Wednesday, July 9th – The day things took a turn for the worse

Today started out great.  Her vitals remained stable on the CPAP machine, and doctors continued to express how impressed that were that she was doing as well as she was.  I had started pumping to provide nutrition for her, and they were able to initiate very small amounts of colostrum through the oral gastric tube.  This was exciting as we knew that this was only going to continue to make her stronger.  She tolerated the feedings well.  Her lab work was also unremarkable.  Again, Ian and I continued to feel “were going to get through this…we have a tough kid.”  Although I knew that things would not always continue to go this well, as there were obviously going to be bumps along the way (as our child was in the NICU), I began to feel like our road to recovery was going to be more on an upward trend than anything else.

I was still admitted at the hospital, likely going to be discharged the following day, and continuing to get occasional meds and vital checks.  My recovery was also going great.  I felt really good…almost too good and times forgetting that I had just delivered a child, but was probably running mostly on adrenaline.

I got out of the hospital for the first time since admission that night (which looking back on it I’m not really sure if this was legal or not since I was still admitted, but oh well), and Ian and I went to dinner at Joe Mama’s (Italian restaurant near the University of Pittsburgh).  We decided it was time to name our child.  We needed to make a decision.  In between bites, I pulled up the previously generated “name list” on my phone, and we went through each name.  We had decided during my admission that her middle name was likely going to be “Mae” after my grandmother who passed away the week prior to my admission.  As we went through the names, we came across “Riley,” which we hadn’t talked about or considered much before.  I looked up the name.   It was Irish in origin (which was important to us because Ian and I wouldn’t have met if it weren’t for the celebration of St. Patrick’s Day), and the name meant “valiant” and “courageous.”  Perfect.  As we said “Riley Mae” several more times out loud, we both decided it had a nice ring, and we liked it.  We think.  Of course we couldn’t commit yet.

It was 10:30pm and I decided it was time for me to try and get some rest.  Ian was still wired and watching TV.   I was awoken out of a light sleep by the ringing of our room phone.  Ian answered it, and after he hung up, he said “We need to go down to the NICU.”  My heart dropped a little bit, but I didn’t panic, because maybe they just wanted to fill us in on a slight status change or maybe she needed to go back on the ventilator for a brief period…I don’t know.  I was new at this whole thing.  I wasn’t overly concerned.  We fast walked/jogged down to the NICU (keep in mind I’m still supposed to be in my “recovery phase”), and we barely made it through the doors of the NICU waiting room where we had 2 nurses meeting us in the hallway, looking panicked and out of breath, one having tears in her eyes, asking if we were the Swoyer parents.  Now my heart completely dropped.  This was bad.  Really bad.

We reach the hallway of our daughter’s room, and there are several doctors and nurses outside the room, and when her room is in my line of sight, I see 10-15 more doctors and nurses inside of her room.  It was complete chaos.  My vision starts to blur a bit and the doctors have us take a seat in the hallway right outside her room…I see the doctors doing chest compressions, she is on a ventilator that was making her whole body vibrate, and her vitals are showing that she’s barely alive. I ask “what the hell happened….she was doing so good?!?” in a panicked, hysterical voice.  The doctor is talking in complete sentences obviously, but I only hear bits and pieces, including the words “pulmonary hemorrhage,” “doing everything we can,” and “she is not responding.”  Ian and I were sitting in the chairs, looking into the room, watching them try to revive our daughter.  I also noticed several of the doctors looking at one another, shaking their heads, as if they were saying “there’s nothing else we can do.”  It was  a goddamn nightmare.  I was in tears, audibly crying at times, and Ian was in a complete state of shock, eyes welling up with tears every so often.  I started to have thoughts of losing our child, on her 2nd day of life, and what it would be like to go home to the half started nursery with the closet full of adorable clothing, without her.  I felt so sick to my stomach.

I have no idea how much time had passed, it could have been 5 minutes, could have been an hour.  All I know is it felt like an eternity.  The doctor says “Ok we were able to get her back, but she remains in very critical condition.”  As I had started to face the idea of her not surviving, I was shocked to hear this.  I said “Wait…what, she’s alive?”…and the doctor repeated herself.  I let out a huge sigh, as did Ian, but in about 10 seconds, that sense of relief was gone.  

Turns out that despite the chest compressions, oscillating vent (type of mechanical ventilation that uses a constant distending pressure (mean airway pressure [MAP]) with pressure variations oscillating around the MAP at very high rates (up to 900 cycles per minute), and administering a drug to restart her heart, the doctors later admitted that they weren’t really the ones who were able to bring her back.  They had basically decided there was nothing else they could do, and that’s when Riley Mae Lang (name now confirmed) fought back and pulled through on her own.  Thank God.

Needless to say, the remainder of that night was very touch and go.  Ian and I obviously did not leave her room at all that night except to go tot he bathroom when we couldn’t possible hold it any longer. The dinging of the monitors and alarms started to haunt us.  Despite the fact that she was on maximum ventilation support, she was far from being stable.  Her oxygen saturations would drop into the 60s, 50s, and even into the 30s.  They’re supposed to be between 87-100%.  The respiratory therapist had to frequently rebag her to re-recruit her lungs and try to get them working again, hoping to stabilize her respiratory status.  She would get occasional suctioning to try to remove the large amount of blood  that was now sitting in her lungs, but the doctors and nurses struggled with finding a fine balance between not suctioning too much and irritating her lungs, causing her to desat, and also making sure they were doing it frequently enough that she wouldn’t gets clots and mucous plugs.  There was dried blood on her lips and around her endotracheal tube (the tube going from her mouth to her lungs, providing oxygen via the oscillating vent).  We were anxiously awaiting a blood transfusion, which would hopefully help to balance out her blood gas levels and improve her respiratory status as well.  However, it was a 3 hour wait by the time they contacted the blood bank and received the matching blood in-house.  Besides the initial big event, there were at least 2 other times that night/early Thursday morning, where Ian and I held one another, crying in the hallway outside of Riley’s room, not being able to watch the monitors any longer as they weren’t showing anything positive, and thinking the doctors weren’t going to be able to get her stable enough to keep her alive.

I looked up pulmonary hemorrhage on the internet, trying to find a reasons for why and how this could have happened.  It wasn’t helpful.  What I did notice is that in Riley’s case, it was extremely rare, and the fatality rate is high.  Several nights later, Ian asked an RN if she had ever seen other cases like Riley’s, referring to the pulmonary hemorrhage.  She told him that she’s been working here for 21 years and she’s only ever seen one other case, and unfortunately, the outcome was not as good.

 

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