Surgery: Round 2

Honestly, I don’t know how to write the next part of Margot’s story. It isn’t that I don’t remember, that it is confusing, or that it will be too detailed or intricate to track. All of that is true, but not the reason I am struggling to write it out. It boils down to not knowing how to put emotion back into the story. This is the part of the story that the doctors cling to and want every last detail (symptoms, medications, tests, who saw her, time frames, etc.). I can tell it, and I don’t miss a single detail. I can name every antibiotic she was on, the tests done, the results, when symptoms began, and even the highest and lowest fever without any notes. I tell the whole story a lot, but in this part of the story, I make sure the doctors, nurses, therapists, and everyone know and retain it. Doctors don’t want emotions. They want the facts. Yes, they care about you and your child, but emotions won’t help them solve the puzzle; the facts will. I never thought I would use any useless (and incorrect) knowledge from watching House, but I learned that no detail is too small. That one detail may be the answer to this riddle. So when a doctor says those magical words, “What has been going on?” I take a deep breath and begin slowly, in great detail, and coldly.

I want them to know they can trust my words and information and accept it as facts, not as emotions taking over, and that I am not just another irrational first-time mother. So, as I begin this next part, please be patient. I have turned off the emotions, but I pray they will flow out now and allow you to connect with her story and see how these events change how Kyle and I think, act, pray, plan, and raise Margot. We have to limit emotions so we can make decisions because emotions are messy and would have prevented us from making progress, but we need to go back and add emotions to previous events and begin to process them. So here is my first attempt.

Summer. For most adults, it means going to work and maybe taking time off for a family vacation or a weekend trip to the pool. As a teacher, summer is my motivation. It used to mean pool days, reading 2-3 books daily, trying new recipes, etc. This year, though, it meant spending every day with my baby. I like to say I make plans, and God laughs. Not in an evil way, but in a “Colleen, you make plans and have everything mapped out, but remember you need to trust in me. Whatever is going to happen will happen, and in the end, it will be better than your plans” sort of chuckle. I had plans: trips to the zoo, the pool, lots of walks, getting iced coffee, going to parks, etc. That wasn’t what was in store. God laughs/chuckles. The first half was helping Margot recover from head surgery and the 4-month sleep regression. The second half was spent in and out of the hospital. Cue the anger, disappointment, and frustration all geared toward God. I know part of this is teaching me how to rely on Him. I know He did not cause this to happen; it is part of our sinful world. I know He will use this for a much greater purpose than I can see. BUT, I also know I am still allowed to throw my temper tantrum and be angry. God wants to know our hearts and minds. Yes, He already knows them, but He wants us to be open and share them with Him so that we can heal with His help. Now, I still have my angry moments. Just ask my husband and my parents…I have spent many hours yelling and crying, telling them to let me be mad. Thankfully, I married a VERY patient man who knows that once I get it all out, I stop seeing red, take a few steps back, and can think rationally-ish, and if I can’t, he is there to help me think rationally. My parents, thankfully, raised three girls and have an excellent understanding of how to handle the irrational. My mom suggested that I start journaling. Literally my least favorite thing because

A) I lack the discipline and commitment to journal when no one else reads it

B) The thought of writing down what I am thinking is scary

But Mother knows best…and deserves to see that in writing (Yes, Mom, you were right…). Writing all this has helped me begin to think through it all and work through the emotions and trauma of it. It is traumatic. I shouldn’t be taking my baby to the hospital for nine different specialties or for multi-day stays.

But I am beginning to see how God is using this and how I can find joy in the unknown.

My mom has also been helping me find joy. I call (probably more often than I should), and she listens to every word and then says there is the joy for the week or the day. Whether it is something school, home, or doctor-related, we look for joy.

Now that I have side-tracked and avoided the story for several paragraphs, it’s time to dive in.

July 23rd, 2024: Margot began to spike a low-grade fever and diarrhea and felt blah. She wanted nothing to do with her toys and only wanted to snuggle. We ended up at the pediatrician’s office. I felt like a crazy mom, but the doctor was so good and calming. She figured Margot had some virus and would knock it in a few days. She said to keep nursing her, keep using Tylenol only when she is uncomfortable, and follow up in 2-3 days if she isn’t better or gets worse. I felt so much better having someone look at her and confirm she was all good and her head was not an issue. The scar looked fantastic, and Margot was healthy outside of this little GI virus. The next couple of days went by, and Margot was not improving; we called the doctor and got an appointment for the 30th if she wasn’t any better, but according to everyone, she would be better by then. At this point, Margot was beginning to fever only during the day, had several watery poopy diapers, and was losing all interest in playing. The doctor ran stool samples, and everything came back negative. At this point, we decided to give her a couple more days because it could be lingering, but the fevers during the day only showed improvement.

August 3rd: Margot was still sick, and Kyle and I didn’t know what to do. She was becoming fussy and uncomfortable. We decided that on Monday, we would go back to the pediatrician and ask for more lab work to be done. We spent the day celebrating my parents' 40th anniversary. We got home late and transferred Margot to her crib. We noticed her scar was beginning to go from a light healing pink to red with a tiny little white dot. Pus. We wiped it away, waiting to see more leak out, but nothing happened. We decided to put her to bed and call the doctor in the morning to see what to do. We knew at this point they couldn’t do anything. Nothing would change overnight.

August 4th: We went in to wake Margot. She was sleeping so peacefully. I’ll be honest; I always say it’s a moment I will never forget, but it is fuzzy. So much happened that day. It went so fast and so slow all at the same time. As we picked her up, we noticed her head was soaked. It was more than sweat; her crib was soaked. Her head was covered in a clear, jelly-like substance. I saw the fluid leaking from her wound. It was at that moment we both knew something was seriously wrong. I called the doctor and explained what was happening. I tried to remain calm, but I knew I was the opposite of calm. My voice was shaking; I was terrified. I could barely explain what was going on. The doctor said we needed to come in immediately. We had no idea what to do first. I fed Margot, and Kyle got ready for the day. We grabbed clothes for Margot, a bottle, and my pump and rushed to the ER. This is where everything moved so slowly and yet so fast. They admitted us immediately and got us into a room in what felt like record time. If you have ever sat in an ER, you know it takes forever to get a room. It turns out that Sunday mornings at about 10:00 are the perfect time to go to the ER. Within an hour, we were in a room and meeting with doctors, and that’s when life slowed way down. Blood tests, IV placement, and having to wait for consults. It took all day. Margot did amazing. We were stuck in a tiny room with hardly any toys and no quiet place to nap, and people coming in and poking and prodding her every hour. The ER doctors came in and said that she was stable and looking great (This is a phrase I have come to hate. Margot looks great no matter what until she has a 105-degree fever, and even then, she will still laugh and smile at you). They had called for a neuro consult, but it would be a while because they were in surgery. Hours continued to pass, and finally, a neurosurgery resident walked in. Her head had stopped leaking by now. It was about 4:00 pm. Her incision was hot, angry red, swollen, and had dried goop on it. That was when I heard that phrase again, “She looks great! Scars can turn different shades, but it looks good.” I was flabbergasted. I think my jaw dropped to the floor. I had him look at pictures I could find to prove it did not look right, but he insisted it was fine. He said plastics would come by, but everything felt fine. Within 30 minutes, a plastics resident appeared and immediately told us this was not normal. He took several pictures and called Dr. Pearson. This is when everything began to move quickly. The resident popped back in, saying they wanted a CT scan to see what was happening and that she wasn’t allowed to eat in case we had to do surgery. It sounded like a slight possibility, and the CT was a precaution. At this point, my parents arrived, and Kyle headed home to get pack bags. My mom, Margot, and I headed off to CT around 7:00. Remember how I described watching her enter the big machine at 21 days old? This time was worse. I didn’t know what was happening to my baby. I didn’t know what was wrong with her this time. I wasn’t prepared, I couldn’t prepare. So there I was, watching my baby in that machine again and trying to be strong for her while my mom held my hand and tried to be strong for me (she was way better at it). Even as I am writing this, I am still struggling not to cry because so much has happened since. This feels like the beginning, though.

Within an hour, we were told Margot was having surgery. It was 9:00 when we began walking across the hospital, and I was texting Kyle she was having surgery and to hurry back here. I refused to let them wheel her into the crib; I had to hold her. It was my way of keeping control and letting her know she would be ok. As we entered the pre-op room, doctors and nurses came flooding in. Taking vitals, gathering her history, last meal, allergies, comfort items, etc. Shortly after this, the first familiar face of the day appeared. Dr. Pearson. I don’t know if I instantly calmed down, but the way I remember it is he walked in, and I almost immediately relaxed. My parents might beg to differ, but a sense of peace was there. The Lord allowed our doctor to do her surgery and to make sure our baby was ok. He told us at the beginning he would be here for us no matter what. This was the proof. It was later that night we discovered he had been on vacation, had just gotten home and come straight to the hospital to do Margot’s surgery, and was leaving again the following day. He introduced the neurosurgeon for the day. Dr. Isaacs. I’ll be honest, I was skeptical. He didn’t know Margot; he didn’t know every detail about her like Dr. Pearson, but he had remained calm that morning when talking to a hysterical mother, and he spent the better part of this stay and the following stay trying to get Margot to smile. We love Dr. Isaacs. Dr Pearson explained we had two options. He would go in, complete the washout, and remove the springs if there was any hint of infection, or he would do a washout and leave in the springs if there were no signs of infection. He wanted the springs out because tiny cells of bacteria could hide in the springs without us knowing and cause another infection. We agreed to get rid of the springs. At this point, we decided she had an infection, and it was too big a risk.

So, at 10:30, we began the dreaded walk to send her to the OR. It was quiet. No one else was here. I remember handing Margot to the nurse; she had no idea what was happening. She just looked at Kyle and I like why are we not in bed. As she walked away, I began sobbing. Not quietly. More like the distraught mother you see on TV who is screaming and falling to the ground. Maybe a step down from that. My baby wasn’t supposed to be in surgery. She had months to go with her springs. We sat in the empty waiting room with my parents, Kyle’s mother, and his sister. Waiting to hear she was going to be ok. I don’t remember what time surgery ended. It had been a couple of hours. Dr. Pearson walked in and let us know Margot was doing well. He said the good news was no build-up of pus in her head. As they opened, a clear fluid called serous fluid came out. Serous fluid is produced by the body to stimulate healing and moisten areas. Typically, the fluid is drained by the lymphatic system. Margot had too much fluid, and while the very edge had signs of infection, the rest was clear. He explained that every test would be done on the fluid to determine why it was building up and if there was any bacterial, viral, or fungal infection. He had removed the springs, and her head appeared to be where they needed it for spring removal. This was a huge blessing because she would have needed a helmet or more surgery if the springs hadn't fully expanded. Springs were not an option because her head needed time to heal again, and it would be too late. He also placed a JP drain to collect serous fluid and prevent it from building up again.

We reached our room at about 1:00 am and got checked in while waiting for Margot. They kept us over the next few days to discuss the cause of her symptoms, meet with neurosurgery, infectious disease, and plastics again, and complete an MRI. Because the fluid was clear, they were not worried about a widespread or bone infection. Still, they determined an MRI would allow them to verify no signs of infection and the proper positioning of her skull. So, on August 6th, we headed back to the pre-op for Margot to go under anesthesia for the 3rd time since June. Her MRI was clear. Margot was considered to have no signs of infection. Infectious disease and neuro ran every test, and all came back clear. Margot had no infection in her head. They decided that maybe her diarrhea, fever, and rash were a bug unrelated to her head, or at least it was no longer an issue, and we couldn’t connect any of it. For me, this was a sticking point. I couldn’t let it go. They ran extra tests trying to figure out that cause but couldn’t. Margot had no infection. Period. No head infection. No gut infection. Nothing. She was on antibiotics, healing well, and her drainage was going down. We were heading home. We had no answer about why, which was terrible to accept, but it was life. So there we were, August 8th, packing up and heading home.

Now, I have always struggled with anxiety, and Margot had caused a slight increase in that anxiety early on. But now, it had doubled. I couldn’t leave her lying on the floor without panicking. Night time? I didn’t sleep. I watched the monitor constantly. I needed it with me everywhere I went. I just wanted to protect my baby and keep her from ever ending up in the hospital again. Yet 48 hours after returning home, Kyle and I took Margot back to the ER. Anxious didn’t even begin to describe how we were feeling this time.

August 10th-14th: Margot had a fever that evening, and her diarrhea returned. This time it had a few flecks of blood, hardly any, but within an hour, she had three poopy diapers, and the fluid in her drain was increasing. They immediately admitted us. Turns out Saturday at 8:00 pm…also not too busy. It wasn’t too long till we were in our room. The next day, we met our third neurosurgeon. Dr. Sribnick. At first, he told us she looked amazing—my least favorite words at this point. But I couldn’t disagree; Margot lit up when he walked into the room. She was the happiest baby and smiled so big at him. She was begging to be sent home. Within 24 hours, though, her demeanor shifted, and she was angry, uncomfortable, and had no personality. Our nurse was fantastic and fought for us. She paged neuro constantly and made them see her. She is the reason Margot got fluids. The next day, we saw all three of our neurosurgeons. They agreed Margot did not look good and ran several tests. They checked again for C Diff, bacterial, viral, and respiratory signs of infection, called the infectious disease doctor. Nothing. Finally, they decided it was her antibiotic. Within 24 hours of removing that, Margot began to perk up, and we went home. They referred us to GI in case it happened again because it was not her head. They also joked that Margot was not allowed to meet the other half of the neuro team. Three neurosurgeons was the max. I’ll be honest: I got frustrated with each doctor at different points, but Dr. Isaacs became so invested and worked hard to get Margot to smile. He genuinely cared about her. He didn’t need to come to her each day during this visit. Dr. Pindrick has been brainstorming with us every step of the way. He wanted to understand everything and checked on us during both of these stays every day. Dr. Sribnick listened carefully to an anxious mother who wanted her child better. He was willing to run tests, seek answers outside the neuro field, and not just pass her off. He tried to find answers and wanted us to get her help. These three doctors took excellent care of our family. They wanted answers and believed they had solved the problem. Unfortunately, we would be back 2 weeks later for a much more extended and challenging stay.

Margot’s story is filled with ups and downs. As I typed up this part, I needed several breaks. Reading through texts and pictures during this stay was draining and mentally challenging. I ended up cutting out a lot of details about her stay, some of the challenges, and the tests she completed. Partially because not all of Margot’s medical history needs to be on the Internet and partially because there is so much to explain. I’ve done a lot of research since this started and worked hard to comprehend each test, blood count, lab report, and doctor’s note. I don’t know how to explain it efficiently without losing everyone. The next part of her story will have more details and facts and less room for emotion for it to make sense.