Tension of a Bow, Abigail's Death

The morning we arrived at the Children's Hospital of Philadelphia for our scan of Baby B was filled with tension.  My mental, spiritual, and emotional state were neutral in a positive/negative sense--I wasn't afraid nor was I anticipating a specific result; I was lightly hopeful and knew that numbers were on our side, but I was concerned that Tella hadn't felt any movement.  However, there was a deep seated tension in all parts of me, waiting to hear how Baby B was.  Tella and I had arrived at the hospital itself early, so we went to the food court to eat breakfast and talk.  Due to the restrictions from the procedure, I was pushing her everywhere in a wheelchair, so it took a bit longer to move around and get our food.  Even so, we still had extra time before the appointment, so we headed upstairs to check in early.

In the waiting room there were a shocking amount of couples.  Apparently slightly later in the day, the office gets extremely busy.  We had to wait so long to sign in that we were only barely on time, and once we did sign in, we had to wait extra time for our appointment.  This portion of time was the first instance that the waiting truly became almost too much for me.  I had previously been able to keep everything balanced, if still tense, through focusing my perspective--reminding myself that information in and of itself is not scary, that currently nothing was known and nothing could be done except for the prayers that already had been done; now, however, I needed to add breathwork practices from Aikido to calm my body down into focus.  

We were called back for our ultrasound, and the tech came in with an additional helper who was learning how to use the equipment.  Once they booted the machine on, it read fetus A (Grace), and she was sitting there still with no heartbeat, as I knew she'd be.  They scanned over to Baby B, and I didn't see any movement, but they whipped back so fast that I wasn't sure.  I asked if they could go straight in for the heartbeat, and when they did, I was struck by how silent and still it all was--like a tomb.  I was shocked and hoping for a mistake, but I could see what was in front of me on the screen, and I knew.  The ultrasound tech said she hated to be the bearer of bad news, but there was no heartbeat.  She and her assistant virtually ran out of the office.

While I was emotionally stunned and sitting there lightly crying, I heard a wail from Tella like I've never heard in my life that was filled with such pain it broke my heart.  While I was still trying to digest it all, it had obviously already hit her in a profound way that I couldn't understand.  I helped her stand up and hugged her while she cried, and I cried along with her.

They allowed us some brief privacy and time before they sent someone back in.  If I'd had it in me to write in the details I'm attempting to relay to you now on the day of the events, I'm sure I could have kept it a bit straighter.  That said, the rest of that morning hit like a disorienting blur.  I remember that at one of the lulls we discussed names further--Tella was curious if I was set on Gail--I liked the meaning of Abigail/Gail, but while Jessie Gail sounded good to me, Tella wasn't sure about Gail as a name.  I then asked about Abigail Jessie, and we both decided that was the right name.  Amidst quite a few tears we finalized Baby B's name to Abigail Jessie Nimz.  In some senses, Baby B almost had more meaning to me as we'd used it more, but I knew the meaning and name of Abigail Jessie was right.  Abigail means 'Bringer of Joy' or 'Father's Joy' and Jessie means 'God has seen', 'God exists', or 'God's gift'.  Jessie was also the first name of my very sweet great grandmother.  We had settled on Jessie as part of the name before, because we knew God had seen Abigail bouncing around and playing with and protecting her sister as we had seen in the ultrasounds.  I will admit, watching Abigail, our little wiggler and acrobatic flyer who would never stay still for the techs and who was always exploring lying there so still and dead...  it was so wrong and it broke my heart in a way I can't explain with words.

Some short time before that conversation with Tella in the ultrasound room, I had texted Dr. Soni about Abigail's passing.  She had asked us to let her know how things went, so even though we were seeing a colleague of hers that day instead of her, I had texted her. She asked us not to leave and said that she'd be there within 5 minutes.  I feel like she came into the room just after we'd decided on names, and she said that she was so sorry.  I'd previously invited her to read my blog to hear a patient's perspective, and she confirmed my math from the night before when I said our risk was likely actually 20% since they'd had to go in twice.  She said that was correct and that they were worried since Tella hadn't felt movement.  I realize it was an illogical feeling, but I was almost furious at myself that I was right about that probability.  She went on to explain that she didn't feel there was anything they could have done differently and that there was no way to suspect there was the different umbilical cord insertion point in advance.  She'd been running it through her head, too, and she thinks they would have done everything the same.  I knew I'd also have made the same choices I had made with the information that I had at the time.  Yes, of course, if I could travel back in time now I'd go without the procedure since I now know it is death for Abigail with the procedure and there's a super small chance it wouldn't have been without the procedure, but I also have no reason to suspect it would be any different without the procedure.  Actually, the fact that Abigail died with the procedure points to the likelihood that she would have died without it.  There is a good chance that the pressure drop happened between the two insertions, and if it killed her with a partial occlusion, it almost certainly would have killed her un-occluded (if Grace had died naturally with no occlusion procedure).  Of course, ultimately, there is truly no way to know for sure.  Tella thinks, and I agree, that if we hadn't done the procedure and were left wondering if action could have saved our daughter that we'd have been in a worse place than we are now, having lost our daughter even with the procedure.  At least in this instance, we did all we could do to save her (prayer and action-wise).  Either way, it's still a horrible loss.

Within that discussion, a few other things came to light that I don't fully remember now.  One of them was that Dr. Soni disagreed with her partner that Grace could have still been alive when Tella was wheeled into the recovery room after the occlusion procedure.  Dr. Soni's understanding matched more with my medical understanding, as well.  Grace likely passed before then.

Regardless, after that opening discussion, we had to rapidly consider and decide what to do now that Abigail had died, too.  We hadn't thought through this route since the numbers were 85-88% favorable for Abigail to be fine.  Now we had to figure out how to get the babies bodies out--it sounded like our options were either induction or a procedure where they surgically remove the girls' bodies in pieces.  That procedure was considered very slightly better for recovery and safety for Tella, but they were almost identical.  We decided that one of the few things the girls owned while they were alive was their bodies, so we wanted to honor those bodies to honor them.  As such, we picked induction.  We then had to decide while in the office there whether we wanted to do that in Philadelphia, Wichita, or in Hays.  Dr. Soni felt it could be done anywhere, and if that was true, we preferred Hays due to the comfort of home and better support.  She decided to call to verify that, and in the meantime she had a meeting.  If they couldn't do it in Hays, we were going to do it in Philadelphia since we had no support in Wichita and were at least with Tella's parents in Philadelphia and staying at the Ronald McDonald House.

While she was in the meeting, the social worker, Liz, came in to apologize to us, give us some paperwork on grief resources, and to help schedule our flights home.  She was under the impression we were only going home, but we hadn't yet heard if home could handle the induction, so we were trying to have her wait to finalize travel until we heard back from Dr. Soni as we were also considering inducing in Philadelphia.  It was a slightly uncomfortable stall as she was really trying to push us to get tickets as she hadn't heard from Dr. Soni that an induction in Philadelphia was an option and/or didn't feel it was an option.  That conflicted with what we'd heard, so we were left at a strange impasse as she also only had so much time and was wanting to finalize airline tickets on a speakerphone call with her travel agency right then.  Keep in mind that this whole thing was likely within an hour and change of us even realizing that Abigail wasn't with us.  We were largely processing that still, and we were already being asked to make procedural (induction vs. surgery) and travel plans based on something we had only had minutes to ask questions about and/or research.  It was a bit of an overload.  Ultimately, she said we could cancel the tickets with no issue to them if we ended up picking Philadelphia to deliver in, so we went ahead and got them.  Shortly after that, we heard that we should be able to deliver in Hays, so we ended up going with that decision.  We then returned to the Ronald McDonald House to see Simon, Tella's parents, and to prepare to go back home.

Once we arrived at the house, Tella's mom greeted us near the front desk with an apology and some tears, and the front desk gal asked if everything was ok.  I said that no, it really wasn't as we'd lost both of the twins (explaining why she was seeing Tella and her mom hugging and crying), and the front desk worker panicked a bit and called for their social workers and told us to wait until the social workers came out.  I was fairly tired and had no idea why we needed to wait for these social workers when all of us just wanted to get lunch, but we convinced Tella's parents to go on into lunch and took Simon upstairs with the social workers.  They asked us quite a few questions about what was going on to see if they could help out in any way, and they also provided some useful resources.  At the end of the discussion, they did help greatly by giving us an exception so we could park Tella's dad's truck in their parking garage that night instead of having to wait to get it from the off-site parking the next morning right before the flight.  They also said we didn't need to do the typical room cleaning on our way out--just the basics like gathering the bedding and towels etc.  These two small things helped greatly.

We then went down and had lunch and discussed going to the Philadelphia Chinese Lantern Festival.  I had previously suggested it at the hospital.  It was something we'd wanted to do with Simon and Abigail (inside Tella), before we'd realized she'd already crossed over.  Though it would be bittersweet, I felt it would still be good to do.

Later that evening, we all headed out and picked up Tella's dad's truck and brought it back to the Ronald McDonald House's parking garage, and then Tella's mom, Simon and I took a Lyft out to the festival.  I'm ultimately quite glad that we went.  Simon (our 16 month old) loved it, and it was good for the rest of us to get out of the Ronald McDonald House and into a different headspace before the return trip.  Helping Simon as he truly enjoyed the lights, bubbles, adventures, water displays, and music was truly life giving.  It also made me appreciate what I did have and gave me some quiet moments to ponder, cry, and reflect.