Pennsylvania

Hi Bekah,
Congratulations on the arrival of your sweet baby boy! I know it feels like an eternity until you can bring your son home. Try to be patient, and love on him. Your love and presence will bring him through this, one day at a time.

I will keep him in my prayers, that his little tummy continues to heal. My girls each had a NEC scare, and its just that, SCARY!!

I live in Illinois (outside of Chicago) now, but I'm originally from Altoona, Pa.

Welcome to SHARE. You will find great support and advice (if you need it) here. Keep us posted on your little guy.
Karri

Here's about my 2 little munchkins . . .

The pregnancy was going great! I found myself reading numerous books, as any 1st time mother would do and I followed all the precautions to make sure my 1st pregnancy would be a success. But then the unexpected happened. Our little boy, Jacob, was born 6 weeks premature on Dec 26th 2002. He weighed 4lbs 13oz and 17.5 inches long. The NICU team was standing by just in case they needed to take him. He didn't go to the NICU. He was well enough to go to what is called the Well-Baby Nursery. The biggest set back was when he developed Jaundice, shortly after birth and we couldn't bring him home. When I was released from the hospital, I was so upset and devastated. Our little boy had to stay 2 extra days. He came home 2 days later. When he came home he needed to have a "wallaby blanket"(photo therapy blanket) on him for his jaundice for about 1 1/2 weeks. He had no sucking reflexes so breastfeeding was difficult, we had to syringe feed him for a couple days, he couldn't pass his bowels real well, we had to help him. He is now 2 yrs old. He has a speech delay which makes him developmentally 15 months behind in speech and 3 mos behind otherwise, he is receiving therapy once a week. Jacob also has a lazy eye in his left eye. He sees an eye specialist every 6 mos. Jacob has a sister.

In October 2003, my husband and I learned again that we were pregnant with our second child. We were considered a High-Risk pregnancy due to the fact of me having Gestational Diabetes and at 18 weeks we learned our baby to be would be a little girl. This tickled both of our hearts because we already have a son. Our family would be complete.
Our daughter, Kylie, was born March 31st, 2004. She had a head full of dark hair and had blue eyes. She was 7 pounds 8.4 ounces and was 20 inches long. She was beautiful. Three months after our daughter was born we started to notice strange symptoms swollen legs, bluish face and extremities, fussiness, trouble breathing which Katie suspected might be related to a heart murmur doctors had told her was innocent. Her heart murmur was not innocent. Kylie is now 14 months old, she was diagnosed at 4 months of age with congenital heart defects called pulmonary stenosis (her case was severe at the time), where blood flow from the heart to the pulmonary artery is blocked, and atrial septal defect, a hole in the walls of her top two chambers. They are life-threatening without surgery. Kylie had intervention done on her heart back in Sept 2004. She currently has minimal blockage and the hole in her heart. She will need to take antibiotics for any surgical and dental procedure. And she will continue to see her team of cardiologists. Congenital heart defects are problems with the structure and development of the heart that are present at birth. In most cases, the cause is unknown, according to the March of Dimes. Heart defects are the No. 1 birth defect. There are about 35 identified types of heart defects.
Both of our children, have been through a lot. They have been through numerous blood tests, x-rays, hospital stays, doctors visits and ER visits.

Kylie had something called a balloon pulmonary valvuloplasty done on her Pulmonary Valve. She goes for a checkup this friday and I'm anxious to know how things have been going since her last appointment back in January.

Another heart mom and myself started a support group in Southeastern Pennsylvania called Mended Little Hearts of SouthEastern PA. There is a national website it is http://www.mendedhearts.org/mlh/frame-mlh.htm

~*Katie*~
Mom to Jacob 2 yrs old 6 weeks early Dec 2002 & Kylie 14 mos old PS & ASD March 2004
http://www.babyhomepages.net/imktbear - Kylie
http://www.babiesonline.com/babies/j/jacobriley - Jacob
"The heart has reasons that reason cannot know."

Katie....I am close to Reading as well....I actually spent almost 2 weeks on bed rest and gave birth to my daughter in the "Reading Hospital and Medical Center" - I am out near Kutztown! My daughter, Lauren, was born September 27, 2004 and was 10 weeks early at 3 lbs. 13 ozs..... Premature Rupture of Membranes with no explanation why! That was the scariest, most terrible time of my entire life. Did you have your children in Reading or did you have to go elsewhere? We were very impressed with the NICU at the hospital and just knew those doctors and nurses were Lauren's special angels....she had to spend about 4 1/2 weeks there and she is doing very well now. She is a little delayed but she is just developing by leaps and bounds. I still worry about her all the time and pray that she continues to improve. I will say a prayer that your little girl Kylie has a great checkup this Friday......
Sara Bryant

Sara-
Kutztown is where I went to college!! I miss that town!!
Melissa Zavorski

Hi Sara,

Yeah I delivered both of my children at Reading Hospital. I had a midwife both times. Jacob required no NICU stay and no NICU period which was total amazement to everyone that was present. My room was filled with hospital people when I delievered. I too had "Premature Rupture of the membranes" and there was no explanation they even tested the placenta, and nothing! Then when I had Kylie, she was full term but it was a shock when we learned about her heart condition. Jacob is delayed. He does not talk they don't know why. He does receive therapy for speech so now we are awaiting to hear if they want to get his vocals checked.

KYLIE'S CARD. APPT. WENT WONDERFULLY!!!!!! She'll go back in 6 months
in December.

Nothing has changed and that is a good thing. Dr Cyran, Kylie's heart
doctor is gonna send a report to her pediatrician about Kylie and said
about her maybe seeing an orthopedic because of her legs turning
purple when she stands. He said the PT will help her with that as
well. As far as the OT that should help too with eating foods like
yogurt and baby food texture even though she is not eating baby food.
With her huffing and puffing like the big bad wolf, that is what they
want, it means her heart is working really well but if she passes out
to let them know. It's good to know her heart is working stronger.
They didn't do an echocardiogram but from the EKG it has shown that
nothing has changed which is great news! Her O2 levels are at 100%.

~*Katie*~
Mom to Jacob 2 yrs old 6 weeks early Dec 2002 & Kylie 14 mos old PS & ASD March 2004
http://www.babyhomepages.net/imktbear - Kylie
http://www.babiesonline.com/babies/j/jacobriley - Jacob
"The heart has reasons that reason cannot know."

Melissa - I am 2 minutes outside of Kutztown....I actually graduated from King's college (PA) but this is my husband's hometown....his cousin is going to KU next year too! Small world....
Katie....I'm glad to hear that Kylie's appt. went so well. That is AWESOME!!!!
It is also amazing that your son didn't have to spend anytime in the NICU....that is so great. These babies are such fighters....
I'm sure Jacob's speech will pick up soon....but I'm also sure that it is hard waiting for it to happen! I've been "looking" around this MOD website for a while and have read so many different things - and I'm sure you are well aware of the fact that oftentimes a preemie's speech is delayed - and then all of a sudden they just start to pick it up and then you can't make them STOP talking! I hope that is the case with your little guy too!!! But I'm sure you are worried about it so hopefully those doc's will tell you something good when he gets his vocals checked. Anyways, thanks for the reply....good luck with your two little angels.....Sara Bryant

Hi Melissa!
Just wondering where you are now....you had said outside of Philly.....I worked in Douglassville before I had my daughter.....does that sound familiar? I also have a girlfriend from college in Phoenixville and some friends in Collegeville! Just seeing if we might know some of the same people!!!
Sara B.

Hi-
We live in Delaware County and have an ex- 26 weeker who is now 6. Sarah just completed kindergarten. We are so proud of her.
Tina

I am looking for someone around me with a child that has special needs I really need to see how they deal with things. Such as G-tube problems or prematuraty problems and issues. Thank you

Mother of 32 weeker, 37 weeker, and 27 week twins

I am close to Pottstown and my wife and I had a 32 weeker Two weeks ago. She is still in NICU but progressing.

Frank

I live in Lower Bucks county not too far from you...are you involved with the local chaper of the MoD?
Melissa

I just got an invite yesterday and my husband and I are considering going. Just wondering if anyone else was???

Also, we are from Pittsburgh - any other Pittsburghers here????

Erin
mom to Aidan, 12/29/04, 30-weeker due to Pre-E, Unilateral Cleft Lip

I am from Bradford County. Just wondering if anyone was around my area. Or if they have had a child and the Janet Weis Childrens Hospital in Danville Pa. (Geisinger Medical Center)

Wanted to let ya's know I recently moved from Reading to Pottstown. Much better area where we are living and safer than Reading. Now to get my info switched over here hehehe

I'm in Williamsport and delivered at Geisinger in February.

Hello! I live in Williamsport and delivered my almost 30-week daughter, Mia, at Geisinger in February. Anyone from nearby?

HI there,
I'm a mommy to a 33 weeker. Little Maddie was 3lb 1oz spent 3 weeks in the NICU at Magee and is now a happy healthy 5month old. Anyone from the Burg who would like to talk you can post or email me at alg2278@verizon.net.
Hope to talk to some other premie moms or dads.

amy

I live in West Grove, PA, which is near the Delaware, Pennsylvania, Maryland state lines. Would love to talk to other parents of premature babies. My daughter was born at 29 weeks, weighing 2lbs, 10 oz. She just turned a year old! Please respond if you would like to chat!

Hi Amy - Yes, I'm from the Burg! I had a 33 1/2 weeker, Emma, that also spent a couple of weeks in Magee's NICU! I loved the picture of Maddie in the swing! I'm not technically adept enough to attach a picture - but Emma had the same Ocean Wonders swing and loved it! We thought it was a God send, because it was one of the few things that would entertain her, so that we could actually get other stuff done! Our Emma is now 17 months old! How is everything going for you and Maddie? Anne
P.S. If you want you can e-mail me at home hoosierlavelle@aol.com.

Hi I had a 25 weeker who is now 3 months old and finally home. Anyone from the phila area?

Hello, My name is Brooke,I live in Reading,Pa. I have a 3 year old named Madeline,who was born at 28 weeks,I also have a son who will be 9 in Dec

Madeline is truly a princess!!!

Welcome, Brooke!
Hugs!
Michele

Thanks!! Hoping to get to know some,mommy's of preemies,this is all new to me,and I wish I had found this board,when Madeline was a baby.

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