A year ago today, Braeden was in the NICU fighting for his life.
I am processing my feelings considerably well today, but I'm not sure if I ever fully shared the full story of what happened to Braeden. The lowest points that Josh and I were trying to navigate while staying strong for our sweet baby boy.
Braeden was in the NICU for a total of 36 days. On day 14, April 28th, we were discussing taking Braeden home with his pediatric cardiologist and the NICU staff. He had gotten his PICC line out that day around 5:00 PM, and things were looking positive!
The morning of April 29th, at 2:30 AM, Josh got a phone call from the NICU. Braeden's oxygen saturations were really low, between 40% - 60%. He was on maximum wall oxygen but it wasn't improving his situation, so the staff switched to Nitric Oxide. As you can imagine - we weren't able to fall asleep again. We got another call at 4:45 AM letting us know that Braeden stopped breathing and they had to do chest compressions on him. Then another call an hour or so later letting us know that he had stopped breathing again, and had to do chest compressions a second time. The staff said it wasn't urgent for us to be there, and we felt helpless. The staff at that time decided to intubate him, so he was on a vent for a period of time. That was incredibly difficult to see. We took no pictures that day.
They started running tests: testing for viruses like RSV, blood tests to determine if there was a metabolic disorder. The virus screens all came back negative which was a relief. They did an ultrasound of his head and abdomen. We were at the hospital from about 6:00 AM - 5:00 PM on the 29th - they extubated him after he began showing some signs of improved breathing and saturations and I got to hold him for a few minutes. He was so sleepy and we decided to go home too - it was a super exhausting day with no answers as to what could be going on.
We get another call the morning of April 30th, about 2:30 AM. His oxygen levels were dipping low again and they intubated him for a second time within 24 hours. They ordered a number of metabolic tests, another stomach ultrasound, a head MRI and an hooked up to an EEG, as he began having seizures. The metabolic tests would take weeks for results. We were told some metabolic disorders aren't treatable.
After the MRI, we found out that he had a blood clot that traveled through his heart to his brain. He had a stroke and suffered three brain bleeds. They needed to do more metabolic testing, and he needed a blood transfusion because of how much blood they took from him for testing, plus some he lost due to the still unexplained issues. At this point, Braeden was in critical condition. His ranges for everything were out of control. His sodium levels were dangerously low, blood sugar was over 400, his blood gasses were terribly imbalanced.
He needed a blood transfusion badly; he also needed a central line placed in a main artery. One of 4 pediatric surgeons in Madison had to place the line, and at about 10:00 PM he was able to get the blood transfusion.
We FINALLY had an answer of what was wrong after the abdominal ultrasound: He had something called NEC. Necrotizing enterocolitis. This usually presents in premature, formula fed babies. Braeden was not premature, and he was on breastmilk. NEC is scary as hell. Thankfully, they caught it early and even before diagnosis started him on 3 different antibiotics just in case.
The 5 days from April 28th - May 3rd were truly the most terrifying time in our lives. We didn't know if Braeden would survive. Seeing him hooked up to all the machines, cords, tubes... seeing his tiny, bruised body from all the needles (including one IV that went into his head - newborn veins basically don't exist)... that time was an insane wave of emotions and basically being a zombie.
NICU PTSD is real. I didn't sleep well for months after that. The beeping monitors, the changes in his oxygen saturation, the NG feeding tubes, but man Braeden is a fighter. He showed us all he was not going anywhere and continues to be the brightest light in our day <3
These two first pictures were taken after B had his EEG head sensors removed, and after he was extubated again. Third pic is him looking at us like what he just went through was nothin'. Our little spitfire!!
