Tag Archives: Feeding Issues

Three Hospitalizations & A Baby (Sorta Starring Dennis Quaid)

3 Sep
I have been waiting a long time to post this important and highly personal story, something most of our friends don’t know about yet, and today is finally the day. I’ll even tell you what we have in common with Dennis Quaid.
Many of you followed our experience w/ Natalia in Cedars Sinai, and are well aware that we had a bad and dangerous series of hospitalizations/discharges. It shocked us as that’s where we’ve gone for most of our lives; it’s where I was born myself, and not only does it have a stellar reputation but we’ve had SO MANY great experiences there over the years…I would still consider it a top notch hospital. But nonetheless, sometimes in life someone has to become the unfortunate “teaching case” where things go badly, but IDEALLY they learn from it and make things safer for future patients, so here is our experience. (You may know pieces of the first 2 parts, previously mentioned on Facebook, but we’ve never until now publicly discussed the third)…
Adi had a rough pregnancy, so difficult that she was vomiting from Day One until the day she was taken to get a c-section 6 weeks early, an ironic Mother’s Day surprise. The one relief from giving birth to our child prematurely was knowing that the vomiting would finally come to an end – and yes, thankfully, it did. Safe delivery from our good doctor, the cord was wrapped around the baby’s neck, and they had to take her to the NICU. Once there she had feeding challenges. And also once there she developed jaundice. But as countless parents are aware, all of these were quite common things to experience with preemies, and we were confident in the care we were receiving. The social worker was attentive, the nurses were knowledgeable and caring, and the chaplain was checking on our psychosocial needs daily. Cedars Sinai was living up to its reputation as a wonderful place to deliver a child…until our first problem.
Scene 1: (NICU)
Adi and I had been visiting the NICU regularly to be with our new little Natalia Rose. Each doctor, physical therapist, lactation consultant and nurse had mentioned that it would be at least another week before she would go home. Expectations were there, we were prepared to stick it out while Natalia continued to sunbathe under her spa-treatment UV lights to keep her jaundice at bay. The need for assistance for her breathing had been solved, and although she was breastfeeding poorly, she was swallowing milk from the bottle, so it mostly came down to the jaundice-problem (caused by raised bilirubin levels). She was considered at moderate to high risk because she was not only a preemie, but what you call Coombs Positive – a Blood Incompatibility disorder. This is also a common occurrence; it happens when the baby and mother are not the same Rh Factor (Positive/Negative blood type). Most mothers get a shot of RhoGAM to prevent this while pregnant, but Natalia was born before the shot could be given, so thus, the baby would need more help from the UV lights for her bilirubin levels. Sure, no problem, the staff had dealt with this countless times before, and thus we were told she was stable and doing well, and likely to discharge home the next week.
On day 5 of her life, Thursday night, the NICU neonatologist visited us, and with an absolutely lovely bedside manner dropped an unexpectedly happy bomb on us – there’s a chance Natalia could go home TOMORROW. What? Really? But everyone else had said “hopefully next week” just earlier that same day. “Yes, tomorrow possibly”. A few minutes later he said, “50/50 tomorrow it will happen”. We weren’t sure what had happened in those few minutes to take this from a maybe to 50/50, but this doctor’s friendly internal monologue continued. As he kept talking to us, a few minutes after THAT he blurted out, “tomorrow is going to happen, I’m confident, she will go home tomorrow”.  I said this made no sense, she was still under the UV lights, nobody else had thought it could happen for days, how could this be? The warm and friendly NICU doctor reassured us she would be fine; he would take her off the UV lights in the morning, test her bilirubin levels, wait 6 hours to be sure, test her again off the lights and then send her home. I tried to quell the red flags that had been going off in my brain, equal parts due to the fact that we wanted to go home with her, mixed with the fact that his warm reassuring bedside manner convinced us that he must be doing what’s right.
The next morning, our sweet NICU nurse said to us, “Wasn’t the doctor going to check her bilirubin and wait 6 hours before possibly discharging her?” and when we answered yes, she said, “okay, I need to call him, he just ordered her discharge home now without running any tests”. The red flags came roaring back in my brain. The tests got ordered, her levels were below actual jaundice, around 10.7, and we waited 6 hours with the UV lights turned off to see how her body would respond. 6 hours later, the new test showed that her number had gone UP to about 11.3, still under the jaundice levels of 12, but the trend was heading back toward it. He still ordered the discharge. MORE RED FLAGS. I questioned him, how could this be, the numbers trended in the wrong direction? “It’s okay, it’s still under jaundice at these numbers”. Yes, I understood that, but surely he could see this was heading that way, if anything we could wait another 6 hours and see what the numbers would be the next time? “No, she’s fine, she’ll be fine, you can safely take her home, see your pediatrician after the weekend”.  Okay, wonderful, I muted my red flags, I trusted the neonatologist, and we celebrated that on the 6th day of her 6 week premature life, we could take her home!
2 mornings later, about 40 hours had passed, it was the Jewish holiday of Shavuos, and I came home from my synagogue and just STARED at Natalia. I couldn’t quite put my finger on it, but something about her skin tone was off. Now please realize, I am an RN, I see Jaundice in my patients with liver failure, but this was simply not it. The whites of her eyes remained completely white. Her skin did not resemble a yellow highlighter. It was not jaundice the way I know it, but something told me it might be anyway. At this same moment I realized something else: we had been given NO EDUCATION. None. Zero. Zip. Not a drop of “look for this w/ her poops, and be aware of that for her breathing. We were first time parents, taking home a premature moderate to high-risk baby, and we were not coached on anything, not even jaundice signs and symptoms. Oy. I called my pediatrician, who we continue to trust and love to this day, and she was confident in my judgment enough to send me to get a blood test for Natalia’s bilirubin levels. We happened to even run into our dear friend Aryeh who is a pediatrician, and agreed with our “better safe than sorry” approach to get the blood test that afternoon. 2 hours later, our pediatrician called us and explained, “Her bilirubin levels are 18.9, you must take her right now to be checked back into the hospital for her jaundice levels. She will be okay because she is still under a level of 20, but this is very important”. Here is where I must explain the importance of the number 20. You and I have what’s called the “blood-brain barrier”, this acts as a sort of moat to protect the castle. Our brain uses it to keep things filtered out…..BUT until we turn approximately 10 days old, we don’t HAVE this barrier, and if the bilirubin levels are above 20 at that young age, you could thus get permanent brain damage and deafness. Do the math, she was 10.7 Friday morning, 6 hours later she was 11.3, and 40 hours later she was 18.9. It would have likely been just a matter of hours before she had passed that scarily irreversible point in time, and thank GOD my inner voice nudged me into rechecking this, because it was caught in time. But it sure seems like the discharge was scarily incorrect.
Scene 2: (Pediatrics Ward)
We were no longer in the NICU, but rather the Pediatric unit down the hall. This was a massive relief to us as it meant we could sleep in the same room with Natalia. She was to stay under the UV lights without a break until her levels could justify otherwise. We could not even take her out to hold her, and that was okay, it was what was needed for her, and she seemed content in her little sun-tanning booth. Let’s gloss over the day that we had a terrible nurse who left her UV lights OFF for an hour and did not even correct (or apologize for) her own mistake when the Nursing Assistant caught it. Let’s just cut to the end of this 2 day hospitalization. Each and every shift the doctors and nurses would come and check on us and ask how much she had been eating and pooping/peeing. We kept the chart, they put it on not only a paper but their computers. Upon discharge they told us how great she was doing and we could go home for real this time. We were relieved, and went home. 4 days later our own pediatrician was out of town, we had a bilirubin test that showed the jaundice was finally a thing of the past, but the doctor covering for her called us on the phone and asked us to go over Natalia’s feeding habits each and every day. Adi read him the numbers kept on her app that tracks everything. The doctor had the incredibly decent compassion to invite himself over to the house for the simple purpose of telling us that WE HAD TO GO BACK TO THE HOSPITAL AGAIN. He had done the math and seen that she was eating – only HALF of what she needed to thrive. Half. I told him, “I could deal with this easier if she had been eating less well since coming home from the hospital, if something was DIFFERENT now, but these numbers WERE what she was doing in the hospital. Nothing had changed. They simply sent her home when the numbers had reflected a failure to thrive, yet another ridiculous discharge…
Scene 3: (Pediatrics Ward)
Upon arrival, I saw some of the same young doctors from the second hospitalization, in the same pediatric unit as last time, and I was not polite. As soon as they visited us, I told them, “I am sick and tired of being here, but what I am really furious about is the fact that you doctors keep treating her for her ADMITTING DIAGNOSIS, but ignoring everything else that arises as unimportant. The first time she had respiratory distress from birth, it was solved, the jaundice arose and it was not taken seriously enough, which brought us to our second hospitalization. That second one was for jaundice, which was solved, but the fact that she was eating half of what is necessary was totally ignored, not even acknowledged, and for that reason alone we were back there this third time for the feeding issue. Now you are about to put a feeding tube down her nose for however long, but if ANYTHING ELSE arises, you’d better actually pay attention to it. For example, look at this rash on her chest. It may be nothing, but we want you to look at it and pay attention, even though that’s not the main reason she’s here…look at her entire being, not just her diagnosis!” That was my rant, and unbeknownst to us, it contained a large nugget of irony. The next morning her temperature dropped, they ran tests, gave the poor tiny thing a spinal tap, and confirmed that she actually had a form of Viral Meningitis known as Enterovirus (dangerous for babies but completely benign in adults). And when the Infectious Disease doctors entered our newly created isolation room to visit us, they asked if she had had any recent rashes on her chest. Ha! Yes, it was our example of something else to look at, and was there even a photo of it for them taken by the doctors I showed it to? Nope. Oh well.
19 days in Cedars went by, we were treated with kid gloves, and you can imagine why at this point. I reported all of what I have repeated to the Quality Control department, who would convey it to Risk Management. Our own trusted pediatrician had reported our experience to the head of the NICU, and he came by on two occasions to discuss and apologize for our experience thus far. Multiple heads of departments in nursing and the hospital visited us, and understandably apologized carefully. I told them we were not interested in suing the hospital, but wanted things to be changed for the future, and “you’d better tear up our bills, because we won’t be paying for this huge mess, obviously”. The majority of nurses, physical therapists, and various other people who helped us were fantastic. Oh, remember that nurse I glossed over, who left her UV lights off and didn’t take responsibility for her mistake? We had her again, silently worried, and within 2 hours that same nurse had made 3 more errors, including when her trainee (yes, she of all people was training someone else) asked her “aren’t they under isolation?” she answered loudly in front of us, “yes, I think so, but I don’t know why” to which WE chimed in and exclaimed, “She’s in isolation because she has Viral Meningitis!”. This was weeks into her isolation, and as our designated nurse hours into her mshift, she didn’t even know that basic fact of the care of her own patient? Yikes. We had to report this nurse as being quite obliviously unsafe.
Scene 4: (Home)
But we got to go home! She had the tube down her nose for the “Gavage” feedings for most of the 19 days, but by the end she was eating enough, she had no Enterovirus symptoms, she could go home and this saga would be over! Everyone celebrated, the 3 hospitalizations were enough, nothing further would be missed. We enjoyed a completely uneventful week at home UNTIL ONE MORNING ADI SCREAMED. “What, what’s wrong???” “COME INTO THE KITCHEN RIGHT NOW!” I groggily got out of bed, and saw a bunch of bottles of breast milk on our counter. “What’s the problem?” I asked. “LOOK CLOSER AT THE LABELS!” she answered. That brings us to the photo at the start of this post. They had the name, birthday and medical record number of ANOTHER PATIENT! I went to the garage, checked our entire breast milk supply, and we counted 13 bottles of this other patient’s milk! When they sent us home with Adi’s milk, they had somehow sent us home with another patient’s milk, it was insane! Her HIPAA (privacy) was totally violated. It turned out a week after leaving the hospital, they had found a way to mess up yet again, and when I called the same people to report this newest problem, their previously diplomatic stone-faced apologies were gone. They had been replaced with turning pale, saying things along the lines of “Oh my God, I can’t believe this happened, I can’t believe the hospital did this to you, that’s crazy, and after everything else you’ve gone through already, I don’t even know how to start apologizing for all of this, this is NOT okay.” No it wasn’t, and I appreciated that people were giving me human reactions, not merely the previous apologies without admitting liability that we had been (understandably) getting until this point. A courier came to pick up the bottles. They had to contact their legal department and epidemiology. They needed to know what tests to run on the other mother, assuming we had already fed Natalia some of that mother’s breast milk before catching the error (because yes things can be transmitted via breast milk). A week later the other mother was contacted, her blood was tested, she asked that Adi’s blood also be tested (a reasonable request as she likely got some of our milk in exchange) and thankfully everything was fine on both ends. BUT THIS SHOULD HAVE NEVER BEEN ABLE TO OCCUR.
Why did I bring up Dennis Quaid at the start of the piece? Am I simply name-dropping randomly, or was there a purpose? Can anyone recall something to do with Dennis Quaid and Cedars Sinai? Let me refresh your memory with this link, and a quick recap: 11 years ago, Dennis Quaid and his wife gave birth to twins in Saint John’s Health Center – my hospital, where I work as an RN! But a few days later, their twins developed an infection, and the Quaids brought them to, wait for it, Cedars Sinai. Somehow, a HUGE medication error occurred in Cedars, and they were given too much of the blood thinner Heparin. How much was too much? Umm, how about 1 THOUSAND times the proper dosage!  Miraculously, it was caught in time, and they were able to save both babies. But thanks to the horrors of their case, multiple changes were made for the betterment of everyone else. Labels on Heparin were changed, high alert labels were added, different protocols were put into place. Basically, they went through the shit of it all, and thankfully everyone else is now safer for it.
Well, we are your latest crash test dummies. Natalia is the latest Quaid twin. We have been told by Cedars that they now are utilizing a bar-code system for all breast milks so that the wrong milk cannot be given upon going home again. Furthermore, the head of the NICU explained to us that thanks to the bilirubin/jaundice scare, they are applying for an experimental technology that would allow them to do a simple test that shows who is at significant risk of jaundice bouncing back the wrong direction, as it did with Natalia. Long story short, our case was not simple and not good, but the hospital should be a better place thanks to what happened. And Natalia is just fine, she is gaining weight, eating plenty, no jaundice, no breathing issues, and we are not worried. Who knows, maybe Dennis Quaid will one day read this and his twins can babysit for her, wouldn’t that bring things full circle?