Wednesday, January 18, 2012

Preemie Lungs (also another good reason to cancel)

This morning, I checked my phone and there was a text message from a friend saying she had to cancel a play date. One of her little ones has a runny nose and cough. Once the initial disappointment subsided (I mean, who likes to look forward to seeing someone, only to have it canceled?), I was quite thankful. Really.

Here's why:

Sorry for the small size, but it's the best illustration I could find. The top picture shows a rendition of the difference between preemie lungs and full term developed lungs. The second picture shows just how tiny preemie airways are. This is why I'm thankful when friends cancel. The difference between a preemie getting a cold and a typically developing child is obviously very different.

RSV is a scary word in preemieland. For a typically developing child, contracting RSV may result in a minor cold, although many end up needing medical help. For a preemie, things can get much, much worse, including possible death. That is why many preemies get the outrageously expensive monthly Synagis shot. This is Jack's first RSV season without it. He got Synagis the first two seasons while he was in RSV Isolation. Despite the nerves from not having that extra barrier of protection, we feel much more confident in his lung development now that he is almost 3 years old. Still, we try not to knowingly go into situations where colds are present.

Some other factors to consider in lung development: I was not able to receive steroids to boost Jack's lung development prior to his birth. Many are able to hold off delivery in order to get these life-saving steroids. If you were able to receive steroids, that is so, so good! That, added to Jack's birth at 23 weeks, his dependency on the ventilator for so long,  and his O2 dependency until 10 months of age, gives Jack his Chronic Lung Disease diagnosis. Jack has a Flovent inhaler (same drug as many with asthma take) and a standing nebulizer  prescription that we've (thankfully) never had to use.

All this to say, I am thankful when friends cancel. It shows they care about Jack's health and are thinking of what's best. I once arrived to a dinner party where the host knew I would have Jack with me. This was during summer when we weren't in isolation. I walked in the door, sat Jack down, and after a few minutes was told that the host's child, another kid in the room, had "a really, really bad summer cold". Yes, RSV is present during summer and I immediately heard him hacking away. Needless to say, I booked it out of there ASAP and was really mad. The good news is that this was the only instance where I've had to leave something because someone was sick. Normally, people alert me ahead of time. It's best to be prepared in all situations though and the main word that comes to mind is flexible - you just have to be flexible. Yes, I had a slight pity party after that one instance, but it was for the best. You have to do what it takes to keep your kid healthy, right?

Many of you are in RSV isolation now and I think of you often. I just want you to know that there is an end in sight. Really, there is. If you didn't get the chance, make sure to read my 10 Ways to Make it through RSV Season. I hope that it's helpful in some small way. January, February, and March can be very rough months, so I definitely feel for you all. I've been there, and now can see if from the other side.

One day, you will, too.

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Nik, Lindsay and Pierce Franks said...

Thanks for sharing this! I too, am so blessed to have great friends who take into consideration P's preemie lungs and don't chance anything. Although I've also already had my fair share of those who don't quite understand the consequences and complications that come with preemie lungs. Thanks for the graphic... great illustration for people to see!

cassie said...

Thank you so much for sharing this, it was very insightful. We had twins that were born at 35 weeks nothing like a micro preemie, and we really hadn't experienced any noticeable lung issues until Monday when our little guy had surgery and had several desats during surgery because of his weak lungs. This was very helpful. I love reading your blog. Thanks for writing.

Angie said...

One of the triplets just got hospitalized for rsv, thankfully it was a mild case but still scary. I couldnt believe we were in a hospital again. Having a 5 year old in Kinder sure does complicate things!

Jessi said...

Angie - there are just some things you can't control and that's certainly one of them. Once you have kids that are school age, things change.

Mandy Gramkow said...

Thanks again for sharing perspective in words to help our friends and family truly understand. And I shared yet another one of your posts on facebook! :)

Mama to Ellie (27 6/7 days) and Beckett (25 weeks)...who is now 1 week adjusted! Wahoo! Going in for our second synagis on Friday. However I've been on the phone many times with the insurance, specialty pharmacy and pulmonologist since last Friday!

Mandy Gramkow said...
This comment has been removed by the author.
Aidan and Evanna said...

Thanks Jessi for the info and advice, very useful!

Lindsay said...

My daughter was a 35 weeker and got RSV when she was 6 months old. Luckily she only had a day and a half in the hospital (over our first Valentine's Day with her). She still gets lots of colds and allergies. We sometimes have to give her some breathing treatments if she sounds weezy.

Single Mom BB said...

My 25 weeker is about to come home from NICU soon (5 months old now) and I know we are going straight into isolation. I'm trying to understand it and figure out how to explain it to others. Your posts are so helpful.

Recently a neighbor said to me that she couldn't believe we'd have to isolate until Spring. I told her "at least we will be HOME".

I've been finding your blog a tremendous resource. Thank you again!

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