Babies Are Resilient

The UTIs

It was Christmas day. The day started out as usual, my baby had turned 8 months old 2 weeks before. After nap time around 3pm, I noticed how cranky they were, with facial features that were clear to me that they were in pain. I kissed their forehead and noticed it was unusually warm. I took their temperature, it was 104+. I looked at my husband and said, we are going to the emergency room. I made that call based on a piece of information I once read. If your baby suddenly shoots up a high fever, go to the ER. It was 2021, and we were still at the height of the pandemic. We got to the emergency room and the lines were crazy long, after all it was Christmas day, a pandemic and an overly worked exhausted staff. We waited over 2 hours in a section away from everyone, trying to keep my baby calm, but my mind was racing with what it could be.

Finally it was our turn, we went in, and all the tests were done, except for a urine test. I think they had suspected it was Covid, and so did the test and told me to wait for the results and basically that they can't do anything about it except to give some fever reducers. When I asked why they didn't do a urine test, they said, 24 hours should pass on the fever before they do it. We went home to rest, but no one slept that night. Baby was in so much pain, it seemed that they were getting painful cramps every 15 minutes. They refused to eat or drink, and they were crying so much that the early signs of dehydration started to show, crying with no tears coming out of their eyes. So finally at 5am, We decided it was time to return to the ER. Luckily it was empty that morning, the calmness felt nice. We went straight in, we even got a private room, and a urine test and an x-ray were done. Baby tested positive for a UTI, and the x-ray showed that they were constipated. After we got our prescription for antibiotics to go home, we were told to schedule an ultrasound as a precaution, but the first appointment we could get was January 10. 

January 8, as I noticed that my first born is running a fever, we got a message that evening from our daycare that one of the kids tested positive for Covid. We woke up the next morning and the first thing we did was get tested. We didn’t get the results in time to know if we needed to keep or postpone the ultrasound, but out of precaution I did mention it to the front desk and they did isolate us in a separate waiting room. I was glad we didn’t postpone it, because the ultrasound revealed that my baby has a duplex system, which means they had two ureters instead of one coming out of their left kidney and connecting to the bladder. In most cases I was told, “babies grow out of it” and it shouldn’t be a concern, however they told me to go see a pediatric urologist. I felt relief learning that bit of  information, but unfortunately that feeling didn’t last long when my baby’s temperature reached 106 a few days later. I called the pediatricians office and they directed me to go straight to the ER. As I arrived, I got the impression from the staff that they seemed annoyed with me. They were trying to tell me, fever this high is because of covid and that I should give the baby ibuprofen and be on my way. I insisted on a urine test to be done, and after speaking to a couple of nurses they finally agreed to do one. It was a good thing I insisted because it came back positive for a UTI, again! I was sent home with another round of antibiotics, and was left wondering what to do. 

That period was so hard on us. Ever since birth, this baby struggled, and it was up to me to research and advocate for them. After learning about tongue ties and that my baby had it and how it was a struggle to breastfeed and bottle feed. I started doing my own research and finding resources I trusted to teach me about the condition. I was able to point out torticollis and silent reflux to the pediatrician. I was able to notice that they weren’t rolling both sides, I was able to see that their body was a C shape which meant tightness on one side. I seeked, physical therapy, massage therapy, IBCLC and SLP and a chiropractor. I saw a chiropractor about 3 weeks before the first ER visit. They use a special scanner on the spine that tells you where issues may lie. For my baby, a problem was sensed in one of their cervical vertebrae and one of their thoracic vertebrae. We knew that the cervical vertebrae had to do with the torticollis, as for the thoracic vertebrae, it indicated renal problems which I was skeptical to believe at first, but later proved to be right, especially after the ultrasound confirmed the duplex system. And when the pediatrician ordered a VCUG to be done, it was clear that my baby had renal issues.

The Surgery

We finally made it to August with no more UTIs. Earlier that year, we discovered that my older child had enlarged adenoids that prevented them from using their nose to breathe. So we made a decision to have them removed. The surgery was also scheduled in August, a few days before my second childs. On August 11, we go to the hospital and have the surgery done, while my youngest, who had their scheduled surgery on the 15th, went to daycare, and brought home hand foot and mouth disease!! There was no longer a surgery on the 15th, it was postponed till November, around thanksgiving time. Between the hand foot and mouth and the new surgery date, my baby got the flu, and RSV all within 3 weeks of each other. And when it was time to do the surgery in November, the hospital called to do the pre op assessment to make sure my baby is healthy for surgery. The next day I received a call to reschedule the surgery. Turns out the anesthesia team refused to move forward and approve the surgery, because the latest strain of RSV created complications for kids who went under anesthesia. So the third date we received was January 23, 2023. 1 year and 1 month after the first UTI diagnosis.

Thankfully there were no illnesses between November and January, and we were able to do the surgery. 

When scheduling surgeries for pediatrics, they usually schedule the youngest earlier. When we had the first surgery date scheduled, our baby was 16 months and was the first or second in line. By the time we did the surgery, the baby was now a toddler, 21 months, so they were dropped on the schedule and was actually the last one scheduled for surgery for the day. And given that it was January, we hadn’t met our deductible for the year, so we had to pay a huge chunk to cover the copay. 

We had to be at the hospital early, and of course no drinking or eating for 12 hours. My poor baby was so hungry and being the curious little sweet, they were able to play and enjoy the toys that were available while waiting. You go through the waiting area where you check in, then they move you to triage and do the initial testing, nurses and doctors come introduce themselves to you, and ask you a few things, look into the child's mouth to make sure there are no loose teeth. We changed my baby’s clothes and I got dressed in the “bunny suit” to be able to take my child into the OR myself. Not realizing what was happening, my child started crying, sensing something major was about to happen. I couldn’t hold my tears, trying to focus hard on reciting a few verses from the Quran to make sure He doesn’t leave my baby’s side. I left the OR, left my baby, sobbing, feeling so helpless, and went outside to be reunited with my husband in the waiting room. I was growing impatient waiting for the surgery to be done and my mind couldn’t stop spiraling. Having OCD also doesn’t help. Finally the surgeon came out, looking very exhausted, but with great news. He said that the surgery was the right call after all, because the way the extra ureter was positioned wouldn’t have resolved on its own with time. He was also able to fix the valves to stop the urine reflux. The sense of relief was great, but anxiety was building up because they still didn’t call us back to recovery to be with our child when they woke up from surgery. We finally got called back, and I could hear my baby wailing as soon as we set foot in recovery. I go over and get on the bed with my baby and hug them. I was very upset about why they didn’t call us in the first place to be there with our child when they woke them up. It is common practice after a child's surgery, to not let the child wake up to strangers. My child was given a combination of painkillers that also included Valium. That helped them calm down until we went to the room to stay for two nights.

That first night was so hard. My baby couldn’t sleep, it was a mix of pain, not comprehending what happened and not understanding why they weren’t at home sleeping in their bed. I wasn’t able to comfort my baby, and honestly I needed someone to comfort me. My husband was able to join me after he put our oldest to bed, and we asked a friend to come over and be at the house in case they woke up. I am grateful for that friend. We need friends, we need family, we need community to help us through difficult times.

That night we barely slept. My baby was hungry and kept asking for food, which was great! We had to make sure they were drinking a lot of water. We took strolls around the halls, said hi to the nurses, checked out the play area, said hello to the fishes they had there, colored and watched fun music videos. We had to also wait and see if baby poops after the surgery, luckily i packed the portable potty, and because baby was used to sitting on it all the time, they didn’t mind it at all, and was able to poop out a decent sized poop that was great because we were released afterwards!