Fetoscopic Surgery: The Recovery (part 3)
I am going to tell you right now, this post is going to be real honest, and if you are looking into fetoscopic surgery for yourself or a friend, this might be eye-opening but know that even though recovery was tough, it was so worth it.
To be honest, as I explained a bit in part 1 and part 2, I was so busy worrying about the baby that I did not, for one second, think about the fact that I was also undergoing major surgery, then recovery, while also growing a human being. That was one of the hardest things I have ever done in my life.
Pre-surgery, and during the evaluation process I learned a ton of things, including the risks. I knew that I would be going in weekly for ultrasounds for routine checks to make sure that the baby was doing well. I knew they would be monitored for ruptured membranes and a lot of other stuff I only half-heard because I was being inundated with information. I knew that at 6 weeks post-op we would do another fetal MRI to check the progress of the hind-brain herniation, bladder function, and leg movement. I knew that at 32 weeks I would start to be seen twice a week for ultrasounds.
I thought I knew all I needed.
My first two ultrasounds went great. I was in a ton of pain but that was normal 2 weeks post-op. I had been on pain medication a bit stronger than Tylenol and they wanted me to wean myself off of that to prevent the baby from going through withdrawal, so I started taking only regular strength Tylenol during the day and at night taking the extra strength Tylenol (yes....REGULAR strength Tylenol post abdominal surgery while pregnant).
My birthday was March 2nd. For my birthday, I asked to go to Target and that my husband let me roam the aisles, going anywhere I wanted while putting anything in my cart without judgment. It was awesome (minus the fact that I bought only things for the girls, a few snacks, and gifts for other people ha!).
I went in March 3rd, the day after my birthday, for a routine ultrasound, as well as to do my glucose test. I was 28 weeks and 5 days along. Due to COVID, I wasn't allowed to bring Kellen to my weekly ultrasound appointments, but this day specifically, I was in so much pain I had Kellen walk with me up to the waiting room. Thank goodness I did.
I went and did my 1-hour glucose test then afterward, I went into my ultrasound. As the ultrasound tech touched the little ultrasound wand to my belly, she immediately took it off and called in for the doctor. A doctor on the team, that I had not yet had the pleasure of meeting, came in and broke the news that I had significant CAS (chorioamniotic separation) and that I would need to be admitted to the hospital as soon as possible for the remainder of my pregnancy.
The next few moments were a blur because it was so unexpected to me, even though they told me beforehand that this was a risk, it didn't land with me since I was worried about 100 other things. Why would I put any sort of weight into a potential risk that might not even happen to me. I held it together as I finished the ultrasound, and slowly and painfully made the walk back to Kellen in the waiting room. He could see it in my eyes from down the hall that something wasn't right. The ultrasound tech walked away as I looked at Kellen and broke down into tears, trying to explain everything that had just transpired.
Through blubbering, snotty, tear-streaked lips, I relayed the information in pieces, "something is wrong...sob...amniotic sac separation...hospitalization...sob...day after my birthday...sob...wheelchair please...pain...sob...modified bedrest... the remainder of pregnancy...sob".
I went into full-on depression mode.
We went home to pack up some things for the next potentially 12 weeks (aiming for a 40 week gestation period, understanding it would most likely be closer to 36-38 weeks) and for me to say goodbye to our twins. This was the most devastating part. I have tears in my eyes as I write this. I remember laying in our bedroom, it was bright and sunny outside but all of the blinds were closed and I just cried my heart out, alone. I literally felt sick and at rock bottom. I remember feeling so hopeless and sad. I was angry. I was confused. I was frustrated. I was blindsided. It felt so unfair that it happened so suddenly. My first two ultrasounds were just fine, now all of a sudden I am being admitted to the hospital.
Then began the most mentally challenging 7 weeks of my life. And somehow, they totally weren't as challenging as I think they could have been. The first week was the hardest. I was really, really down about not knowing if I would be able to see the kids. You see, because of COVID, visitor limitations had been set to two distinguished visitors (not at the same time, only one could be in my room at a time), and no kids allowed.
On day 6 of my hospital stay, I had a major breakdown. I was also very upset that I hadn't been assigned a therapist, or someone to talk to. I had just had major abdominal surgery 4 weeks prior, I was pregnant with a baby who has a birth defect, he also had just undergone surgery, I was dealing with being hospitalized, in a different state, during a pandemic, in a ton of pain...the fact that no one had been in to see how I was doing was insane to me, but my biggest anxiety was being away from my kids. Kids who were teething. Kids who were learning how to throw tantrums and work through emotions. Kids who were learning new words faster than I thought possible. I was missing out on their lives and I already had been missing out on it for 6 weeks.
On day 7, after a full day of crying, my amazing nurse came in and asked me if someone would be able to bring my kids to the hospital that afternoon. Even though it hadn't technically been cleared that I could go see my kids, I also wasn't a prisoner of the hospitals. They obviously want me to be cautious but at the same time, my mental health was so vital (I will share a post about advocating for your mental health one day). She told me she would turn the other cheek and as long as I stayed in my wheelchair and didn't lift the kids and promised to come back to the room if anything felt weird at all, I could go see my kids in the Rose Garden outside that day.
My mood changed from that moment forward. I felt lightyears better. I had a new mindset and I knew that I could do it, I could make it the next however many weeks until I met my guy. This was the motivation I needed. That first week in the hospital was so unknown, when will I see the girls, when will the baby be born, will I miss out on getting to spend the last few days as a family of four together and prep them for a baby brother, how serious is this complication, will my baby be ok, will I be ok, etc.
Each day my goal was to just live in each moment, take everything as it comes, control only what I can control, find joy in things that may not seem joyful but are my only options. I also made sure I felt very comfortable while in the hospital, and friends and family (and even IG friends!) were sending gifts to my room to help keep our spirits up. I took up embroidery, I watched movies and full TV series, I FaceTimed with the girls, I had Zoom calls with friends, I joined a book club. I went on walks and found things to keep me busy. Kellen and I played games, we ordered dinners in, we did facemasks, and we recovered from our surgeries. I have a whole post about how to get through an extended hospital stay that was pretty fun to put together as well.
My schedule looked sort of like this:
7:30am: wakeup, usually to someone wanting to do my vitals (BP, temp, and O2 levels)
8am: monitor baby for 30 minutes (heartbeat and my contractions)
8:30am: doctors would stop by and do their rounds, checking in on my night and my pain level (I was in a solid 7/8 pain level for the 9 weeks post-surgery, convinced it was the stitches on my uterus poking my peritoneum or possibly the stitches in my abdomen but either way, the pain should subside once I gave birth).
Somewhere in here, I would take pain meds, prenatal, Prilosec, and any other meds I needed
9am: order breakfast, took about 15 minutes to order (I was on hold) then it took about 45 minutes to arrive...sometimes it would be what I ordered and most times it was not. My go-to order was cinnamon raisin french toast, scrambled eggs with cheddar and breakfast potatoes, or I would have potato breakfast tacos with oatmeal and a yogurt/berry/granola parfait. Always with two apple juices.
I would usually try to go on 1 or 2 walks around the unit a day, and tried to do it after meals, then I would come back and lay in bed and do an activity of some kind.
10ish: every Monday and Thursday I had an ultrasound to check on the baby
12pm: order lunch, but sometimes I was super late on this
3:30pm: vitals, Tylenol
4pm: monitor baby and contractions for another 30 minutes. If anything happened (contractions or dips in baby heart rate) they would keep me on longer.
6pm: Kellen would bring dinner and we would hang out, doing something fun together.
12am: more monitoring for 20 minutes and stronger pain meds to help me sleep through the night.
Then on random days and times, the Chaplin, the physical therapist, the nutritionist, my nurse coordinator, my social worker, or my therapist would come by to check-in. The housekeepers and the dining staff also came in periodically, so I am sure you can understand how the day would fly by. Oh, and to add to that, I also had to get COVID tested every 14 days to make sure I was good to go.
Every morning, the doctors would come in and ask me how I was doing, and since I was stable for the first two weeks, I was allowed to get my IV out, and that was GAME-CHANGING. They make you keep an IV in just in case of emergency, but since I hadn't shown any symptoms of distress, they took mine out!
Luckily, Kellen was allowed to be in the room with me the whole time, and after he tore his pectoral tendon during the March 22nd Seawolves vs. Sabercats game resulting in surgery on April 2nd, the doctors would always jokingly say "and how is our other patient" and even said "do we need to roll a hospital bed in next to yours" (which I did try to make happen but apparently it was a fire hazard).
On March 29th, we did our 6 week post-op MRI to check on McLane and everything looked great. The hindbrain herniation (that they were not convinced would reverse with surgery) looked amazing and his ventricle size seemed stable. He had great leg movement and his bladder seemed to be looking great. They took a look at what may have been causing the HORRIBLE ride side pain I was having, which they had thought was due to my uterus stitches poking me in the perotoneum and the stitches should dissolve and the pain would go away with time. They mentioned I had a tear in my abdomen that they stitched up during surgery so that may be it. They ALSO said I had slipped discs in my spine, but that it should resolve itself post birth. But everyday, the pain seemed to change. Sometimes I would be in excrutiating pain, and others I would be totally good to go. But for the most part, my pain was a 7 on a 1-10 scale, which made recovery very tough.
On March 30th, at 32 weeks pregnant, I was having significant pain starting at 4:30am and I went all day in this pain level of a 9 or 10, then around 4pm at my monitoring they noticed I was having contractions pretty regularly and they decided to put me on a medication called procardia to help my uterus chillax, which it did, and oh my gosh, it also helped my side pain go away! The next afternoon, I had a significant amniotic fluid leak, which resulted in me getting an IV put in (via VAT team: vascular access team with an ultrasound to find my deep veins), and they stopped the procardia then started me on antibiotics to help prevent infection due to losing so much amniotic fluid.
My contractions subsided and they continued to monitor, but then Kellen was set to travel for work to El Paso on April 5th. We had to wake up at 4:30am to take out his pain pump that he had placed during his surgery 2 days prior (yes, WE had to take it out...but my amazing nurse helped haha) and I noticed I had leaked significantly again, and started having contractions again. However, the baby flipped from being breech to head down, and the doctors wer super concerned he was going to make his appearance sooner with his pressure he was putting on my pelvic area. Needless to say, after Kellen's presentation in El Paso, he came home on an earlier flight...I told him since he came home early, the baby would wait another week. Since he was head down, they scheduled an induction date of April 19th.
As I predicted, Kellen came home and the baby decided to hold off, he even flipped back to being breech again (merp). They had decided to wait and see if the babby would flip back to head down, but told me if he stays breech, they would most likely do a c-section between 34 and 35 weeks to avoid the need for an emergency c-section due to infection.
Having already had premature twins who arrived at 33 weeks, I felt ok with the impending delivery at an early gestational age, as well as a NICU stay. I was not, however, feeling great about the impending c-section where they would open up my previous incision from the fetoscopic surgery...the one that had given me so much pain for so long, as well as had just healed.
On April 12th, I started having some contractions again and they put me on a fluid IV (dehydration can also cause contractions) and started watching me even closer, including keeping me on the monitor over night to watch contractions, as well as baby's heart rate.
And I will have to leave you with that...the rest of the birth story will have to be shared in another post, I feel like it is definitely deserving of it's own story!