Going on ECMO

Early this morning around 4am,, my nurse came into our room and said Brigham's doctor had called from downstairs (the NICU is one floor below us) and said she wanted to talk to us.

We went down and got the news that since we'd last seen him around 11pm the night before, he just wasn't doing as well as they'd like and they were prepping to put him on a machine called ECMO.

I think I've explained it a little before, but I'll explain it again. It stands for Extracorporeal Membrane Oxygenation.

Basically, it's a heart-lung bypass machine. There is a catheter coming out of a vein in his body that takes his blood, circulates it through a machine that cleans the blood, removes CO2 and adds oxygen. The blood is then returned through another catheter back into an artery in his body. This is a continous process that gives his lungs a chance to relax.

They called us down to say hi for a few minutes until they were starting the procedure. (It's technically a surgical procedure to insert the catheters). We said hello to the surgeon and watched for a few minutes while they were setting things up. After giving Brigham a little kiss, we headed back up to my room to wait out the procedure.

At around 5am, we got a phone call in my room from Brigham's doctor. While they were finishing setting things up, they had repositioned him, and taken him off the ventilator for a second while they were moving things around. Suddenly, his vitals started to improve.

They got him reconnected to the vent, and drew a blood gas (the lab that checks CO2 and O2 etc in his blood). They said they got the best numbers they had ever had so far. His heart rate, which had been as high as 200, went down a little. His blood pressure, which had been too low, went up a little. His oxygenation levels, which had been too low, also went up a little.

They decided to put off starting him on ECMO since he had seemed to improve for the moment.

**ENTER ROLLER COASTER!!**

He made it until about 8am before the numbers had worsened back to the point where they decided to actually go ahead and start him on ECMO.

It was a quick honeymoon, but the extra few hours he was able to go without it are ever-so-slightly more reassuring in the long run.

We expected that him having to go on this machine was a likely possibility, so it wasn't a big shock. Everything is "we'll see how things go" at this point. He could be on it for a few days, or a few weeks... They may do the surgical repair of the hernia while he's still on the machine, or if he seems to be doing well, may try to wean him off first and then do the surgery. Everything depends on his response in the moment.

I know it looks a little scary, but here's a picture of the two catheters in his neck (one taking blood, one giving it back). *It's also another great picture of his cutie-patootie golden highlighted hair!!*

Brigham with his pal "Lucky". Thanks to one of my mom's coworkers. He came as a gift with a letter describing her own story as a NICU mom and a few friends who have all had dalmation "friends" to watch over them during their NICU stays. Lucky is here to bring just that... luck.

The whole machine (lots of tubing and lots of extra blood.) Brigham has about 6-7 ounces of blood circulating through his body at any one time. With all the added machinery, so far they've added about an extra 14-16 ounces of blood to "the circuit".

Another view of Brigham and the ECMO machine

The machine doesn't actually fix any problems. Right now, it's buying time. The blood pressure in Brigham's lungs is really high (all his blood vessel in his lungs are really tense, and therefore his lungs don't function well). By bypassing his lungs, this machine allows them to rest.

He's still on a ventilator at a very teeny setting and only about 6-7 breaths per minute (time your own respirations, you'll see.... it's slow, especially for a baby). This is to keep his lungs functioning, but they don't have to do the hard work of supplying the whole body with oxygen.

Since he's been on ECMO, he's pinked up a ton, and his vitals have basically held steady at pretty decent numbers.

Even though this morning we were technically on a "low" on the roller coaster, that just means there's nowhere to go but up. We are keeping the mentality that even though things may look good for a while, then tank a little, it's not the end of the world. It's not a "go into deep despair" moment. We just say, "Ok, another new trial. Let's get through it," and move on.

We appreciate all the tons of doctors, surgeons, nurses, respiratory therapists and ECMO specialists taking care of our precious little boy around the clock.

We also really appreciate all the concerned family members and friends who continually remind us that we are in their prayers. Pray for the medical staff too...

And just because we're silly, a picture of me and Justin in Brigham's room today. They were doing a mini-procedure where everyone in the room had to wear a mask (usually we don't have to). We had to get a picture! I can't believe we're such goofballs and we have two children!! :)