We all have experiences in our lives that change us. Change the way we live and think. Change how we parent or how we spend our time. Lucas getting RSV as newborn was by far the biggest life changer for me. Especially with the surgery he just had and the post op complications, it solidified it for me. Seeing him in a hospital bed and being helpless brought it all back. Some of you remember this story and some of you have never heard it before. But those close to me, who experienced it with us have been forever changed. The following post is directly copy pasted from one year after it happened. The italicized text is my today self interjecting. Please pardon the poor grammar of a rushed documentation.
The last year this subject has weighed heavily on my mind. When I think about it I still get very emotional. Watching the videos is very hard. Now I know that not everyones story ends up like ours, we were very blessed to have our son recover, but that doesn’t make what happened any less scary. As this day approached (Lucas’ First birthday) I found myself pondering the events of the last year and I felt more and more like I needed to share our experience to help educate people about RSV. I pray that you will take our experience to heart this cold and flu season and be proactive about keeping those newborn and young babies we know and love healthy.
Lucas is our third child. Our first two were healthy natural birth, I recovered from delivery well, I breastfed. I am also slightly “granola” so I just kinda do what I want when I want and have never been worried about always washing hands (excessively like after going in public or everytime before I touch the baby, or asking everyone else to before they touch my baby) bringing baby with me shopping, having people over, going to social events. I was NEVER concerned. I seemed to have thought in my head that because nothing happened to the first two that all those paranoid people must be just that. Paranoid. And it was just fine for me to be passing my newborn child around. After all I knew everyone who held him. He was somewhat invincible.
When he was about 4 weeks old (around the third week of november) he developed a cold. No Big Deal right? my other kids got colds and were fine. I watched it, consulted with my Doctor, got the humidifier out. did all the things to help him get through it. Thanksgiving weekend, He started to get better.
My sister had raised some concerns about how when he cried, he would just suddenly stop and “go to sleep.” we brushed it off because he had done it a few times before, our other kids had done it once or twice. it was nothing to be worried about. by Sunday we started getting concerned again because it seemed he was getting worse again.
That night we consulted a Dr. friend of ours. he told me things that i need to look out for with young babies, told me how to identify Respiratory distress, and said to take him to the Pediatrician if he gets worse. Monday i called and they scheduled us for Tuesday morning. we went in and she said his cold had turned into Bronchiolitis- she gave him an albuterol breathing treatment with the nebulizer and sent us home with it. do it every 4 hours. she told us that if i get worried in the middle of the night when it is at its worst (because all sicknesses are worse at night) to go to the hospital. so i set my alarm on my phone and it was like clockwork. every 4 hours i never missed a treatment. by 2am I was very worried. he seemed to me to be in “respiratory distress” i took him in to the Arroyo Grande hospital. they used a bulb syringe to obtain some mucus for a test. then they gave him another treatment. they told me that the RSV test came back negative, and to up his albuterol treatments to every 2hrs, and sent us home.
so if you are anything like me you’ve heard the term “RSV” before but you don’t actually know what it is, how you catch it, can you be vaccinated from it, can you take medication to make it go away? etc. i still at this point did not know what RSV was. no one explained it to me. or even told me what it stands for. assuming all was “well” and there was nothing to “worry” about i did as i was told. set my alarm for every 2hrs. now let me just give you a little play by play. my 2hrs would go like this.
12:30- 1am Nurse
1-2am try and Sleep while your newborn is struggling to breathe through the congestion
2-2:30 am nebulize
you get the idea. it was EXHAUSTING! and worst of all it didn’t seem to be making things any better.
I did that all day Wednesday till Thursday morning. i called the Dr. again because it was getting REALLY bad. there had to be something else they could give us. we went in at 11:30.
i showed them the videos i had taken of Lucas having coughing fits and they decided to do a swab for pertussis (whooping cough) during this nasal swab Lucas started screaming turning red to burgundy to purple and then suddenly “went to sleep” the nurse that was standing there looked at me nervously and said is he ok? has he done that before? i responded “yeah, its ok usually it just takes him a couple seconds to recover.” so we waited. as the seconds drew on i started to rub his chest to try and stimulate something. nothing was working his face had gone from purple to pale white. she ran and got the Dr and a pulse oximeter. his o2 (oxygen) was in the 80s and dropping. they quickly called 911 and grabbed the O2 tank. the ambulance was on its way. his o2 was going up but he was still not “waking up” he was limp. (side note: thank goodness my friend Kelsey was with me and the kids at the appointment. right after this happened i walked to the waiting room tears streaming down my face handed her my van keys and said I’m going to need you to watch my kids for a while we are going to the hospital. )
Matt showed up right as we were getting in, they only had room for one so he followed us in his car. and we were rushed to sierra vista. thanks to the o2 tank in the ambulance his oxygen stayed at 100% the entire drive there. its weird how the rest is just a blur. i remember bits and pieces but not really sure what order it went in. they immediately started running all sorts of tests to figure out what it was that was making Lucas so sick. we had at least 10 people between doctors, nurses, technicians around working on him, trying to get the IV trying to check his heart rate, taking an X-ray, testing for everything, keeping his oxygen up, giving him breathing treatments etc.
everyone kept saying Ya this is RSV. looking back on it, i felt like i was slow motion and everyone that was working on him was sped up. We put our faith and trust in these people, whom we’d never met, that they could do whatever was necessary to keep him alive. at this point he was still unresponsive. he got mad when they did the IV but not much more than that. then all of a sudden we were left alone to wait for the results of all the tests. we asked my brother Joseph to come assist in giving Lucas a blessing. after the blessing i knew that it was in the lords hands. what seemed like hours later the test results were back. it was RSV. and because Lucas seemed to not be responding very well to the treatments the Pediatrician on call decided it would be best to transfer us to Santa Barbara Cottage hospital. to the Pediatric Intensive Care Unit, or PICU. she said that this would be best just in case he need more than what a regular pediatric ward could give him. and man was she right. so we took the ambulance down to cottage. by that time Lucas hadn’t eaten in over 12hrs, he was getting mad.
i wasn’t allowed to hold him while we were going, and they weren’t going to stop to let me nurse so i hand expressed some milk and fed it to him with an IV syringe(into his mouth). once we got there and i followed the bed that had my limp sickly child on it to the PICU. someone FINALLY gave me some information on what this beast of RSV was. I tried to pay attention to the Doctor as a male nurse name Gino had my 5 week old baby in another room and all sorts of alarms were going off. this is basically what the doctor told me.
there is NO magic treatment for RSV, no antibiotics to try, you cant get vaccinated from it. (I have since learned that there is a series of vaccines that are extremely expensive and are only for high risk patients) all you can do is support them while their bodies fight it off on their own. what is different about it than the common cold? the mucus is much thicker. which makes it so difficult for little bodies with little airways and little lungs to clear it out. for older children and adults its just a cold. you would never know it was RSV.
this is what the internet has to say about it.
RSV Respiratory Syncytial Virus
RSV can cause upper respiratory infections (such as colds) and lower respiratory tract infections (such as bronchiolitis and pneumonia). In children younger than 1 year of age, RSV is the most common cause of bronchiolitis, an inflammation of the small airways in the lung, and pneumonia, an infection of the lungs.
Almost all children will have had an RSV infection by their second birthday. When infants and children are exposed to RSV for the first time,
• 25 to 40 out of 100 of them have signs or symptoms of bronchiolitis or pneumonia, and
• 5 to 20 out of 1,000 will require hospitalization. Most children hospitalized for RSV infection are younger than 6 months of age.
Infants and children infected with RSV usually show symptoms within 4 to 6 days of infection. Most will recover in 1 to 2 weeks. However, even after recovery, very young infants and children with weakened immune systems can continue to spread the virus for 1 to 3 weeks.
People of any age can get another RSV infection, but infections later in life are generally less severe. Premature infants, children younger than 2 years of age are at increased risk of severe disease.
In the United States and other areas with similar climates, RSV infections generally occur during fall, winter, and spring.
So if he’s already had it for a week and a half then he thought we should be there for only a few days. the first 24hrs there Lucas didn’t really improve, he wasn’t nursing very much and he was having coughing fits that lasted literally 5 minutes. every DR and nurse told me to be prepared, babies that are working that hard to breathe, and having coughing fits like his, eventually they just stop, their body gives up. It has been working too hard for too long with no sustenance. the Doctor reassured me that he was always just in the other room and within 30 seconds could have him intubated if he needed to. the nurses told me that they had NEVER seen a child in respiratory distress with such extreme “head bobbing”. I’m sure what they were trying to do was comfort me but it really just made me quite nervous.
matt took the time off work and took care of the big kids and my mom came down to Santa Barbara to help me. on Saturday we got a new Doctor and he decided it was time for Lucas to get a feeding tube, and to be treated for pneumonia. from the moment we stepped through those doors he was getting round the clock care. at night he would sleep on mine or my mom’s chest because when he was put down on his back in the bed he would cough or his stats would go crazy. so we traded we took 4 hour shifts at night so that one of us could actually sleep. every other day i would ask the doctors and nurses how much longer they thought we’d be in there and they just kept saying oh just a few more days. this is what we did every day.
rounds, diaper change, call in for breakfast, pump, nasal suction and catheter suction(small tube up his nose down into his throat) to remove mucus, breathing treatment, breastmilk in the feeding tube, swaddle, put him to sleep, eat breakfast, coughing fit, stats check, diaper change, hold him, pump, get dressed, antibiotics, suction, breathing treatment, diaper change, feeding tube, hold him, etc. it started at 7am and slowed down around 9pm. day after day we did this for him/ with him. eventually his respiratory rate started to slow down back to a more normal pace and then another day he didn’t need his feeding tube, then another day his IV came out ( his iv had actually came displaced from the vein and was infiltrating into his arm so they removed it)
he didn’t need it any more. he even started to be more alert and playful, until the last thing was his oxygen. we got transferred to the regular pediatric ward and when i asked that doctor the same question i asked every other person, how much longer will we be here, he gave me the best answer. it has to get boring before you can go home. there wasn’t a million people in our room all day long. just every few hours they would come in and check on him and give him a treatment. then later that day they took off his oxygen to see how he would do. while he was sleeping his oxygen would drop. so they put the oxygen back on. the next day they tried again and decided he was ready to go home. he didn’t need to be in the hospital anymore. they left it up to me. i could go home that night or wait till the next day. and i was so scared. what if something happened?
ultimately we chose to go home. what had started as just a few days turned into a 9 day stay at the PICU. now i wish i could say that he recovered and there are no signs that he ever had RSV but thats not true. since the RSV he’s had pneumonia 3 times. every time someone got a cold he got pneumonia. he has permanent scaring in his lungs.
after the 3rd time we went to a specialist in Santa Barbara who put Lucas on steroids twice a day and singular granuals every night, just to keep him out of the hospital from someones common cold. (We even got him tested for cystic fibrosis) to this day i am so grateful for every single person who took care of us while we were going through this scary ordeal. from the doctors to the nurses to the RT to the X Ray techs to my husband and my mother and my mother in law and my friends and the ambulance drivers. every single person.
So if you have a new baby, or know a new baby. please be paranoid. if you have a cold or your kids have a cold. keep them away from the little babies, or the siblings of the little babies. because this could be that little baby. Trust me when i say that i know its hard to stay home. especially this season of parties and fun and holiday everything. it really isn’t worth it. there is not a day that goes by that i don’t wish i was more careful. i should have stayed home. every morning and every night when i have to hold my baby down while he screams just to give him his inhaler i sincerely wish it were different. Please do your part to keep the little ones healthy this cold and flu season.
Things I’ve learned since this experience.
What to do if your baby gets sick:
Albuterol doesn’t actually help the wheezing and “inflammation” caused by RSV. Mostly because the wheezing is caused by a build up of mucus in the tiny little airways, albuterol does not get rid of mucus, it helps reduce inflammation of the soft tissue.
The best thing I could have done for him would have been suctioning his mucus out every 2-4 hours instead of giving him a breathing treatment. Now that we’ve had 2 more babies since then I have been able to do this for them. So what does that look like? restrain your baby with a swaddle or have someone help you. Put a few drops of Saline solution in each nostril. Use a nose frida and SUCK THE BOOGERS OUT! Repeat for both sides using more saline if needed until the mucus stops coming out. Your baby will be mad. But trust me when I say either you do it or you end up in the hospital and they will do it. You may not need to repeat it every 2-4 hours, just before every feeding at least or additionally if you can hear/see that the mucus is making it hard to breathe. The Doctors also recommend putting a few drops of saline in their nostrils every hour to keep the mucus thin and moving. Babies are nose breathers and it makes life very complicated for them when they get congested. Using a cool mist humidifier helps also. I am quite confident that if I had had this information when Lucas first got sick it would not have gotten so bad.
How to help prevent the spread of sickness.
Wash/ sanitize your hands ALL THE TIME. So after you go into any public place (the grocery store, school, church, the doctors office, the park etc.) If you have older kids have them wash their hands when they come home from school and even change their clothes BEFORE TOUCHING THE BABY. Can you just think about all the people your kids have come in contact with throughout the day (friends, classmates, teachers, the lunch room, passing in the hall). SO MANY PEOPLE!! Ideally you hope people who are contagious wouldn’t be in these public places but often times you are contagious before you even know you are sick. So carry sanitizer and use it. Being the crazy sanitizer person is infinitely better than being the parent of a baby in the hospital with RSV. If you need a reason blame it on me. If someone gives you a hard time show them this.
Get yourself some Lysol spray and Clorox wipes. USE them. Every few days wipe down all knobs, light switches, handles, appliances ect. any high traffic areas. Especially after you have people over. It takes all of 10 min to go around with a pack of wipes and get some piece of mind.
It really is important to limit the number of people who come in contact with your new baby until they are at least a few months old and have a bit of an immune system.
Hopefully you can take some helpful information from this to help us keep those itty bitty babies healthy. If not then at least now you understand why I’m the crazy sanitizer lady.