Posts Tagged ‘rsv isolation

20
Aug
15

Back to School

It’s back to school week! So far no new seizures. My little man moved up, literally to the upstairs, to the Preschool 2 class. The big goal for this year is to write his name before moving to pre-K (!) next year.

The first homework assignment this week was to fill out an about me sheet. The first few questions were the typical what is your name, what are your parent’s name. According to Drake, he wants to be a librarian and his favorite foods (that he doesn’t eat) are chicken, hamburgers and bread. I was tasked with filling out the “something special about me” section. For the first two years, I always put something about his prematurity or clubfoot and what he has overcome. This time, I wrote about his love of travel and “cations.” He is so excited to use his passport to go “to PIRATE island” in 8 weeks.

In a way, it feels like a betrayal to how awesome he is to not share that part of his story. Prematurity will always be an important part of his story, and his new teacher has been made aware of his current challenges. However, prematurity is becoming more my story and his dad’s story than his, and I am so relieved.

According to my Facebook “on this day,” 3 years ago we went back into hibernation. Drake had been out of the NICU since late March and we were on RSV isolation from March to late June because it was a bad year with numerous RSV cases. Despite his need for surgery in November, Drake still didn’t qualify for Synagis even with his doctor and us filing a formal appeal. I was lucky. My job agreed to let me work part time and mostly from home, so my husband and I were able to make it work without the loss of my entire income.

RSV isolation, especially over multiple years, is HARD. Hugs to all the families prepping to spend the winter saying “no,” using copious amounts of hand sanitizer, and praying that their child makes it through healthy and at home.

   
    
 

27
Dec
13

Merry Christmas!

We never think we’ll get here . Sure, I know what it feels like to get up 3 times a night to make sure a hernia isn’t strangulated. Or to cook high calorie formula at 3am because I forgot to wash the dishes on schedule. Or just because I feel like making sure he’s breathing.

Tonight, both my fellas are in bed and I’m wide awake because we are going to visit Drake’s preschool tomorrow and sign up for the 2 year old class.

I spent the day today organizing the crazy amount of things Santa and relatives gifted little guy with. A large box of “baby” toys are packed up ready to go in the attic. More because I can’t bear to part with them yet rather than the “just in case” reason the grandmas are hoping for.

Christmas was wonderful. D smiled for Santa, and opened his gifts and demanded, “OPEN, oooopeenn” for each one so he could play. We kept our gifts small and took suggestions from his EI therapists on what would help him most over the next six months.

Those two ladies in Early Intervention have been the biggest blessing and biggest healer of my psyche. It’s hard to believe I was ever worried about that program. Hearing how we are doing the right things has been balm to both mine and Daddy’s souls.

Tomorrow feels like the start to our new year. This is the year of the potty, and the Magical (yeah, right) catch up year of 2. Twenty two months old. He still refuses to eat on occasion. Spends other days begging for cookies or chocolate milk. It’s actually pretty fun to see the looks on people’s faces when I allow him that sip of coffee he’s begging for.

When your 22 month old is just 20 lbs, he gets anything (a taste at least) that he wants and actually asking for it is like winning the Powerball lottery. It was a beautiful holiday, so different from the quiet season in isolation last year. I feel blessed and thankful beyond words.

One moment in particular was very precious to me. When I was 21 weeks pregnant, my husband and I attended our church’s 5 o’clock children’s Christmas Eve service. It was December 2011. They asked for the youngest child to help with placing the baby Jesus in the creche in the Nativity scene on the altar. It brought so many memories of services as a child, being an acolyte,  and my family 800 miles away. I sat through most of the service in tears or filled to bursting with the joy of the thought of my child possibly being the youngest the following December. Instead of the 17-19 weeks I thought I had left, D was born in mid-February about 9 weeks after Christmas. Instead of an Spring baby, I have a Winter one. And Christmas 2012 was spent at home, just the 3 of us.

Christmas 2013, my child finally walked in the procession with me holding him, and put the baby Jesus in the manger to the sounds of O Come All Ye Faithful. It was the first night he said Jesus. It was the first night he sang along matching tone with the piano. Two years of milestones. Two years of fear and joy and wonder and disappointment. Two years of miracles.

Peace to all preemie families out there getting through each day in the NICU, or RSV isolation and beyond. I wish you the joy of the season and hope for your future.

I feel awesome after this week of celebration and rest. I am ready to face the annual follow-ups and IFSP meetings I see on January’s calendar. I’m not feeling quite so ready for the first day of school, but I’m sure we’ll survive and come to enjoy that, too.

Another big Christmas milestone? He actually got to visit AND enjoyed Mall Santa?! 🙂

Santa 2013

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!

 

02
May
13

Spring Adventures

In the three weeks since we’ve had RSV restrictions lifted, we’ve had a sneak peek of the summer adventures ahead.

So glad we could give him the healthy start RSV isolation afforded, but venturing out as a family is pretty awesome. Last night my husband needed to buy a gift for work, and we just picked up and went as a family after dinner. Too fun.

I’m sure the novelty of family outings will fade with time, but I hope we can always remember the joy of getting to venture out together as a trio.

Some of our April Adventures:

At work with Mommy

At work with Mommy

1st Trip to the Zoo

1st Trip to the Zoo

1st swing at the park

1st swing at the park

Discovering "nooks"

Discovering “nooks”

 

I will confess that I used sanitizing wipes on the swing before I’d let Gammy put him in it. Once a preemie mama… 🙂

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….

02
Feb
13

Flu Strikes Back

We followed all the instructions we were given. We got our shots. We avoided large gatherings. We washed, washed, washed and went through gallons of sanitizer, but it still happened.

I started getting worried Thursday night. I had a kind of throat tickle so I pulled out a medical mask and put it on. The next morning, I knew I was sick. I was achy and feverish. When two doses of Tylenol did nothing to break my fever, I called my doctor and then headed to urgent care.

2 hours and a flu test later, Influenza A was my diagnosis. Say what? But, but I did everything right. Apparently, I won the flu lottery.

Now, I’m going to go back to napping and praying that my fellas don’t get it. Daddy did an awesome job cleaning and taking care of things until grandma was able to take D out of this germy house.

Please, please let him stay well.

31
Jan
13

Curing the Winter Blues

I read back over my last few posts and there is a distinct sound in all of them.

A WHINE

I think I’ve reached that stage of RSV isolation where I’m just stir crazy and whining. The lack of sleep recently as we get through our first teething adventures isn’t helping much either.

Luckily, I have a ton of reports to do for my work from home/work from work 1 day a week job to keep me busy.

Drake was born in February smack dab in the middle of a serious RSV season in our area. We ended up being in isolation until mid-June at our pediatrician’s recommendation, so we only had a very brief time out and about until going back into hiding when October hit.

Today, as the wind blows 30mph and it’s 27 degrees outside is a day for summer dreams!

1. Zoo Trips – Gammy gave us a season pass to the Cincinnati Zoo for Christmas. I love our zoo, and CANNOT WAIT for long summer days visiting all the animals.

2. Vacation – We are determined to at least take a mini 3-4 day trip this summer. ROAD TRIP. We’re operating at about half income with my part-time status, but we should be able to make it happen somehow.

3. Swinging – For his first birthday, we got Drake a toddler swing to hang off our swing frame in the back yard. He loved his infant swing and I can’t wait to introduce him to the joys of flying through the air.

4. March for Babies – Late April is kind of hit or miss in our area. I’m hopeful it will be a beautiful spring day and we can participate in our first March for Babies as a family. It takes place a day after the anniversary of our original due date. A poignant reminder.

Happy, Healthy cold/flu/RSV season to all! I hope your summer dreams are just as sweet.

 




Drake’s 3rd Birthday

February 20th, 2015

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