Wed, Nov 21st

a long hard day

Last night when we left Noa's room, we noticed a note on the white board that they were going to be changing her dialysis machine out at 8am. Its routine for it to be changed every 48-72 hours due to filter needs. And it wouldn't be such a 'big deal', but she's been having so many issues with the catheter (and having witnessed her first hypertensive crisis when she went on dialysis) I wanted to be there.

I ran over to the hospital in the morning and left Justin with the kids still in jammies. They were still prepping the machine when I arrived. The team was also prepared for any possible hiccups and called the right people to be on hand... the respiratory therapist, the dialysis docs and techs as well as Noa's doctor.

I was by Noa's side when they started the new machine. It was the first time I had seen her eyes really open since being moved off of ECMO and down to NICU. I took a little video for Justin....so sweet that she was moving around a little and her eyes were checking things out. And in that moment everything went bad quickly. The dialysis doctor asked why the filter indicator looked like it was clogging...and then the machine started showing numbers that had them all concerned...and then Noa's heart rate began to rapidly drop and her blood pressure was extremely low. 

Then nurses and medical staff began to flood into the room and I backed away as the doctor began to give instructions to give her fluid (bolis) and meds, to turn up all the settings on her oxygen and nitric oxide. They called in the 'cart' which has the necessary tools to resesitate and treat her in a 'code' situation. It was so surreal and quiet as everyone waited for her numbers to go up. And they weren't. Her heart rate sat in the mid 40's for a minute or two (or maybe it was 30 seconds)...and I knew it was so serious...more people came in to assist the nurses, and our case manager asked if I could get Justin to come over and they would provide a volunteer to be with kids. He was already on his way. Eventually the doctor gave the orders to give her Epinephrine which caused her heart to quickly respond and it shot up to 110, went back down and then slowly started the climb back to normal.

They discovered that the catheter where they hook up the dialysis had some issues. There are two ports, one that draws the blood to go thru the machine for treatment and one that puts it back in to her....well the the one that puts it back in was clogged. It took so long for the machine to detect that it wasn't returning blood to her that she lost a lot of fluid/blood. Enough to cause her heart and pressures to dip dangerously low.

Everyone was disheartened by the incident. The doctor came over and gave me a hug...and tried to explain what happened. Justin showed up (all dishoveld and wet- I guess it was raining)...and we were back at Noa's side. She looked dusky colored. After removing Noa from dialysis again, they decided that the new plan was to have surgery come in and change out the catheter since one of the ports was clogged (and it clearly wasn't working after so many issues). 

Around 2pm, the surgeons removed the femoral IV from her leg and replaced it with a different and new dialysis catheter. The  femoral IV serves as the location for providing Noa with her meds and drawing blood, so they needed to find a new location for that. They decided to use the old catheter in her chest (the unclogged one), to be the med port for now.

At 5pm they restarted the new machine with the new catheter in her leg. It went smooth enough....there are some small issues to keep their eye on....but as of tonight, her numbers were good and its going well enough.

What a day. Thank God that He always provides support for us. I honestly didn't know if Noa was going to pull through on this one. In those long silent moments her heart rate was down, I saw some people look in my direction. I felt a numbness and probably some shock. 

I don't know where those memories are stored. I have a few of them now. At some point I will lay them in the hands of Noa's maker. Only He truly knows what I feel and what I saw and my thoughts. Only He can truly comfort me....any of us that grieve for this baby.