Preemie Diapers

I just had to share this picture because it demonstrates the size difference between a newborn diaper and a micro preemie diaper. 

 Micro preemie diapers seriously look like small doll diapers. I am not afraid to admit that I honestly didn't even know they made diapers this small before I had the girls. 

I can still remember how amazed I was when I watched the NICU nurses change a diaper for the first time. They moved so quick and they were never afraid to move them around despite how fragile they were. 

I can also remember the first time I changed a diaper. My first diaper was Abigail's. Her nurse that day was Carrie and she was so nice and supportive. I was very terrified to do it the first time. It's a horrible feeling to be afraid to touch your child because you don't want to hurt them.  I had changed babies diapers before, but nothing like that. 

As time went on I became more confident and with practice I wasn't so scared. It wasn't how I imagined my first diaper experience would be, but that's okay. 

Looking at this picture it's hard for me to even believe Abigail and Elizabeth actually wore those little diapers. Looking at this really reminds me how far they have come and it brings back so many memories. 

When people ask me... How small were they? I think I should just show them this picture from now on. It really puts it into prespective. 

Extreme

According to this chart my girls were "extreme." No real surprise there. Everything was extreme. The 145 days in the NICU was extreme. Abigail's time spent on the ventilator was extreme. The amount of times Elizabeth dropped her heart rate, stopped breathing, and then turned blue was extreme. My anxiety level was extreme. I can go on and on here but I won't. 

I would have given my left foot for my girls to have made it to any other section of this chart, but thats just not what happened. 

I remember being jealous of babies that were 30- weekers in the NICU,  but I also know for those parents it is a stressful situation too. 

The truth is having a baby in the NICU is extremely hard no matter what.  Just one day in the NICU is hard. If you are a parent out there with a little one in the NICU keep strong! Just love your baby to the extreme and take it one day at a time. It is a roller coaster with extreme ups and downs, but you can do it. You're stronger than you think. 

Do you know a NICU Hero?

Do you know a NICU Hero? 

Did you ever get a chance to thank that special person?

Hand to Hold and Mead Johnson Nutrition are accepting nominations from April 1 to May 14, 2015, to the Third Annual NICU Heroes Awards. They are inviting parents and caregivers to nominate NICU health care professionals whose compassionate care and dedication helped lessen the emotional toll of a NICU stay and ensured the best outcome for their baby and family. 

There really are so many NICU and bereaved families receive care from neonatal staff who goes above and beyond what is required.

Nominating is easy. Fill out a short form with contact information, your story, hospital name and the name and email of the NICU professional you'd like to nominate. That’s it!  

Nominations will be from April 1 to May 14, 2015 at 5pm CT. All nominees will receive a Certificate of Nomination in recognition of their achievement and a copy of the story you share about the difference they made for your child/ren and family. It's a wonderful way to share your appreciation for their efforts when words hardly seem enough.

A panel of judges, composed of NICU parents and active NICU professionals, will judge the awards and decide on two winners. The two NICU Heroes Award Winners will receive the following:

·  A  a NICU Hero Award certificate and trophy, presented at the winner’s hospital,

·  A $2,500 donation made in their honor to the pediatric healthcare charity of their choice*, and

·  A one-year subscription to the Hand to Hold NICU Resource Library for the winner’s hospital to help educate families new to the NICU

First Blog for Preemie Babies 101

Check out my first blog for Preemie Babies 101 on tips on discharge and bringing home your preemie.

www.preemiebabies101.com 

Elizabeth Did It!

Elizabeth is finally done with her 4 weeks of therapy at KKI. I am going to be honest it was a very long 4 weeks. It was hard on her and very challenging for her. It was also hard on me at times. I hated being away from Abigail. 

Despite everything I believe the therapy was a success. Elizabeth is more aware of her left hand and she moves her left arm more freely.   She is also picking up things with two hands better. She isn't able to grasp anything with that hand yet, but we are moving in the right direction. 

Thanks everyone for your support. We are happy to be all together again.

Abby's Tummy Troubles

Abby has been suffering through very serious constipation. She is on a strict Miralax and Exlax daily schedule and she still continues to have trouble going to the bathroom.

She has had problems since coming home from the NICU. At first her GI doctor thought that it could just be "a preemie thing," but now that she is getting older they has become more concerned. 

Abigail will be getting an Upper GI x-ray with contrast tomorrow and on May 11th she will be getting an Endoscopy, Sigmoidoscopy, and a Colon Biopsy.  I will also be scheduling a MRI for her soon as well.

I just hope that her doctor will be able to figure out what is going on so she can comfortably go to the bathroom and stop getting hernias.

I'll fill everyone in when we know more. I pray it isn't anything serious. 

Learning disabilities that affect preemies

I found this article on the March Of Dimes' Facebook page.

LDs– What they ARE and are NOT

There are many misconceptions about learning disabilities (LDs), which often affect preemies. Here is a quick review of LDs – first, the misconceptions, and then the truth.

LDs are NOT…

• the result of laziness.

• caused by a child’s home environment or cultural factors.

• the same as autism.

• the same as an intellectual disability (formerly called “mental retardation.”) In fact, persons with LDs have average or above average intelligence, and some are gifted!

• all the same. There are various kinds and degrees of LDs (mild to severe) and a child can have more than one kind.

• curable, and a child will NOT outgrow them. But they are treatable and most kids that receive appropriate educational interventions and supports overcome obstacles.

• associated with blindness or deafness.

LDs ARE…

• often unidentified or under-identified. Many students (as much as 15%) struggle in school as a result of having a learning disability that is not diagnosed or treated.

• prevalent.  Almost half (42%) of kids receiving special education services are children with learning disabilities. Roughly 2.4 million children in public schools in the U.S. have been identified as having LDs.

• more common in boys. Two thirds of students identified with LDs are boys.

• treatable. Through appropriate educational programs, kids with LDs are able to learn in school and succeed in life.

• brain based disorders, and often co-exist with attention problems.

• often seen to run in families.

The key to success is…

• getting a diagnosis as early as possible.

• getting help and support in place. “Specific learning disability” is one of the 13 conditions that qualifies a child for special education and related services.  (The other 58% in special ed have the remaining 12 qualifying conditions.)

• providing positive reinforcement so that a child’s self-esteem is not damaged.

• understanding your child’s diagnosis so that you can be an effective advocate for him. Arm yourself with information. See prior posts for general info on LDs, and specific info on dyslexia, dysgraphia and even dyspraxia and CAPD (cousins to LDs).

Source:  Data for this post provided by NCLD’s 2014 publication of “The State of Learning Disabilities: Facts, Trends and Emerging Issues.”