Log in

Mar. 16th, 2012



Hi there!

My name is Laura and my son, Zeke (short for Ezekiel), was born at 25 weeks weighing 1 lb 14 oz. He was 13 in long. He is now 4 months old (3 corrected) and weighs 8 lbs 2 oz. During his 100 day stay in the NICU he received several blood transfusions, had the PDA ligation, has ROP, and has come home on oxygen. That's just the short of it :)

I'm hoping to meet some other moms here who can relate to what we've gone through. I have a healthy older son who is 5 1/2 (in Kindergarten), I'm married and stay at home with my preemie! After being on bed rest in the hospital before my preemie was born I became passionate about being a CNA and am considering taking the training course at my local hospital once my preemie is much older.

Nice to meet you all!

Apr. 2nd, 2011

weemie me



So what does everyone think about the recent Makena uproar?

For those who don't know what I'm talking about, the Cliff's Notes version is that KV Pharmaceuticals was granted the sole rights to produce Makena, the active ingredient of which is P17. This is the compound used in drugs given to women who have had issues with preterm labor in subsequent pregnancies to help prevent the babies from coming early.

Once KV got its hands on it, though, they jacked the price from around $20 a dose to $1500 a dose. Big Pharma, right?

After a huge uproar from many people in the healthcare industry, the government has now said that they will not prevent pharmacists from compounding P17. Many people believe this is in reaction to KV's irresponsible pricing for Makena.

Apparently, KV has now dropped Makena down to around $700 a dose.

Personally, this upsets me because many people in the situation of having had micropreemies would likely have to use P17 to carry another child to term. I know it's certainly the case for me, if my husband and I opt to have another baby.

Anyone else out there been following this?

Jan. 24th, 2011

weemie me


The SSDI/Medicaid saga

So we lost our Medicaid for Colin because of being in between yearly evals (which made him no longer qualify for disability as they were gauging off his initial eval from last February). We are past the given appeal time period but now have a new eval in hand that indicates Colin is 25 percent or more delayed in all areas.

Has anyone gone through this process *after* an appeal period has passed? I'd love some insight into the process if anyone has been there.

Jan. 22nd, 2011

Colin and his buddies


Intro Post - Colin's story

Hello! I hope this community will grow in numbers as word gets out.

I'm Cathy, and my son Colin is a former micropreemie. Colin was born at 22 weeks 2 days gestational age weighing 1 lb. 1 oz. and was 11 1/2 inches. He is now 20 months/16 adjusted and weighs 20 lbs. 11 oz.

Colin spent one week shy of 8 months in the NICU and dealt with a plethora of issues and 5 surgeries throughout his stay. He had his first surgery at 6 days old to place some penrose drains to stave off infection from necrotizing entercolitis. His second surgery was to create an ostomy from the perforated bowel, and he eventually had this reversed at about 6 months/2 months adjusted.

Colin also had laser surgery to correct ROP and had a PDA ligated. And just to top it off, he developed a chylothorax during his stay, which put us even further back on eating. When he came home, he was on a nasal cannula for about 6 months to help with bronchopulmonary dysplasia, but he has been off O2 since June.

Despite all of those issues, Colin is now extremely healthy and is doing better than we ever could have possibly hoped for. Today, he is still delayed more than 25 percent in most areas and has regular physical therapy, occupational therapy and speech therapy. We were very lucky to have avoided IVH, which has helped immensely in his development. Today, he is walking, beginning to talk and is transitioning to table foods.

So that's a bit about Colin. Please feel free to post your own introduction and stories.


Resources Master List

Organizations for Parental Support:

March of Dimes - U.S.
Graham's Foundation
Children's Miracle Network
The Alexis Foundation

Recommended Books For Preemie Parents:

The Preemie Primer by Dr. Jennifer Gunter
The Preemie Parents' Companion by Susan L. Madden
Preemies: The Essential Guide for Parents of Premature Babies by Dana Wechsler Linden, Emma Trenti Paroli, and Mia Wechsler Doron
Parenting Your Premature Baby and Child: The Emotional Journey by Deborah L. Davis and Mara Tesler Stein

Developmental Resources
United Cerebral Palsy
ROPARD: The Association for Retinopathy of Prematurity and Related Diseases

If you know of a helpful resource for micropreemie parents, please feel free to post it in the comments and I will add it to this list.


Welcome to Micropreemies

NOTE: This comm is a work in progress. Please come in a pull up a post while the construction is ongoing.

My hope for this community is to have an LJ-based area where parents of micropreemies can support each other through the various issues related to micropreemie care. Whether it's NICU stays, therapy, eating issues or anything else, micropreemies carry a unique set of needs past the point of the NICU stay and into adulthood.

This is a place for us to offer support to one another.

Please look around, introduce yourself and feel free to add comments with any resources locally, nationally and internationally. I will be creating a master post for any resources that are posted for all members to utilize as a reference.

Thanks for joining in, and I hope you find this to be a supportive atmosphere.
Not quite a micro anymore

March 2012



RSS Atom
Powered by LiveJournal.com