The Promise Walk for Preeclampsia

Team Abby is all about helping babies, and finding ways to prevent longer than necessary hospital stays-- for mother or baby.  Today we're welcoming Sarah Donza-Hughes from Finnegan and the Hughes to talk about the day her daughter was born... and the crazy three days following.  Not only is the information important, but Sarah is channeling her journey into an amazing event called The Promise Walk on May 12th.  Read on to hear her story, and be sure to join the fun on May 12th {I'm already jealous of those sponsors and prizes... wowza!}

When I had my daughter Hayley Jane at full term via c- section we were on cloud nine!  Our little princess had arrived and even my son Derek, at just 26 months old, was thrilled for our family. I was released from the hospital and spent the next two days in that post-baby honeymoon phase... but soon I knew something was off. I told my husband Rob I couldn't fully catch my breath, I had a dull headache and I thought my vision seemed blurry.

Then I thought I was being paranoid; I was recovering from a c-section and had a new baby that was nursing every 2 hours. Rob insisted I call the doctor. I was surprised at the stern immediacy in the doctor's voice when she said to "grab my pump and get back over the bridge."  My in-laws rushed over and I kissed my babies good-bye through flooding tears because I didn't want to leave.  Derek was going to be a fireman for Halloween that day, plus my brand new Hayley Jane, I needed to be home and dress Hayley in pink and cuddle her...would she forget me, would we never bond?!

I didn't realize then that it would be 3 horrible days until I saw them again.

2 days before I was readmitted to the hospital

In the Emergency Room they had no idea what to do with me.  I was a basketcase, I cried to EVERYONE!!  If the person changing the trash even looked in my direction and made eye contact I would cry to them and say "I just want to go home to my babies." After many hours in the ER I was sent to Labor and Delivery where I was told what I had was preeclampsia. WHAT?   I was so petrified and just wanted to be with my babies and here I was a mother of two, about to be hooked up to a magnesium IV so I wouldn't have a seizure due to preeclampsia.  I had NEVER even heard of having preeclampsia postpartum!

A very sweet nurse sat down next to me and she grabbed my hand firmly, she spoke clearly and calmly about how awful I was going to feel on the magnesium and she asked me to tell her what I was thinking and I told her, "I'm scared, I just want to be home with my babies and I'm nervous what will happen to me and I'm afraid that I could die."  She told me this would help me and that my husband could stay.  Rob stayed by my side for 3 long days.

The first night I was on the magnesium and he snored away in the chair next to my bed while I saw 5 of everything, had to wear an oxygen tube because they couldn't get my oxygen levels to stop dropping, pumping every two hours, unable to get out of bed and was hooked up to a catheter.  I  felt so sick, oh so sick, the magnesium makes you so so so sickly feeling.  After I came off the magnesium, I felt "better"-- my blood pressure was still high but low enough that I could go home.  It took a few weeks for my BP (and me) to get back to normal.

Hayley Jane, ready to leave the hospital

Thousands of women and babies die or get very sick each year from this dangerous condition called preeclampsia, a life-threatening disorder that occurs only during pregnancy and the postpartum period. Affecting at least 5-8% of all pregnancies, preeclampsia and related disorders such as HELLP syndrome and eclampsia are most often characterized by the presence of protein in the urine and a rapid rise in blood pressure that can lead to seizure, stroke, multiple organ failure and death of the mother and/or baby.  Swelling, sudden weight gain, headaches and changes in vision are important symptoms; however, some women with rapidly advancing disease report few symptoms. Typically, preeclampsia occurs after 20 weeks gestation (in the late 2nd or 3rd trimesters or middle to late pregnancy), though it can occur earlier. Proper prenatal care is essential to diagnose and manage preeclampsia.

The Preeclampsia Foundation is the only non-profit in the US devoted to hypertensive disorders of pregnancy, serving the 10 million women worldwide who develop preeclampsia each year.  Join us for The Promise Walk on May 12 in the Philadelphia area!


As a NICU mom, I can completely relate to that "basketcase" feeling!  Being sick and postpartum is one difficult combination.  Thank you, Sarah, for that poignant insight into preeclampsia and for using your journey to help other mothers and babies, too.  Who's up for the Promise Walk on May 12th?! 

Sincere Thanks and Goals for 2012

Last March, we dropped off one hundred Care Bags to Jefferson's Intensive Care Nursery-- bags full of soft blankets, books, reusable water bottles, hand sanitizer, tissues, and more.  To say it was a dream come true is an understatement.  It felt amazing to pass along even a tiny fraction of the love and care we received during our 2-month stay in that very place just three years ago.

As I handed over the bags, Abby played with toys in the waiting room... the same waiting room our family used to bide our time during shift changes and procedures.  The same room my mom would sit in for hours on end until it was her turn to hold Abby.  The same room we'd wait for news after exams by various doctors and specialists.  It was surreal to be there again with a healthy Abby, and even as she played I saw families come in who were just beginning the same journey-- and it gave me peace to know they'd be comforted by the bags you all helped put together.

I tried not to cry as a warmer rolled by, the baby bagged and the nurses working intently to save that child.

Not sure I succeeded holding the tears back, not gonna lie!

It was amazing to meet other ICN moms, with miracle babies (like baby G, seen here) as well:

And boy did that little guy have the most kissable cheeks I've ever seen.  He was a rockstar former patient, much loved by all the staff!

We managed to wrangle Nurse Jane away from her duties {and hilarious Facebook updates} for a photo too:

Thank you all for making this possible.  For your donations, your time, your positive energy-- it was appreciated by us, and by the families as well.

After 3 years of fundraising, working with vendors, collecting donations, writing letters, and packing bags I can happily check "Donate 100 Care Bags" off the 2011 to-do list.

Which may leave you wondering, 

"So, what's in store for Team Abby in 2012?"

I wish more than anything I had the energy and time to pull together another 100 bags this year.  However, it cost several thousand dollars and countless hours to make it all happen.  If we had the thousands of dollars in hand, there's no doubt I'd be able to find the countless hours.  But so many of those hours would need to be spent fundraising, and my two little kiddos (affectionately named The Danger Twins, due to their closeness of age and ability to pull off acts Houdini would envy) keep me running from the crack of dawn until... well, truthfully, to the crack of dawn again due to Abby's sleep issues.

my proud helper with our folders and notebooks for the Care Bags

 

But don't fret, Team Abby is still alive and well, and very busy!  I may not be able to fundraise enough for 100 full Care Bags this year, but I pledge Team Abby will donate 100 blankets and books to Jefferson's ICN in 2012.  While the entire bag is so important to give, the blankets and books are really the heart of it all.  We have a great start with about 50 of each already, so I should be able to purchase and/or gather 50 more blankets and 50 more books for those special, special babies.

I've also been connecting with current Jefferson families during "meet and greets" with pizza and a chance to sit down and chat about Abby's journey and offer help as a former parent and one who has dealt with private nursing/ feeding clinics/ medical supplies, etc.  I never visit empty handed-- I make sure to bring the loveys, books, and blankets donated by you and they are always gratefully accepted by the parents.

What gives me great hope that we'll be able to donate our goal of 100 books and blankets in 2012 is that {with very little effort on my part} we've received several recent generous donations.  These gifts help offset operating costs and will allow me to stock up on blankets and books when I see them on sale.  It's not enough to pay for the 50 of each needed, but the year is young so I have hope it will happen!

We might do a some fundraising here and there, but nothing like what I hope to pull off in the future... oh yes, my wheels are turning!  Sooner or later The Danger Twins will be in school and I can put more energy into planning and pulling off some of the ideas I have rumbling around in this brain of mine.

Abby, an hour old and before head cooling

T

Until then, THANK YOU for all you've done.  We are, as always, still accepting donations of money, blankets, and books {see the "DONATE" tab above}.  If you have questions or extra time on your hands and wish to fundraise for us, don't hesitate to get in touch!

Much love and blessings to you all, and please accept our deepest gratitude for all you've done to help comfort sick babies and their families as they navigate this difficult journey.

I can't wait to visit that waiting room again with Abby, bearing more Care Bags.  Here's hoping it's sooner than later!  Cheers to a beautiful and healthy 2012, friends!

Care Bag Party

Last weekend a few friends of Team Abby gathered to help pack the bags.



We rolled blankets...

Aren't these Aden + Anais blankets amazing?

We stuffed folders.

We had an assembly line of goodies:

 

And in the end, we had this:

 

{plus about 30 more that wouldn't fit in the photos}

The Helpers:

 

Oh, and a few of us went to college together.  Here we are, not looking a day over 21-- HA!

Ms. Abby loved the attention.

We have about 30 bags ready to go, 40 more waiting for just stuffed animals, and 30 more waiting for stuffed animals and books.  If you have any new stuffed animals and/or books for babies, we'd love to add them to the rest of the bags!

  

board books

"loveys" waiting to do their job!

Many, many thanks to all those who helped.  All those hands made the work go quickly {and, dare I say, it was kinda fun?}  XOXO!

GUIDE- How To Help A NICU Family

Here are some things that helped us get through the two months Abby spent in the NICU.  Please remember that every family has a different experience and these are things that helped us-- but may be different for the family you want to reach out to.

MEALS

• During our NICU stay, we ate dinners near the hospital so gift cards to local restaurants were immensely helpful.
• A friend sent us a fruit bouquet, and since we were at home in the mornings it was great to have that fresh fruit already cut so I could grab a few pieces on the way out the door.
• Another friend sent us a box full of nutrition bars like Zone bars, granola bars, etc.  Again, this "grab and go" type food was a lifesaver because I could eat it on the train or the way into the hospital.  Once in the NICU, food was not allowed so often this was the only food I would eat until they kicked us out for rounds at 7PM.
• We had many offers of dinner drop-offs, and once Abby came home that was incredibly helpful.  It's especially wonderful if you have someone coordinating the meals so the family doesn't have to worry about it.  Sites like mealtrain.com help concerned friends and family organize dinner drop-offs.

VISITS FROM FAMILY/FRIENDS

This will vary widely by family, but for us hospital visits from friends could be difficult because only two people were allowed in the room at one time.  That meant one of the parents had to leave while someone visited.  Sometimes having a visitor was helpful, like when we needed a break and didn't want to leave Abby alone.  Also, when my husband had to go to work and I was in there by myself the time passed very slowly and it was helpful to have a friend.  Please be considerate and ask the family if they are accepting visits at that time, and/or let them know you'd love to visit if they would like companionship.  Showing up unexpectedly might put stress on the family, no matter how much they love you.  Again, this varies from family to family and even with the visitor so just be sure to ask before visiting.

GETTING UPDATES

We used Carepages.com to communicate with our circle of support.  This allowed us to focus on Abby and not an endless list of phones calls and emails to answer.  We LOVED the messages of support we received via phone, email, Carepage message, etc.-- just know that your NICU family may not be able to respond back right away.

GIVING GIFTS

Again, we were overwhelmed with the amount of support we received.  People donated cash and gift cards to help with the expenses.  Both were extremely helpful in alleviating the financial burden of such a stay.  Parking and fast dinners alone cost over $2,000 for the 50 days Abby was in the NICU.  One of the hardest parts of being on the receiving end was that I often did not even have a free minute to respond back.  It weighed heavily on me, but every spare moment was spent sleeping because we were so exhausted from the travel, visits, worry, doctors, appointments, insurance companies, etc.  Please be understanding if the family doesn't acknowledge the gift right away.  It took an average of 6 months to a year for me to get some thank-yous out!!!

Along those lines, Care Bags are available for purchase if you would like to send one to a NICU family.  Care Bags cost $25 each, plus shipping.    See this page to find out what's in a Care Bag, and email me if interested and we can get one mailed as soon as possible!

You're Invited!

It's a "Pack the Care Bags" Party

When:  February 6th, 2PM (a pre-Superbowl gathering)

Where:  at our home in East Norriton, PA

RSVP on our Facebook event page

(once you RSVP "yes" I'll email our address and directions)

There will be lots of snacks and beverages.  We'll be done in plenty of time for you to get home and catch the game, or stay here and watch it admist the bags.

Feel free to get in touch with questions or if you would like to donate food for the event or additional Care Bag supplies (we still need more blankets and books).  Hope to see you there!

Corporate Sponsors

We are currently a grassroots organization, growing with the help of some lovely and generous friends.  Help us grow even more by becoming a corporate sponsor!

Who is eligible?  
Any business that wants exposure in our print and online publications, as well as our social media connections.

How does it work?
There are several levels of sponsorship.  Choose the level that is right for your business:

advertising:  our rate is $10 a month, or $100 for 12 months pre-paid.  For this fee, your ad (with active link) will be displayed at the top of our sidebar for all to see!  If you choose the $100 a year option, we'll include your logo in our print media including our yearly press kit and the brochure that is included in all Care Bags.  We'll also be sure to promote you via our Facebook page.

donations: anyone donating $100 or more in products or services gets free advertising space for a year at the top of our website's sidebar, as well as a logo in our print media (including our press kit and pamphlets included in each Care Bag).  We'll also give you a shout-out on our Facebook page!  Email us if you would like a list of services and/or products that we need.

Note:  There is a $10 one-time fee if you need us to make a button for your ad.  You are free to submit your own logo and button, no fee attached!

We love our corporate sponsors and are happy to discuss the above options or other ideas you may have.  Email us with any questions!

Two Years Ago Today

Two years ago today we had the best and worst day of our lives.

Two years ago today, I felt a "snap" and heard my daughter's heart rate drop off the monitor during a routine induction.

Two years ago today, as nurses frantically inserted an IV and pushed my bed down the hall to the OR, I prayed the hardest I have ever prayed in my entire life.

Two years ago today, I delivered my daughter in the scariest fashion imaginable.

Two years ago today, I learned that nurses are heroes.

Abby, just moments after being resuscitated

Two years and one day from this moment, I met my daughter for the first time-- covered in wires, head wrapped in a cooling cap, and tube helping her breathe.

We were told she wouldn't make it.

We were told to expect the worst.

We were told that even if she did make it through that first week, we were not out of the woods and would probably need to decide to either take her off life support or be parents to a daughter in a vegetative state.

She was baptized in my arms.  It took two nurses and a respiratory tech to get her there.  It was the first time I would hold her, at four days old, and the last time I'd hold her for awhile.

That week, we watched our sweet girl double in size as fluid filled her tiny body, unable to get rid of it because her kidneys had failed.

I prayed the second hardest I ever had; this time I prayed she would pee.

We ALL prayed she would pee.

And then... she did.

That was the second happiest day of our lives, despite the fact the EEG showed little brain activity.

We hated that EEG.

Then came the moment of truth-- they weaned her off her seizure meds to see if her brain would wake up.

We waited and waited to see what damage almost an hour without air had done to her baby brain.

She opened her eyes.

She looked at her daddy.

Even with the doctors saying they still weren't sure if she would make it, and that she'd probably have significant brain damage, she tried to show us otherwise.

We should have listened to that little one, trying to tell us she'd be okay.

50 days after she was born, we finally took our baby home from the hospital.

So each 4th of July, when we see fireworks, we remember our own little firecracker.  And we remember to never, ever, ever, ever, EVER give up...

...or take life for granted...

...or say "no" when someone offers help...

...or forget that God does listen...

{just like those little bitty babies, even when we think they can't hear}.

Happy birthday, dear Abby.  You continue to amaze and inspire all who meet you every day.  In the words of your doctor, no pressure, but there's a reason you are here.  We expect great things from you, as you've already pulled off what most said was impossible.

Abby in front of the NICU where she spent her first hours of life

Just remind me of this little story the next time you hit your brother or throw a tantrum because you want to stay outside, you little stinker.  ;-)  You are two now, you know.