I need to write this down while it's still very raw. I am hoping that writing about the past few days will help me make sense of what happened and will give me some clarity as to where things are going from here. I'm hoping that blogging about this will give all of you--beloved, supportive friends and family--a better idea of what we've been through, and will give me a chance to process the feelings that are still (even now, as I type) bubbling over. Tears. So many tears. What a hard few days it's been.
And in the back of my head, I keep telling myself she's going to be fine. She has to be fine. I talked for a while yesterday morning with the grandparents of a young boy on our floor at the hospital; the boy had been hospitalized for the past four years both in Detroit and now here in Miami as a result of leukemia and a flesh-eating disease that was wreaking havoc on his face and sinuses. I looked at my little Trudy in that moment and thought, controllable seizures. That's it. A seizure disorder, with more tests to come. Count yourself lucky. I wished that family strength and healing, knowing that they had a much harder road ahead of them than any of us could imagine.
But I'm getting ahead of myself.
My Mom taught me whenever delivering bad news to start by saying "everyone's okay." So, let's begin there. Everyone's okay. We are now all home. Trudy is napping. Being home is the best possible thing. We all got some good rest last night after two nights away.
Let me tell you about the past few days.
Monday, January 5
Trudy had been battling what we thought was a cold, combined perhaps with a growth spurt and some teething, since January 1st. She'd been sniffly and very sleepy. January 3rd and 4th had seen marked improvement. She was sleeping less and seemed more like herself. We were gaining confidence during those days that she was on the mend. On the 5th, however, she woke up with a rash covering her torso, arms, and neck. Bryn also noticed something funny happening when he took Trudy out with the dogs for their (the dogs!) morning pee -- he thought maybe she'd sneezed, or got something in her eye. Looking back on this now, we realize that this was her first seizure.
We were not able to get in to see our pediatrician but scheduled an appointment that day to see another pediatrician in the same practice. We loaded up and took the metro over to the clinic for a 1pm appointment. Here is Trudy on the train, happily eating lunch:
While in the waiting room at the pediatrician's office, I was holding Trudy and showing her the fish tank in one of the rooms when her eyes started blinking rapidly and she went limp. I yelled, "something's happening... something's not right." One of the nurses quickly ran out, grabbed Trudy, and rushed us back into one of the exam rooms. The seizure continued for a few more seconds once we were there. Several doctors and nurses assembled. I was terrified, and Bryn quickly realized that what just happened was similar to what he saw earlier that morning. The doctors told us to take her straight over to the ER (which, thankfully, was only a few blocks away; our pediatrician is on the UM medical campus) for a full "work-up" to sort out what just happened.
We walked our way over to the Holtz Children's hospital--the same place where Trudy was born just over 16 months earlier--and presented ourselves at the ER. We were quickly assessed and taken into a room to see a doctor. They took her vitals and a history from us. As we were waiting, Trudy had another seizure which the doctors were, again, able to witness. As horrible as it sounds, if this was going to happen, I was thankful that the episodes were occurring in front of people who had the knowledge and training to help us out.
The next few hours are a bit blurry. We had arrived at the ER around 2pm and ended up staying there until 9pm, when we were finally admitted to the hospital. There were so many tears. Bryn and I were so scared. It was awful to have to hold down a terrified, exhausted baby as they inserted an IV in her arm. She was so tired but couldn't sleep (who could?) amid the chaos, noise, and bright lights of the ER. Every stranger who came in wanted to poke or prod her. Rectal thermometers. Blood pressure cuffs. And the uncertainty. Oh, the uncertainty. That was the scariest part for us. Brain tumor? Brain cancer? Epilespy? My mind immediately went to the worst possible outcomes. Several times I felt myself, in some deep dark place, starting to say goodbye to this precious thing. I had to stop. Just because we didn't know much at this point didn't mean she was going to die. I felt my heart breaking over and over again. Bryn was a mess, too. The time in the ER was, by far, the darkest chapter of this entire ordeal.
We moved out of the initial triage room into another observation room still in the ER. We were told that Trudy would have a CT scan and a spinal tap to provide more information. They gave her a mild sedative (which she snorted into her little pink nose) and we were whisked away to the CT scan room. She would not be fully sedated but needed to be still for the scan. I stayed with Trudy the whole time, sang her songs, and rubbed her head while they were getting ready. She was so brave and calm. I remember singing her two songs, standards in our repertoire:
You are my Trudy, my little Trudy
You make me happy when skies are grey
You'll never know, dear, how much I love you
Please don't take my Trudy away
Oh, god. What was I singing? I had to stop that one as soon as the final line sunk in. It was like a prayer in that moment. Please, please don't take her away. Never had those words had more meaning than as I watched her all wrapped up, having her brain scanned.
The other song, a bit lighter (complete with frog-appropriate tongue movements):
Mmm-mmm went the little green frog one day
Mmm-mmm went the little green frog
(And so on...)
Bless her little heart, she started doing the tongue movement back at me every time. I don't think I'll ever forget that tender moment. The most precious thing in my life. Still playful, despite the circumstances. She made me smile in a moment when neither of us really knew what was going on. Trudy gave me hope, as I struggled to be optimistic and brave for her.
After the CT scan, a spinal tap. I had to leave the room for that one, but I could still hear the poor thing screaming just down the hall. After that, some antibiotics. At this point, our dear friend Niki came to help us out. What a gift, that girl is -- a true, true friend. She took Bryn back to our house to pick up some basic things and also took our pugs over to her house. When she first showed up, she had water and snacks in hand. (Niki, I can't even express to you how much that helped.)
After the exams were over, Trudy seemed to be in better spirits. I nursed her and we had a little rest. She ate some cheerios, cheese, and fruit, and was starting to get restless in the ER room. We took her out for a little walk and she seemed so happy just to be able to move and see people.
Around 9pm, we were admitted upstairs. We eventually got Trudy to sleep in her hospital crib. Bryn and I took a breather outside the room, and sat down together to talk, strategize, and eat. Trudy's sleeping was short-lived that night due to the constant interruptions to take vital signs and replenish her IV antibiotics. Bryn and I took what time we had to update family and check-in with each other. What was going on? How long were we going to be here?
We also caught the last few minutes of the world juniors hockey game. Priorities, I know. It was really great to see Canada take the gold. Bryn and I had watched every game in the tournament leading up to this big final. As silly as it may sound, those few moments of normalcy really lifted our spirits.
Where things stood, diagnosis-wise, at this point: it appeared that there might be a link between her cold/flu sickness and the seizures. Tentatively, it was looking like she might have roseola--a viral disease that can cause harmless (but scary, especially to parents!) febrile convulsions. We had no test results. The doctors were still not convinced of this diagnosis at this point since Trudy did not have any fever with the seizures (which, at this point, were still being described as "episodes.") More would be known once the CT scan results were back, the spinal tap fluid was assessed, and an EEG was performed to examine her brain activity.
Tuesday, January 6
The wee hours of the morning on Tuesday were among the worst. We were all exhausted. Trudy decided (and who can blame her) that she didn't want to be alone in the hospital crib. She was desperate to rest, so I opted to nurse her while lying down with her on the oh-so-comfortable convertible chair/cot in the hospital room. Thus began what ended up being a marathon of near non-stop nursing. My nipples are still aching. Looking back on things now, I breastfed Trudy more in the past few days than I probably have in the last few months.
(And an ironic (?) side note: The night before Trudy first got sick (December 31), I decided, for the first time in her life, to not breastfeed her before bed. Then, the next morning, she wakes up sick. I know, I know -- a coincidence. But the paranoid, irrational part of my mother brain can't help but feel a tiny bit guilty... We'd also started working to move Trudy from two naps down to one. Now, everything is out the window as we focus on her recovery.)
Trudy had two more seizures in the early hours of Tuesday morning. They both happened while she was asleep, which was really troubling. We called the doctors in both times they happened but they couldn't get in fast enough to witness them. They encouraged us to try and video record the seizures when they happened.
Morning came and Trudy was still pretty miserable. She had a bit of a break around 8am that day when she wasn't hooked up to an IV, so I took her out for a walk around the unit. What a sad place. There are few places more depressing than a pediatric floor in a hospital. Several screaming kids. Sad-looking parents. A lot of hustle and bustle by all levels of doctors. Since Holtz is a teaching hospital, there were medical students and interns everywhere, in addition to the residents and attending doctors. After our third or fourth lap around the unit, Trudy and I stopped to visit with the nurses at the station. While we were chatting, Trudy had another seizure. This one was far worse than the several earlier ones. It lasted for a full minute, involved more localized eye-twitching on her left side, and involved her whole body shaking. Bryn had been resting in our room, but ran out to catch the whole thing on video when he heard what was going on. Scary stuff. Trudy took a little while to come around after this event and, as you can image, was exhausted.
We were visited later that morning by pediatrics rounds and told of "the plan" for the day. At that point, the attending physician was not convinced she had a severe disease like meningitis, nor did they think that the episodes were caused by roseola due to the absence of any fever. An EEG was scheduled for later that day. The spinal tap fluid needed to be cultured and re-cultured over the course of several days, and then she'd need more bloodwork as the days progressed to rule out any viral infection.
The EEG was a pretty intense experience. A team of guys came into our room to set-up the sensors and a recording device. Trudy was due for a long-study, which meant she would be hooked up and room-bound for 2-3 hours while the sensors recorded her brain activity. Anyone who has interacted with 16-month old babies, even sick 16-month old babies, knows how difficult it is to contain the hurricane of activity and will-power that drives their little bodies. I knew it was going to be a tough haul. The sensors were hooked up to her head and then she was wrapped in this sock that covered the sensors and some receiving device. The whole contraption was very heavy.
We called Trudy our little "Rastaman" with the world's most expensive dreadlocks.
Thankfully, I was able to nurse Trudy to sleep a few times during the EEG. The Rastman headdress left her with a very sweaty head. And once the sensors were removed the following morning (they had to keep the thing on her past the 2-3 hour test just in case they had to repeat the EEG) she had two contact burns (or something like that -- two blisters) on her poor little forehead.
The entire ordeal was video recorded, too, so they could see what was happened and compare it with the brain activity read-outs. They definitely captured me scarfing down a scoop of Trudy's mashed potatoes which arrived on her lunch tray during the study. Trudy had fallen asleep on me while nursing and I was STARVING. I don't think fake mashed potatoes with suspicious brown gravy have ever tasted so good. I think I may have also picked my nose once or twice. And Bryn definitely farted. Oh well. I'm sure they've seen worse?
By the end of the day, Trudy seemed to be doing okay. She had another seizure while the EEG was recording which was what they'd hoped would happen (not that anyone wants her to have seizures, but if the machine was recording when it happened they'd be able to see the corresponding brain activity.) I was actually nursing her when the seizure happened and almost lost a nipple. Poor little thing clamped down as soon as the seizure started. Another mama merit badge?
Trudy sat up with me around dinner time and ate some of the hospital dinner - a strange steak-like meat with familiar gravy, accompanied by vegetables. I was so hungry that I stole a few bites here and there. I guess if you're going to eat anything questionable, a hospital is the safest place to take a chance.
Now, a kind of fun and unexpected thing happened throughout the day on Tuesday. Apparently it was El Dia de los Reyes and the hospital was celebrating by having three toy deliveries (one by each of the three "wisemen") throughout the day. Trudy was resting during two of the deliveries, but has come home with some really lovely toys which she was able to enjoy a bit while in the hospital. The first delivery really got to me. Was I now a parent of a sick kid? A kid who qualified for this kind of charity? I pushed those thoughts away and tried to just be grateful for the generosity. It really brightened the day and was an unexpected surprise. I guess if you have to be in the hospital, we picked a pretty great day to do so.
By the early evening, I was becoming increasingly agitated at the lack of information and was feeling really out of touch with whatever was happening with the doctors behind the scenes. I requested to talk to the doctor and expressed my feelings of helplessness. I felt like we were just sitting around, watching her have seizures and doing nothing. She said she'd keep us updated as information came available and told me that these things can take time to diagnose since the diagnosis is dependent on test results.
Our guardian angel Niki came by that evening about the same time Bryn left to check-in at home and pick up some more stuff for our stay. She and I walked and talked and I updated her on what had happened that day (she works as a Physician's Assistant). As we were coming back to our room, I saw our doctor and she said she needed to speak with me. The EEG results had indicated that Trudy's episodes were indeed seizures. With that information, Trudy would be started on an anti-seizure medication and scheduled to have an MRI. It was still very unclear as to what was causing the seizures. Though an MRI was the next step, there was no guarantee that it would show anything to explain the seizures.
That night, Bryn provided our broader network of friends and family on Facebook with an update. The messages that came in meant the world to us. Each note of concern and encouragement helped us remember that, no matter what happened, we were surrounded by people who would help us in any way they could. Thank you. I hope to have the time to talk to each of you individually. For now, please accept my (and Bryn's and Trudy's) sincerest thanks.
Wednesday, January 7
Wednesday early morning was a bit better than our first night/morning in the hospital. Bryn brought an inflatable mattress for me and Trudy to share, so I could nurse her to sleep and then continue to lie with her. We got some sleep from about 9pm to 3am, when the nurse came in for bloodwork. During that, Trudy's IV came loose which required us to take her to get it adjusted. Since she was awake, I took off the damn EEG sensors and sock (REBEL MAMA), and cleaned off her poor little sweaty, sticky head. They'd put some kind of wax-like substance under each sensor. Despite all that early morning chaos, I was able to get Trudy back to sleep around 4am until 7:30am or so.
I talked to Niki and my sister that morning (both more versed with medical lingo than I am) and wrote down a list of questions to ask during the morning rounds. Bryn stepped out to get coffee and, just as Bryn disappeared down the elevator, the neurologist appeared. He did an evaluation, watched our videos of Trudy's seizures, and talked about next steps. I was happy to tell him that the last seizure was Tuesday around 4pm; it appeared that the anti-seizure medicine was working. He told us that unfortunately there was no MRI time available this week. He recommended we be discharged and return as out-patients for the MRI. I expressed my concerns with the lack of diagnosis and he reassured me that he was comfortable sending us home with Trudy's seizures medically managed.
Morning rounds came and I was equipped with a really good list of question to ask. The answers provided a lot of clarity. Trudy's spinal tap fluid was clear; two days' worth of cultures confirmed this. Blood work was normal. EEG confirmed seizures. There was no way of knowing if whatever sickness she was fighting prior to the seizures coming out were related. Her rash was gone, so she could stop taking antibiotics. The pediatrics attending doctor felt confident sending her home with follow-up care.
That afternoon we were discharged, following a lot of questions and answers about where we were going from there. Next steps: schedule the MRI, follow-up with our pediatrician this week (we are scheduled to see her on Friday), follow-up appointment with the neurologist after the MRI, anti-seizure medication for a minimum of two years (which we picked up yesterday at the drug store.) I still have lots of questions for the pediatrician and have yet to fully review some of the follow-up seizure care documentation with which they sent us home.
Last night we all slept. Trudy was in bed by around 6:30pm following a nap in the Uber car home from the hospital. (Our driver was an awesome guy--a Cuban veteran who served two tours in Iraq and had two young kids of his own. My favorite thing about that trip home was listening him say the word "hooker" with a Cuban accent, while he described the sordid clientele he sometimes encounters.) Bryn and I were asleep sometime around 9pm, and we all slept until about 7:30am this morning. Trudy is doing just fine today, although she seems a bit wobby/dizzy and quite tired. Her medication has these listed as side effects especially for the first four weeks of taking it, so we are trying to remain confident that everything is okay.
Some general reflections:
- It is such a delicate balance as a parent between being overly cautious and not cautious enough. When do you ask for help? When do you tell yourself "everything's going to be okay." I guess I'd rather be "that parent" -- you know, the one who over-reacts and takes her hyperventilating baby to the ER only to find out the baby is constipated... true story -- than under-react and regret it. I'm glad Bryn and I trusted our guts and took her in. How "lucky" were we that the first real seizure happened with a host of doctors and nurses only a few feet away.
- It was really weird being back in the hospital where Trudy was born and where she was kept for a week or so after she came out. It brought back a lot of tough memories from that time. As was the case during Trudy's first stay, both Bryn and I found the experience of being institutionalized to be incredibly challenging. It is hard to surrender to a system that is, at times, more restrictive than it is helpful. And it is hard to know when to speak up and when to stay silent, especially since you are surrounded by people who possess medical experience and knowledge necessary to help your child. I did my best to advocate for Trudy at every step of the way, which really came down to two things: trying to preserve her sleep and avoid any unnecessary interruptions. And, second, breastfeeding the poor child. I quickly realized that nursing Trudy throughout this experience provided her comfort and security in a setting where those things were absent yet desperately needed.
- A difficult part of dealing with all this was receiving some information to suggest that Trudy was "developmentally behind" because she is not yet fully and independently walking. This was really troubling and, as far as Bryn and I are concerned, not at all accurate. Trudy is not developmentally behind. And this isn't just crazy parents thinking their child is perfect no matter what. She's a bit of a late walker, yes, but she's fine. She gets better at it every day. I'm eager to talk to the pediatrician about this. Our experience since Trudy's been on the anti-seizure medicine is that she's a bit wobbly on her feet but our understanding is that this is an expected and normal side effect.
- Again, a big shout-out to our dear friends Nick and Niki for all of their help throughout this. Amazing, lovely people. Generous, kind, and so thoughtful.
- SO much love to all you, friends and family, who texted and called and e-mailed throughout this ordeal. I felt so lucky to pretty much be in constant text-communication with my sister and Mom. And I know Bryn kept his folks and siblings in the loop throughout. Our dear neighbors also said they prayed for us, non-stop, as soon as they found out about Trudy. It means so much. Thank you again.
- We have heard from several friends and family who have kids/know people with kids who have experienced similar seizures but grew out of them at some point. We are eager to talk to these folks about their experiences and remain hopeful that Trudy's experience will be the same.
- From here? Pediatrician visit tomorrow. MRI is scheduled for mid-February but we're hopeful we can get her in a bit sooner. Our original neurology appointment was scheduled for early February but will need to be rescheduled in light of the later MRI date. Trudy gets meds twice a day. And hopefully Bryn and I can stop staring at her every minute of every day, just in case something happens...
- I have to give Bryn the hugest shout-out of all shout-outs. He was an amazing partner, support, and dad throughout this entire ordeal, and continues to demonstrate how much he loves that little girl. If I ever doubted his commitment to Trudy (which I don't think I ever have), this experience removed any questions. We cried together, we hugged each other. We managed to coordinate breakdowns so that we were never both in pieces. I feel so lucky to have him as a life and love partner, and Trudy is so lucky to have him as a dad.
Oh, and one happy surprise we came home to after leaving the hospital: our landlord installed a 14' x 21' cement patio in our backyard.
Hello party pad!
At the end of the day, despite everything, we still have so much to be thankful for. Trudy is going to be fine -- I now have to tell myself that every day. Otherwise, I won't be able to function. I love that little munchkin with an intensity I've never known before. I look into her eyes and see so much that lies ahead for our entire family. I'm going to do everything in my power to make sure Trudy has the brightest future she can. And I don't ever want to again have to think about what the world would be like without her. She's too important, universe, you hear that? She has so much left to do.