NICU Warrior part 3

While we were definitely in full swing of routine, there were many highs and lows that were a part of Baer’s NICU stay. This section is to highlight some of the more dramatic aspects of the stay.

On June 21st Baer underwent his first surgery at 2 weeks old. This surgery was to do a ureter valve ablation and to see the full scope of the urological issues he was facing. The valve ablation did help relieve some of the hydronephrosis (back up of urine back into the kidneys that were already working so hard!). The surgery itself went fast and smooth and before we knew it he was rolled back to his room with us. They did tell us about a hiccup that came up, the anesthesiology team had a very difficult time getting his veins for the medication. And by very hard time, they had to stick him nearly a dozen times. Poor Baer looked like a little pin cushion and you could see the needle pricks and light bruising around them. His blood pressure did get very high during the struggle to get his veins, but it was back down to his “normal”, so there weren’t any lasting concerns.

The first night of recovery went well and the next morning he came off the ventilator and onto the high flow nasal cannula. Baer was moving in the right direction! Keith had to be at work, so Mallory spent all day at his side. It was a bit of an emotionally draining day, so when Keith arrived to say his good night to Baer so they could head home they decided to stay a little longer than normal. While holding him, Keith noticed some odd movements and got the attention of our night nurse. This triggered one of the longest nights of our lives. She was immediately concerned and called the on-call doctor that night to come and observe. At that point the movements had stopped, but it did solidify that we were going to stay later to make sure everything was ok. Dr. Michael asked us to film the movements if they happened again. Almost as soon as he got down the hall, it happened again, so Mallory filmed what we learned was a series of seizures while Keith held Baer. A rapid succession of things then took place. The Neuro team was called and the transport team jumped in to provide more specialized monitoring. After Keith almost passed out from stress (and was subsequently jokingly threatened by Baer’s doctor to relax or he would be admitted) the team pulled some strings so that Mallory and Keith could stay the night in one of the Ronald McDonald rooms. That night was busy with a flood of tests and various imaging studies. The next day he was still having mini seizures and Baer was put on a loading dose and subsequent dosages of Phenobarbital which meant the next couple of weeks our little man was extra sleepy. Good news ultimately came from the imagine and studies that the cause of the seizures were from a trauma caused by high blood pressure during surgery. This meant that it would still need to be closely monitored, but that there were no signs of long term damage or an on going seizure disorder.