My ability to sleep continued to be terrible. The biggest issue for me besides trying to sleep in an ICU, was that I couldn’t turn to my side to sleep because of the pain it would cause to my abdomen. I was also terrified to sleep for fear I wouldn’t wake up. I vividly remember dreading the night. I would become increasingly anxious as I watched the clock tick towards dinner time. I had visitors in and out all day long (including my favorite little boy!) to keep me occupied and distracted. If I was lucky enough to fall asleep for a few hours, I was always woken up in the early hours of the morning for a blood draw. Then I would just stare around the room, hoping whoever was with me, Steve or my mom, would hurry up and wake up already! I was desperate not to be left with my own thoughts.
We were able to celebrate my mother-in-law’s birthday in the hospital courtyard and I was able to see my dog, Dax! I remember being so excited to have these small reprieves from the ICU, but also by the time I got to the location I was already exhausted and wanting to go back to bed. It was so frustrating.
Celebrating MoMo’s birthday in the hospital courtyard.
July 29th
Everything was looking like I would be discharged today. My WBC count was almost back within normal range, my last echo of my heart looked good, I was walking on my own all the way down to the courtyard without a wheel chair. I was so disappointed when we approached dinner time and I still hadn’t been discharged. My big accomplishment was that I showered mostly on my own with just a little help from the nurse. It had been decided that I would be able to be discharged to home without going to rehab. I was capable of taking care of myself and we would have a lot of help taking care of Cal.
One of my trauma surgeons from Paoli came to visit me. She was thrilled to see me walking and talking, considering where she had seen me just 2 weeks prior.
July 30th
My WBC was basically back to normal and they had figured out an anticoagulation med in pill form to put me on so that I didn’t have to do daily injections like I had been receiving in the hospital. I needed to stay on them for a few months while the blood clots in my groin, from the ECMO placement, dissolved.
I was finally discharged that day, along with Cal. I was overcome with emotions when I got in our car that day with our perfect baby boy. The ride home was painful with every bump, but I didn’t even care because I was so excited to get home.
That night, I figured out a way to prop my stomach with pillows so it didn’t hurt to sleep on my side. I slept for 14 hours straight. Over the course of the next month, I had daily nurse visits to pack my incision which didn’t close completely.
There is so much trauma and emotion that comes from not being able to see the birth of your baby, not meeting your baby for several days, and then not being able to take care of your own baby for months. That’s a topic I’ll save for future posts.
For now, I am grateful my son and I are both alive and well. As long as that is the case, I will continue to fight for moms who aren’t as lucky. I will continue to fight through the hard days. I will continue to survive.
If you are looking to learn more about Amniotic Fluid Embolisms, the rare complication I experienced with the birth of my son, please visit AFEsupport.org.
Tears of happiness that we’re finally headed home!
Things were looking good, my abdominal incisions were doing well and the drain I had there was draining less and less. I was able to begin walking a few feet at a time with a walker, which was a great improvement from the previous days when I could only stand for a minute or two at a time. The plan was to head to a rehab facility once I was discharged, to gain strength and endurance so that I could walk again.
The only negative this day was that my white blood cell count was elevated, so they were worried about a potential infection. I had a lot of emergency surgery that first day, so they’d had me on prophylactic antibiotics in hopes of staving off any infections.
My ability to sleep continued to be an issue and was only exacerbating my anxiety. Under the doctor’s suggestion, I tried Melatonin. The next morning I told the nurse I felt like it made me hallucinate because I had a panic attack in the middle of the night. Apparently, what actually happened is that there was a code blue alarm for L&D in the middle of the night, which trigged my panic. A code blue that I later learned was for a mom suffering a suspected Amniotic Fluid Embolism, that she did not survive. I don’t have the words to describe the overwhelming grief and survivors guilt I experienced when I learned this the next day.
July 27th
On my way to see Cal at his nursery for the first time (instead of him coming down to see me)!
Things were continuing to improve. My WBC count was trending down, but still high so they needed to keep an eye on it. My heart was looking great. That morning I was able to walk without the walker and then that evening I was walking up and down stairs. No one really understands how this progressed so quickly. I just remember feeling like I wasn’t in pain anymore and at this point I was mostly just on Tylenol for pain, Dilauded when it got worse, usually at night. It felt good to be out of bed and walking so I continued to do it. At this point I was feeling so over being in the hospital, I just wanted to go home. My wonderful nurse could tell I was starting to lose it, so she suggested that I take a walk outside since I was able to be disconnected from the heart monitor for a little bit each day. The first time I went outside, even though it was in the middle of a heat wave, was magical. The ICU air was so dry for me, I actually had to start using a mouth rinse to keep my mouth moist when I came off the vent. Feeling the sun on my skin was the medicine my soul needed.
Enjoying some outside time after my first shower in almost 2 weeks!
The epidural came out today (they left it in this whole time for pain management.). The plan was to move me from the CTICU to the surgical ICU, but the surgical ICU wasn’t open and they didn’t want to open it for one patient. I was instead moved to the Cardiac ICU. That evening I got out of bed for the first time and was able to pivot to the chair. I was in a lot of pain, but his was a huge step for me!
First time in a chair- headed down to the Cardiac ICU.
In the middle of the night I had an abnormal heart rhythm. It just felt like a palpitation to me, which I’ve experienced intermittently before even being pregnant. Everything up until this point had felt like progress forward. This was my first set back. Someone immediately came into the room and they put large AED pads on me incase they needed to shock my heart back into rhythm (cue the tears). I was a hot mess. The anxiety I was already experiencing skyrocketed and I was unable to sleep the rest of the night.
July 24th
That morning they reran an EKG, x-ray, and blood work to check on my heart functioning. Everything came back normal. Unfortunately, I had my first run in with an unhelpful physician after this event. A heart rhythm doctor was called to consult because of the abnormal rhythm. When I told him that I had experienced these palpitations in the past usually associated with anxiety, he told me to “please stop calling this anxiety” and then proceeded to say he wouldn’t tell me what it was because then I would google it and scare myself. Needless to say I asked to never speak to that doctor again. Thankfully, my wonderful cardiologist came to check on me and let me know that everything seemed fine and that there are a lot of things that can cause what I experienced, lack of sleep, stress, my low potassium/magnesium numbers etc.
July 25th
I was able to start solid food, which I was so pumped about! It had been over a week since my last food. However, when I tried to eat, I had no appetite and everything tasted like cardboard, even the bagel and cream cheese I craved all pregnancy. Apparently, this is common for abdominal surgery, but I was definitely disappointed. The only thing that sounded good was cereal with milk. I had to force myself to eat the rest of the hospital stay and for a few weeks after discharge. Thankfully my appetite did eventually return.
My anxiety was still very high and I needed someone to sleep in my room with me every night in order to even get 3 hours of sleep. Poor Steve had been sleeping over every night and was absolutely wrecked. We forced Steve to stay at the hotel and had my mom sleep over that night. I remember listening to music so that I didn’t have to hear the sounds of the ICU. Our wedding song came on and I balled my eyes out thinking about how lucky I was to still be here. I just couldn’t believe I had made it through what everyone was telling me happened.
That night, soon after I finally fell asleep, I woke up feeling like I was drowning. I was coughing and sounding like I was choking. I was absolutely fine and have no idea what I was dreaming about except that I felt like I was drowning.
With the bagel I hated and the AED pads on my chest.
The morning of the 20th, I was taken back for my final ex lap and abdominal washout. They were able to close completely.
At 9pm that evening, they decided they wanted to try to take the ventilator out. I was brought out of sedation and immediately terrified. I tried to pull the tube. I started to hyperventilate. They said they needed me to calmly breathe over the vent for 40 minutes before they would pull it. Imagine waking up in the CTICU with a tube down your throat and remembering nothing except for being at the end of your pregnancy. It wasn’t looking like I was going to stay calm enough for them to take it out. Then my best friend decided that this needed to happen tonight. I needed to get off this vent. She came to my bedside put her hand on my forehead, while holding my other hand and spoke softly to me. Every time she tried to take her hand off my head, I hyperventilated. She stood there, after barely sleeping for 3 nights and willed me off that ventilator. I was taken off the vent that night and switched over to nasal oxygen. It took me a while to catch my breath and I needed lots of oxygen plus some steroid treatments to help open my airways. Now that the vent was out, I didn’t need to be kept as sedated, but that meant I was more aware of what was going on around me and as a result, absolutely terrified.
My bestie getting me weaned off the ventilator.
July 21st
I held my son for the first time while conscious. I unfortunately don’t remember this, but we have a video. I asked if he looked like a fish and whether or not he was a mutant, like X-Men. I had a weird obsession with water and asked my mom if she remembered when we were in the water together and how weird that was. I then began to question what had happened to me. My family decided to tell me it was a c-section, until they could come with a better plan of how to tell me what actually happened. One of my favorite stories from this time is when I would look around and ask Steve if everything was okay. He would, of course, say yes and I would look around and ask “are you sure, seems pretty fucked up.”
The first time I held my son while “conscious”. Five days after his birth.
July 22nd
This was the day I finally found out what happened to me. My family couldn’t decide who would tell me and what they would include. No one felt qualified to explain what happened, but they also didn’t feel like they had a choice. As they were discussing it, my OBGYN and anesthesiologist from Paoli showed up to visit me. My OBGYN offered to explain what happened to me. This is actually my first memory. I remember she was at my bedside holding my hand to the right of my head and my anesthesiologist was on my left side, down near my hip, holding my hand. I remember her telling me that I had an AFE. I remember mostly holding it together and nodding thinking it finally made sense given where I was and all of my tubes and lines. Then, she told me I needed a hysterectomy, and I started to cry. She was so patient with explaining everything I wanted to know. After they left, I rested for a while and then started to ask my family a million questions. Later that day I was finally able to drink fluids. Unfortunately, I went a little crazy with the drinking because of my dry mouth and threw up massive amounts that night. I proceeded to tell everyone that it was the most traumatic thing I’d been through. To which they rolled their eyes and reminded me of my son’s birth, 5 days prior.
Once at Lankenau Medical Center, it took them a few hours to get my settled into my room in the CTICU because I had so many machines attached to me.
July 18th
Around 3am the next morning, my Cardiologist came to speak to Steve and my mom. ECMO was keeping me oxygenated, and therefore alive, but they were having trouble getting my heart to start pumping strong enough again. They had already tried a few different drugs with no success. They told my family that they were going to try an Impella Device. They basically insert a tiny windmill-like device into your femoral artery up into your heart. The hope is that it will expel the blood from the left ventricle and allow the heart to start pumping strongly again. The doctors were clear that this was pretty much a last ditch effort. If this didn’t work my heart would clot and I wouldn’t make it.
Thankfully, it worked! After the Impella Device was inserted, I was taken to the OR again for another exploratory laparotomy and abdominal washout. They cleaned up the abdominal area, re-stiched some previous incisions, and re-packed me. They, again, left me partially open so they could go back in. The idea was to continue going back in to make sure the bleeding was still slowed and to clean the area since my stat c-section was unable to be done under the most sterile of conditions. At this point my neurological functioning was still TBD. They were attempting to keep my temperature down to heed off any neurological complications, but they needed to start warming me back up so my heart and clotting would hopefully return to normal.
Later that day, my team updated my family to let them know that my heart was starting to eject and that they felt like the Impella was working. The goal was to give me time to rest and they would run a few tests to check on any possible heart damage as well as brain activity.
The best moment of the day: Cal was transferred from Paoli to be with me. We met for the first time, even though I was unconscious.
That night, I opened my eyes, felt all of my tubes, and also moved my leg.
The first time I met my son. More than twenty-four hours after he was born.
July 19th
The next morning, I was brought into the OR for another exploratory laparotomy and abdominal washout. Again, they cleaned up the abdominal area, re-stiched some previous incisions, and re-packed me. They were able to close me a little more this time, but still left the incision partially open to go back in the next day.
My heart was finally doing it’s job again and looked great. They were hoping to downgrade my ECMO support to just lungs. When they took me back to test the functioning with the ECMO support clamped off, they realized my lungs were doing pretty well with just the vent, so they were able to take me completely off of ECMO just 2 days after the support had been initiated. They originally thought I would be on ECMO for a week or two.
My family celebrating me getting taken off ECMO support.
