Pierce had his last hoorah this past weekend- My brother and Emily tied the knot. |
Every micorpreemie is different, and each have different recommendations from their doctors on how their parents should handle this dreaded season of sickness. For us, we're dealing with a severe case of Chronic Lung Disease. Pierce has so many factors stacked against him when it comes to the respiratory department- he didn't receive any steroids before birth, he was mechanically ventilated for 2+ months, he required oxygen for over 9 months after that, and to top it off, at his last pulmonology appointment, his chest x-ray showed one of the worst cases of lung disease his doctor had seen in a while. Because of this, the doctors have recommended two years of RSV isolation. We have one down (last year) and now are ready to tackle season 2 head on.
What does the start of this season mean for us? This means no more casual outings, no more church services, no more dinner dates, no more Target runs... ah, the list could go on and on and writing it makes me long for more summer days as I remember all the fun we've had! Just about the only thing that Pierce will be allowed to do now is go to therapy and doctors appointments. It also means the start of the monthly Synagis shot (this shot lowers his chance of contracting RSV).
Of course, this year, Pierce is much stronger and for that we are so thankful. We will probably go outdoors a lot (hoping for another mild winter like last year!) and find activities that we can modify to fit his needs.
Last year, I posted this list of things that helped us survive the long season... I'm sure many of them will be things I can rely on again this year.I'm really looking forward to doing more skype playdates because it allows me to connect with friends from all over the country. (Email me at thepreemiepierce@gmail.com so that we can set up a "play" date!)
Would you please pray for us as we start this scary season? And pray for Pierce's continued health? Pray also for his many other micropreemie friends who are also entering this season. And pray for all of their parents who are forced to deal with the hard task of caring for a medically fragile child.
Many thanks for walking this journey with us,
Lindsay
Want more info on preemie lungs and the dangers of RSV? Visit Life with Jack for this great blog post
lots of prayers coming your way!!! :) love you guys!!!!
ReplyDeleteI'm thinking about you and all the mamas starting this RSV season today! Protecting Pierce is definitely the most important thing, no matter how hard! I will be praying for health and no sickness! -Jessi
ReplyDeleteWe did two years of RSV Isolation, so this year feels weird. I feel very odd just going on with life. Strange. The start of the second year was tough for the reason you stated above; we had gotten used to living in the real world that summer. Fortunately, after initial adjustments, it wasn't bad and totally worth it. The boys were actually able to play outside in the grass. It is where Asher learned to crawl. We spent a lot of time outside. We also would go visit a few good friends who had no children just for a change of scenery. Our computer system is a little crazy (IT husband), so a FaceTime play date would be easier for us. Possibility? :)
ReplyDeleteFacetime would be great!!!
DeleteWe are coming up on this season too! Lots of prayers for Pierce that he stays healthy and strong. Glad you guys are getting the Synagis again this year, I keep hearing that everybody is getting denied! We go to our pediatrician in a few weeks to see what she thinks about the winter for us. Cohen is a chronic lung disease baby too so we'll see what she says....we'll take a Skype date in December or January :)
ReplyDeletehang in there! rsv/cold/flu season make the hairs on the back of my neck stand up....it is seriously one of the major reasons i have not put Ryan in preschool yet.....one thing to deal with older kids around him - there not so inclined to share fingers and toys! :-)
ReplyDeleteTeam Hucks is heading into lockdown too! You've got company. Not literally though. In spirit definitely!
ReplyDeleteLet's skype sometime Heather!
DeleteI just found your blog from Life with Jack. We're in Charlotte too. We just left NICU 2 weeks ago, so RSV Isolation is new to us. Just wanted to say hi!
ReplyDeleteThanks for commenting! Which NICU was your baby at? We are doing a project at both NICUs- www.piercesproject.com. We should have info on an upcoming moms meet up soon!! Hope we can meet.
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