Maisie’s RSV Story

Before I had young kids, I didn’t even know what RSV was. But thanks to social media, mom groups and articles posted by friends about how serious this virus is, I was informed of the dangers of it. And while I was scared that my infants would get it ( especially since they were both born in the winter) I didn’t really think they would end up with it. After all, I am a worrier, and many times I worry about things that are not very likely to happen.

But when we brought home our two day old newborn daughter, Maisie and our son, Jack who was a week shy of turning one had a nasty cold, the fears set in.

Jack, not feeling well when we came home with Maisie

The next morning, our first full day home, I asked my husband to bring Jack to Urgent Care because his cough was bad and he sounded wheezy to me. It was a Sunday and his pediatricians office was closed, but I couldn’t wait another day. I had to have reassurance that he didn’t have RSV.

Part of me felt that I was overreacting, and that my hormones were just out of whack from just giving birth. After all, I cried a whole lot those couple of days.

I felt a huge sense of relief when my husband called and said that the doctor said it was just an upper respiratory infection ( a cold) and that he also had an ear infection. It was nothing that a week of antibiotics wouldn’t help.

Maisie at 3 days old

Over the next week I caught the nasty cold too. I tried like crazy to pump as much as I could since she wasn’t latching well. I wanted Maisie to get as many antibodies as she could. Toward the end of the week, I felt some relief because I figured if I had already caught it from Jack, then she should have too but she was showing absolutely no symptoms of being sick. She was alert, eating well and seemed perfectly healthy. I was finally able to completely relax, and for the first time didn’t spend hours crying.

By the end of the week though things started to turn around. Saturday she was pretty lethargic, but I contributed it to her just being a newborn. I remembered there being days when Jack was a newborn and he would sleep most of the day, and not eat as much as other days. That night I was holding her and I noticed she seemed to have an apneic episode. She didn’t breath for at least 10 seconds, but then took a giant breath, kind of like she was trying to catch her breath. I googled ” newborn sleep apnea” and read a couple of articles but then convinced myself that I was just being paranoid and that she was fine. That night I put her Snuza breathing monitor on her since her umbilical cord fell off earlier that day. The Snuza monitors breathing rate and an alarm goes off if no movement is detected. It offers me peace of mind, and I slept well for the first time that night since we brought her home from the hospital.

The next morning I was holding her and noticed that her breathing felt a little bit labored. I took a video of her breathing and sent it to my cousin who is a pediatric nurse at Children’s Hospital and has RSV patients often. She said it looked okay, but if it continued or looked even more labored to bring her in. Later that afternoon, Maisie and I took a nap while my husband ran to the store to get groceries for dinner. It was two of our sons birthdays so we let our oldest, Nick who turned 12 chose what he wanted for dinner. Jack turned 1 that day. It was going to be a great day!

When we woke up from our nap, I noticed Maisie felt very warm. I took her temperature and it was 100.8 Fahrenheit. Since it was a Sunday I immediately called the pediatrician on call. He said that we needed to take her to the ER right away.

So we packed up the kids, and dropped the boys off at my sisters house. I was in tears because I was worried about Maisie, but I was also very upset because I was missing Jack’s first birthday. I still hadn’t taken the cute posed pictures I planned to take in his birthday shirt, and we were going to do cake and ice cream that night.

The birthday boys! Nick (12) and Jack (1)

We got to the hospital and after a 20 minute wait, they brought us back into the Pediatric ER. After having her vitals taken, the resident came back and asked us about her symptoms. He then let us know that whenever a baby under 12 weeks has a temperature over 100.4 degrees F, it is standard procedure in all hospitals to run a few tests to rule out different issues and to monitor the baby for at least 48 hours. I looked at my husband and was crushed that we would have to be there overnight. It was hard being away from Jack over night and I hated that I’d have to pick what baby to stay with.

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Waiting in the ER for the doctors to come talk to us

My husband went to pick my stepsons up from my sister to bring them to their mom since we had no clue what time we would be home that night and they had school the next morning.

While he was gone I held Maisie while nurses came in and gave her a catheter to collect urine to check for UTI’s. After that, we went to the X-Ray room so the doctors could get an X-ray of Maisie’s lungs to rule out pneumonia. When we got back they had me sign off on a procedure called a lumbar puncture (LP). Basically, it is a procedure similar to an epidural, where a needle is inserted into the baby’s spine, and spinal fluid is collected to rule out meningitis. They explained to me that I was allowed in the room, but they advise that parents leave because it can be really hard to watch. The baby cries a lot because the medical staff has to put them into an uncomfortable position to keep them still while they preform the procedure. As much as I wanted to stay with her, I decided to wait in the waiting room. They said it would be around 30 minutes and they would come and get me.

I sat in the waiting room and worked on a Facebook post for Nick and Jack’s birthday. Shortly after posting it a nurse came in and got me. I quickly followed behind her into Maisie’s ER triage room, where it looked like a scene from the TV show ER.

The main ER doctor was holding a mask over Maisie’s face, pumping it manually with air telling her to breathe. There was iodine staining her bed from them cleaning her off when they attempted to do the LP, which in my mind was blood. At first, I thought she was bleeding out for some reason. They were calling out medical jargon that I didn’t understand until I heard them say they were going to rush her to be intubated, which I understood. I immediately felt dizzy, and a nurse brought me to a chair because my knees became weak and I thought I was going to pass out. It felt like an out of body experience. I reminded myself to stay calm because she was in the best place for her and I trusted her doctors but I was an absolute mess. I couldn’t stop crying.

Maisie started crying, so I knew she was breathing but monitors were going off. The doctor explained to me that she stopped breathing 4 times during the lumbar puncture attempt and the last time was for too long.

I followed them down into another room where they wheeled her in, hooked her up to even more monitors, and gave her injections of numerous meds. One of the meds was to increase her heartrate up to over 200 beats per minute ( I don’t remember the reasoning for it, but it scared the hell out of me because alarms kept going off because the monitors were set to adult vitals, not pediatric). I counted 14 people in the room catering to her.

A resident and a nurse explained to me (numerous times) what was going on, but I was pretty much sitting there in shock, watching my 9 day old newborn be intubated, I didn’t know what to think. It was absolutely terrifying.

Once I knew she was ok, and I could actually think, I called my husband and told him what happened and that he needed to get to the hospital ASAP.

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Maisie on the ventilator

Test results came in while we were sitting in that room. Maisie had RSV. They swabbed her for it before attempting the lumbar puncture.

Once she was completely stabilized they brought her up to the PICU. The nurses there thought she would just be there a few days, a week at most.

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She was very weak, and her lungs were full of mucus the next few days. She had bronchiolitis caused by the RSV, which can be fatal if not caught in time. She had a feeding tube, and ended up being on the ventilator for a week.

She had descends that were terrifying to see. Sometimes, the alarms would go off because her respiratory and heart rate would drop, and nurses would have to rush into the room. Those moments terrified me. I had a love hate relationship with the monitors. I loved that she was being closely watched, but I became obsessed with looking at her numbers, and freaked when an alarm would go off. I ended up spending days with her, and my husband did overnights so we each would get somewhat of a break.

She was heavily sedated while she was on the ventilator and we obviously couldn’t hold her. When she was weaned from the ventilator she was put on a high flow nasal canula. She was on high flow for a few days. Every time they weaned her, I was nervous, but was also so excited to be a step closer to coming home. Eventually her feeding tube was out and we could bottle feed her. It was so great having her in my arms again! She had to be off of any breathing support for at least 24 hours before being allowed to come home. She did well, but was still breathing pretty fast at times so they kept her an extra day off of any support.

It was rough. She’d have days where things were great, and then days that were not so great. It was like a rollercoaster, which is typical with this virus. Luckily we had amazing nurses, doctors and respiratory therapists to take care of her, as well as us. There were times the nurses and doctors would come up to me and hug me while I was standing there crying. I can’t say enough great things about St. John Moross in Detroit. Their pediatric ER and PICU has some of the most caring, hardworking and knowledgeable healthcare professionals I’ve ever seen.

Maisie’s big brother, Will visiting her her last day in the PICU

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Maisie was in the hospital a total of 12 nights, 13 days,- 12 of those days spent in the PICU.

3 months later we ended up back at the ER for a cat bite for my son. He ended up having the same head ER doctor that Maisie had when she stopped breathing. When I told her who we were, she remembered Maisie and told us that God was definitely with Maisie that day.

Luckily, we were in the hospital when Maisie went apneic. I can’t even imagine how it could have played out otherwise. One of the best days of our life in 2018 – January 6th, when our son was born could have easily been one of the worst days of our lives a year later had we not been in the right place at the right time.

Always trust your mama instincts ( or your dad, grandparent etc. instincts) and if you feel like something may be wrong with your child, get them checked out as soon as possible. In situations like this, seconds can be crucial.

RSV comes across as a common cold to you and I, but it can be deadly to an infant if it is not monitored. It is said that all kids will have RSV by the time they are 2 years old, but the severity of it differs.

There is no cure for RSV since it is a virus. Some kids can handle it just fine and they don’t need any medical help. Some kids can’t fight it as easily and may need help with breathing. Other kids can be severely affected, like Maisie and require machines and medical staff to help them fight it. It just has to run its course.

According to The Mayo Clinic, the symptoms of RSV are as follows:

In adults and older children, mild cold- like symptoms may appear, including:

  • Congested or runny nose
  • Dry cough
  • Low-grade fever
  • Sore throat
  • Mild headache

In severe cases- where infants are at high risk, RSV can move to the lower respirator tract, and cause pneumonia or bronchiolitis ( inflammation of the small airway passages entering the lungs) Symptoms of this include:

  • Fever
  • Severe cough
  • Wheezing
  • Rapid breathing or difficulty breathing
  • Bluish color of the skin due to lack of oxygen
  •  Labored breathing – pulling under the child’s ribs with each breath
  • Flared nostrils

Other symptoms include

  • Short, shallow and rapid breathing
  • Cough
  • Poor feeding
  • Lethargy
  • Irritability

This is one reason why no one should ever kiss a baby. What comes across as a cold to you can be deadly to them.

If you find yourself in the situation we were in, I know how scary it can seem. Some tips I have to help would be:

-Take care of yourself too. I know it can be scary having a baby in the hospital, but try to get as much sleep as you can ( I needed sleep aids) because your baby needs a healthy parent to help take care of them when they are released.

-Ask one person to be your point of contact to help keep your family and friends updated. We just did a group chat with all of our close family and friends, and then used Facebook to update the rest of our family and friends every couple of days.

– Keep a journal to document your baby’s progress. Being at the hospital so long, it can feel like the days run together. It is nice being able to look back to a couple of days prior and see all of the improvements your baby has been making.

-Trust the hospital staff. They see RSV all of the time, and know what to do in different situations. They know what alarm means what, and will be there if your child needs attention.

Maisie at 4 months

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