“Health is a state of body.
Wellness is a state of being.”J. Stanford
Recovery from Fetal Surgery is no joke. For anyone reading this who has had, or is considering the procedure I just want to say that in the interest of transparency. I have had major surgeries before, including a kidney surgery when I was 18 that led to a cumulative 17 days in the hospital. My recovery from any of my previous surgeries was a cake walk compared to the week after my fetal surgery. I am sure a part of that is, I wasn’t ALSO pregnant during those hospital stays. I think with my medical history I assumed that I would bounce back super quickly, and given the nature of the incisions, and the medical needs after the fact, that just wasn’t the case. Getting this treatment was 100 percent the best choice for my baby, and my family, but after the fact I can see why they are somewhat picky about who is eligible, and I can also see why a mother would instead choose to do the lesion repair post-birth. This isn’t a cookie cutter condition as far as the babies go, and its not a cookie cutter decision for every family. Was it the best decision for my baby? Yes. Would I do it again? Absolutely. But it was challenging.
[ Also just a warning, today’s blog is a little yucky, and talks about bodily functions, if you are not willing to hear about my body in a really personal and medical way, maybe skip this one]
The day of the actual surgery I slept for the next ten hours. I would wake up periodically when the nurses would come in to take my vitals. We would chit chat, they would ask about my pain level. I still had my epidural in, and was on a pump of pain meds, so it was well taken care of. Nothing by mouth, but I was too sleepy to think about food or water, so I just napped off most of the first day.
2nd day I was able to take fluids and ice chips. Some broth by lunch time. I was still hooked up to all pain meds, but was more lucid, and able to talk and converse with my husband and the nursing staff. They told me I was doing really well. I was still taking lots of naps. Day three was the hard one. My epidural was taken out, and I was switched to oral pain medicine. We were trying to work on moving my legs and feet so we would move up to walking and showering. Everything hurt. I had heartburn, and cramping, and general soreness from laying in bed. I was hooked up to a belly band that measured if I was having any contractions. The machines were loud and beeping which I hadn’t noticed when I was on the stronger medicine. It was hard to sleep. My oxygen saturation monitor kept going off every two to three minutes.
Around late afternoon/early evening we tried to have me walk to the restroom and get used to movement again, I got into the bathroom and then promptly passed out. It was very dramatic and the entire nursing staff came in. I woke up. Very embarrassed and very discouraged. I vomited, and in general felt really disgusting. I was in a lot of pain, and I also hadn’t been able to pass urine since my foley catheter came out, and knew my time was running out before they cathed me again due to just.. physical NEED for me to urinate before it could cause some other complications. I sat on the toilet with the sink running for almost 40 minutes. NOTHING. Nothing happened.
My very sweet nurse kept coming in to check on me. I cried. She was sympathetic. We ended up having to cath me when I was awake. I cried the whole time. Not because it hurt (although lets be real, its not PLEASANT) but because I felt like I wasn’t doing a good job healing. Between passing out, and throwing up, and then Pee-gate 2019, I just felt like I was failing at recovery, and being really hard on myself. She reminded me that there weren’t many medical procedures that required both general anesthesia as well as an epidural, and what I had done was really hard. She reminded me to be kind to myself. I was beating myself up, and sure that entire care staff thought I was annoying and a huge baby. I was sure my husband thought I was nuts. It was a lot of self judgement, mixed with physical pain, mixed with mental exhaustion. She calmed me down, and I went to sleep, and she said we could try again in a few hours. I fell asleep crying softly while watching the hospital TV. Around the fifth episode in a row of House Hunters I got up. I warned my husband that I was going to talk and try to make it to the bathroom again. He made me call the nurse just in case, given the days excitement from before. AND THEN IT HAPPENED YA’LL.
I peed. I PEED. I know this sounds ridiculous out of context but I am telling you it was a HUGE deal. It had been DAYS. The secret? I’m not even kidding, but it was essential oils. I am dying laughing typing that. The nurses had put peppermint oil in the toilet, it helps things dilate it what I have been told. So that is the secret to post surgery help with passing urine, if you ever need to make that transition quick, HIGHLY recommend that trade secret. I showed the nurse that I had peed (McKenzie if you ever read this you are amazing) We both did a happy dance and freaked out. Its weird how excited everyone gets over that type of thing, but really it was very exciting, and meant that my time in the hospital was coming close to being over.
I continued to urinate on my own, was able to finally take a shower. The shower was REVOLUTIONARY. I had been dry shampooing and using baby wipes only for about a week, and it was SO nice to actually shower. I had to shower sitting down, but was able to wash my hair, and freshen up. I put on my own clothes, and was taking short walks around the room, only a few steps at a time. I was getting discharged soon, and we only had a vague plan where we were going. I had been too drugged up to really realize that in a few short hours we would be… out of there.
So we had applied for the Philadelphia Ronald McDonald House earlier that week. Unfortunately space there is limited, and we were on the waiting list. I had set up a condo rental for a few days for us, and when we were discharged we headed there in an Uber. Driving fresh off of surgery SUCKED. Every little bump in the road felt terrible, like my stomach was going to be ripped open. I was positive I was going to have contractions and have to go straight back to the hospital. We got to the condo, all the while figuring out how my new wheelchair worked, and how it didn’t always fit through tiny urban doors and hallways. Funny story I actually booked a different room initially and had to cancel with that building because I hadn’t checked first that they had an elevator, and I wasn’t allowed to walk or climb stairs. yet. This new place had an elevator, and was a small but cute and modern space. I was comfortable and we were happy that we were in a less clinical atmosphere, and able to sleep in the same bed! A small luxury that we hadn’t been able to do in over a week.
I made a pillow nest and took lots of naps, and lots of pain pills. My incision was healing well, but still quite sore, and very large. It has now healed a lot and shrank, and I think over time will just be a faint white line (Thanks Doc!) At the time however it was raw, and new, and really a hit to my already dwindling body image. Its hard to not be able to do anything for yourself. I could only walk from my bed to the ladies room. I would even tell Jesse every time I was going in there so that he could listen and make sure I didn’t pass out. I showered sitting down, and with the same warning to him to listen for any signs of distress. As a very independent person I was frustrated, and stir crazy. I had to wear compression socks during daylight hours, which made me feel 90 years old.
I was to be on strict bed rest for around three weeks. So I was in for a few …. booorrrriiinnnggg weeks. I just tried to focus on the positives… I was out of the hospital. My pain was managed. I was with my husband. I had a clean place to stay that was close to the hospital pending any emergencies.
Its the little things.