Archive for the 'Preemie' Category

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!

 

Advertisements
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.

26
Jul
13

Exciting Times

I love the point we have reached. We’ve received our six month EI plan. August appointments have been set for therapy and other follow ups.

It feels good to know what we have been working on well and what could be adjusted.

It is hard to deal with those who assume we weren’t doing things right when there really is no right or wrong with developmental delays.

We can’t answer when he’ll be “fine” or “caught up” whatever that means anyway. But the three of us and our therapy/medical team are doing our best. And we’re going to enjoy learning together.

22
Jul
13

17 Months Old Adventure

Saturday D turned 17 months actual, so we woke up early and had a morning zoo adventure. It was the first time we managed to make it to the zoo right at opening. We scored a premium covered spot in the main lot.

We have a zoo membership so we skipped the ticket line and headed for the map to see what we’d like to do for a few hours. We decided on the Insect House, Carousel, and Manatee Springs as our main attractions.

The Insect House adventure started out with a scale that gives your weight in bugs! Wouldn’t that make a fun change from NICU stays measured in grams?

Drake was 2 million bugs.

Daddy was 32 million bugs.

Mommy was 20 million bugs.

We took our first family ride on the carousel. The elephant was a bit too big, but the zebra was just right!

I didn’t take any pictures in Manatee Springs. I was too fascinated by the zookeeper presentation. Confession, I ADORE going to the zoo. 🙂

Cincinnati Zoo is one of only two zoos outside of Florida that host manatees. They are a manatee rehabilitation center which means their manatees stay for a short time to get well and get reintroduced to the wild. Betsy and Woodstock are scheduled to leave sometime this fall. Manatees have small eyes and live in water that is hard to see in, so they have tons of hairs like cat whiskers all over their bodies that help them navigate in the ocean. Yay fun facts!

After the manatees, it was time to head for lunch. I have to say the nursing/family suite at the Cincinnati Zoo is also an amazing space. It’s air conditioned has comfy sofas, a great changing space, and toys for toddlers. We made a side stop for a diaper change before heading to the car. As we left, we noted the LOOOONGG lines that we avoided by going early.

We finished up with some lunch at Izzy’s Deli, and shopping at Tuesday Morning where we scored this fun plaything…

This afternoon is our first PT visit. Time to get to work! It’s hard to believe he’ll be 2 in 7 months, and then we stop adjusting for prematurity.

20130722-215643.jpg

20130722-215716.jpg

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.

15
Jul
13

Getting Started with EI: Routines

Our second in-home Early Intervention visit was this past Friday. They sent a prep sheet about our daily and weekly family routines.

I was curious about this meeting. Our family routines are the heartbeat of our daily/weekly/monthly life.

I wasn’t expecting how I’d feel at the end of our hour long interview. Drained.

Being asked to rate how your child’s medical conditions/behavior/gross motor & fine motor skills affect your daily life really starts to bring out the little issues. The ones you ignore day to day because you’re the mom and you would go to hell and back for that mini human.

The questions about my me time and when I get stuff done also caught me off-guard.

The one that kept me up Friday night was “What are your concerns for your child that worry you the most? What keeps you up at night?” Are you really sure you want to open that bag of worms, lady? I’m awesome at worrying something to bits. 🙂

I’m very happy with 9 preliminary “goals” that came out of the meeting. I think it will do a TON for D’s quality of life to start working on these things.

I learned how hard it really is to think that your care/teaching isn’t enough for your child. You would think that lesson would have been made abundantly clear to me in NICU days. I am by no means a “kid” expert. I didn’t babysit. My youngest sister is only 4.5 years younger. My only kid experience was being one. I really appreciated our coordinator taking the time to point out that I was doing great with him and his needing additional therapy was no reflection on my teaching/guiding abilities as a parent.

I’m still a little sad that this is all necessary for him, but I am hopeful that I will enjoy this team and our work together for D’s well being as much as I enjoy working with his NICU follow up and medical team.

Initial recommendation is PT twice a month and Speech/Feeding once a week for the next six months, and then a follow up evaluation to see how things are progressing. We also received a list of where he’s at with various development and some goals and exercises to work on ourselves.

Our next meeting is scheduled for the end of this week and it will be the “goal setting” meeting.

 

 

 




Drake’s 3rd Birthday

February 20th, 2015

Twitter Updates

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

Advertisements