Pennsylvania

My 27 weeker was born on June 9th weighing in @ 1 pound 6 ounces. At 5 3/4 month old she weighs 10 pounds and is 20 inches long. After 90 days at the West Penn NICU, I couldn't ask for a better gift from GOD.

Hi everyone! I'm Erin and I am co-chair of the Family Teams for the Pittsburgh Walk 2006! My son, Aidan, was born at 30 weeks on December 29th, 2004, due to sudden, severe, Pre-Eclampsia. He spent 71 days in the NICU and is a NEC survivor.
Last year was the first time I participated in a walk and it was awesome! It was so nice to meet other families and share our stories! It's great to finally talk to someone else that understands what you are going thru!

The reason for this post is that I would like to announce the Western Pa Family Teams Kickoff on Monday, March 6th, from 3:00 to 5:00 p.m at the Children's Museum in Pittsburgh. The Family Teams Kickoff is for all veteran and new Family Teams from Pittsburgh, Beaver, Butler, Ellwood City, Greensburg, New Castle, Fayette and Washington.

This is an opportunity to get together to share ideas on fundraising and get excited about this year's walk! It is also a time for the families to connect with one another - as parents of preemies, we share a special bond and we all strive for a common goal - preventing prematurity. As part of the party, we hope to even have a visit from the 2006 National Ambassador, Alexa Ostolaza of Gainesville, FL!!

If you have any questions about the walk or about forming a family team, please don't hesitate to ask or email me!
We will be sending out invitations soon, but if you don't get one, please email me! We are looking forward to this year's walk and hope to make it a tremendous success, with the help of Family Teams!

Erin
mommy to Aidan James 12/29/04, 30 weeker due to Pre-E

Just wanted to remind you guys that the Western Pa Family Teams Kickoff is coming up soon! It's on Monday, March 6th, from 3:00 to 5:00 p.m at the Children's Museum in Pittsburgh. The Family Teams Kickoff is for all veteran and new Family Teams from Pittsburgh, Beaver, Butler, Ellwood City, Greensburg, New Castle, Fayette and Washington.

This is an opportunity to get together to share ideas on fundraising and get excited about this year's walk! It is also a time for the families to connect with one another - as parents of preemies, we share a special bond and we all strive for a common goal - preventing prematurity. As part of the party, we hope to even have a visit from the 2006 National Ambassador, Alexa Ostolaza of Gainesville, FL!!

If you have any questions about the walk or about forming a family team, please don't hesitate to ask or email me!
We are looking forward to this year's walk and hope to make it a tremendous success, with the help of Family Teams!

Erin
mommy to Aidan James 12/29/04, 30 weeker due to Pre-E

Hi! My name is Julie. My son Joshua was born last March at 32 weeks. He weighed 4lbs. 6oz. He was in the hospital for one month. I can't believe he is already one year old. I was wondering if anyone from the area delivered at Lehigh Valley Hospital or had a baby in the NICU there. If so, please tell me about your experience. Our experience was good but there was no support group of any kind and my husband and I felt alone. I would like to start something there so parents have someone to talk to. Let me know your thoughts.

Julie

I live in Sprinfield, Delaware County. I have a two year old - Emily and 6 month old twins - Hannah and Isabelle who were born at 26weeks on Thanksgiving morning!!!! They weighed 1lb 10oz and measured 13 1/2 inches long.
Hannah was given slim to zero chance of survival, Issy's chances were very slightly better. They spent 83 and 91 days respectively in the NICU at Lankenau hospital. Hannah then spent 3 weeks at CHOP for a severe cold.
At their six month check up, Hannah weighed 10lb 4 oz and Issy weighed 11lb 3 oz - i can hardly believe we made it this far!!!

If so, please respond. Would like to try establish support group in area.

I am not from PA but I thought I would help you find some people that are...

Go to the "Get Involved" area of Share and find the topic
"Get Local: New Jersey to Wyoming". Than find the discussion for "Pennsylvania". You can see if anyone in your area has posted there and e-mail them thru Share.

Good Luck,
Jackie

On July 29th at the Radisson Hotel in King of Prussia PA (right outside of Philadelphia) My family and I are holding a Blood Drive in memory of my little angel Katherine Taylor "Katie" Bralski

Katie was a little impatient and thinking she had a round trip ticked decided she wanted to meet her mommy and grandparents sooner than her due date. Katie was born March 22, 2006 only 22 week pregnant I was very scared. Katie spent the rest of her precious little life fighting. 12 days later my little girl was unable to fight any longer and decided it was time to become an Angel. While she was in the NICU unit at Children's Hospital of Philadelphia she needed alot of blood. Which we all know as most of us here are Mommies of precious little preemie babies. Because of this my family and I with the help of the Red Cross, are having Operation: Katie's Blood Drive- this is our first one , with many more to come. This will be a yearly if not semi-yearly thing we will be holding. I am inviting anyone in the Philadelphia area and beyond that would like to help a little child out by donating blood it would be a wonderful thing!!
If you are interested please email me at Katiesmommy0322@aol.com and I will get you all of the info you need to schedule an appointment - or if you cant please see if someone you know can and will!! I thank you all for reading this. and I pray for all Parents that have been in my situation and Pray for all preemies born every day.

Thanks
Tana Bralski

To Katies Mommy,

I have family in the Philly area. My Uncle in the COO of CHOP, I am passing the info of the blood drive on to him. My cousin Ryan who is the son of the COO has cancer and they have a foundation called ConKerr that fights for cancer research. I will be sure to let them all know of your events so that they can spread the word. They live about 5 mins from the hotel. I am sure that they will be very interested because prematurity has also affected our family. Good Luck and Beat Wishes.

Feel Free to contact me at any time.
Kathryn

Hello everyone. I was just wondering if there was anyone here from Erie &/or Erie County? My youngest daughter spent her first 28 days in the NICU. Im just looking for others to talk to about different things. Hope to hear from someone soon.

Vicki

I'm from Spring Grove and 26 week twins at the York Hospital NICU. They were born May 10, 2006. We probably see each other all the time and don't even realize it!

Hi everyone, for anyone in the Philly area the blood drive is July 29th at the Radisson Hotel in King of Prussia (Ice Night club/Valley Forge convention center) it will be from 9am till 3pm. we need atleast 50 donors to make this sucessful. The blood drive is in my little angel Katie's memory. please go to www.pleasegiveblood.org/donate once there enter your info and proceed to the next page our sponsor code is 9G69 any questions please email me@ Katiesmommy0322@aol.com.
 The March of Dimes will be there as support. I would like to thank Fran from the King of Prussia office for all of her help so far. Hope all will come out.

Hi everyone! Just wanted to invite you to the Western PA Prematurity Summit on October 9th. It's from 7:30 am until 2:00 pm at the Western Pa School for the Blind in Oakland.

We are in need of mission families to attend and share their stories. Their will be speakers including healthcare professionals and preemie parents. We will also be breaking into small groups to discuss the impact of Prematurity and how we can affect change in various areas including healthcare, medical intervention, educational intervention, and spiritual outreach.

Please join us and feel free to pass this invitation along to anyone that may be interested! If you have any questions, email me at elmalloy1@yahoo.com.

Also, if you are interested in helping us plan events for Prematurity Awareness Month in November, please let me know! Thanks!

Th Pittsburgh Chapter of the MOD is hosting an event called the "Day of Gratitude" - a way to say thank you to all the doctors, nurses and staff that care for babies in the NICU. If you would like to participate in an event at a local NICU - West Penn, Magee, AGH, Children's, TIC or Mercy, please contact Kelly at KFraasch@marchofdimes.com.

Thanks!

Hi, I'm Jackie and I live in Morton. My daughter Lillian is a 26 weeker.She was 1lb 13 oz at birth and was 13 inches long. She was in the NICU at Bryn Mawr for 76 days. She is 13 months old now and doing very well. I would love to meet with other preemie moms!! I think we can help each other with advice and support. My email is guy1118@msn.com. If you would like to get together, email me after the holidays.
Jackie:smile:

State and local government officials will proclaim Feb. 7-14, 2007 as "Congenital Heart Defect Awareness Week." Every year families and professionals across the country will join together to celebrate Congenital Heart Defect Awareness Week. This is a week set aside each year to honor families of children and adults with congenital heart defects and disease (CHDs) and the professionals who work with them, and to cherish the memory of lives lost. By raising awareness, we can make a difference for future generations and find meaning in the challenges our children and adults face.

Pennsylvania Governor Ed Rendell, made a proclamation giving new meaning to the week of February 7th - 14th 2007. The proclamation named Febraury 7th - 14th 2007 Congenital Heart Defect (CHD) Awareness Week at the request of Pottstown, Pennsylvania resident Katie Busch, whose daughter suffers from two congenital heart defects was received.

“Valentine’s Day holds a special meaning. It’s not about flowers or chocolates; it’s about love and life. It’s time to honor the children and adults that are living with congenital heart defects and remember the ones we lost.” says Katie.

The proclamation said the observance of "A Day for Hearts: Congenital Heart Defect Awareness Week" helps to educate the public about CHDs and learn about possible treatment options and the importance of early diagnosis and intervention. The observance also recognizes the cardiac doctors, nurses and researchers that assist those affected by the condition and allows citizens to recognize those born with the defect and remember those who had CHD but have since died.

Busch asked that all Pennsylvania citizens learn more about congenital heart defects and support education and research so that children and adults with CHDs may lead longer and more active lives.

Each year, an estimated 40,000 babies are born in the United States with a congenital heart defect; CHDs are the most common birth defect and the number one cause of death from birth defects during infancy. Nearly twice as many children die from congenital heart defects as from all childhood cancers combined, yet research for cancer receives five times the funding. This is due in large part to the lack of awareness most people have about congenital heart defects.

I just read your post about the prematurity summit and I'm surprised I didn't hear about it in my son's backpack. He goes to the WPSBC. I would have liked to go to your gathering. (I have former 26-week twins Jacob--who goes to the school for the blind--and Hanna). Is there something next year maybe?

Hi there! I responded to your post by email first (saw it there before I logged on to Share...). Let me know if you need any more info!

Hi!
Just wanted to remind you to sign up for WalkAmerica!
www.walkamerica.org

The walk this year is April 29th at North Shore Park (a new location since Point State Park is under contstruction). I'm the chair of the Family Team committe for the walk this year, so if you have any questions or need any help, just let me know! We're planning activities for the Family Teams tent including a raffle of prizes!
We're also doing a t-shirt contest for the best family teams t-shirt and a jr walk (shorter than the standard walk) for those of you that want to participarte but that can't walk that far!

Look forward to seeing you at the walk!

The MOD is in need of ambassador families to share their stories....at WalkAmerica and other MOD events. We are looking for families in these areas to share their story of a child born premature, a child with a birth defect or families that may have lost a child. It's not limited to children, adults that was born premature or with a birth defect are welcome as well. We are in need in the following areas:

New Castle, Ellwood City, Titusville, Meadville, Somerset, Jefferson County, Johnstown, Bradford and Warren.

For more information you can contact me or Kelley Fraasch, Associate Director of Program Services - 412.391.3193 x115 or
kfraasch@marchofdimes.com

Thanks!
 

Erin Malloy
WalkAmerica Family Team Chair
MOD Mission Volunteer

Hi Erin,

I'm good pals with Kelley! If anyone calls tell her that James from SHARE says hello!

James

Hello Everyone-
This folder isn't getting any messages so I thought that I would put it out there and see if there are any families here on Share in the Philadelphia area.
Melissa

I was just wondering if there was any familes out there in the area on share that were from the area or around in the near the area or in lancaster area.

I am not from the Hershey area..I live just north of Philadelphia in Bucks County. I know the MofD at the Lancaster office and they are awesome though. There doesn't seem to be very many PA people on here...I would love to see more!!
Talk to you soon-
Melissa

I had met some great moms this past week from the Pittsburgh area who assured me that they will check this PA folder? So where are you ladies???
Melissa

We are near the hershey medical center, that's where my son was for his NICU stay and we stayed at the mcdonald house there during all of it. You don't see alot of pa people hear, but we also did the walk in april in lancaster. Nice to hopefully meet some pa moms.

Hi
I am in here in Pittsburgh and feel woefully out of touch. Is there a mailing list I can get on or meetings I can go to. My daughter (29 weeks) is now 21/2 and would like to connect with others and hopefully volunteer. As with everyone our time is not abundant but we had a great stay at Magee and would like to know how to help. Maybe with the Walk or Prematurity Awareness month?
Thanks.
Ellen
gawalte@duq.edu

Ellen-
Have you been in touch with your local office there in Pittsburgh. I was there a few weeks ago to talk to some NICU families and there are some wonderful Moms that are volunteering. The staff in Pittsburgh is AMAZING. Call Kelley Malcolm at the Pittsburgh office and tell her you are interested in volunteering. She will steer you in the right direction. I know that I met a few other moms who also were at Magee. I am pretty sure that they are doing a Day of Gratitude there at Magee in November that you may be able to get involved with. Tell them Melissa from Philly said HELLO!!
 Here is the chapter information
Western Pennsylvania Division
Address: 650 Smithfield Street, Suite 1180 Center City Tower
Pittsburgh, PA, 15222-3907
Phone: (412) 391-3193
Fax: (412) 642-9257
Hope it goes well--
Melissa Z

I, too, am mommy to a 29-weeker now 2 1/2. I'm in Williamsport (North-central PA). I haven't been on the site in some time. My daughter was born at Geisinger Medical Center/Janet Weis Children's Hospital and spent 40 days in the NICU. The hospital now has a MOD employee working in the NICU as a Family Support specialist. Last summer they implemented a Family Support committee made up of NICU staff (doctors, nurses, social workers, etc), parents of NICU grads, and personnel from area agencies such as Early Intervention. It's the only such program in the state. I, too, was anxious to do something to volunteer with the MOD and eagerly accepted the invitation to join the committee. We are doing great work for families with infants in the NICU. I feel like I am actually doing something that makes a difference. We met today in fact. We will be holding our first "Light a Little Star" event at the hospital next month (see lightalittlestar.org). We're in Danville, PA if you want to check out the link. Our event will be a mini-fundraiser and a NICU reunion event for babies discharged from the NICU in 2006. We were in 2005, but we'll be there since I'm on the committee. I'm looking forward to it. There are only a handful of these events in the country - I believe only 2 in PA. Maybe you could put-together an event like this in your area.
Andrea

Andrea-
That is wonderful that you are involved in NICU family support. I am involved with the MOD Chapter here in PA. I live just north of Philadelphia in Bucks County. We actually hosted the other Light a Little Star here!! It is such a cool event.
My husband was in Williamsport on business recently working the Little League World Series!!
Please let me know how the event goes..post some pcictures of it!
Melissa