1 KG — this might just work
Let’s go back to Saturday night.
I got to hold Breen for two hours. It was magnificent. There was a team of about 5 nurses that made the transfer happen, which required them unplugging his ventilator for a few seconds to unhook it from the isolette and plug it back in when Breen was on my lap. (insert cringe emoji here)
He was swaddled in blankets, tucked into a pillow, with two heated blankets on top of him. He desatted when they completed the transfer, but quickly came back up. We turned the lights down low, and they drew a curtain around me. I rocked in a chair slowly and held my son.
His head was to my right, so I used my left hand to contain and put a bit of comfortable weight on his arms and chest, and my right hand cradled his head, with my forefinger lightly pressed on his “third eye”, just above his nose.
For two hours, this tiny man slept deeply in my arms. Dead weight. Like a baby.
Just like a tiny baby boy.
He did great the whole time, although he desatted again as they placed him back in his isolette. He came back up again.
I sat with him for a bit more and said goodnight. What a beautiful thing. To be a dad to my son Breen.
When I was holding him, I told the nurse that after a few good days in a row, it’s difficult to not brace for a setback. It’s simply happened too many times to ignore. Looming specters are everywhere. The nicu is a place for miracles but it’s also a house of horrors. The mantra is that we hope Breen’s few good days before a setback were enough for him to build the strength necessary to endure it.
Then, as Erin said in a previous post, we got a call that woke us up at 5:30am saying that Breen had coded, meaning his heart had stopped. It was a mild code, only lasting a short time, and they only needed a couple chest compressions.
Here’s what happened: while I was there that night before the code, the nurse noticed that the tape for his breathing tube was a bit loose and had some play in it. That’s a bad thing, for obvious reasons, and additionally if the breathing tube moves around too much, it can trigger the vagus nerve which causes a rapid and dangerous drop in the heart rate along with desatting.
This exact thing had happened a couple times during the night, so the nurse and respiratory tech decided to re-tape the tube later in their shift.
When they attempted to do so, Breen got quite agitated, and clamped down causing a significant desat. When this happens normally, they can increase his oxygen, and do other things to calm him down, but the tape was off at this point so they couldn’t just walk away, they had to continue.
This caused him more agitation, and in the process his breathing tube came dislodged enough for him to be extubated. Instead of re-intubating him, they remembered his old code (thankfully the nurse practitioner who was there for his last code was there that night) and made the decision to switch out the tube, keeping him alive with bagged breaths.
This whole ordeal caused a crash in his heart rate, so the nurse gave him a couple chest compressions to get him back online.
And that all worked. Breen got through it, took to the new tube, and quickly got back to his old ventilator settings.
This isn’t something one can get used to as parents. You can’t get used to odd hour phone calls from the nicu saying your child almost died, or might soon die, or is currently dying, or they don’t really know what’s happening but it’d be best if you came straight away. Those are all traumas to the heart. Body blows.
For nearly 6 weeks, every time my phone rings I brace myself.
I wake up frequently throughout the night to look over at my phone to see if the red light is blinking which might indicate a missed call from the nicu that I slept through.
As Erin said in a previous blog, neither of us can throw out our visitor’s sticker from the day in case we need to rush back to the hospital in the middle of the night. Erin puts hers half stuck to a counter, I just leave mine on my jeans.
It is certainly wonderful that Breen recovered so quickly, showing his strength. Yet it’s horrifying that as strong as he is, he is still so fragile, a hair’s breadth from dying.
When I went to see him later that day, the nurse said he was swinging a lot. This means he would often desat, often into the 50s and even into the 40s. He was doing this far more often than he had been, and it’s taking him a lot longer to get back up.
This is worrying.
The nurse practitioner further expressed this worry and said that we’re dealing with a kid with bad lungs. Signs of chronic lung disease.
Lungs do grow for years, which gives kids like Breen a decent chance of growing their way out of CLD. It’s more accurate to say that babies grow new alveoli until they’re 5 years old or so. But all the alveoli that is grown while Breen is struggling with CLD, and is on a ventilator, will be compromised. Ventilators damage immature alveoli, which grow scar tissue to adapt. These scarred alveoli don’t do very well, and they don’t really heal. Breen will have to mostly make do with alveoli grown post ventilator, a day that is still far off.
So nicus do everything they can to limit the amount of days their patients are on any ventilation, as every day they are negatively impacts their quality of life moving forward. But of course if you don’t ventilate, or ventilate too conservatively, there’s no life to attribute any quality to.
It’s become clear that every intervention, medicine, and cure strategy in the nicu helps something but hurts something else.
(“Medicine X is great and will give your son excellent nutrition! … it also will damage his liver”
“Intervention Y will do wonders for Breen’s respiratory inflammation! … it can also damage his brain”)
The NP said that they want to push Breen while he’s still on his 10 day steroid regiment. It was likely that they would push him from the jet ventilator to the traditional ventilator in the next few days.
The jet vent gives over 300 tiny breaths per minute as a way to keep his lungs inflated and target the alveoli. The traditional ventilator gives 40–50 larger breaths per minute, closer to what healthy babies and adults do to airate.
They were optimistic about the switch because each time Breen would desat, they would use a machine to give him large breaths (like a trad. vent) which would help him back up.
It was a tough day at the nicu. I had to take a break from all the desats, alarms, and concerned nurses for an hour or so. I came back up to hold his hand, contain him, and sing to him. More desats. I left in rough spirits.
I called the night nurse who said that his desats were continuing for her shift. He’d have a good couple of hours here and there, and then would plummet to the 50s and have a hard time coming back up. I slept poorly, checked my phone a few times.
On a slightly positive note, the night nurse weighed him and did say that he was now up to, exactly, 1 kg. Our little kilo. This comes on the back of the good news from the past few days, they have been upping Breen’s feeds and adding extra calories to them. He has been tolerating and doing great on these feeds, which are helping him grow stronger and bigger. Once we get the lower intestine online, he’ll really begin to grow!
I got to the NICU in the late morning and the day nurse greeted me by saying something exciting had happened: they took out the jet vent, and he was entirely on the traditional ventilator. She apologized for using the word exciting later… bit of a trigger, this dude is plenty exciting for us.
It had only been 45 minutes, but things were going well so far. They took a blood gas to check his CO2 levels, Ph and other things, and the reading came back “textbook” as the NP said. A+.
The x-ray also looked positive.
The NP said that they were hopeful for a nice transition over the next day or so for Breen. He and the rest of the care team really felt that this trad vent would be exactly what Breen needs.
I sat with Breen for 3 hours bedside, my hands in the isolette, holding his arms down, with my index finger lightly on the side of his head. His O2 sats were consistent, and his heart rate settled into a nice low consistent number, and he looked like he was in a deep sleep.
My arm began to cramp and get tingly. Just like with a real baby, any parent would hold an awkward position forever if your child was comfortable.
Quick flashback: On Sunday the nurse said that an x-ray showed that Breen’s picc line (the IV that threads through his veins to his heart for medicine) had flipped up (?!?!?) and was pointing towards his brain rather than his heart. Good lord….
A nurse on shift that day knew of a cowboy trick to flip the line down, and it apparently worked! I guess one person presses firmly on the baby’s armpit, and the other one rotates his shoulder around and then boom, it flips back down.
That was nifty (and according to the NP on Monday, doesn’t work that often) but it wasn’t a long term solution. The picc line was facing the right direction now, but wasn’t deep enough and therefore not a “central” line, which would force them to significantly alter his medicine. Also, picc lines have an expiration date, and this one (put in back in Pocatello) was close to done anyways.
So they could either try to reset the line, or do a new one. They huddled quickly and decided for the later. Today would be the day that Breen moved to a radically different ventilator and get a new picc line. We’re also only two days before the try the dye test again, and only a few days before the end of his steroid treatment. Breen sure does have a lot of exciting weeks.
I held Breen in his isolette until the picc line nurse came, at 2:30pm, and left to get lunch, do some work, and try not to think about tiny veins.
The call came at 4:45pm. The picc line was in!!!
I came back into his room, and they said that he did great during the procedure! Tough dude. He really did well, this little guy is so much stronger.
I saw the picc line nurse and thanked her, but she said that while she got the picc line in, she couldn’t thread it, so they called a more experienced nurse to finish the job. She then said that she’s “still pretty new to picc lines and at the lower part of the learning curve” as she made a swooping gesture with her hand to indicate her level of expertise on an imaginary x/y graph. I guess the x axis is number of picc lines attempted, and the y graph is success rate? It was clear she was saying she was at the bottom of the graph.
Masks can cover up facial reactions. I focused to control my eyes.
I mean, if she’s going to get good at this, she has to practice right?
No one wants their baby to be the first picc line pancake, but… well maybe she shouldn’t go around talking about where she is on the graph is all.
The respiratory tech was holding Breen down (containment) gently and was kind of smiling and giggling to herself. She told me to come over and grab a surgical glove. She had put her pinkie in his mouth and he was suckling it. She traded places with me and I contained him as I placed my pinkie in his mouth.
It was overwhelming. He was sucking my gloved pinkie and I could feel his tongue wiggling around. For you non-parents, they make this cool pacifier that you put your finger in so you can feel your baby suckling, and it was so cool with Nora. This was all the more amazing because here is Breen, being a baby, doing baby things. Like a tiny slice of normal in a sea of medical calamities and odd hour phone calls that leave a trail of tragedy and grief. A baby suckling a surgical glove in a hospital. A miracle.
I held him with my hands in the isolette for another couple hours, my thumb being used as a pacifier. He was calm. Dead asleep. Cuddled and cozy and warm. His saturation was steady, his heart rate stable and low, I could feel his breaths and his heartbeat.
For 40 days, this guy’s body has been jostling around from the rapid breaths of the oscillator and the jet ventilator. This is the first day of his life of stillness. He went from 350 bpm to 50 bpm. From bebop to ballad. He likes the ballads.
I went home for dinner and just had to go back that night to say goodnight.
The night nurse said that he had been incredibly stable for her, and it’s obvious he likes the conventional ventilator. She showed me the most recent x-ray (taken during the picc line procedure to check its placement) and the lungs do look much less cloudy than in the past. They’ll do another x-ray in the morning and are hoping for even better results.
He looked so peaceful in his box, deeply asleep. I spent most of my evening time with him sitting silently next to him smiling.
He’s a baby. A fragile powerful baby. And I began to cry a bit as I thought the impossible thought: The scariest thought imaginable for a parent carrying so much trauma, so many recent memories of saying goodbye to my son, so much knowledge of all the things that could’ve killed him and all the things that may still.
I thought, this might just work.