It all started with a stomach bug.
That’s how Zoey’s Tale began, November 22, 2017. ( Haven’t read that story yet? Check it out first before reading this Part 2 ) It was the beginning of a horrible nightmare, one we couldn’t wake up from, no matter how hard we tried. On December 12th we thought we had awoken from the nightmare when we were released from the hospital with a weeks worth of additional oral antibiotics, the promise of a healed kidney and Christmas at home.
We spent two weeks in holiday bliss, wrapping gifts and decorating for a great big Christmas dinner we were to hold at our house for my family on Christmas day.
Two weeks of blissful ignorance.
December 24, 2017
It happened so fast.
There were no previous signs. None, whatsoever.
We were just home from an afternoon walk, enjoying our Christmas Eve. Addie had been irritable but nothing out of the usual for a 7 month old who had been working on a few new teeth.
Suddenly, little Addilyn vomited. A lot. It’s like her whole entire stomach came up and out; I didn’t know she could hold that much inside her little tummy.
Immediately my Momma sense kicked into high gear and I was filled with not only adrenaline, but my entire being was filled with dread. No, no, no, no this all seemed too familiar. It had only been weeks since Zoey’s last vomit, it was too fresh.
I cleaned up Addie and started packing for the hospital. The sense of dread was all consuming, in my gut I already knew what the diagnosis would be. ‘I’m taking her to the emerg’ I told Nick while frantically packing the bag.
He thought I was jumping the gun, it could be anything and she had no fever. I didn’t care, the wound from Zoey was still in the healing faze, no way would I ignore the Momma Bear instinct, not ever again.
We got to the hospital and I told the triage nurse our story. The on call doctor happened to be our family doctor! The relief hit through the storm of emotions and we were seen right away. After what we had just been through, my doctor knew exactly how I would be feeling. He decided to rule out a UTI, I think perhaps to relieve my angst.
A nurse came in to put a bag on little addie, one that collects urine to check for bladder infections. As we sat in that hospital room, her temperature started to climb into a fever and she began to lose colour from her cheeks. Red rings began to encircle her eyes and Addie continued to vomit.
After what seemed like hours, Addie finally produced a small amount of urine. Small in size, but so large in my mind that it took over my whole world, because it was tested positive for a UTI.
The nurse came in to tell me and I completely broke down. He carried with him an IV pole as he told me the news. My doctor wanted to start her on IV antibiotics right away, after what had just happened to Zoey.
Why was this happening? How did this happen? I have two girls! I know how to clean them properly, had always been so careful not to wipe the wrong way or let them sit in a dirty diaper. How could I let this happen again?!
As I was breaking down in front of the nurse, he asked me if I wanted to talk to someone, call in a family member to be with me. It’s Christmas Eve! I was supposed to be hosting a great big family dinner, not having my little 7 month old daughter strapped to that pole. Not my baby, not again.
My doctor came in, passion and sorrow in his eyes. He said we could try something else this time. Because it’s Christmas eve, we could do an antibiotic injection and then start on oral antibiotics, that way I could take Addie home to enjoy Christmas. Perhaps the injection will be enough to kick start the fight against the UTI.
I hate to say I was relieved for my Little to get an injection, but I would do anything to avoid the IV pole. Besides, we caught this UTI before it had a chance to work its way up to her kidney. I was at the hospital at the very first sign of infection, unlike in Zoey’s case.
Addie hardly noticed the needle going into her little thigh, she was so sick.
I got a prescription for oral antibiotics, packed up Addilyn and basically ran from that hospital. After filling the prescription and picking up some fever supplies from the pharmacy, I took my baby home to Nick and Zoey.
Addie was sound asleep by the time I got home, fully enveloped in the comfort and relief that tylenol and advil can bring to a fevering child. Nick convinced me to take Zoey to the Christmas dinner I was supposed to host, now being held at my parents house only minutes away. Everything in me screamed to stay with Addie, but, she was with her daddy and fast asleep.
So I took Zoey to see her family so that she could indulge in the joy that Christmas brings to a child. I shed some tears with my family and shared in the relief that Addie was home, and the antibiotic injection would work its magic. She would be better in no time.
We made our escape early in the evening, as I told Nick I would be home by 8:00 pm to help him give Addie her oral antibiotic.
When we arrived, Addie was awake, and way sicker than I imagined her being. She couldn’t hold anything down, neither her antibiotics or advil/tylenol. Her fever was beginning to climb into the red and she wouldn’t drink any of her milk. As the hours crept on, the risk of dehydration climbed higher.
I spent the rest of Christmas Eve and into the early hours of Christmas Day on the couch next to my feverish baby, checking her temperature as often as she was awake, giving tylenol suppository when needed because she couldn’t keep oral medication down, and getting small sips of milk into her shivering body, hoping the day would break and bring a little bit of Christmas magic into our lives.
December 25, 2018
Dawn broke the long night and it was officially Christmas Day. We tried our best to keep it exciting for Zoey; she didn’t understand what was going on with her sister. Payton and Adam came from the island to be with us for Christmas. It was supposed to be a magical time, filled with joy and excitement. There should have been stories that sent laughter ringing through the air, gentle pokes of fun and catching up.
Instead it was silent.
Our doctor had text me first thing Christmas morning, wishing us a Merry Christmas and asking how Addie was doing. I know, pretty great doctor, right?
He asked me to continue trying to feed her milk, in little doses, so that she could keep it down easier. If she seemed to get worse, I was to bring her back to the emergency department or just take her straight to the Children’s ward in Vancouver, where we had spent so much time when Zoey was sick, just a few weeks ago.
She got worse.
My poor baby. She wouldn’t take her bottle. Addie was getting paler, as if that was even possible, and the red rings around her eyes deepened in colour. She was immensely uncomfortable and there was nothing I could do except hold her close, but her fever was climbing and I didn’t want the warmth of my skin to make it worse.
I was panicking. Everything in me screamed that this was not right. Deep down I knew that she needed more help than what we had first assumed.
So we packed. On Christmas Day we packed like we were going on a vacation. Multiple changes of clothes, laundry soap, food, snacks, diapers, wipes, toys, games, toiletries and phone charger. And we took our sick baby across the ferry boat to the Children’s ward at the hospital where we spent the longest two weeks of our lives with Zoey.
This time, I was prepared. When Addie started to fever, I had tylenol suppository I could give her. When she puked, I had a bag for her to puke in. By the time we arrived at the hospital, checked in and walked up to the Children’s ward, it was dinner time. We should have been sitting down to a small family Christmas meal, Zoey and Addie would be playing with their new toys and we would be sipping on a nice glass of merlot.
Instead, we were unpacking toiletries, trying to make a bottle for Addie and telling Zoey it wasn’t yet time to go play in the toy room. We were met by an unfamiliar nurse, and then an unfamiliar pediatrician came in to speak with us.
His first question was ‘Why are you here?’ Like he was mad we came; like my baby girl wasn’t sick enough for him to waste his time. I held back the tears as I explained how sick she was and what we had just gone through with Zoey, only weeks before.
He didn’t care at all.
The doctor went on to explain why fevers aren’t that scary, that Addie was a different child than Zoey, and we had jumped the gun by bringing her in. He asked me ‘what do you want me to do for her?’ The only thing I could manage to sneak out through my shocked rage was ‘help her!’
Eventually we worked out that she would get an IV overnight, because she was dehydrated and still not able to keep her antibiotics down. She would get IV fluid, to help with the dehydration, and antibiotics, to fight the infection faster, over night, and go from there. He expected we would be on our way home the very next day.
Within the hour they were ready to set up the IV. Nick took Zoey to the toy room and I held on tight to my littlest girl, while they placed the tiniest IV into the tiniest arm, and fit it with the tiniest arm board to keep the IV in place. Addie was a trooper, she didn’t even wince, and as much as I wanted to yell and scream at the pediatrician, I was grateful that he got the needle into her dehydrated vein on the first attempt.
Surprisingly enough, Addie didn’t seem to notice the IV in her vein, the arm board and netting covering her whole forearm, or the tubes and wires that were connected to her arm and toe for fluids and monitoring.
This was all so familiar. The beeps and bells that rang through the quieted Christmas halls of the children’s ward. The footsteps that sounded outside our door as the busy nurses did their job of keeping little children alive and comfortable. IV alarms, heart rate monitors, the low whine of the ambulances as they barrelled into the emergency department at the other end of the hospital. The scents and sounds, were so familiar, but no more so than the feeling of helplessness.
Once the fluids had begun, more antibiotics were given intravenously and tylenol kicked in, Addie was comfortable and able to slip into a deep, much needed sleep, in the hospital crib that was supplied with our room.
Zoey and Nick snuggled up in the hospital bed and I drifted into a restless sleep on the tiny plastic couch that I had already grown accustomed to, with the two weeks I spent on a similar one, just 2 weeks ago.
Merry F*ing Christmas.
December 26, 2018
The night was filled with temperature and IV checks, tylenol suppository doses and cooing softly to my sick baby as I rocked her back to sleep using the old creaky rocking chair the hospital supplied, time and time again throughout the night.
Morning came and with it, some relief. Addie had suddenly perked up! Her cheeks were rosy and eyes no longer held that glazed look they had only 12 hours before. The IV fluids and antibiotics had obviously done their job! The fevers had still been coming but were already getting further and further apart, plus losing intensiveness.
Maybe I had jumped the gun? But no, I would take any sort of negativity from the doctors to see my little Addilyn look the way she did just then after everything we had been through.
A new pediatrician came in to talk to us, this one also sharing the same opinion that we jumped the gun bringing Addie to this hospital and disturbing the other doctor on Christmas Day. As if we had no reason to be concerned after our experience, and listed all of the reasons why a high fever in a 7 month old baby didn’t warrant this much concern. I wanted to strangle him! He said Addilyn would get a scan done to check her kidneys, just because we were already here and might as well, then we would be released from the hospital the following day.
Nick and Zoey spent the better part of boxing day playing in the toy room while Addie and I waited the day away in between making bottles, changing diapers, snuggling, temperature checks and nurse assessments. The scan was quick and simple, we knew the routine, Addie was calm and still during the whole process.
When the pediatrician told us what was on the scan, I was not in the least bit surprised with the diagnosis. I had known all along that it was the exact same thing that Zoey had had, down to the same side kidney and the same type of abscess in the same place on her left kidney. And of course, she would be needing the necessary 2 week course of IV antibiotics. I was more shocked that my gut had been right the whole time, and couldn’t have been more proud that this time, I didn’t listen to anyone but myself to get the help my little bean so badly needed.
Yet, even after sharing this news with us, the pediatrician would not say he was wrong. Instead, he told me he would have rather stuck his head in the mud and let Addie carry on to see if oral antibiotics would help, but because the abscess had already been seen, they had no choice but to treat it! Wow. This guy was a real piece of work. We almost lost Zoey from this exact same thing and he wanted to turn away from helping a 7 month old with the exact same diagnosis?
Luckily there are protocols to follow and Addie was to get the help she needed.
December 27, 2018
Nick took Zoey home so that he could go back to work, as he had just taken two weeks off when Zoey was sick, just two weeks before.
Keeping Addie away from the IV in her hand was just ridiculous. I had to keep a sock on each hand, one to cover the IV so that it didn’t bother her, a sock on the other hand so that she couldn’t grab the tubing coming from her hand, and a soother in her mouth constantly to keep her from chewing on any of it! Never mind the heart monitor attached to her toe. The next 9 days crawled by.
Addie had only fevered for about 3 days in total, so the remaining 10 days in hospital were spent with a lot less stress. We had a lot of time to bond, 1 on 1, where we had never had that chance before. If she hadn’t been attached to a pole by a little tube that ran into her little arm, it would have been more of a mommy-daughter vacation. We snuggled, laughed, practised sitting up, played with toys, read stories and I spent A LOT of time building puzzles and watching TV.
A familiar pediatrician came on and could not believe what had been going on with the girls. Nephronia was very rare in itself, and had never been documenting in sisters before. He suspected their kidneys, for whatever reason, were built a little differently, believing this to be a genetic issue. There was no other explanation, as kidney infections were not contagious. Their story was spreading quickly through the chain of bladder and kidney specialist, astounding professional after professional.
Addie had only needed her IV changed once throughout the whole 14 days, and the new pediatrician had got it on the first attempt as well. We bonded even more this time with the lovely nurses, who were there to play with Addie so that I could grab meals from the kitchen or fill up my water. Nick and Zoey visited on the weekends to see us and this allowed me to fill up my food supply, do laundry and soak up the few hours of family time we were allowed.
Day 14 came and we couldn’t have been happier to escape, yet again, from the hospital. 4 weeks of tubes and wires, beeps and footsteps in the night, 4 weeks of sick babies and 4 weeks of helplessness rolled into claustrophobic confinement. The fresh winter air that filled my lungs on that crisp January morning filled my soul with such hope, I could have almost believed that that would be the end of our traumatic story.
It felt so good to come home and have the family together again. Zoey felt the need to ‘take care of Addie’ and smother her in kisses every chance she got. She was very upset that Addie had pokes in her arm at the hospital too, just like she had…
Feb 5, 2018
It was no different. There we were, yet again, zero signs that another UTI was building inside little Addie.
We had been home for 4 weeks and I had been regularly checking Zoey and Addie’s urine for signs of infection. Just 3 days before, I had had it checked and both came back looking perfect. How could it change so drastically in just a few days?
There was no doubt now that Addie had another UTI. It happened so fast. Again. One minute we were sitting down to eat dinner and the next, she was projectile vomiting with a raging fever. There was no warning.
The ground felt unsteady under my feet as I ran around collecting important items like her vibrating bouncy chair, diapers, making bottles, popping water and snacks into the diaper bag. The routine was not new.
Nick stayed home with Zoey while I raced Addilyn to the hospital, eyes stinging and a sinking feeling in the pit of my stomach.
By now, our small town hospital was familiar with our rare case, so took me seriously when I ran in with a very sick 8.5 month old baby. This time, however, the doctor on call wanted a different sort of urine test done to determine if indeed it was a UTI or not. Instead of simply catching it in a bag, she wanted a nurse to use a catheter to collect the urine so that there was no possible chance of an incorrect reading.
It was supposed to be fast and simple.
If I was to pinpoint the worst experience out of this whole nightmare, it would have been either when Zoey blacked out from screaming so much getting her second IV start, only to wake up to find her right hand was no longer usable, or the 2 hours the nurse spent trying to get a f*cking catheter into my littlest girl. It was so horrible it is still beyond words. That was the first defining time where Addie began to scar emotionally. That was the first time she looked at me with eyes so wild and helpless, so scared and frantic, she just yelled and yelled and pleaded with me to help her, all in those eyes. How could I stand there and let that woman try and try again when it clearly wasn’t working?!
Eventually the torture was interrupted when the lab came to collect blood. Addie was already so worked up from the trauma that she fought the man trying to collect blood from her arm. He ended up bursting a vein in one arm, so had to move onto the next. Her screams filled the hospital, bringing back with them curious onlookers who were constantly having to be shooed away. How could anyone be so senseless? Yeah, let’s go hover around the screaming babies room, watch while the mother tries to console her while the nurse attempts to put a catheter in, or the man tries to take blood from her bruised arm…
A second nurse came in with smaller catheter they had brought down from the maternity ward… I was in such shock that it took me a long time to realize they had been trying to get a regular sized catheter into a tiny little baby. That whole time, each and every scream, every failed attempt, that nurse had just kept trying, without even thinking to grab a smaller size.
The new nurse took over with the smaller sized catheter but Addie was too stiff and in too much pain. The tip of the catheter had blood on it from too many attempts, and that was the last straw. My adrenaline hit the roof when I saw that blood, my entire being screamed that that was not helping my baby, but torturing her. It should have stopped after two failed attempts rather than two hours of failed attempts and a shit load of emotional damage.
Enough was enough and I told the doctor she would not be attempting the catheter anymore, I refused to let another nurse touch my baby. I told her a bagged collection was all she would get, and I put the bag on her myself. I held Addie so tight as if I could hug away the emotional scarring and pleaded with her to forgive me for not stopping it sooner than I had. She settled into my arms and took her bottle enough to eventually produce a small amount of urine, which, like expected, tested positive for a raging UTI.
I asked that Addie be given an antibiotic injection to get us through the night, and for the doctor to put a call into the children’s ward where I would be taking Addie the next day. I could hear the doctor on the phone with the hospital and also heard her talking to the nurse, saying ‘she has been through enough’ right before she came over to inject one needle into her left thigh. After that, I took my baby home.
February 6, 2018
We had hope, of course we had hope, that maybe this time the infection hadn’t had time to form an abscess in her kidney.
We were accepted into the children’s ward with welcome arms, surrounded by familiar faces and the sounds and smells of a home away from home.
Nick took Zoey to the toy room while I helped the nurse and pediatrician set Addie up on the IV.
This time was not so easy.
Her veins were weak and had already seen two blows from the bloodwork the day before. They tried her hands first, blowing two veins in one hand and a third in the other. They tried to get an IV near the spot where she had had bloodwork done the day before, in the crook of her arm, without luck.
With each attempt, Addie grew stronger and stronger. There were two nurses plus myself holding down my little girl, as she tried to work her way out from under us, in a rage of terror and fright. Her screams grew louder and louder and the frantic look in her eyes pierced my heart like a handful of razor blades, each cutting in deep. On the fourth horrible attempt, they succeeded with an IV into her little foot.
Besides the pain from many needle pokes, Addie’s left leg was also swollen from the antibiotic injection the night before, and there was a large lump right underneath where it was given. To say the least, my poor baby girl was more than uncomfortable.
Addie was scanned later that day to show an abscess in the same spot as before, slightly smaller than the last scan from 6 weeks ago. No one knew how long it takes for Nephronia to heal, so the specialists were unsure if it was the last one healing, or a new one forming. So, to be safe, she was put on another 14 day course of IV antibiotics.
We knew the routine, were prepared for it, so set about food shopping, making quick meals for me to grab and go and setting up the room before we said our goodbyes. Again, Nick would take Zoey home so that he could work, while I stayed and cared for Addie. The two of them would visit in a couple of days so that I could shower, grab more food and do some laundry.
February 7, 2018
Our night went well, Addie seemed to be reacting even better to the antibiotics and fluids than last time.
Keeping Addie oblivious to the IV in her foot was easier than when it was in her hand. I used her sleep sac to keep her attention away, or had the bed sheets wrapped around her foot. I couldn’t leave her alone for 1 second because that is all she would need to pull out her own IV.
Nick called first thing in the morning, in a panic, because a little scratch that Zoey had across her face had suddenly started to turn into a crazy blister overnight. The scratch had stretched over both cheeks, under her nose, and a little on her forehead. In all the craziness with Addie, we didn’t realize that it was more than just a scratch.
Nick took Zoey to the doctor and had it swabbed, who assumed it was a staph infection. Cream had to be applied to her blisters and inside her nostrils 4 times a day, she needed to go on another round of oral antibiotics and her hands were to be washed with a specific soap multiple times as well. Her blisters were super painful, so she didn’t want anyone near her, never mind applying cream 4 times a day. Without having any help, Nick had to pin her down each and every time, while she cried and begged him not to put the cream on.
I felt completely split in two. I couldn’t leave Addie but felt sick that I wasn’t there to help Nick and Zoey.
Feb 11, 2018
The blisters got so bad over the next week, Zoey was in pain all the time, and wasn’t allowed to visit us in the hospital because a staph infection is contagious.
Besides constantly waking in the night and still dealing with the pain from the lump in her leg, Addie was feeling completely herself, spending her waking hours playing and giggling. She sat up by herself for the very first time while sitting in the hospital bed, surrounded by tubes and wires, while wearing a miniature hospital gown and socks on her hands to keep her from pulling the IV out.
Just before bed, the nurse came in to give Addie her last dose of antibiotics for the day. Unfortunately, the IV stopped working, so she was unable to put it through. The nurse talked to the doctor and because it was so late, and Addie was so tired, decided to do an antibiotic injection to get us through the night and restart the IV the next morning.
The nurse came back with a second nurse, and each had a syringe. I was confused, because just the day before, she had only needed 1 injection. The nurse told me that Addie weighed too much for just 1 injection… we worked out that the doctor in my small town hospital had crammed almost double the amount into one injection, because ‘she had already been through so much’. So Addie still had a large lump in her leg which was causing her pain. Thanks doc.
Feb 12, 2018
Feb 12, 2018, was one of the hardest days I had ever spent as a mother. It didn’t help that Addie had been up a lot in the night, I assumed from pain in her legs from the injections. It was only day 7 of a 14 day course of IV antibiotics and Addie needed another IV started.
The on call pediatrician tried, without luck, three times to get an IV into her tiny little veins, each one blowing after the smallest needle was inserted. She was at a loss, and decided that she would pass the task onto someone else.
We had three separate nurses, each known for their amazing IV starts, come in to ‘take a stab’ at getting Addie re-hooked up to the pole. No luck. At this point Addie had had 6 IV attempts in one day from 4 different people. She was covered in bruises. Absolutely covered. She had multiple blown veins in each hand, each forearm and each foot.
The pediatrician came in to say that perhaps Addie was done for the day, she would need two more antibiotic injections later that evening, and we would have to reassess the next day.
Being that Addilyn seemed 100% better, and no one knew if it was a new abscess or an old one healing, I begged the pediatrician to just let us go home. Enough was enough, it seemed silly to continue down this path of pain when we weren’t even sure she needed it. The doctor said her hands were tied, protocol was protocol.
Addie was in a lot of pain that night. She woke up often. I felt like I spent the whole night in the creaky old rocking chair, trying to soothe her back to sleep each time, all while doing my best to avoid touching her sore legs, arms, hands and feet.
Feb 13, 2018
After a lot of phone calls and begging of her own, the pediatrician came in to share the good news.. we were being released! We had to promise to take Addie in for 2 more antibiotic injections, because the medical team was adamant she needed them, but we were able to do that at our small town hospital. This was the best we could get, and I was taking that ticket out and running!
Nick came to pick us up from the hospital, leaving Zoey at home with my mom because she was still dealing with her crazy painful blisters. We went home with fingers crossed that this would be the last time. There were many doctors helping to solve this mystery and help us through these tough times.
It took quite a while for Zoey’s scars to fade from the horrible Staph infection that ran across her face, but now, after a year and a half, it is barely noticeable.
Zoey and Addie both had a procedure done to test for something called reflux, which Addie tested positive for. It is a condition where the urine shoots back up into the kidney instead of leaving the bladder, and is something that can be grown out of.
Addie was put on a low dose antibiotic for her to take daily, which she took for a year and a half, right up until a couple of months ago when we decided it was time to take the chance and remove it from her system.
We have found out that Zoey has permanent kidney damage from her intense kidney infection, but Addie’s seems to be healthy at this point.
It has been a year and a half since either of my babies were attached to a pole, but I couldn’t forget each and every detail, no matter how hard I wish the memories would fade. There has been lots of worry, dozens of urine tests, and a lot of emotional work.
Addie struggled with connecting to people after her second time in the hospital, she is still beyond shy, but how could anyone blame her? I see her finally coming out of her shell now at 2.5 years old!
I have high hopes that Addie has grown out of her reflux, and both girls will live a long and healthy, kidney infection free life!