the awesome skills my little gymnasts had learned.  When I called my mom to see how it had gone, my mom paused.  My mom doesn’t pause unless she is trying hard to no insult me.  She said that the audiologist would be calling me.  No matter what I said, she wouldn’t tell me anything.

The audiologist informed me that Skylar was deaf.  After all she had fought to endure in the NICU, she did have a life altering effect from the battle.  I was stunned.  When you come home from the hospital, it’s supposed to be done.  I was unhappy that day, I will admit it.  Thank goodness for the amazing people I saw that day, the parents of the children I teach, my mom, my dad, Sky’s adoptive Aunt Jackie, and my boss, Chad.  His reaction that day and the words he spoke, have remained ingrained in my head and heart.  And it was the first time I felt tough, and that other people meant the words they spoke in how much they admired me for keeping it all together.

Skylar grew into a very happy baby.  She wasn’t a real fan of the hearing aids, which in time would become cochlear implants anyways.  She hit milestones.  She started smiling, laughing, eating foods.  She was sleeping through the night within a month of coming home. Her teeth started to pop through.  Her first birthday came and went.  She started to babble after her cochlear activation.  She started saying “Elm” for her favorite Elmo character.  She started signing.  She started to run. She started to hug, and now can kiss (sometimes) on demand.

When you have a preemie, your whole life goes on hold.  You don’t make plans for the future, because you don’t know if there is going to be a future to plan for.  You make deals with God.  You grieve, you pity, you are jealous.

When you have a little one in the NICU, there is one goal, one purpose to it all – to get them home.  But when the storm passes, when the battle is won, you have to be prepared for the small sneak attacks.  The lingering things that become question marks.  ADHD, or just from being a preemie?  ROP or just bad eyes?  In the end, it was the hearing loss that snuck up on us, and changed our lives forever.

A lot of people say, “I don’t know how you do it.”  My determination through everything, the surgeries, the long hours driving to DC, the late night when she doesn’t want to go to sleep, the speech therapies, taping of the cochlear processors onto Sky’s head, comes from my friend Karen.  Karen’s little preemie, Simon went to heaven mere days before Skylar was born.  Karen was one of the first people to post on my Facebook statuses, to message me about keeping hope.  For everything that I have been through, Skylar is here. The day that I found out Skylar was deaf, Karen was one of the first people I thought of, and it took all the pain away from me.  I could do this.

Yes, it’s hard sometimes.  Sometimes I want to give the pregnant mom complaining about how big she is a great big lesson on why she should keep her mouth shut.  To tell the parents that are in the NICU together how lucky they are to have someone to cry on, and hold at night, and to know each other well enough to be at your worst with.  To tell the stay at home moms how lucky they are that they don’t have to work to keep their child on health insurance.   To tell all the people who give me dirty looks when I use coupons, “My daughter is literally worth a million dollars, that’s why I coupon.”    Instead, I just keep a smile on my face, and try and help those around me as best I can. 

Years before Skylar was born, I had gotten a tattoo that would turn out almost prophetic.  I am an avid quote collector, and this one seemed to resonate with me, since I am petite.  But it was a smaller girl that would make it ring true,

 “Even the smallest person can change the course of the future.”

 ~ Lord of the Rings, The Fellowship of the Ring

~Tharen

http://phys.org/news/2011-01-scotland-cars.html

In Scotland, the national, comprehensive smoke-free legislation has been linked with significant falls in preterm delivery and small for gestational age infants.  This finding was from a study led by Jill Pell from the University of Glasgow and recently published in PLoS Medicine.  This type of study helps to further cement the vast list of benefits of smoke-free legislation and could possibly help with having other countries support the adoption of such legislation that currently don’t have smoking bans.

In March of 2006, a Smoking, Health and Social Care (Scotland) Bill was passed in Scotland, making it the first country in the United Kingdom to ban smoking in public places.  In this published study, the authors compiled information on preterm delivery and small gestational age babies born between January 1996 and December (717,000 pregnant women).  This study showed that the smoking ban legislation implementation led to a significant fall in the number of mothers who smoked from 25.4% pre-ban to 18.8% post-ban.  Aside from not as many moms smoking, there was over a 10% drop in overall preterm deliveries (significant value).  Also, the number of infants born small dropped 5% and those born very small dropped 8%.  The authors found that these significant reductions occurred both in mothers who smoked and those who had never smoked.  The fact that these reductions occurred in both smoking and non-smoking moms, helps to emphasize the importance of the fact that second-hand smoke can have a huge effect on health.

The authors make the point that even though preemies have better survival chances now, preemies still can have long-term health problems and developmental issues, so, “Any intervention that can reduce the risk of preterm delivery has the potential to produce important public health benefits.”

Hopefully from this study, further smoke-free legislation can be more seriously examined and implemented in countries where it doesn’t currently exist.

I think it is important to really pay attention to your surroundings when pregnant and be cognizant that your surroundings and environmental exposures can greatly affect your pregnancy and child.

Daniel F. Mackay, Scott M. Nelson, Sally J. Haw, Jill P. Pell. Impact of Scotland’s Smoke-Free Legislation on Pregnancy Complications: Retrospective Cohort Study. PLoS Medicine, 2012; 9 (3): e1001175 DOI: 10.1371/journal.pmed.1001175

http://www.nhs.uk/news/2012/03march/Pages/premature-baby-rate-smoking-ban.aspx

The Power to Grow is an event designed to bring new and veteran parents, grandparents, and caregivers of preemies together with others in the local preemie community. We will enjoy an evening of gourmet grazing, tasting martinis, a silent auction and a welcoming atmosphere to be among families and friends who understand the challenges and the triumphs you’ve faced along your journey!

The event will take place on June 13th, 2012 from 6pm-9pm at the Hotel Palomar, 2121 P Street, NW Washington DC 20037 and tickets can be purchased NOW through the following link:

http://www.grahamsfoundation.org/ThePowerToGrow_WashingtonDC.html

As a partner organization, Preemies Today will receive a portion of the proceeds to help us continue to serve families affected by prematurity.

General tickets are $75.00 each, while parents of preemies will enjoy a discounted ticket of just $50.00. When you purchase your tickets be sure to select the ticket designated as “Preemies Today”.

If you are interested in volunteering for the event, have a good or service to donate for the silent auction, or would like more information about being an event sponsor please email me at marybethhazelgrove@preemiestoday.org.

And please help us spread the word about this exciting event. Invite your friends, your family, and anyone who cares about preemies and supporting the courageous parents who care for them! We thank you in advance for your support and look forward to seeing you on June 13th!

Mary Beth Hazelgrove
Executive Director, Preemies Today

Proceeds support families affected by prematurity.

Saturday, May 19, 2012,

Doors open at 3 pm.

Providence Elementary School

3616 Jermantown Road, Fairfax, Virginia

Auction information:
http://www.biddingforgood.com/preemiestoday

Then you will be able to bid as well at the event.

Concert information:
http://www.preemiestoday.org/pages/2012_concert.php

If you can pass it along to family, friends, and any other groups you belong to, we appreciate it!

Thank you so much!!!

The Preemies Today Auction Is Officially Open!

Our goal this year is to raise $5,000 to support families affected by prematurity. We need your support! This is an exciting and fun way to help us, and at the same time have a chance to win cool items!

So what are you waiting for?…Bid Now!

Place Your Bid.
Whether you’re looking for something unique for yourself, searching for a gift for a special someone, or looking to add a little adventure to your life, you’re sure to find something in our auction. Every bid helps support our cause.

Tell Your Friends.
The success of this online auction depends on spreading the word to as many people as possible. We need your help. Please Refer a Friend and encourage them to participate so they don’t miss a single moment of the fun and excitement.

Please check our online auction daily as we continue to add new items.

You can find Rockin’ for Preemies Auction here: http://www.biddingforgood.com/preemiestoday

The parents of Camelia Faith, a 23 weeker, honor her as they share her story.  We thank you for blessing our hearts with this.  She is truly a Preemie Superstar!

~Audrey Lee

Our miracle daughter, Camelia Faith, arrived into this world fighting for her life, and today she continues her fight in the face of many struggles and obstacles along her life’s journey.

Born at 23 weeks and 1 day, statistics suggested that such a life was not even considered to be viable; she was fighting against all odds from the moment she entered this world.  Through many prayers and tears, we witnessed firsthand how hard our little survivor fought to shape her own statistics. 

She fought to live. That first night, a neonatologist came to let us know it did not look like she was going to survive the night. But she did!

 She fought to breathe.  During her time on the ventilator, her fight to breathe was daily—often hourly. But after ten weeks, she took her first breath without the ventilator (with the help of CPAP)!

She fought against adversity.  We watched in amazement the strength that came from such a tiny, fragile being.  She fought hard even when facing complications such as IVH, PDA ligation surgery at 4 days old, an infiltration on her arm, MRCA, reflux and ROP. Fighting with all her might, she fought on!

She fought to eat.  During the time she had a feeding tube, she fought to survive the transition to receiving more substantial amounts.  As a result, her stomach began tolerate larger amounts and she received the nutrition she desperately needed.

She fought to grow and improve.  Days turned to weeks, and weeks to months, and soon we were four months into the NICU roller-coaster ride.  When can we take her home?  We asked doctors daily.  Though we were growing weary, she continued to fight as hard as she did from the beginning! 

She fought to come home.  Bringing her home remained just out of our grasp, and we desperately wanted her to come home where she belonged.  She worked so hard to drink from a bottle and breathe on her own.  After six months, the day finally arrived:  Camelia came home!

She fought through other hospital stays. Three short weeks after bringing her home (on oxygen) her saturation levels plummeted dangerously low.  She had to be readmitted to the hospital, but not to the familiar NICU. During her one week stay in the PICU she fought hard to improve so that she could come back home with us where she belonged. And she did!  We witnessed her strength through numerous other short hospital stays as well.

She fights to overcome and achieve. We witnessed her determination and perseverance through early intervention therapies and her preschool years.  Currently, we are witnessing her hard work in her present school setting:  learning to read and write using Braille and Braillewriter, using a cane to navigate her surroundings, receiving speech and occupational therapies, all in addition to her regular school assignments.  Though she faces a variety of struggles due largely to the visual impairment as well as some developmental delays, each day her hard work and effort continues to amaze and challenge us!  We watch in admiration as she fights—and prevails!—over these numerous obstacles.

The strength and determination characteristic of her fighting spirit is undeniably a result of having spent six long months in the NICU, but we believe it is also due to the many prayers being offered up on her behalf.  So many of our friends and family have prayed for Camelia—whom we now call “Cami”—from birth to the present, and we know it is God who has enabled our daughter to accomplish all that she has.

 Cami is a Preemie Superstar, shining brightly to all who know and love her!

http://www.promisewalk.org/

I was lucky never to have experienced preeclampsia but have had many close friends who have, and as a result, also delivered prematurely.  Thousands of women and babies get very sick or even die each year from this life-threatening disorder.

The classic characteristics of preeclampsia and the even more dangerous related disorders (HELLP syndrome and eclampsia) are marked by a fast rise in blood pressure that can ultimately lead to stroke, seizure, multiple organ failure, and even death to the mother and/or baby.

This month, The Promise Walk for Preeclampsia (http://www.promisewalk.org/) is taking place in 36 locations around the United States and also in Canada.  The walk helps support The Preeclampsia Foundation.

Are any of our Preemies Today parents walking?

It is vital that there are improvements in prevention, management, and diagnosis or preeclampsia.  It is important to know that ALL pregnancies are at risk and that currently, the best defense against the worst scenarios playing out is to make sure that patients understand and respond to the warning signs of preeclampsia. The sad and un-excuseable thing is that so few people are truly aware or informed enough about this disorder.

problem is, few people are aware and adequately informed.

With your help, we can drive awareness, advance our scientific understanding and medical practices, and together help create a world where preeclampsia and hypertensive disorders of pregnancy no longer threaten the lives of mothers and babies.

http://www.preeclampsia.org/

Chair donations for "Kangaroo Care" at Washington Hospital Center!

Just a few of the 2011 Accomplishments include:

• Donating 5 kangaroo chairs to NICUs
• Sponsoring 2 NICU Baby Showers and a NICU Mothers Day’s spa-themed event
• Sponsoring 3 parent socials and 4 family events
• Matched parents with other parents to foster emotional support during the difficult time of the NICU though the rest of early childhood.
• Starting a blog to update parents on new research  in high risk pregnancies, child development, and prematurity.  Also, the blog serves as a source for encouragement to parents by integrating personal story/journey shares about fellow preemies and discussing the emotional impact of prematurity.

Due to the positive impact that Preemies Today has had on the community, Preemies Today was named the 2011 Non-Profit Citizen of the Year for Centreville, VA.

 2012 Accomplishments and Plans include:

• Donating 15 kangaroo care chairs to NICUs
• Developing a video on “Pregnancy after a Preemie” to be shown at NICUs
• Updating our education brochure for parents of newborn preemies
• Hosting a webinar series with topics including Sensory Integration, Nutrition, and Safe Sleep.
• Sponsoring 3 NICU Baby Showers and NICU Mother’s Day socials at 2 NICUs
  Completely redeveloping the website to make it more user friendly and provide more information and resources to families
• Sponsoring at least 4 family events
• Sponsoring at least 7 parent socials, including some events for moms and some events for dads
• Double our 2011 parent-to-parent matches

Please help us help families impacted by prematurity and consider donating to Preemies Today!

To honor your preemie by making a donation to Preemies Today, please visit the Preemies Today website.

http://preemiestoday.org/

Dear Friends,
Preemies Today® would love to extend the opportunity to highlight your preemie or preemies at our upcoming event, “Rockin’ for Preemies” as one of our Preemie Superstars.

What is Rockin’ for Preemies?
Rockin’ for Preemies is a children’s concert and silent auction featuring the popular children’s band Rocknoceros and special guests Groovy Nate and Music Together. All proceeds benefit Preemies Today.

What is a Preemie Superstar?

• It is a way to honor or acknowledge the memory of your preemie.
• It will help raise awareness of prematurity in the community.
• It will contribute to our fund the mission initiative.

How will my Preemie Superstar be honored?

• The name of your Preemie Superstar will be recognized in our event program.
• Your preemie’s picture will be displayed at the event (optional).
• You will receive a certificate honoring your Superstar.
• You have the opportunity for your preemie to be featured in our Preemies Today blog or other media opportunities (optional).

What do I need to do?
Complete the Preemie Superstar form which you can also find here: http://www.preemiestoday.org/pages/2012_concert.php

Make a contribution to fund the mission (suggested donation of $25 or more).

See more featured examples:

Thank you so much Audrey and Chris Lee for recognizing their Preemie Superstar Katherine!

“Katherine is a Superstar because she has always been a fighter. Every time I look at her I can think back to how we were told that she’d probably never make it to 23 weeks gestation yet she beat all odds and was born at the end of her 31st week. She has overcome breathing issues, NEC, and various developmental delays. Now when you look at her, you’d never know that she was a preemie. She has taught us so much about life, love, and faith.
Katherine is such a bright light in our lives. She is so loving and caring to her baby sister and she takes this role very seriously. She likes to be the boss even though her sister isn’t much younger than she is! She always thinks she is right and will try to convince you of such things even if it takes hours. Ha! Katherine loves to shop and is a little fashionista. She thinks hairbows are vital to the integrity of her head I think, and I feel her shoe obsession could make us go broke one day. Plus, no one kid should have that many Tutus! HA! She loves to dance ballet and to help cook in the kitchen. Her baby sister Juliette calls her, “Katy” and she calls her, her baby “Juju”. Katherine is very giving though, and can melt your heart in an instance. “

Here is another Preemie Superstar! Katelyn was born at 25 weeks weighing 15.5 oz and is now 8 years old. Thank you so much to her parents, Ashley and Michael Hall, for recognizing her.

A special thank you to preemie parents, Greg and Georgie Heard for recognizing their Preemie Superstars Cody and Dalton.

Cody and Dalton were identical twin brothers born at 24 weeks. Cody is two and will turn three in June and Dalton passed a few days after his birth.

Thank you to all of those who have recently honored their Preemie Superstars! A special thank you to preemie mom, Lauren Wisniewski in honor of Anne and Valerie. Anne and Valerie were born at 28 weeks and are now 17 months old. We be featuring some of our Superstars each day until our Rockin’ for Preemies event.

In order to meet the printing deadline for the concert brochure, we will only be able to print the names of those Preemie Superstars honored by May 1 in the program brochure.

To honor your preemie by making a donation to Preemies Today, please visit the Preemies Today website.

http://preemiestoday.org/

Dear Friends,
Preemies Today® would love to extend the opportunity to highlight your preemie or preemies at our upcoming event, “Rockin’ for Preemies” as one of our Preemie Superstars.

What is Rockin’ for Preemies?
Rockin’ for Preemies is a children’s concert and silent auction featuring the popular children’s band Rocknoceros and special guests Groovy Nate and Music Together. All proceeds benefit Preemies Today.

What is a Preemie Superstar?

• It is a way to honor or acknowledge the memory of your preemie.
• It will help raise awareness of prematurity in the community.
• It will contribute to our fund the mission initiative.

How will my Preemie Superstar be honored?

• The name of your Preemie Superstar will be recognized in our event program.
• Your preemie’s picture will be displayed at the event (optional).
• You will receive a certificate honoring your Superstar.
• You have the opportunity for your preemie to be featured in our Preemies Today blog or other media opportunities (optional).

What do I need to do?
Complete the Preemie Superstar form which you can also find here: http://www.preemiestoday.org/pages/2012_concert.php

Make a contribution to fund the mission (suggested donation of $25 or more).

Condensed Example from our Facebook page:

Tayla Addison Giles

Introducing our next Preemie Superstar! Tayla Addison Giles was born at 26 weeks 3 days. She weighed just two pounds at birth and is now 12 pounds two ounces at 6 months of age. A special thank you to preemie parents, Sherrie Addison and Landon Giles for recognizing their Preemie Superstar.

]]> http://preemiestoday-blog.org/2012/04/30/recognize-your-preemie-superstar/feed/ 3 preemiestoday Tayla