Preemie Parent Support Groups

There are great groups you can join for preemie parent support on Facebook. It's a great way to meet and have conversations with other preemie parents.  All you have to do is search in Facebook. 

Here are some great ones I have found:

 

Micro preemie Support Network

Parents of Preemies Day  

Preemies Today 

Peek A Boo ICU

I also really like a group on Facebook called The Preemie Parent Exchange. The page is basically like a Craiglist for preemie parents. Parents can post extra supplies they have and parents can also request supplies that they may need.  

I find the groups really helpful but I do have a one suggestion worth noting. 

If you are the parent of a micro preemie I think it is truly best to stick with groups that are dedicated to just micro preemies in my opinion. 

Other preemies groups often have parents who post things about their 34-36 weekers and their issues/concerns are way, WAY different than micro preemies problems/issues.  There is a  reason there is the word micro in front after all. 

 I understand how devastating having a baby early (even if it's a week early) can be and I don't want to down play the seriousness, but the issues are different and I find it helpful to talk to others that have a similar situation. With that said, any time you can talk to another preemie parent it's helpful.

Share the knowledge friends!

FYI

Movie Time!

Did you know that AMC Theaters participates in a program called Sensory

Friendly Films?

It's a movie with the lights on and the sound turned down to a lower volume. Children are encouraged to talk and get up as needed.

Although the idea originated to help families with children on the spectrum, I can see how children with other needs could benefit from a program like this as well. It's a great opportunity for families to enjoy a movie together that might not get the chance otherwise. 

There are participating AMC theaters all over the country so check out their website for the full listing. 

Here are the upcoming movies:

Does Anyone Have Any Questions?

If you are a preemie mom or dad and have any questions please feel free to comment or email me at MBFTurner@gmail.com

No questions is too silly or stupid. I am happy to help in any way I can.

While in the NICU my daughters experienced:

-brain bleeds

-apneas

-feeding issues 

-hearing loss

-cerebral palsy

-hydrocephalus 

-lung disease

-vision troubles 

-bradycardias

-hernias

-feeding tubes 

We have been through a lot and even if it isn't posted I probably know something about it just from being in the NICU for 4 months. I'm not an expert but I am a preemie parent advocate and am here!

Trust Your Instincts

Here is my latest blog post for Preemie Babies 101 on trusting your parenting instincts. 

Elizabeth  

My twin daughters were born at 26 weeks and spent 4 months in the hospital. One day while I was visiting my girls in the NICU someone told me to trust my instincts. I thought to myself, “Trust my instincts? What does that mean? Do I have powers now like a special 6th mommy sense?!” And the truth is I did and you do, too! It is actually amazing!

While the girls were in the NICU I noticed on 4 different occasions that one of my girls looked pale and just looked off. I brought it to the attention of the nurses right away and they took me seriously.

 It turns out that each time I noticed this, they actually ended up needing blood transfusions because their blood counts were low. I listened to my instincts, and I spoke up.

Another time I noticed that one of my girls was more fussy than usual. She just seemed uncomfortable and I couldn’t soothe her. I brought it to the attention of her nurse and she called the doctor in to look at my daughter. Her doctor discovered she actually had a hernia, so a few days later she had surgery to repair it.A NICU can be an intimidating place.  There are so many people with many different specialties. You may feel overwhelmed or feel like there isn’t anything you can contribute or add to your child’s care.  Don’t be afraid to ask questions or speak up. It may be out of your comfort zone at first, but building relationships with the nurses that you see every day will make it easier. If you notice something off about your baby, tell a nurse right away. A good nurse will always listen to  you.  If one nurse won’t listen, ask someone else.  Trust your instincts. You may notice something that isn’t right before they will since you see your baby more than they do and you are only focused on your baby. If your gut is telling you something is not right tell a nurse. If could turn out to be nothing and that’s even better.  Every time you ask a question about your baby, you learn something.

Having a child in the NICU is a challenging time. Make it to doctor rounds as often as possible.  This is when you will find out what the daily/weekly goals are and the most up to date lab and test results for your baby. You are allowed as the parent to be present during the doctor rounds on your child. This is a great time to bring up any questions or concerns you have. If something doesn’t feel right in your gut. SPEAK UP.

Use your instincts and advocate for your child. I know I am glad I did.

Happy 4th!

Happy 4th of July! I hope everyone has a fun and safe holiday. We are headed to the beach for a week. I'll be sure to post some pics of the girls.

Here is a few pics from last 4th of July. A lot has changed in one year. They are both talking, walking, and happy as ever. 

This time last year Elizabeth was learning to walk with a walker and Abigail was taking a few steps all by herself. They have come so far. 

Happy 4th of July!