Archive for the 'World Prematurity Day' Category

13
Nov
13

Prematurity Awareness Month

November 17th is World Prematurity Day.

I think it’s important that we share our stories and raise awareness because so many people don’t understand. I’m glad they don’t in a way because it means it’s never touched them or their children, but it can be so heartbreaking to fail to find someone who gets it.

A few things about preemies:

1. Mom didn’t cause the early birth. It really falls under S… happens.

2. The journey doesn’t end at the NICU door upon discharge.

3. These kids are amazing.

And the D report:

I am really thankful for D’s therapists in Early Intervention. There are days where I feel like those sessions are the only ones in which my concerns are listened to and addressed. Special people choose to do this work. I can only imagine the rough days they must have, and they are so upbeat and awesome.

At this point last year, we were becoming very concerned with D’s weight gain. His pediatrician was handing out failure to thrive diagnosis and scheduling him in for weight checks. He lost 4 pounds after his hernia surgery. We just could not get that kid to eat. I wonder now if it had to do with the sedation part of things. I researched other parents forum posts and life after nicu discussions, and it didn’t seem to affect any other kids of various gestation that way.  Then at his 9 month/6.5 adj checkup we got the go ahead to try a few “real” solids at Thanksgiving dinner to see if he just didn’t care for baby food puree. He got one bite of mashed potatoes and gravy and things started looking up. We still have our bad days and weeks, but it’s been getting better. He at least has a few go to food loves that, while not healthy, save my sanity by getting something in him. 

Advertisements
05
Nov
13

Healthy Holidays

It’s that time of year again! I’m thinking of and wishing well all preemie families who have started their lockdowns. It is so necessary and so unfun. You are doing something wonderful for your kid(s) though!

I think the hardest part of our two isolation seasons was the reactions of loved ones who just didn’t understand. Wanting to share our new family with the world and being unable to was rough, and it adds insult to injury when people closest to you treat you like an overprotective crazy person.

Hand to Hold posted an awesome article today about the dangers of RSV and cold and flu for preemie’s immature immune systems and lungs. I posted a sign on our front door, but the free printable they include looks so professional it may keep you from having to endure the “why do I have to wash my hands” talk. 🙂

http://handtohold.org/resources/helpful-articles/5-myths-rsv/

We had a windy, rainy Halloween. Luckily, the weather halted just long enough for the wizard (daddy), lion (mommy), and flying monkey (drake) to walk around to the neighbors.  With two years of being off the grid so to speak, I didn’t really know my neighbors. Halloween taught me just how kind many of them are as they watched at doors and rushed down driveways with candy so that kids could get some trick or treating in and avoid the severe weather.

We had an impromptu pizza and cupcake party at our house with gammy, great granny, a couple friends and us. Then gammy let D stay all night so we could go to a concert. It was an awesome night. Last year, we were changing belly dressings and trying to function on no sleep.

I’ll put some costume pics up soon!

 

28
Oct
13

Candid Thoughts

This is a post about me. I honestly have spent most of the past two years trying not to think about me, or trying to process the fact that many people close to me wish I would just let the past go and move forward.

In some ways, I am 100 trillion times closer to the me I was in 2011. In some ways, I will never be that woman again. I have been working really hard on myself over the past couple months now that my son is in a “more” stable place.

Mental health, identity, my true feelings on things. These are not topics that I easily discuss in person.

1. I have a short fuse. If I get annoyed, the source of my annoyance is usually going to come out in a form of word vomit that despite my southern upbringing is not very ladylike.

2. Someone close to me got into the habit of telling me that I never have anything nice, positive, or loving to say. That wounded me in a way I doubt I will ever be able to express.

3. In addition to worrying over D’s weight, development, and birth, I worry that I am way too attached to him. And way too overprotective for his own good. I’m trying to work on it, but it’s very hard.

4. I am lucky. My son is strong. We have a great therapy and medical team. I have a decent support system. Why can’t I just get over it?

A FB friend recently posted about the night before her son’s birth. She and her husband didn’t sleep, excited over their new son whose birth had just been induced. Will I ever read that kind of update and just feel happy for the people? No NICU parents will ever have that memory.

Last October, I called my mom sobbing because there is so much I feel like I can’t remember of the night/morning Drake was born. She’s an RN and reminded me that some of that is probably shock or denial, but some is that the meds you areon are amnesiacs and it’s not my fault I can’t remember.

My husband is taking a developmental psychology class this semester. The second  chapter was all about genes, birth defects, and preterm deliveries. He aced the quiz, but said it was awful studying it.

I am going to a conference next month that is working with former NICU parents on family centered care practices. I hope feeling like I am giving back deals with some of this residual stuff.

5. We have NICU clinic follow-up and IFSP meetings coming up soon. We are at the cliff’s edge of “catch up by 2”. His Developmental Interventionist has taken to warning me that they will abruptly stop adjusting his age at the state level in February. I honestly just don’t know how I feel about that stuff.

6. I haven’t felt much like posting. I feel too thankful to write ranting posts. I feel this need to feel happy so I don’t really want to write like I did today about what I worry about.

7.  This is our first Halloween. Last year, it was the day after surgery. This year we are flying monkey, lion, and tin man. Let the treating begin!

8. I joined a gym. I completely wrecked my health last year. My blood pressure when I finally had a dizzy episode and went to the urgent care last December was 175/117. I was having panic attacks over hand washing. I’ve lost about 15 pounds with many still to go. As my health gets better, my husband starts talking about his desire for another child. I’m scared to get healthy because of it. As long as I medically “can’t” it’s a tabled discussion, but I want to be healthy and here for my family. I think I should consider adding a counselor to my team.

I don’t want to be disappointed in 10 years that I could’ve gotten healthy and talked to specialists and completed our family as we’d always planned. I don’t want to send another child to the NICU just to fulfill our desire for more children. I don’t know anything about adoption or my feelings or anyone else’s about it.

9. My best advice to NICU parents is get counseling. I wish I had. I wish someone close to me had told me to. Despite this post, I am in a very good place emotionally compared to last year, but I wish I hadn’t had to claw my way to the surface alone to get here.

World Prematurity Day is next month. Wouldn’t it be nice if all babies could have a healthy start?

16
Nov
12

2nd World Prematurity Day, November 17, 2012

Prematurity, talk about it. Be aware. Let’s stop the #1 cause of infant mortality in the world.

Drake is very, very healthy for a 2lb-er, 30 weeker and we are still working through effects of prematurity for him. I have still needed to change my career so I can care for him in the way he needs. In addition, he’s being treated for a birth defect and had surgery at less than a year old.

I want to use our experiences as a family to make a difference.

 

NICU journey in PICS

07
Nov
12

Prematurity Awareness

First, Drake’s surgery went very well. He had no indications of respiratory distress and is recovering well after 1 week. He did seem to lose some weight as it was hard to ramp his feeds back up. He had some mouth swelling due to the hemangioma injection and sounded hoarse from the intubation.

November is prematurity awareness month, culminating in World Prematurity Day on November 17th. I encouage everyone to take this month and learn more about the impact premature birth has on our country and the world.

In the US alone, 1 in 8 babies are born prematurely each year. That’s over half a million preterm infants. The effects of preterm birth are wide ranging from being the leading cause of infant death to developmental issues that continue throughout life.

How can we help reduce the number of babies BORN TOO SOON?

Take the time to review information at the March of Dimes and their research into prematurity and birth defects.

Here are some great resources and preemie parents’ blogs.

March of Dimes – supports research, parent information while a child is in NICU

Kentucky Special Born Too Soon Report – Kentucky has one of the highest rates  of prematurity in the US. I am fortunate enough to live in the Cincinnati metro area with amazing resources like Cincinnati Children’s and Good Samaritan Hospital, but many areas of our state are rural.  Let’s work on 39 weeks Kentucky!

Life with Jack – the journey of a 23 week miracle micropreemie and his family

Ain’t No Roller Coaster – the journey of Owen, a 24 week miracle micropreemie and his family

Hand to Hold – A preemie parent support resource

Life After NICU – A preemie parent support resource

Sincerely,

A Proud Preemie Parent




Drake’s 3rd Birthday

February 20th, 2015

Twitter Updates

Error: Twitter did not respond. Please wait a few minutes and refresh this page.

Advertisements