The Dreaded NICU
So yesterday I ended with Brennan being transported to the NICU on April 4th, 2016. The next few days were a bit of a blur. Learning how to scrub our hands and arms until they were raw, taking turns between me, Liam, and our moms since only two of us were allowed to visit with him at a time. He was hooked up to a pulse-ox, heart monitors, an IV and a catheter as keeping the bladder drained was the only way to stabilize his creatinine levels. On the 6th I was discharged from the hospital (the nice lady in admin let me keep my room those extra days given our unfortunate Maria drama) and we began our stay at the Ronald McDonald House about 15 miles away (since we lived about 70 miles away). The night of April 7th, we went to scrub in for our evening visit and heard the code alarm no family in NICU wants to hear. We walked back to our room only to be promptly shooed away as team of doctors and nurses covered from head to toe worked on my lifeless looking child. The NICU unit secretary simply forgot to let us know the code WAS FOR OUR KID. But seeing Brennan like that is something that we can never forget.
About 20 minutes later, we saw Brennan’s urologist who said they simply needed to insert a semi-permanent catheter to keep everything draining. He apologized for us having to see it at the worst moment, but thankfully it was much milder than it looked. He also told us that we could not wait any longer before beginning procedures, and the next morning he would be taken to the OR to get a nephrostomy tube placed in his left kidney. At nine days old, he was still too small and weak to do the surgery they needed but if nothing was done, he’d lose the kidney. So the next morning we watched Brennan get wheeled to the OR and come back 50 minutes later still intubated, hooked up to even more wires, and with a tube coming out of his back. The kidney was draining brown/red/yellow fluid filled with lumps of bacteria. Ick. A later culture showed that his kidneys were so backed up, staph aureus grew and was what made him so sick after birth. It was all pretty gross and I was still only allowed to pump/bottle feed, but we finally saw the stabilization that gave us hope.
Post surgery #1
In and around this time, Liam and I were still dealing with the same crap from the medical staff. Don’t get me wrong, we had a few AMAZING nurses who really helped us keep our sanity—any NICU parent knows how quickly that dwindles while you’re in dark windowless rooms hearing baby’s constantly crying or sometimes dying. The nurses were constantly pushing the pacifier which is something we were delaying for breastfeeding purposes; they were always reluctant to get us a doctor to speak with since they didn’t want “the kids” to bother them. To get around this, Liam and I wrote long letters about pacifier use. Of course, the nurses hated this as it was inconvenient to actually see why a child was crying over simply sticking a pacifier in his/her mouth. To make sure people took us seriously, we did everything in shifts from eating to going pee. Once I was cleared to drive I even began going in the middle of the night to double check. We “kids” wanted to ensure respect and proper care for our child, and sadly had to resort to demanding it. We also started looking at Brennan’s medical charts on our own so we could keep charting his progress for our records. A middle aged and particularly sassy nurse saw us doing this, and proceeded to take away his chart, saying that we (the parents…) did not have the right to look at it (hah!). We found a doctor that we trusted (fellow Virginia Tech alum so a great human) and asked him to explain this madness. He told us that in the case of children, especially babies, parents need to opt-in to get FULL access to their child’s medical records. In the meantime, medical personal held the right to make changes to a child’s care without informing the parents. He gave us the name of the form to sign so that we could continually look at his updated chart at our leisure. In the meantime, however, the nurses chose to give us no information, even when we asked for the doctor and continued with telling us to “not worry about it” or “just relax”. Unfortunately, after two days of searching and calling many people, we could not find this form. A nicer nurse left his chart in the room where we realized that his medicine had been switched—without our knowledge, and that Brennan was getting a mixture of breastmilk AND formula in his bottles—again, surprise! So while Liam was calling lawyers, I managed to get ahold of the ethics director of the entire St. David’s healthcare system. I kid you not the paperwork was on Brennan’s bedside table when we returned from lunch. We let them shake for a day about really getting a lawyer involved, but of course that would have just been a whole other mess on top of Brennan’s illness. But referencing some of my old college materials and researching some law websites showed that we had more than enough to build a case. Not bitter or anything….
Now back to the baby! On April 23rd, Brennan’s due date, he had his second surgery. They found that he had an obstruction where his left kidney connected to the ureter, but he was too small to cut out the bad and simply reattach it. So he got an ureterostomy. Unlike the nephrostomy, the ureterostomy did not have a tube, was in the front of his body, and drained straight to his diaper. Let me digress real quick and say God totally knew what He was doing when he put the cloth diaper idea into my head because disposable diapers just cannot work for this situation. I will definitely do a post on cloth diapering soon because it’s so freaking awesome. Anyways, we left the NICU a few days after his surgery thinking this was it! A few doctor follow ups and we’d be able to start our happily ever after as a family of three. There were different plans, of course, but even through the suffering, the story gets a whole lot sweeter.
Big boy waking up from surgery #2
Liam holding Brennan for the first time in weeks (I was only allowed to hold him while breastfeeding 3/day).