Well, for those of you who have had preemies, you know this time of year well -- RSV season. For those of you who are not familiar with RSV, Eric and I compiled an e-mail explaining a little about the illness and what we are going to have to do for the remainder of RSV season. (Reports we've read vary, but most agree end of October through April is "RSV season")
RSV, also known as respiratory syncytial virus, is defined as "the most common cause of bronchiolitis and pneumonia among infants and children under 1 year of age. Illness begins most frequently with fever, runny nose, cough and sometimes wheezing. During their first RSV infection, between 25 and 40 percent of infants and young children have signs or symptoms of bronchiolitis or pneumonia" and some require hospitalization.
Why are we telling you this, you may wonder? Well, the fact of the matter is that Lily and Eve were born premature and both suffered Respiratory Distress Syndrome at birth, and Eve's compounded into Broncho Pulmonary Dysplasia, or chronic lung disease.
According to the Preemie Care organization, RSV is particularly serious in infants born prematurely, children under the age of two suffering from chronic lung conditions and is a higher risk in multiple birth families -- if one baby gets it, chances are the other will as well. While virtually all children are infected with RSV by the age of two, preemies are at an elevated risk of severe RSV and each year up to 125,000 children are hospitalized. Some do die.
Lily and Eve have already spent far too much of their lives in the hospital NICU and Eric and I both agree, along with our pediatrician, that the risk to them during RSV season far outweighs the need for attending family get togethers, going to the supermarket as a family and frequent visitors. As hard as it is for us to make the decision, we think it best for the girls that we effectively "quarantine" them for the months of late October through April. Before anyone gasps and labels us overprotective first-time parents, please see this from our point of view: we watched our babies on ventilators, unable to breathe on their own, for the first week of their lives. We watched both of them turn grey from lack of oxygen at times and saw and heard the monitors alarming as these episodes happened. No parent wants to see such a thing, and if we can prevent it from happening again, we want to do just that.
We have come to the decision that we will not be attending any get-togethers during the aforementioned months. We're afraid that includes dinners at Grandma and Grandpa M's house, as much as we liked attending them and found great joy in everyone's obvious love of the girls. Unfortunately, Thanksgiving falls into the beginning of peak RSV season and because of the number of guests that attend, and the number of children we have in our big, happy family, Lily and Eve will be unable to come to Thanksgiving dinner. We will also have to bow out of Christmas at whoseever house it is this year. We can do our small family Christmas with Grandma and Grandpa, Aunt Jessica and Uncle Sean, but that will have the be the extent of our Christmas outings. The same goes for Grandma and Poppie K. Large get togethers will have to be put on the back burner for the girls' health.
Please don't see this as an excuse or a way to avoid seeing you all. We know that you all love Lily and Eve, and enjoy seeing them. But we ask that you respect our wishes and don't ask us to bring them to family functions. It is hard for us to do this, we also love showing the girls off. We will not be taking them to the store, we will be asking to wait in an exam room at any and all doctor visits they have to go to during RSV season, and anyone who comes to the house will be immediately set upon by neurotic mommy and daddy with the hand soap and hand sanitizer. Any smokers will be asked to refrain from holding the babies unless they are wearing a shirt that has never been worn while they smoked. Holding, in itself, will be limited as well when there is a group of people together. We don't do this to exclude anyone from getting to be with the girls -- we do this for their good. Unless you have had a child in NICU for weeks on end you cannot understand what it is like. It's nothing like having a baby in newborn nursery, who comes home with you at or about when you leave the hospital.
So, for the months of late October through April, Lily and Eve will become intimately acquianted with the inside of their house and nothing more. Hopefully, we'll be in the "all clear" next RSV season, though we will likely employ Nazi handwashing and sanitizing for a few seasons to come. For those we do invite to our house, we ask a few simple things:
1- If you are sick, have been around a sick person, even feel remotely near to becoming sick -- please refrain from visiting. As much as you might want to see the children, they are going to be a part of our famly for a very long time and not seeing them for a week or two will not kill you. But if they come down with severe RSV; it COULD kill THEM.
2- If you aren't sick and we do invite you in, please make the sink your first port of call. We will have antibacterial soap and hand sanitizer right there for your use. We ask that you wash your hands for at least one minute, or as some people say, the time it takes to sing the "alphabet song." Silly, I know, but it takes a certain period of time before washing effectively removes the layer of bacteria on your hands.
3- Smokers in the family, we ask that you bring a clean, unwore-while-you-smoked shirt for use if you plan to hold the babies. If you don't, we'll have to ask you not to hold them during your visit. (Yes, that goes out specially to Grandma and Poppie K..., sorry guys!)
4- If you have children, of any age, please refrain from visiting during RSV season. This is a hard one for us, as so many of you DO have children. Children, unfortunately, attract germs like horses attract flies, pardon the metaphor. School-age children and those in day-care settings are perfect germ-carriers and since RSV usually spreads in the early stages of the virus, it is often passed before real symptoms attack. If you have come into CONTACT with children recently, and they have just been, are, or are getting sick, please refrain from visiting us. You can be carrying what ailed them and not even know it yet.
Perhaps the most important thing any of you can do for us is not take offense at this and respect our wishes. We know that family and friends enjoy getting together and eating and laughing together. We want Lily and Eve to be able to do that for many years to come, and if it means them missing out on this year's festivities, so be it. In the long run, this is the safest combatant against RSV and the flu.
Thank you for taking the time to read this and we hope you have a wonderful fall, holiday season and early spring. We'll see you on the "other side" -- we promise!
(*Mom and Dad run and hide from the masses of disbelieving relatives...saying, "But, but...no babies for THAT long?"*)
Love,
Eric, Kate, Lily and Eve
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2 comments:
RSV. I remember that all to well, 10 years ago when my son was born pre mature, we never even heard of RSV.
One morning I woke up an found him blue in his crib. He stayed in the hospital for 5 days after we were told it was RSV.
It was the scariest moment of my life, breathing into his mouth trying to keep him alive, his body limp.
Thank you for letting people know about this, it truly is important.
Jillian
Jillian, thank you for responding. I'm sorry your family had to go through that and I'm glad that your son fought it off. Stories like yours are exactly why we are going to this extreme with the girls and if we can hit the point home for just ONE other family, it is worth it!
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