Posts Tagged ‘rsv

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!

 

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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….

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.

 

28
Dec
12

Christmas and The Dreaded Weight Follow Up

Looming over our Christmas celebration was the dreaded weight check on Wednesday. It was coupled with Grandma’s bout of bronchitis that she came down with two days after keeping Drake for us.

So far no signs of cold or respiratory issues from the little guy, thank God. However, it just really brought home how vulnerable he is even with limited contact. It feels like everyone in our world is sick right now.

Christmas consisted of Mommy and Daddy taking turns poking holes in packages and trying to get him interested. At 10 months, you are apparently only interested in eating the bows. He did perform pretty well for two sets of video conferencing of our families though. We skyped my parents and sister in from Louisiana and we facetimed my husband’s mom and grandmother in (see bronchitis above), so despite preemiehood and RSV lockdown all grandparents got to witness the first ignoring of the gifts for the bows!

Wednesday morning, we woke to the pitter patter of freezing rain and sleet hitting the roof. Luckily, road crews had pre-treated all the main roads so it wasn’t too bad getting him to his pediatrician’s office.

After a short wait in the well child waiting area, we were called back. Side note, as part of my preemie mom issues I always try to get the 8am appointment before other germ infested people have been touching all over the waiting area.  We went through the feeding questions and then came time for the SCALE. I really did hear JAWS music, I swear.

15.5lbs

After a month of extra feedings and new foods, that’s all we get. 12 oz  in 4 weeks. So then we waited for the doctor to bring his growth chart in. 15.5 was definitely not enough to get him back on his 1% track.

His pediatrician decided we should lay off some of the newer foods and resume 26 calorie/ounce formula feedings. My heart sank, and I was flashed back to the NICU and our metabolic scares. I knew he hadn’t gained enough just by looking at him, so it really shouldn’t have been a great shock.

Then came the time for the rest of his physical. His doctor took a much longer time with the stethoscope than normal, so I started thinking oh no respiratory infection.

“Have we ever checked out a murmur?” he asked me.

“Nope, everyone from his Neonatologist to the resident during June Refluxisode to you has heard it, but then not found it again.” I answered.

“Oh, but he has been seen by cardiology?” WTF?

No, he has not. And so with failure to thrive and now a very distinct murmur we have a cardiology referral.

So to keep our fun day after holiday streak going, we have an EKG and Cardiology appointment at Children’s on the 2nd.

Then, I realized I scheduled his 12 month wellness on his birthday. Here son, we can’t have a big party for you because of RSV lockdown oh and HERE ARE THESE AWESOME SHOTS! Best mom ever, right?

C’mon 2013, you can do better than 2012!

 

18
Aug
12

RSV Protection

My son is a 30 weeker born in February. He spent about 4 hours intubated, 3 days on CPAP, and 2 weeks on nasal cannula. We received one Synagis shot when it was time to come home in late March.  His pediatrician helped us file an appeal to try to get him an April and May shot because our area had a late season. We were denied again anyway, so we stayed on lockdown until mid-June.

How to handle the upcoming cold and flu season has been on my mind a lot lately. I’ve been reading stories of other preemie families around the same birth age as my son. I want to have all my questions ready to ask at his 6 month wellness visit this week.

I think I have our plan mapped out. I know my husband will support me. I’m working on a letter for family and friends because I know there will be some resistance there. In the end, I will do what I feel is best for my son. I feel like this fall is especially important because he will be having surgery requiring anesthesia in November.

http://www.absolutetotalcare.com/files/2011/12/Synagis-2011-2012-Authorization-Guidelines_2011-07-28.pdf

Drake just barely misses the cutoff for round 2.

Good luck to all preemie families trying to keep their babies safe from this disease!

 

 

 

 

 

01
May
12

Weeping Shall Endure

Yesterday, I received a letter from our insurance company denying coverage for Drake’s next Synagis shot. The reasoning given was that the season ends in March and giving the shot outside of the season shows no benefit. However, I can go to the RSV tracking system on the cdc site, and see that while cases are declining our region is still not done with it due to a late onset.

http://www.cdc.gov/surveillance/nrevss/rsv/state.html

The secondary reason was that as a preemie of 29 to 30 weeks gestation, he doesn’t really need it anyway. Excuse me? So now, I’m waiting for the pediatrician’s office to call me back. They have a special person on staff to deal with appeals like this.

The whole thing came after a night of nonstop crying due to gas and reflux. So I was exhausted anyway, and I just lost it. I was washing and sanitizing bottles and having a nervous crying fit. All that runs through my head is the pictures of infants who have had it I’ve seen on the literature for Synagis and RSV.

I don’t think I have the strength to endure another NICU stay for Drake. And you’d think the stupid insurance company after spending half a million or more dollars on his first stay would want to pay a paltry $1k to keep him from going back.

One thing that got me through his first stay and going every day to the hospital and leaving alone was a mural at Good Sam. When you come into the hospital on the 5th floor from the parking garage and make the right to take the elevators to the 9th, there’s a mural. It’s done in bright yellows and blues and it has that verse. Weeping shall endure for a night, but JOY will come in the morning.

And I have to keep telling myself that every day.




Drake’s 3rd Birthday

February 20th, 2015

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