Our experience with RSV and our premature baby

When we were leaving the NICU in August 2017 we were warned about RSV season coming up.  We were told to take precautions like not going to crowded places, washing our hands, and not letting people hold or touch are baby who really didn’t need to.

We took these precautions and isolated ourselves from much of the world around us.  When the season hit, it hit hard.  My mom and my father-in-law both got RSV and Finn’s 100 cousins (exaggerating a bit) were all sniffles and colds. We stayed away as much as possible, but my older son James, who was two at the time, was missing out on a lot. 

We didn’t want him to miss Christmas, so we all went to the family gathering and I wore Finn the whole time thinking it was enough protection, but in my heart knowing I was wrong. Well, kids were sick there and two days later, so was James.  We tried to have the boys not share anything, and I even kept Finn in our bedroom and played there with him while James and my husband, Will, played in the living room, but eventually Finn caught it too.

At first it was like any child’s cold with a runny nose and congestion, but then my mom heart knew, it was getting bad.  I took him to the pediatrician and was advised to take him to the hospital to be monitored.  This was hard.

They would suction his nose and throat every few hours.  He was given an adult size cannula for oxygen that didn’t fit and agitated him. I held it just below his nose for hours so he could get the air without hurting his nose while they looked for a smaller one.  We got a nurse we had previously in the NICU who I found hard and abrasive with Finn and me, and I wanted to be anywhere but where we were.

Our pediatrician came to visit and recommended we stay the night.  I didn’t want to. This place was everything I hated and I was already feeling mistreated by the staff, but I asked him if it was his son what he would do and he said he would stay, so we stayed.  The next day our new (and gentler) nurse came and suggested we move to a bigger hospital with a PICU as they had limited resources where we were.  I honestly jumped at the idea just to get out of that hospital that held so many bad memories.

Finn was transported by ambulance and when the paramedics came to get him they were surprised that he had not been given standard treatments for RSV like the drug albuterol.  They gave it to him on the ride to the PICU and he was like a new baby when we got there.

We were there a couple days, and he seemed to be doing well so they transferred us to the general pediatrics floor. There we shared a room with another baby whose family was never there and the baby cried and cried.  The doctor came in and Finn was sleeping on me, breathing well.  He said the PICU probably didn’t want to do the discharge paper work before sending us home, but that Finn looked good and we agreed we’d all sleep better at home.  So he discharged us. 

We went home, but neither my husband nor I felt settled.  It’s like we knew we shouldn’t have left, but did it anyways.  We took shifts to get sleep and the other would stay up with Finn. I got to sleep first and when I woke up I took Finn from Will and realized something was wrong.  He wouldn’t nurse and was struggling to breathe.  He was barely crying, but wouldn’t stop fussing. I woke my husband and told him I was taking Finn back to the hospital.

We loaded both our boys up and as we drove Finn got worse and worse.  By the time Will drove up to the Emergency entrance I was rushing our blue baby in yelling for someone to get oxygen, my baby couldn’t breathe.

They got him oxygen and Will arrived after dropping our oldest son off at Will’s brother’s house.  When he came in I went into the bathroom and vomited. I had almost lost my baby.  The ER team was amazing.  They stabilized him and spoke comforting words to us. We were readmitted into the PICU for several more days, then moved back onto the general pediatrics floor, and finally sent home with oxygen and a monitor.  We were also seen by a respiratory specialist who we continue to see regularly—they weren’t going to let us go home without the proper support again.

So many mistakes were made, but so much grace was given. I have carried around a lot of guilt and anger from this time.  I have felt responsible.  I have felt others were responsible. After all of this our pediatrician sent a letter a couple months later that said he would no longer see Finn because he didn’t think we followed his advice (even though we did) during this time.  He didn’t see the fight in me at the first hospital was PTSD (post-traumatic stress disorder).  He didn’t see I was scared.  And in firing us as patients, he told me I was a bad mother whom he didn’t trust.

That is hard to write. That is still hard to heal from. It’s already hard not to question ourselves on everything as a parent let alone have a doctor question you to the point that he refuses to see your child.

But let me tell you after two years what I do know to be true: I am a damn good mom.  Doctors, nurses, and parents make mistakes.  We make the wrong calls, but sometimes we also make the right calls and my mama gut saved my baby’s life.

And that doc who chose not to see us anymore and ignored my calls and my texts—he was not the right doctor for us.  He couldn’t see past his own story to see ours and it wasn’t serving any of us.

Now every time Finn gets a cold a trip to the hospital is in consideration.  I speak with his pulmonologist regularly through every sniffle, sneeze, and cough to decide if we need to go in.  I trust my mom gut and I try to balance that against the fears and guilt I know I still fight. Raising humans and keeping them alive is hard work, especially when there are special needs involved, but we do the best we can and sometimes shit still happens.

So in honor of RSV Awareness month I’m sharing our story.  I’m encouraging parents to take necessary precautions for their sensitive children and I am urging outsiders to respect boundaries parents put in place.  And after all that I am also saying you can’t control everything.  Your child may still get sick, but your love and your strength on their behalf can also help them heal.