Archive for the 'Prematurity Awareness' 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. 

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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!

 

29
Apr
13

A Little Cloudy, A Little Wet, A Lot of Fun!

What a great day of fun with family and friends! And how inspiring and healing!

I really wish I had made the time to attend the family team poster event sponsored by our NICU. That display of posters for angel babies and other NICU grad families was probably the single most powerful thing I have witnessed since last February. Such beautiful loving tributes.

Amazing to see so many preemie, NICU, and birth defect affected families coming together for a cause they feel so strongly about.

Plus, I got to stand next to a NFL player!

The best part was of course the great snapshots of our son getting to enjoy a large event for the first time.

Family Team Photo

Family Team Photo

Waiting For Start

Waiting For Start

Ominous Clouds, 4 miles to go

Ominous Clouds, 4 miles to go

Check Point NKY, halfway

Check Point NKY, halfway

Crossing Bridge from NKY back to Cincinnati

Crossing Bridge from NKY back to Cincinnati

Crossing the finish line!

Crossing the finish line!

Good Sam was our NICU hospital

Good Sam was our NICU hospital

# of Premature births in Ohio

# of Premature births in Ohio

Why We Fight

Why We Fight

It was a celebration, and I needed it. We exceeded our team goal by $200!

 

27
Apr
13

March for Babies

Tomorrow we walk. Maybe in the rain, maybe in the sun.

Jodi of Peek-a-Boo ICU says it best, I think, “We fight because babies shouldn’t have to.”

Team Drake-growing baby dragons is going to walk for

Our amazing former 30 weeker, Drake.

For Margaret Elmer, an angel too soon.

For Jaron, born at 32 weeks and Mallory and Annabel born at 33 weeks.

For Baby Branch, born at 29 weeks far from home.

For all our Nicu friends in DAND.

For all congenital birth defect warriors, fighting to get their hearts, feet, or other challenges conquered.

For the preemies and NICU families we know only through their stories Owen, Jack, JP and others.

This walk’s for you!

Much love,
Team Drake

20130427-224400.jpg

20130427-224415.jpg

27
Apr
13

Age is Just A Number

19 minutes ago, my son reached 12 months adjusted age.

Today, we used our Zoo membership we received at Christmas for the first time. It was a gorgeous 65 degree day, and Drake just loved being outside and riding in the stroller.

He especially loved the ducks. He makes a sound we are pretty sure is a quack at them. He also was fascinated by the cows. We just did a 2 hour jaunt. Since we have an annual pass, there’s no reason to try to make him do a whole day and everything at once.

I was a nervous wreck reminding the other adults to wash hands and not let him touch surfaces. All I could think about was the fact that we did our job and kept him isolated that first year, but now what will happen.

And I hate it. I just want to enjoy family outings and milestones. I want to let the fear and horror go. It’s time to try to move on somewhat. I know that it is.

A family member was with us. She pointed out a very, very pregnant lady to me and said, “Look at her. Doesn’t she look miserable and ready to pop? Aren’t you glad you never had to go through that?”

WHAT?

I just said, “No, I would much rather have walked around miserable than go through the NICU and not bringing my baby home right away.”

What I wanted to do was slap her.

I have no way of knowing how uncomfortable the 31st through 40th weeks of pregnancy are. I only made it to 6 months, 2.5 weeks.

But I know what it’s like to lie alone in a hospital bed sobbing because you haven’t touched your child that has a tube down his throat helping him breathe as you listen to babies crying in all the rooms next to yours while you try to pump out trickles of milk that just won’t come.

I can’t be philosophical today. I can’t be thankful that my journey wasn’t as hard as it could have been.

All I can do is cry over the fact that I should be celebrating a 1st birthday, and instead I’m worried about my 17lb 14 month old who is refusing to eat again suddenly.

I could keep ranting, but it definitely won’t make me feel better, and it will make me look like the crazy person some people think I am these days.

After the zoo, we went to the grocery store. The awesomeness of doing this mundane errand as a family was ruined for me by the cashier’s oh he’s cute how old?

14 months..

Really? He seems small.

…sigh

I changed my mind. Can we be on isolation until he’s 18?

 

 

 

 

14
Mar
13

Alone No More

This week I am so thankful for a brave mama in my area who decided to start up a local support group.

I was usually at the NICU during the day, so I didn’t run into many other parents. I definitely had my moments of feeling extremely lost the past year as none of our friends or family had ever had a NICU experience.

That’s something the preemie internet community definitely provides as we share our stories and support each other, but it’s nice to know there’s someone close by that you could invite to coffee if you wanted to.

That’s all I’m going to say about that for now as it’s a small, private group. Anyone in the Cincinnati area is welcome to join who has experienced a NICU stay with their child though so feel free to message me if you’d like to be pointed in that direction.

I had two reminders on facebook today of WHY we have endured RSV isolation for most of his first year. My bout with Influenza A was a scary reminder, too, but these images make my heart stop and are keeping me up tonight.

One was a post on my college band alumni page about a couple who graduated a bit after me that lost their son at only 13 months old after a brief illness. The second was of one of my college roommates full-term infant son with a breathing treatment mask on due to RSV.

So even though the long, cold winter is drawing to a close and spring can be felt in the air. I will not be lazy or forget exactly WHY we are doing what we do. It’s so tempting to go ahead and take him with us on errands, but we have worked so hard to be healthy. He has worked too hard.

And my heart just aches for these families dealing with loss and illness….

18
Feb
13

A New Preemie Family

As I gave advice to my friend on her brother and his wife’s needs over the phone Sunday afternoon, I was taken back to that place where nothing from anyone was a comfort or help.

The scariest moment. When 10 people rushed into a triage room with me, and looked at some monitors and made me get in a fetal position on my left side  and put an oxygen mask on me. Hands down the worst moment of my life. I had just arrived by ambulance 20 minutes prior from our neighborhood hospital that only has a Level II NICU. My husband hadn’t yet been allowed to join me. When I think about that moment one year later, I still get nauseous.

The new preemie mama and daddy that were made today had twin girls at 33+6. The first baby came naturally, but an emergency c-section was needed for the second. Please keep this new NICU family in your prayers. I hope their little ladies are feeder/growers and home soon! And all my best to the mama as she heals.

Ironically, this friend and her husband were our support the night I was admitted. They came to the hospital to support my husband through a night where the slightest movement from me would make baby’s heartbeat coming through the monitor fade away. They are wonderful, beautiful people and I am so sorry prematurity has touched their family almost 1 year to the day after they stayed up all night with us.




Drake’s 3rd Birthday

February 20th, 2015

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