Archive for the 'RSV' 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!

 

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… 🙂

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?

 

 

 

 

06
Apr
13

Spring Freedom

APRIL IS HERE!

I know all caps is a no-no, but the end of RSV isolation deserves some caps. We are supposed to keep him away from crowded with kids places a bit longer, but it is so nice to be venturing out as a family!

Last year, RSV season started late, so we were on lockdown after coming home from the NICU until mid-June. We are so thankful to have managed to keep our son healthy and hopefully give him a good start.

There were times it felt like this winter would never end. I can’t wait for the walk in the park and the swinging on his birthday swing that should happen in this weekend’s 60ish weather!

WE DID IT! YAY SPRING!

02
Apr
13

The Posts I Didn’t Write

It’s been a busy few weeks. I thought I would want to write a big, emotional post for the anniversary of Drake’s NICU graduation, 3/24, but it was a Sunday and we just took a walk and baked and decorated cookies. It felt like such a NORMAL, family hanging out day. The kind of day that makes last February feel so far away.

I did make a picture collage from go home day to now at 13 months. What a wonder to see how much he’s grown.

gradiversary collage

Two memories really stick with me from that day. We decided we didn’t want to be separated so the three of us left by way of the parking garage elevator. The same route his father and I had taken every day when leaving Drake behind. I avoided the lobby like the plague. Being wheeled out by my mom on my discharge day next to the lady with the newborn in her arms was still too fresh. The second memory was of the 30 minute drive home. He looked so miserable and tiny in that car seat. He kept his eyes shut the whole way, and I rode in the back with my finger a few inches below his nose once in a while to check his breathing.

Unlike his birthday, that was a day of joy. We all definitely felt the difference in the celebration of the anniversary.

Then last week was our 1 year clubfoot check up. We all got to wear lead aprons and do stand up x-rays at Children’s. They looked AMAZING! You could tell no difference in the structure of his left foot from his right. Yay Drake, Yay Cincy Children’s Orthopedics, Yay PONSETI, and Yay Mom & Dad for strict bracing protocol! We got the verdict that right now we only need to do 12 hours a night, and it should end at 4 years old. We are 25% done with treatment!

Easter was a bittersweet day. We so wanted it to be the day of his baptism, and that wasn’t going to happen due to RSV isolation. Then our church was going to have an outdoor 8am service that we were going to brave, but it was cold and rainy so they couldn’t have it. Mom and Dad were very disappointed. Drake loved his THREE Easter baskets, and didn’t know the difference. What a difference from last year when he was smaller than his bunny!

Will I always have those moments that make my stomach roll over? A family friend asked if we would consider more children. I said a quiet, “I prefer not to answer right now.” Unfortunately, someone overheard and it went to a situation I’d hoped to avoid. What no one knows is I’m actually on blood pressure meds that don’t even allow us to consider it right now. I have to take care of me, first. Not to mention it’s not a discussion for a family/friend Easter dinner. Sigh.

We are so blessed, and despite some bumps on the road we are so very, very lucky. Right now though, I’m not sure I’d want to consider another child who could have very, very different outcomes. Even if I could which is another whole emotional/health thing to work through.

Winter though, can go and take the yucky germs. We’re ready to play tug-of-war with his baseball allegiance (My Cubs vs. His Reds) and go to the Zoo!

Follow ups are coming in May and June for feeding, wellness, and NICU developmental clinic.

 

 

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….

06
Feb
13

Reunited

5 days and a round of Tamiflu later, I finally was reunited with my boy. I’m keeping him out of my face, and wearing a facemask  Being even stricter than usual about hand washing. It’s amazing I have skin left on my hands.

I’d also like to throw out a general appreciation for antiviral facemasks from Curad. BEST INVENTION EVER.

So far both Drake and his daddy have stayed healthy.

THANK YOU, GOD.

 




Drake’s 3rd Birthday

February 20th, 2015

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