Posts Tagged ‘preemie

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!

 

11
Oct
13

Meeting Family

D and I are visiting family in Louisiana and Texas this week.

It feels so weird to travel on the cusp of RSV season. This time last year we had already been in strict isolation for a month because he wasn’t gaining weight and hernia surgery was looming.

Yesterday, D got to meet his only first cousin. She’s 4, and they are both only children. They played together very well despite the age difference.

It’s really hard for me to live so far away. I’ve always been close to my parents, sister & brother. Then we grew up in a small town so there are other folks I miss tons as well.

In addition to the emotional cousin meet, we had to go through some things of my granny’s. Another reminder of NICU days. She passed away 2 weeks before D was born.

20131011-015012.jpg

01
Oct
13

Battling for Medical Procedures

I really respect our PT from Early Intervention. Drake has made huge strides and we have lots to work on, but he soaks it up like a sponge. 

Yesterday, he was tired so he kept bringing her books to read and climbing into her lap. We still made a little headway on stairs. 

We have been having a lot of trouble with him favoring his right hand for doing fine motor activities over his left hand. Apparently toddlers usually don’t choose this early. I just assumed prior to EI that it was normal preference for a stronger side. 

His physical therapist strongly suggests we try to get approval for an MRI pushed through to check things out. D only had one head ultrasound in the NICU, and she’s concerned that if anything happened to cause the generalized weakness on his left side it was missed. 

Apparently trying to get approval for an MRI for a 19/16.5 month adjusted kid is a big deal because they have to put them under general anesthesia for it. So it’s advocating time again. I’m going to try his pediatrician first, and then I’ll move to the NICU follow-up clinic Neonatologist if I don’t get anywhere with him.

To be perfectly honest, I hate the idea of him going under again, too. It took us weeks to get him back to eating properly after his hernia surgery when it sounds like most kids aren’t phased by it at all. 

I guess I’m wondering if other preemie families have had later diagnostics MRI’s done? Were you glad you did? Did it make a difference in the treatment/therapy avenues you pursued? This is my new “research paper” stuff I’m obsessing over. 

In other news, we are not on isolation this winter. It scares me, and we plan to be cautious but he’s had no respiratory issues and his medical team thinks it’s time. 

15
Sep
13

Happy Neonatal Nurses Day

This is a day late because Drake has his first bad cold and I did not have time to finish.

My mama is a Registered Nurse. I always knew her job was special, but I never truly understood the value of nursing until I witnessed it from the NICU.

Our nurses held and rocked and fed my baby boy when I left each night. They supported me when no breast milk came, and they made sure D got donor milk as long as he could.

They made scrapbook pages and graduation certificates. They gave the first bath and taught me how.

They made me sit that first week before I could hold him even though I wanted to push.

Thank you for your expert care and kindness.

28
Aug
13

Breaking the Weight Barrier

Yay! We had a well visit and he weighed over TWENTY POUNDS!!! (20.8), BMI 15.5, and managed to stay on his curve within the bottom 1% for his age.

Since he’s looking good, and growing well we get to try coming off high calorie infant formula and just add some other types of high calorie liquids to his diet along with his food. I am so excited. We said goodbye to bottles about two months ago, and now we get to say goodbye to formula.

I know that it probably seems like a weird milestone to be so excited over. His high calorie formula and weight gain have been at the center of all my worries and fears since he was born. I feel like a very large scary elephant has finally started to lumber out of his corner of the room.

Sterilizing gallons of water and zillions bottle parts. Giving myself second degree burns leaning over a steam bottle sterilizer at 2am. Feeling like we should buy stock in Neosure. Going to cardiology. Having metabolic tests run and then run again. Weight checks.

Done, Done, Done!

For anyone out there still struggling through failure to thrive, or failure to gain, or any other preemie-ness things, I am praying for you and thinking of you, Moms and Dads. I hope you get some unexpected milestones to celebrate, too.

We celebrated last night by taking a picnic dinner to the city skate park and watching the bigger boys do flips and turns. He was ready to push his little umbrella stroller out and join them on the course.

18
Jul
13

THE Look

Pet Peeve, time.

We can’t go ANYWHERE lately without being asked how old D is. Then it’s followed by that incredulous look and sometimes with a spoken, “Really?

Ouch. Right in the preemie mama feels.

I was there for his birth if a bit groggy from the no sleep and meds to stop labor. I think I KNOW how old my child is. I have to count every calorie that goes into his mouth, and I still know what his exact weight is.

I usually offer a “he was early” and move on.

I do know someday in the not-too-distant future he’ll start to answer for himself. “I’m this many.”

Will he be questioned, too?

Saturday is 17 months day. We’re going to go to Big Bone Lick State Park and see the fossils and baby bison.

Friday is goal setting day. I’m looking forward to having a more formal plan to guide us for the next 6 months.




Drake’s 3rd Birthday

February 20th, 2015

Twitter Updates

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

Advertisements