Remi’s Next Surgery

It’s been almost six weeks since he had his surgery. Today he had another MRI and a follow up appointment with a neurologist. They both went well. There are still a lot of unknowns, but there are also a lot of things that have become clear to us. We learned that he definitely has porencephalic cysts (so, Porencephaly), and he has had them all along. The new MRI showed that he has four, and the neurosurgeon who did his surgery was able to connect two of them with the shunt. So two of them are draining and showing improvement, but two of them are going untouched right now.

Apparently it’s pretty incredible that they were able to get two cysts on the first try. So that’s awesome, and we’re pretty thankful for that. But because of the two that aren’t draining, he needs to have another surgery. What his surgeon will do this time is go in with a camera through the same incision, and poke holes in the other two cysts so that all of the cysts will connect and drain through the same shunt, rather than having to put multiple shunts in.

The surgery is set for April 11th. We wanted to have it done sooner rather than later to give Remi the best chance as far as his development is concerned. We want the extra fluid to be taken care of so his brain can do what it needs to to heal. We don’t know that it has slowed his development necessarily, and we won’t for a while. This is all still a waiting game. So that’s that. We didn’t get bad news, and we didn’t really get good news — we kind of just got news.

As far as normal life is concerned, Remi is doing really well. He’s been a lot more alert lately and he smiles all the time now. He also likes long walks on the beach and watching the sunset. But really, we love him and he’s a really happy baby. Thanks to everyone who’s kept us in their prayers and been so supportive. We truly appreciate it.

Why Remi has a badass haircut

Our son is three weeks old at the time of writing this. I think it’s safe to say it has been the most challenging three weeks of mine and Caleb’s life. I wanted to share our story so that I can remember it all later on (though I think it will be hard to forget), and also so that any one interested can get the details straight from the horse’s mouth. It’s kind of a long story, just a heads up.

We planned to have a home birth. We found a midwife whom we met with regularly throughout my pregnancy, took a home birth class, bought a birth kit, and set up a birth tub so a water birth would be an option. This was our plan, and for most of my labor, things went as planned.

I woke up at six in the morning on Friday, January 31st, to some contractions that couldn’t be ignored. It was the day after my due date, and I kept thinking, “Is this it? This can’t be it. Is it?” I couldn’t sleep through them because they were too distracting, so I got up and made biscuits, did laundry, dishes, and cleaned anything else I could find. I just tried to stay busy. By 8am, I knew he was really coming. Things were progressing slowly, though. I contacted my midwife and gave her details of what had been going on. She said, “Ok, this is the phase where you pretend like it isn’t happening. Go do fun things today, and keep yourself busy. Go see a movie, have lunch with a friend, go shopping… maybe all of the above!” I woke Caleb up and said, “You shouldn’t go to work today. I’m pretty sure this is it.” So he stayed home and we went to lunch, got coffee, went to the park, and then walked around our neighborhood. They were all nice distractions and at that point I was still talking and laughing in-between contractions.

Around 4 or 5pm, my water broke. This being my first baby, I wasn’t sure if I had just uncontrollably wet my pants or if it was my water. It was my water though, so yay bladder control. Time went on and things got a bit more serious. Contractions were getting stronger. My sister in law/bff got to our house some time after dinner, and my midwife showed up around 9 or 10pm. I really had no concept of time at this point. I was focused and gearing up for whatever the night held. More contractions, more contractions, more painful contractions. My midwife suggested lots of things for me to do to try to keep things moving along and progress quicker. I tried them all. Even getting dressed in winter clothes, putting shoes on my unbelievably swollen feet, and going for a walk through my neighborhood through some of my most painful contractions. The main thing I remember during that walk is throwing up in my neighbor’s gardenia bushes. Whoops.

Some time after our walk, my midwife checked and told me I was nine and a half centimeters dilated. It was encouraging to hear that, but she also discovered that the baby’s head was in a place that was making labor a lot harder than it needed to be, and part of my cervix was blocking him from moving down. I did everything I could to get him to move. We worked for hours. Finally, I felt the urge to push. That unmistakable thing women talk about that I couldn’t imagine until it hit me. So, I pushed, and I pushed, for what felt like a lifetime but was really about 2 or 3 hours. Nothing was happening. Our midwife checked again and said something along the lines of, “He’s still blocked. You’re both healthy and fine, so you can keep trying if you want to. Your other option is to go to the hospital and get an epidural and get some rest”

Sad times. I was so worn out, and felt like I’d given it everything I had. Little man was stuck, and I was exhausted and in tons of pain. It had been almost 48 hours since I’d gone into labor and I’d had almost no sleep. So through a lot of tears, I told Caleb I couldn’t do it any more. I wanted sleep more than anything, and we decided the best thing to do was go to the hospital, have an epidural, and hopefully that would let me relax enough to fall asleep and let labor progress in the meantime.

So that’s what we did. We packed a quick bag, and hightailed it to the nearest hospital. We got funny looks when we arrived and answered all of their questions with responses like, “No, I haven’t had any prenatal visits. No, I don’t have a primary doctor. Yes, we planned to have a home birth. No, we weren’t going to come to the hospital.” The first doctor that saw me asked why I changed my mind about home birth and I said, “Pain. Give me an epidural.” He laughed. I had gone from 9 centimeters dilated, back to 5 in under an hour. They gave me the epidural and I got some sweet, sweet relief, and even a nap. I kept thinking “Thank you, God. I think I’ll actually make it.”

I progressed quickly without feeling anything once the epidural started working. It was great. I got to 8 centimeters in a short amount of time, and the nurse said, “Looks like it won’t be long now. Let me know when you feel like pushing.” As I got closer, the doctor came in and checked and told me the same thing my midwife had – that the baby’s head was being blocked by my cervix. He told me that he thought I had a really big baby, and that my pelvis was too small to deliver him naturally. I didn’t believe him. He let me keep trying because I told him a C-section was my last resort.

I finally reached the pushing stage for the second time, and gave it everything I had for three hours straight. My Mom, Caleb, Bekah, and my midwife were all telling me how great I was doing, and telling me how I was getting closer, and giving me tons of encouragement. Then the doctor comes in, looks me in the eyes, and says, “It’s been three hours, and you haven’t progressed at all. You have two options, keep going for a little longer, or have a C-section.” Hearing that I’d made no progress after feeling like I’d come so far made my heart sink. I knew he wasn’t coming out the way I wanted him to. So I said that I wanted to have a C-section, and they started prepping for surgery.

Which, by the way, was a terrifying experience. The doctor read the risks to me, and I signed without a second thought. I pretty much didn’t hear anything he said. All I could think about was how much pain I was in and wanting it to be over as quickly as possible. I didn’t even know that there was a risk of never being able to walk again (albeit, very slim) until Caleb mentioned it a week later. It felt like within minutes I had been moved, drugged up, pinched, moved again, arms strapped down, more drugs, and excruciating contractions all in between. I kept asking for Caleb and they kept assuring me that he’d come into the operating room once I was all set up. That’s the last thing I remember – tons of white light and lots of nurses and doctors talking.

They ended up putting me to sleep, which I had no idea they were going to do. So, Caleb waited outside for 45 minutes while they delivered our son, and he missed everything. So did I. Remi Bennett Loffer, weighed 9lbs 12ounces, measured 21 and 3/4 inches long, and had a whopping 43 centimeter head. Woof. We did not see that coming. They brought him out to Caleb after he was all cleaned up and they told him that Remi had an enlarged head. Which was basically the sentence that started a week long nightmare, and the start of a life we weren’t expecting for our son.

I was brought back to my room and I could hear people talking but couldn’t open my eyes or move. I heard Remi crying, and Caleb was talking to my parents. I was dying to see and hold him. I felt so cheated that so many people had met him before me.

When I started opening my eyes, I saw my parents and I looked to my left to see my husband sitting skin to skin with our new baby. Which is what I wanted to do and couldn’t for obvious reasons, so I was so thankful that he decided to “hippy up” and take my place for him. Finally when I could open my eyes long enough and didn’t feel like I was going to drop my son, I got to see and hold him for the first time.

We stayed in the hospital for three nights and we were never left alone. There was always a doctor or nurse coming in the room and mostly messing with Remi. It felt like they really wanted there to be a problem. Every time someone would come in the room there was something they needed to test him for. He was poked more times than I have been in my entire life. He passed every test, despite their determination to find a problem.

Here is where things get really scary. Days and nights in the hospital were a little bit blurry. They told us because his head was unusually large, they suspected that he had a condition called Hydrocephalus, which means “water on the brain.” Neither Caleb or I had ever heard of this, and I was immediately struck with fear. They wanted to do an ultrasound and possibly an MRI to see if that’s what it was, and if they could see anything else. So two ultrasounds later and he was diagnosed with Hydrocephalus, and they also told us that they thought that he may have Porencephaly – a rare disorder characterized by cysts or cavities in the brain.

Now we were terrified. He seemed so normal from the outside. Everyone told us how healthy and great he was. It was so hard to believe anything could be wrong with him. We went from having a normal baby and being so relieved that after about 64 hours of labor, he was finally here, to feeling like our brand new baby had been given some sort of death sentence. The neurologist who came to our room to tell us that Remi needed to be transferred to a hospital uptown for an MRI was not empathetic at all. He lightened up a tiny bit when he came back an hour later and realized we’d been sobbing since he left. I had Remi Sunday night, Wednesday morning I was discharged and a team from ICN at Presbyterian uptown Charlotte came and put Remi in an intensive care incubator, then he was transferred in an ambulance that neither Caleb or I were allowed to ride with him in.

My mom was awesome enough to be our taxi for the day since we’d slept so little over the course of six days. Remi had his MRI that Wednesday night. It was nerve racking. We were told they’d have the results the next day, and we’d go from there.

The first night home without him was the hardest. Not that any of them were easy, but coming home from the hospital without a baby either in my belly or in my arms was not what we’d planned. Our house didn’t feel like our house. There were reminders everywhere that Remi wasn’t with us, but he should have been. Sleeping was nearly impossible, regardless of how badly we needed it.

We got up first thing Thursday morning and went to see our little man and wait for MRI results. We met more doctors, and the results came back and confirmed that he did have Hydrocephalus. Both sides of his brain were enlarged due to extra fluid, but the left was a lot more extreme. Hydrocephalus can cause seizures, brain damage, and all sorts of other scary things if left untreated. To fix this, they wanted to put a VP Shunt in his head that would drain the extra fluid to another part of his body. It’s a tube they put between his brain and his skull that goes from the left side of his head, behind his ear, down his neck, and into his abdomen.

We gave our consent, and the surgery was set for 7:30am Friday morning. We got up bright and early that day and drove to the hospital as quickly as we could so that we could walk down to surgery and be with him before they took him back. I tried really hard to be strong for him, but of course as soon as we got to the waiting room I lost it. I had my first surgery at 23 years old, and my son was having his at 5 days old. Both Caleb and I’s parents came and sat in the waiting room with us. Parents supporting parents. It meant so much to have them there.

There was a big monitor in the waiting room with numbers on it that represented the status of each patient having surgery at the time. Of course I checked Remi’s every five minutes. After half an hour, the receptionist came and told us they had started the surgery and it was going well. More time passed and she came back again and told us they were finished and took us back to a private room where we’d wait for the neurosurgeon to come in and talk to us about how it all went. Our parents waited with us there too. Which was a lifesaver because I think I would have thrown up during that wait that felt like a lifetime. Finally the surgeon came and said the surgery went well, asked us if we had any questions, and told us they were moving Remi back up to his space in the ICN.

We got to go up and see him about half an hour after they moved him. His head was all bandaged up, and they had shaved part of his head. He has a pretty sweet haircut now. The next two days were spent recovering. We visited him every day, all day, and our families visited us and brought us meals and kept us sane. Sunday before we left we were told that as long as everything is going well, Remi would be discharged the next day. We didn’t hold our breath because we didn’t want to be disappointed if something changed over night. Thankfully, when we arrived the next day they were ready to let him go.

We went over some last details, signed paperwork, and Remi had four appointments within three months lined up before we left, all with different doctors and therapists. We finally got to take him home. Which made us feel complete.

So, what does all of this mean for Remi and his future? Basically, there are a lot of unknowns at this point. We do know he’ll have the shunt for the rest of his life. They put extra tubing in when they put the shunt in his head so that it will grow with him for a while, but as he grows he’ll have to have more surgeries to lengthen it. The first of which being when he’s around four years old. We were also told to keep an eye out for any signs of a shunt malfunction, which would also lead to surgery. As far as the Porencephaly goes, we still don’t know for sure if he has it, or to what degree. We have to wait until the extra fluid is drained from his head before they can do another MRI and have a better look at what’s going on. We were told it would take a month or two, and that’s when they’ll do another MRI and we’ll know a little more. In May, Remi will have his first appointment at a developmental clinic and they’ll assess him and give us recommendations for any therapy he may need to make sure he’s hitting milestones. We suspect there will be a lot of therapy in Remi’s future. Some with professionals, and most of it at home with Caleb and I.

It’s been a wild, insanely exhausting month. I’ve never cried or prayed so much in my life. We don’t know what Remi will be like as he gets older, and we’ll just have to wait and find out. For now, we couldn’t be happier to finally have him home with us and enjoy him for who he is. And no matter what he’s like as he grows, he is ours, and he is awesome.