Spotlight on Preemies...Cousins

This next preemie experience is brought to you by my niece who has a family of her own, and her story to motherhood is nothing short of a miracle itself. She was (and still is) an amazing supporter of my two NICU Grads, and is just all around an amazing woman. Here's what Bonnie had to say:

Your twins (preemies) have impacted my life in multiple ways. Their early arrival and touch and go moments brought me closer to God. Showed me, first hand how fragile life is, inspired me not only to pray but to believe in the power of prayers. They taught me to slow down and enjoy my own children more. They were the reason I appreciated my full term pregnancy in it's good and bad moments. They helped me establish a new and deeper connection with my Auntie (you). They showed me a new found appreciation for life itself Your 2 little miracles are stronger and more loved then they can ever imagine. :)

Spotlight on Preemies...Loving Your Friend and Her Preemies.

Here's the response from a friend of mine, Ashley, who rode this roller coaster with me, as a mom to be...

My preemies are my friend's kids. It effected me because as my friend was going through this I was pregnant myself so by talking to her she taught me about strength and that everything works out in the end. With the babies being in the NICU I can honestly say I was scared for her and prayed all the time. I tried to be her rock while inside I was hurting for her. I knew NOTHING about preemies. I learned through her that everything works out they way it should and that prayer will help you through anything and also to be thankful for your child, and hug them everyday. For another person in my shoes I would say be there for your friend. Don't express to them about you being scared. When they cry to you be there and shed a tear with them but mostly be there as an ear. Let them beat you up when they need to, if they are your friends they know they can yell scream and cry to you but you will always be there. You need to try and lift their spirits because when they feel like they are down to nothing they need to be brought back up. I want to let the mothers of preemies know there are people out there for them. The babies will be ok, there are doctors and nurses for them, you need to find a good friend or family member to be there for you.

~ * ~

Ashley is probably one of the few (non) preemie mom's that I am friends with, who I really really shared my struggles with. I could always count on her to be on Facebook when I got home from a long day at the hospital with Addison and Blake. And I'd get text messages from her once in a while just reminding me that she was thinking about me. It makes a difference. If not for friends like Ashley to talk to and my friend Tracey, two people I knew I could call anytime and would do anything for me, I'd have been lost.

As Ashley mentions is it super important to find someone for YOU... the preemie parent. Even the greatest of spouses can become defeated and need a pick me up, plus we all cope differently. There are support groups out there. I have met some amazing woman through this and have formed a bond with other mom's in similar situations. I met an amazing mom who I've had the pleasure of actually had the pleasure of meeting in real life and have instantly became the best of friends with her as well. It helps to have people in your corner.

If you are a new preemie mom and need resources check out www.preemiemomblog.blogspot.com , Find the Preemie Resource Blog on Facebook https://www.facebook.com/PreemieResources  and connect with other mom's who have been there or are going through this same thing.

Other great resources are message boards like the ones at www.thebump.com 

Spotlight on Preemies...Judith and her Mommy

As a way to raise awareness I wanted to take some time to shed a spotlight on how prematurity effects everyone, be it a parent or other family members or friends. Follow along with the Q & A throughout the month as I share here...

Our First Spotlight comes from a parent - Meet Judith and her mom Rebecca

Who is "your" preemie? (daughter, niece, grandchild, friend) & Tell me a little bit about him/her...

Judith is my first child, born at 29w2d due to severe pre-e and IUGR. Her journey had 2 major bumps; The first was a NEC scare that turned out to be a meconium ielius (the jury's still out whether this was strictly preemie-related, if it was the start of a complication associated with her Cystic Fibrosis, or a combination of both), and she was pretty sick for about a week. The 2nd bump we almost lost her. She developed late-onset group B strep/sepsis/possible meningitis infection and spent an additional 2 weeks in the NICU for antibiotics. She was discharged at exactly 2 months old after a 63 day stay.


How would you say YOUR experience with this preemie(s) has effected you?

My experience was eye-opening and completely changed me. I knew I was a high-risk pregnancy from then moment we got our positive pregnancy test during IF treatments, but I never expected to develop pre-e or IUGR 12 weeks before my due date. Seeing my body swell up was one of many terrifying moments at the start of our preemie journey, and deep down I had a feeling I would be delivering my baby within a week. I had no idea what to expect with delivering a baby that early, what her prognosis would be, or if she would even survive. I learned quickly how to be an advocate for her, and how to be her biggest cheerleader. The events came with a price, though: I've gone through a roller coaster of emotions that, almost 2 years later, still have not resolved. Many of the memories are burned into my brain, and it's hard to think about some of the days spent in the NICU, especially those where her life was on the line.

How were you able to handle the NICU experience?

I surprised myself. Overall I feel like I weathered it well in the moment. My husband is not as strong with high stress situations like that, and I knew I had to stay strong for him and Judith. I definitely had days where emotions ran very high, and I had days where I would cry a lot. I had days of frustration and days of joy. When people talk about the NICU roller coaster, they mean it!

Before this experience what did you know about preemies?

I honestly didn't know a lot about preemies, except that medical technologies have come a long way and babies born earlier and earlier have better survival rates then they did years ago. A lot of what I learned came through research and learning on the fly while Judith was in the NICU.

What have you learned from all of this?

Nothing in life is a guarantee, and things can change in an instant. The preemie world is one that no one really expects to be in, but if you become a part of a community, there are lots of other wonderful parents who will support you and help you get through it. While our preemies may look fragile, they are tough and are fighters.

What advice would you give another person in your situation (as a parent)? 

Having a preemie can be a traumatic experience, but don't be afraid to reach out and connect with other parents who understand what you're going through. Having a good support network is really beneficial. You are the best advocate your baby has - don't be afraid to speak up on their behalf, especially if you have a gut feeling about a situation. Also don't be afraid to ask questions if you don't understand something. The Neos and nurses with help you out. Get a good, quality breast pump, and ask you LC to help fit you for the right size flanges. Preemie books can be helpful, but it's best not to read them cover-to-cover; only read the sections that pertain to your situation so you don't cause any unnecessary stress or worry over a problem that you may not have to deal with. Stay off of Google - it is not your friend (I learned my lesson the hard way that one)!


To read more about Judith and her amazing mommy visit their blog - 

2 Bostons, 1 Preemie, & 65 Roses: http://bostonsandapreemie.blogspot.com

November is...

Prematurity Awareness Month - We all know this is near and dear to my heart. Won't you help us raise awareness too?

How can you help? 

Share this blog and other blogs about preemies. (On Facebook, click the share button below this post). 

Some other great blogs include: (just to name a few)
www.preemiemomblog.blogspot.com - Where you can find birth stories and day to day stories about many of my very favorite preemies and their moms. And from here you can also find links to other Preemie Mom Blogs.
http://hydrobabies.blogspot.com - Fellow Preemie Mom and her two boys who were diagnosed with Hydrocephalus. Her most recent post (Dated 11/1/2012) gives great insight to the world of prematurity and what it means for us.
http://urbanflowerpot.blogspot.com/p/love-plus-one.html - Fellow Preemie Mom and one of my closest friends.

Share information from the March of Dimes. (www.marchofdimes.com)

Educate yourself and those around you.

Share your own story (whether you are a mom, grandmom, dad, uncle, cousin prematurity effects us all, share what it was like for you to love a preemie).

And of course you can always make a donation (no matter how big or small) to the March of Dimes. (see link above).

Stay tuned for some spotlight posts through out the month and an extra special progress report on Addison and Blake. <3

Waiting Out the Storm Part II

Lost power at noon for about an hour or hour and a half. Knock on wood we are still "safe". The babies haven't seemed to notice much except Blake keeps asking to go "bye-bye" in the "car". And earlier he said "Water out there".

Addison tried Greek Yogurt today and loved it. We are on day number 4. Today has been a little off and she isn't doing as well as she had been but it could be from the schedule mix up today. We'll try again tomorrow. 

Not much else to report. Just waiting it out and the cold front that is coming with it.

Jake some how got sent home which is unheard of so it's nice knowing he is safe and not out in this mess. I am glad to have him here (except for when he is driving me crazy or asking what's to eat...he may eat us out of house and home.)

Waiting Out the Storm...

Last year we had our babies both home from the NICU for a little over a month when Hurricane Irene made her way inland and threatened many. I remember begin relieved because we were in a basement apartment but terrified because "what if it floods" "what if we loose power, will we have enough O2 for Blake power comes back on" "what if Addison's feeding pump looses charge" "what if we run out of water", the list went on and on.

This year the babies are toddlers and they need so much "more" and "less" and Hurricane Sandy takes landfall. The worry is still there but for a million different reasons, and makes me sometimes wonder if we are really truly prepared. We have a basement where we will take refuge if need be. I am keeping everything I can charged in the event we loose power. We made sure we had extra food on hand, etc. Unless things change dramatically, it's anticipated that Jake should be home with us during the worst of it which makes me feel a lot safer.

Blake will no doubt be sad that we cannot go "bye-bye's", so I am also sure our days will be filled with lots of crafts and "let's not go crazy" games. Hopefully power remains on so that we aren't stumbling around in the dark either. Either way... here goes nothing.

Still there are many others that need our prayers. Those service workers who will be out there doing damage control, safety patrol, restoring power and fixing damage in the days to come. It's no doubt that many people have been and will be effected by this hurricane. Let's pray we all are able to weather this storm and remain safe. May our family and friends remain safe during this too.

Moving On Up....

(North that is).... That's right. We relocated, AGAIN. But this time hopefully for awhile longer. We found a cute house that has room for us to grow (and accommodate all those wonderful TODDLER must haves) just between Gettysburg and Lancaster, its absolutely perfect. We can spend our mornings eating breakfast while watching deer frolic just past our back yard and come night a calm passes over the town. Country living at its  finest.

With this move has come a cost though... currently we have very limited internet access, hence the lack of blog posts. Promise you wont forget about us. Just as soon as we can find a good solution I promise we'll be back to the regular posting.

So since my last post Addison is officially off and walking aka running and she has finally started to stand up and walk from the middle of the floor. Blake is learning all sorts of new words and recently told me "Not the boss." Yes my almost two year old (HOLY COW) told me I am not the boss. I am going to have my hands full. He is also learning lots of animal sounds and can "read" picture books to me by naming animals and things. Addison is taking cues from him and using words and signs to communicate with us more and more. She recently has learned "drink" and will use it when we are working on eating and she needs a drink to help clear her mouth.

As far as eating goes...I don't want to spoil things or jinx them so lets just say we are off and running again and making some HUGE progress. We'll leave it at that for now. But after a very in depth conversation with her Ped we made some decisions and changed the game plan. We'll see how it goes and see what GI has to say in December.

At her last Ped appt he also mentioned concern about Addison's left eye drifting inward. I called her eye doctor and was told she couldn't be seen until Feb so I made a few more calls and found another doctor here in near our new place who can see her next week. Ironically enough the "new" eye doctor did her residency etc at both Mercy and UMMC where we are allllllll too familiar. It's like it was meant to be. Her office staff was amazing on the phone so we'll see how our first visit goes. Hopefully it won't be anything too serious and we can just keep an eye on it for now.

I think that's all I've got for now. Looking forward to getting some pictures uploaded at some point so you can all see those adorable faces again.