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RSV and Premature Babies

February was a month of disease in our household. We started the month out with a cold, which we passed around between the five of us. There were a few days of rest before we picked up a stomach bug, which we passed around between the five of us before giving it to my poor mother who had come to town to help us unpack (turns out it will lie dormant for a few days before attacking another member of the family-- sorry, Momma!). But then C and O came down with a nasty cold. First came the cough, then the fussiness, then the fevers, then a long weekend where no one--save for the three-year old-- got any sleep. I took them into the pediatrician as soon as they opened Monday morning to receive a diagnosis I was not expecting: Respiratory Syncytial Virus (RSV). Having done a fair amount of research on RSV after the babies were born (thanks to a very well-informed friend of mine), I knew that RSV is a concern for premature infants for the first two years of their life. Our insurance denied our twins the Synagis shot because the criteria has become more strict in recent years (the Synagis rep at our pediatrician confirmed they are at the tail end of the high risk category and a year ago they would be approved for the shot). Perhaps because of their overall health, I just did not stress much about RSV. Yes, ask my family, I am a freak about hand washing and I am known to cancel a play date if there is a cold going around. I buy my hand sanitizer in bulk and my skin is so dry it tends to spontaneously bleed. But, I reasoned, as human beings, we are going to catch RSV at one time or another. And the babies are out of the danger zone (two-months and younger) being ten and a half-, almost eleven-months old, right?

All smiles, even with a nasal cannula
North Carolina February 2012
Our pediatrician told us early Monday morning that, after battling RSV for four days, if they hadn't gone to the Emergency Room yet, we were probably over the "hump." RSV tends to get worse before it gets better. Hoping that the worst was over, we left the pediatrician and hunkered down at home. Watching C crawl wildly around our family room with a 100 point something fever, I glanced over at O to see him laying unresponsive on his Boppy pillow, spiking at a 104.5 fever. Medicine, time, and a cool bath brought the fever up to 104.6, his slight wheeze had become an all-out struggle to breathe, and we were off to the Children's Emergency Room. Because RSV is a virus, there is no magic medicine to take to make it better. Our pediatrician (and every doctor we had during the hospital stay) informed us that all they can do is monitor his breathing, give oxygen and breathing treatments, and suction, suction, suction. Our pediatrician did tell us that taking them to an Emergency Room is better than the pediatrician's office because they have a better deep suction that can relieve the congestion causing the wheeze. One of the hardest parts of the hospital visit was being away from his twin brother, who also had RSV. I fully trust my husband to take care of him and watch him, but there is a comfort in watching your child sleep yourself, seeing yourself that his breathing is under control, and watching the numbers on the thermometer yourself, especially as I watched his brother struggle so hard. My mothering instinct was out in full and I wanted to be everywhere at once, entertaining my restless three-year old, nursing my wheezing infant and comforting the other.

In all, O spent four days and three nights in the PICU. His fevers came down the first night. They started weaning him off oxygen on day three. Because of the stress to his body, he had two seizures on the second day (thank God we were in the PICU already). Due to the seizures, he was hooked up to an EEG for 30 hours and everything came back normal, something to watch, were ruled isolated incidents due to the illness. His twin brother, at home under the watchful care of my husband, was quickly recovering. C's rough day was Sunday. Monday he had a slight fever, under 100.5, but C's hardest symptoms were an ear infection that was being treated and congestion that interrupted his sleep. My two brief trips home for overnight supplies confirmed that he was not only doing great, but also in excellent hands (though on one of the trips I did find the dishwasher open, partially unloaded, and yesterday's dinner sitting in a pot on the stove). Thursday afternoon I felt elated walking out of the PICU, my son snug tight in the sling, head sweetly resting on my shoulder. I was excited to see my husband, to hold the two boys at home, to see my three boys together, and-- let's be honest-- to see my little dog. At the long traffic light outside the hospital I sat holding O's discharge papers, happy to know that he has the all-clear.

Hooked up to the EEG
North Carolina February 2012
 I wrote this blog because a lot of people told me they were surprised that ten and a half-month olds had caught RSV. Most of us have come in contact with RSV at some point in our lives. However, in premature infants, up to the second year of their life, it can be really hard to fight, hence the hand sanitizer decorating every room of our house and our Touchy Tags attached to our strollers politely telling well-meaning strangers not to touch our babies. Sadly, all our hand washing still gave us this mystery case of RSV. Because of the stomach bug, we hadn't left the house much. They definitely had not come in contact with other children. The PICU staff said, more than likely, one of us (my husband, myself, or our three-year old) had caught it during one of our brief excursions. Because we have built immunities against it, it may have given us a sore throat, a drippy nose, or silently passed to our infants without a sign we ever had it. RSV can live on surfaces for 6-8 hours, spreading as someone innocently touches a doorknob or signs their name at the check out.

If you need more information on RSV, ask your pediatrician. Find out if your premature babies are eligible for the Synagis vaccine. The internet is a wealth of information on RSV. Most importantly, inform the people who will be most involved in your infant's life. A friend of mine posted an open letter to her Facebook page--an idea I immediately copied on our family website--at the start of flu season, peak time for RSV. Take your pediatrician's advice on hand washing seriously and make it a priority, even if your family finds your instance a bit odd and repetitive (my sisters tease me over my dry "man hands"). Here is a copy of the letter I posted. Feel free to copy it and make it your own:

Hello, everyone!
I wanted to make a post because it is cold and flu season, peak time for RSV (Respiratory Syncytial Virus). If you are unfamiliar with RSV, it is the leading cause of bronchitis and pneumonia in babies. To read more about RSV in premature babies, check out: http://preemiecare.org/rsv_resourceshtm.htm. C and O were born at thirty-five weeks, five weeks early. Luckily for us, they had great birth weights, but they were early and they are multiples. As we enter in to peak RSV season, they are at the tail end of the high risk category: premature multiples 6-months or younger. (https://www.rsvprotection.com/ and http://rsvtesting.com/Facts/rsv_risks.php) To help lower their risk, we are going to keep making hand washing a priority in our home before handling the babies. These are the guidlines that we have been following and we wanted to share them with you so know what to expect when visiting: http://www.ehow.com/how_4442791_prevent-respiratory-syncytial-virus-premature.html.
1. Limiting exposure to germs (school age children, interaction with the public, sick friends/family, etc)
2. Washing and sanitizing hands
O spent most of the time at the PICU tangled in his wires.
North Carolina February 2012
3. No cigarette smoke: in person, on clothing, or second hand
4. Avoid crowded childcare
5. Toy sanitation
We would appreciate your support when you visit with our attempts to limit their exposure to RSV. We understand they are sturdy, healthy looking boys and need to catch childhood diseases, but we feel it is important to address their specific health needs and make it a priority.
If you come down with a cold before visiting, please tell us before you arrive.
Most importantly, please get your flu shot!
Links on importance of getting flu shots:
http://www.facesofinfluenza.com/en/flu-clinics/
http://coldflu.about.com/od/othercommonillnesses/a/rsv.htm
http://pediatrics.about.com/od/kidsandtheflu/a/05_flu_prep.htm
Thank you!


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