Grace Crossing

Yesterday morning we got up quite early and left Simon with the grandparents at the Ronald McDonald House.  On the way out I picked up a yogurt and some tea since the 24 hour coffee was down for refilling.  We hopped on the shuttle and headed to the hospital.  Finding our way to the special delivery unit that contains the operating room was a bit challenging, but we made it in.  We had to fill out some paperwork and met with a variety of nurses and doctors throughout the morning who explained how the procedure and recovery would go.  Some chatted more and some chatted less.  Tella and I got a chuckle out of virtually every one of them asking if I was in medicine.  I'm not 100% sure why it happens except that I generally understand what they are talking about, but Tella says I give off some kind of vibe.  Regardless, having it happen several times in the same morning at least occasionally broke the tension with some smiles/chuckles.

The waiting was very hard.  Though I didn't question our choice, Grace could die at any moment, and if she did before the ablation the death risk was much higher for Jessie Middle Name Nimz or First Name Jessie Nimz (we haven't decided where we're putting it yet).  For now I'll keep calling her Baby B, as it is fairly familiar and somewhat her 'name.'  I also knew it would be terribly hard being there while Grace died, but I wanted her as surrounded by family as possible.  They came in before the procedure and did an ultrasound; Tella had been asked to have a full bladder as the twins frequently lay on top of each other, but a full bladder pushes them a bit further apart, and space is needed for the procedure to be doable.  It appeared that this was successful; Dr. Soni was more positive than her partner.  I'm not sure of her name's spelling, but Dr. Jeb was a little less positive.  She said it would be challenging--doable but challenging.  She did clarify that both thought it was possible/positive overall, or they would not go ahead with it.  After that, they administered some muscle relaxers to relax Tella's uterus, and Tella slipped in and out due to how tired she was.

Eventually, they wheeled Tella out and dropped off a paper jumpsuit, paper coverings for my shoes, a hair covering, and a mask for me.  I then had to wait until they called for me to join in the operating room.  -I need to state here that in general, I would not be allowed in the operating room.  I'm not sure if it was my plea as a father or my plea as a minister (which lets me be in some other hospitals) or if it was something else, but I feel immensely grateful to Dr. Soni for pleading my case enough that I was allowed in.  Originally it seemed very likely that I would not be allowed in and was initially told 'no.'  At the end of the day, they allowed it, and I wanted to be there with Grace as she died.  

In the operating room, Tella was already mostly asleep due to the sedation, and they had me sit by her head so I could comfort her next to the anesthesiologist.  I could hear the doctors talking, and I could see the live ultrasound on-screen of both of my babies.  When they inserted the needle containing the RFA mechanism that makes extremely localized heat, I could see the uterine wall separate and the needle enter right near Grace.  I was a bit concerned that they might have run into her as they entered, but it seemed like they did not.  Initially, it looked like Baby B came over to investigate, but eventually both girls made space.  The doctor commented that both girls were really helping out, and I know they are too little to make such decisions, but it seemed like Grace knew she was dying and didn't want to take her sister with her and like her sister understood and made space for it to happen.  It was extremely hard to watch, though at that point I was calm.  I saw them put color off and on to position the RFA mechanism near the cord, and they prepared for the first burn cycle.  Having not watched any videos of these procedures (and maybe they are not something that can be found online, I don't know), I was surprised when they started the burn cycle by how much disturbance it makes in the amniotic fluid.  I shouldn't have been, I realized, because it is superheating the fluid around the cord, as well.  That said, the effect on the screen is almost like watching a blowtorch kick on.  It also starts burning the cord and either little wisps shoot off or the fluid is stirred enough that it appears like that.  Grace initially moved more than I've ever seen her move, which was hard on my heart.  That said, it was apparently just the response to the sudden heat nearby as she calmed down rapidly and was chill for the rest of the first burn cycle.  --This is also fairly traumatic to recall and type--  They repositioned and repeated for the second and third cycle of the three that they typically do.  They told me that now was the time to pray as they started the third cycle.  I spoke quietly to not disturb them and also prayed silently to not disturb Tella.  Though she seemed asleep at this time, if she woke up and started crying, it would move what they were doing and could severely injure either baby or a nearby vessel.  I'd already chatted with Grace and Baby B several times, and I'd already mostly prayed this through several times, but I still prayed again to God to be very present and to comfort Grace, that Grace could feel us around her and be escorted all the way across by Him.  I also cried silently and fiercely several times.  After the third cycle, I began to wonder if something was wrong.  I could see Grace's unique little heart (because it sticks halfway out of her chest, it is very visibly different from her sister's and most baby's) still beating away in its cycle as though nothing had happened.  They also started talking beyond my range of hearing.  I had my fears confirmed when they decided to do a fourth burn cycle.  This time, they appeared to get the cord as Grace had a bit of a reaction and her heart started visibly slowing down.  I prayed and prayed--I wanted to be there with her when it stopped.  I also know brainwaves can continue after that for some time, and I wanted her to know I was there and be comforted.  As her heart slowed, since they weren't maneuvering anything and Tella was asleep, I quietly audibly said 'It's ok sweet little girl, it's ok.'  I tried to send calm thoughts and words as she seemed calm overall with her heart slowing.  Unfortunately, I couldn't keep watching as they kept zooming around with the camera to Baby B and other places.  Baby B's heart was clearly unaffected, which was good, and as Grace was slowing her legs twitched a bit.  I knew this was common in death, but it still broke my heart to see.  I wanted to ask them to keep watching until her heart fully stopped, but it was clear that this was something they don't do; they also seemed to feel confident they had gotten it and it seemed like it was mostly in a state of fibrillation (disorganized beating), so she was clearly on her way over.  They asked me to leave at that point, and though I felt a desire to stay as her heart was likely still stopping, I knew they had pushed hard to even allow me in, and I had already prayed and had a bit of a sensation that God was with her and maybe had even taken her across.  I don't know how the soul could leave ahead of the body dying, so it may have also just been me tricking myself somewhere internally, but I did have peace in my prayers that God was with her on both sides, at least.  I also knew her mom and sister were literally next to her, and she had heard my voice.

I was walked back to the hospital room, and I propped the door partially closed so I could have some privacy, then I cried heavily and repeatedly.  Eventually, I was sitting there with my face in my hand, and Dr. Soni opened the door with a bit of a rush.  She explained that they had missed the cord and Grace's heart was back up.  She said it was very dangerous and they needed to re-enter.  I understood medically what she meant.  If they ended up causing Grace to die with this procedure without occluding the cord in the way that the procedure is supposed to, they basically just killed her ahead of schedule with no beneficial layer of protection to Baby B.  The cord being occluded is what stops the blood pressure from rushing away from Baby B to Grace after she dies, not helping Grace and often killing or causing brain and kidney damages to Baby Bs.  This is the whole reason we had done the procedure instead of letting Grace die on her own--to take an immediate 20% death risk to 10% and an immediate brain damage risk from 30% to 0%--to take a 50% net risk down to 10%.  (There is an additional 5% risk with the procedure of pre-term delivery, but to keep looking at it as apples to apples, the immediate risk to Baby B if Grace dies with no cord occlusion is 50%--30% being damage 20% being death.  With occlusion it is only 10% risk of death).  The thought of having still picked this path to escort Grace over peacefully and also to protect Baby B and essentially failing at both horrified me.  I looked at my scrubs and Dr. Soni indicated there probably wasn't time for me to suit up.  Being there in this case would be more about what I wanted than what was best for the girls, so I nodded and told her to go do what she had to do.

Then came the horrible waiting.  Having been there through it the first time, I felt like the whole thing only took 15-30 minutes.  Somehow this waiting stretched to 45 minutes with no updates.  I had initially dropped to my knees on the tile to pray and had considered staying in seiza (kneeling position) until I got an update.  Eventually I had prayed all I could and waited for what felt like a long time, and I felt it wasn't wise to damage my knees when I'd still need to be there for Simon and Tella (my knees were hurting quite a bit by now).  As such, I moved to the couch, opened the windows (sometimes I feel closer to God outside in nature) and sat half-lotus to pray.  I stayed in that position for another half hour, praying.  Eventually, I felt everything had been turned to God that could be turned to God and that it was really in His hands and always had been.  There wasn't much else I could do but wait.  When my body felt sick and tense, I would deep breathe like I teach the kids in Aikido to relax it, then sit and listen more.  Listening meditation to try and hear God can be beneficial in times like this.  Near the end, between the stress having left due to surrendering to God, trusting God, and my deep breathing combined with my exhaustion, I started to fall asleep repeatedly and tilt to the side.  This whole journey over the last few weeks has felt like a marathon of sprints.  I've done 'marathon' stretches in life when heavy things have hit that take a long time to ride out, and I've done sprints in emergencies where things happen dawn to dusk with no sleep constant presence/engagement, and a heavy toll.  This situation has almost broken me or exceeded my limits several times because it is both; sprints day after day for weeks on end with no real down time at all and severely limited sleep; as such, now that I had a modicum of peace, I couldn't stay awake.

About that time, they finally wheeled Tella in.  Both doctors were there and said that they felt like they had gotten the cord clearly this time.  I asked about the crash I had witnessed the first time of Grace's heart slowing immensely, because that could start the occurrence of the brain damage and higher death risk to Baby B, but they said it hadn't dropped below 90bpm at any point when the cord wasn't occluded, and they were confident they got the cord before Grace started passing this second time.  As such, they didn't think we'd need a follow up MRI on Baby B.  I also was happy we'd missed the 10% death risk to Baby B--they said she looked good--but they said that would only be past at Friday's check.  I felt a bit upset as I had apparently misunderstood and thought the risk of twin demise was immediate during the procedure only.  Apparently when they said there would be no risk after they detected a heartbeat on Baby B, they meant at the Friday visit.  That said, I chose to be ok with that.  I also asked about how long it had taken Grace to pass.  I had originally been told two to three cycles, which was only a few minutes.  They had mentioned during the first procedure when I'd asked about the heart that it was also normal if it took longer.  I felt this hadn't been made clear to me ahead of time either.  Back then it had been an overwhelming visit in an office after talking to people all day, but I had asked about fetal pain and how the death process went, and I remember being told it was typically a partial and then two full cycles.  She had said that it can sometimes take longer, but I guess sometimes was more often than I realized and longer was longer than I realized.  In retrospect after further thought and prayer, I don't blame the doctors in any way for this miscommunication--what they shared was accurate to their understanding and experience.  It's just their experience was greater than mine in this field by a lot, so I had misinterpreted it.  I had to evaluate if this understanding would have changed my decision in any way, and ultimately I still felt we made the right call, even if it wasn't in any way a call I feel any parent or human should ever have to make.

When I mentioned the heart slowing down taking longer than expected, Dr. Jeb mentioned that it might still be slowing down even as Tella was now in the recovery room.  This startled me but also had me move to Tella and start praying again as the doctors left.  It was a bit strange because I'd already prayed all there was to pray, and Grace may have already passed on or might still be slowing--it was entirely impossible to tell.  To some degree it almost felt a bit of a sacrilege that they don't leave the ultrasound camera on until a Baby A totally passes, but I also get their perspective.  Once the cord is cut and the flow is verified to have been fully occluded, all risks to B have been as averted as they can be and Baby A is actively dying and will not be coming back, so there is no need to waste time and watch as others have emergency procedures that need done, too.  That said, it's almost a sacrilege to me as my little one's life is infinitely sacred.  My whole reason to be there was to be with her until the last heartbeat and last twitch and last brainwave stop.  

At this moment knowing that Grace might still be slowing down and dying, I felt at peace since I did have faith God was with her, and her sister and mother were definitionally with her, but since she might still be there I wanted to make noise so she could hear my voice, too.  It was hard to do though, because the recovery nurse was now asking Tella if she could get a drink and trying to be positive and relay instructions that are typical at this stage because they now need to start taking care of her.  Again, this struck me as a bit of a sacrilege, even though it was no fault of the nurse's.  I should have verbally asked the nurse to leave for a few minutes and come back, but instead I just partially interrupted by singing 'When we all come together' and breaking down a bit.  It made the nurse uncomfortable enough that she eventually hurried and left.  This let me keep talking with Tella loudly so that Grace could hear me if she was still there.  Ultimately, with everything prayed over and surrendered, her going to sleep for the last time on this side while hearing our sound is all that matters as she can't process our language yet, but she does recognize the voice of both caregivers.  Eventually, I knew she should have definitely have passed.

The conversations I had with Tella at this time included hearing that Tella felt a great sense of peace, which made me very glad as this change in information and expectations at the end had shaken me a bit.  (I hadn't re-evaluated yet if this new information changed anything--that came later in the day).  As such, I was a bit internally rattled, but we talked things through, worked out next steps, and also started to get me a guest meal voucher so Tella could finally eat.  For the procedure she hadn't had food since midnight or fluids since 5AM.  I then went down to get coffee for me and a pudding cup for Tella.  On the way, I sat in the main open-air atrium that goes up 7 stories to the sky and looked at the clouds.  Sitting in the sunlight I again prayed and thought through the new info--that death takes longer sometimes with this procedure and that the risk is 10% through Friday, not just right away.  Eventually I felt reaffirmed in our choice and re-surrendered both girls to God.  I then went down and got the food.

A few hours of conversations with nurses, financial officers, and texting and responding to facebook messages later, it was time to check out.  Tella said she didn't want to worry me, but she hadn't felt any movement.  I asked the nurse if they could do a heart rate check, and she said they do not until the Friday visit.  She also said the anesthesia makes it frequently the case that no movement is felt by the mother; she said that one of mothers who underwent the procedure's main complaints was not feeling fetal movement even when Baby B was fine.  I think we felt a bit better knowing it was normal, but it raised a bit of a new stress in me over Baby B.  Eventually I was able to turn that stress over in prayer, and we headed back to the Ronald McDonald house and Simon and extended family.