Eleanor's NICU stay

Easter sunday when everyone was at our house for lunch and to spend time together seemed like any other day, I was busy getting food ready for everyone and stopped periodically to wake Eleanor up to feed her a few times throughout the day. My family was holding Eleanor all day and I noticed she seemed to be making some cooing sounds periodically but didn't think anything of it. She also had a tendency to look like she was breathing heavily if she is in a scrunched up position like her car seat or if she is held kind of balled up. I noticed around 4pm while my sister was holding her that her cooing seemed more like grunting/whimpering and was now with every exhalation. She was breathing heavily and much more quickly and from across the room it hit me like a ton of bricks that something was wrong. I grabbed her from my sister and immediately stripped her easter outfit off of her and started to do a full head to toe assessment. She was breathing really quickly and retracting, felt a little warm (but not hot). She was mottled and pale and lethargic, she wouldn't really wake up and her arms and legs were pretty limp. I realized I had woken her up for every feed for the past day or so and that she hadn't really opened her eyes much at all but I figured she had just been snuggling with lots of people and loud noise around and kind of "shut down" like babies do when they're overstimulated.  I immediately called the nurse practitioner's office at work to ask one of them to listen to her grunting over the phone and describe her symptoms. My sister went and grabbed the thermometer while the phone was ringing and her temp was 99.4, that's not alarming unless its a 2 week old baby with no reason to have a higher than normal temperature matched with other symptoms of sickness. Dr. Go, our head neonatologist just happened to answer the phone and I asked her to "talk me off a ledge" and reassure me. She said she couldn't and based on the symptoms I was describing told me to bring Eleanor the ER immediately. She told me she thought she could be sick and that if it wasn't RSV or flu that she would take Eleanor to the NICU if she had to be admitted. We literally NEVER take a baby that wasn't just born at KU that day or while it was still inpatient unless that baby was a NICU baby we had that had been discharged and returned within 30 days of discharge OR if it was a transfer baby from another hospital. All other babies no matter how old go to the PICU or pediatric unit. I asked Dr. Go if she could do that and she said "she's only two weeks old, she is still a neonate by definition and I'm the medical director". Okay then. I definitely wasn't going to argue. But at that point I really didn't think we would be admitted, to be honest I'm not sure what I was thinking would happen, but I was just scrambling to get things together to leave the house and to have everyone who was still there know what to do to take care of Henry. Taylor had been upstairs changing clothes and in the bathroom and when he came back downstairs I said "Eleanor is sick, we are going to the ER" and just started crying. He was so shocked that when he went upstairs just a few minutes before, I was just checking her out and now we were rushing to the ER. I reassured him that I just knew something was wrong and with babies, when they get sick, they get sick FAST. I sat in the back seat the whole time to make sure she didn't have trouble breathing since she seemed to be in a little bit of respiratory distress before we left the house. By the time we got to the ER her temp had gone up to 100.7 and she looked even more pale and limp but wasn't doing the grunting thing anymore. They got us into a room immediately and started to do a septic workup. We were already exhausted.

That includes getting a lot of blood work using sterile technique to get a blood culture and check other labs, then they got chest Xray, nasal wash for flu and RSV, urine culture via urinary catheter and then a lumbar puncture to culture her spinal fluid to rule out meningitis. They had a few of my NICU nurse friends come down to get her blood work since we are used to that and the ER nurses aren't as comfortable with babies. Her flu and RSV panel came back negative, thank god, we would hopefully be allowed to go to the NICU since they had planned to put an IV in her and give her fluids and antibiotics for 48 hours until the cultures came back. Her chest Xray was negative as well but her urine in the tube after her culture looked cloudy and that's never a good sign. They did her lumbar puncture and that is usually incredibly painful for babies and adults. Adults scream bloody murder during them and so do babies and I was bawling just thinking about her having to go through that and so scared they wouldn't get a good sample and either have to repeat it or not be able to read it out if it got contaminated by blood. Luckily there were three of us to hold Eleanor still and the doctors were fantastic and got the sample quickly and clearly. Then it dawned on me she hadn't made any noise or even opened her eyes or flinched. She literally "slept" through the lumbar puncture. I knew then how truly sick she was. Her temp continued to climb and was 101.8 when we finished the testing. We knew then that she would be admitted for sure and I started crying knowing that I would have to be away from Henry for a few days. The day Eleanor was born the hospital went on lock down for flu/RSV season since it hit so late this year. That means no children are allowed to visit in the NICU to prevent the spread of illness. I knew also that I couldn't leave Eleanor because I was breastfeeding her round the clock and that I wouldn't leave her because she needed me more, but it still made it so hard to be split in two.
Two of my NICU friends Quinn and Lauren came down with the isolette to get Eleanor and take her back to the NICU. Poor Taylor realized then how serious this was and seeing his baby in that bed made it all so real and so much scarier.

We got settled upstairs and after several pokes they finally got the IV. Turns out Eleanor has HORRIBLE veins. They got the first round of antibiotics in her just in time because temp spiked to 104. She got a dose of tylenol and I got to nurse her and it started to go down, thank god. Dr. Go came in and told us her urine analysis came back showing lots of bacteria and white blood cells indicating that even though the culture was not back yet, the root of her sickness was probably a UTI. If that was the case she would have to have 10-14 days minimum of IV antibiotics in the hospital. I just broke down crying, she was going to have to go through alot more pokes and we would both be stuck there without Taylor and Henry for 2 weeks. I felt awful. I rushed out the door so quickly to go to the ER that I didn't get the chance to really even tell Henry goodbye and now he was going to have to be without me for 2 weeks?!  I felt guilty enough for leaving him for 2 days when Eleanor was born and turning his world upside down by bringing her home and his life changing so much and now I just vanished? Ugh, it still makes me so sad just thinking about it.

The next day we got the news that her blood culture had come back positive for bacteria. Whatever was making her sick was in her whole tiny little body at this point.  They weren't sure what type of bacteria it was yet but that she would still be staying for awhile. The whole time I was so grateful she was in the NICU instead of on the pediatric floor because then she at least wasn't being exposed to bigger badder bugs and flu and RSV. Not to mention I had my friends and coworkers caring for her and I knew she was getting the best of the best. We truly were treated like family there and I will be forever grateful.

 

My poor girl in her tiny little hospital gown. She was so weak.

By Tuesday her urine culture had officially come back positive for E. Coli as well as her sensitivity to determine the type of bacteria in her blood culture for the same. She was switched to different antibiotics that specifically attack the E. Coli and thankfully the repeat blood culture (she had to get poked nightly to recheck her blood cultures) from monday night had come back negative already, the antibiotics were already working really well and Dr. Go was very pleased with her turn around. She was awake and starting to act like her old self. She was even trying to sit up on her hands and look at me and to see her awake with her eyes open was the best sight ever!

We were told if she could have two negative blood cultures for 48 hours of growth each that we could potentially switch to oral antibiotics and finish them at home! YAY!

The main question in all of this is how did she get so sick, so fast, so young? Let's be serious, it's not like I don't know how to wipe a baby girl during diaper changes and Taylor has been super super nervous about having a girl and making sure he was doing diaper changes correctly so we know that surely couldn't be the cause. The infectious disease team consulted on Eleanor and came to round and speak with me each morning. The attending told me that 7-10% of newborns get a UTI within the first month of life. Who knew!? Not me. He explained it's more common in baby girls and also in breastfed babies. Breastmilk stools are really runny and mother's milk isn't plentiful in the first few weeks so there isn't a ton of urine to flush out potential bacteria from the runny stools and just in general from the urinary tract. I asked why we rarely see UTI's in NICU babies if this was the case, he reminded me that most of them are on antibiotics just in case and IV Fluids from the very start and this takes care of both issues. Makes total sense. But the fact Eleanor got so sick, he was a little more stumped. They started asking if we had family history of UTI's in our family and there really isn't much. Then they asked about kidney issues. DING DING DING!!! HENRY!

Henry has kidney issues, he has had hydronephrosis (swollen kidneys) since I was pregnant with him. We have been doing kidney ultrasounds and a few bigger scans since he was 2 weeks old and been watching him like a hawk but he has had no symptoms of trouble and no UTI's. The team decided to check Eleanor for the same issues or other ones.

Thursday we got her second negative blood culture back for the second day which meant that we could go home on oral antibiotics! Hurray! This whole time I had only seen Henry twice for about an hour. Taylor brought him up to have lunch with me one day and to have dinner with me another. It was so hard to be away from him and I cried and cried and cried that he was being shuffled from place to place and person to person to watch him so Taylor could be with me and Eleanor and sneak into work a little bit too. We did facetime a few times every day and thank god for that.

He was always happy to see me on facetime and he seemed super happy to see me and didn't cry when Taylor took him back home each time but I knew he missed me. When they took me to dinner, I sat in the back seat next to him and he grabbed my hand and held it to his face the whole way there and back in the car. Poor baby.

 That being said he got lots of time with his grandparents and Aunt-E and he had a blast with them which helped me feel better. He went on a few long runs with Aunt-E and even napped through one of them.

 

Before we could go home they did Eleanor's kidney ultrasound ( I slept through it, I didn't even hear them come in the room or anything) and then she went downstairs to radiology to have her bigger kidney scan done.

It's called a VCUG and it stands for voiding cystourethrogram. They insert a urinary catheter and fill her bladder with contrast and then put her under an X-ray machine and take pictures as she pees and watch where the contrast goes. Ideally is should all be squeezed out of her bladder and down and out, Eleanor's bladder squeezes urine down and out but also refluxes the urine back up into her ureters toward her Kidneys. She luckily only has grade 1 reflux which is the least severe and hopefully she will outgrow it. Until she does, however, she will have to be on antibiotics daily to prevent another infection that could scar her kidneys and urinary tract along with making her very sick again. This is after she came back from her scan right before we got to go home!

 Coming back home never felt so good!