A Visit to Children's Hospital of Philadelphia in July of 2023

Our trip to Philadelphia started off a bit rushed.  We'd hosted the 4th of July party for the dojo the night before, and we had cleaned up as much as possible that night, but we still had to get around in the morning and pack for Simon to stay with his grandparents, pack for ourselves, meet a person who had wanted to swing by for an unknown reason, and chat with one of the dojo students who had spent the night in our basement.  The night before, sleep was a bit disrupted as Simon had woken up very upset and needed calmed and rocked down for an extended period of time.

Thankfully, each part of the morning went relatively smoothly; the visit with the individual was emotional, but a blessing (they had heard about our circumstances and gave us a card that contained money that would cover much of our airfare), breakfast with the dojo student was busy but fun as I was cooking for Simon, Tella, them, and myself, and the packing went as functionally and as dysfunctionally as any packing before a trip goes.  My parents arrived while we were wrapping up packing for Simon, and we exchanged notes about caring for him while loading things into their vehicle.  We almost forgot to send a pack and play for him to sleep in, but we remembered on their way out; a notable blessing was that Simon was actually having enough fun with them that when I leaned in to take him, he actually wanted to stay with my dad.  Considering that he almost always wants to tilt over and have me hold him even when my wife has him, this was a good reassurance for both Tella and I.

We left later than I intended, which left me with a fair bit of extra stress; though Wichita airport is small and security is fast, we still could absolutely not afford to miss our plane, and we had eaten up much of our buffer before even leaving.  I didn't want to add stress to Tella, so I didn't tell her how close our departure made things in my view, but it was definitely making me drive as efficiently as possible without any stops except to fuel up.  Despite the window being tight, I still drove through the bank to deposit some money and ask about a security hold on a check we'd deposited.  Due to our cost-sharing plan not covering things until after itemized bills have been submitted (and a subsequent processing time), my parents had written us a large check as a buffer to our accounts that we needed to be there since this visit would cost over $37,000 up front.  They said they'd look into releasing the hold, and we hit the road.

On the road I got a few helpful calls, including one from the bank letting me know that the security hold was released so we could write our check without concerns; this was helpful because I would have otherwise have had to transfer out of my business's account in an amount that would have left us vulnerable to overdrafts along with maxing out one credit card and largely filling another.  I could have paid that all back off once the security hold left a few days later, but that was a hassle and risk that was better not to have in the back of my mind with everything else going on.

At the airport, we found out that our flight had been delayed, so we went and got some food.  As we ate near our terminal and additional delays started coming in, we discovered that Chicago had a full ground stop occurring.  Our flight was through Chicago, and we began to become concerned that we wouldn't make our connection flight.  After another hour delay was announced, I ran up to the desk to ask about our connection and getting a new one, because we were likely unable to make it.  The attendant told me that our connection was like our flight in that it hadn't been allowed to leave Las Vegas to fly into Chicago due to the ground stop, so we could possibly still make it.  There was also a risk that the connecting flight stuck in Las Vegas would get cancelled.  After further discussion, the attendant was able to transfer us to a later connection that would get into Philadelphia later than we wanted, but that would at least still arrive.

Tella and I were both already near emotional, functional, and energetic capacity.  This trip itself all came together in a matter of days, and we had to do a tremendous amount of work during my dojo's summer camp (which is a very busy time) to prepare for it, and this trip was also about the life and death of both of our twin girls.  Between the work, lack of sleep, and anxiety and stress, we were both fairly shot.  As such, even though I was happy that we had a new connection setup, the threat of possibly not arriving was very jarring. 

A further delay was then announced along with the agent telling all of us that, though they couldn't say anything official, our flight was likely to be cancelled.  This spurred me to run up to the counter a second time while Tella and I both pulled out our phones to start looking at other flights with other airlines at other airports, regardless of price.  My first discussion with the agent basically didn't yield much results.  They couldn't get any connections or re-routes for us through United because they all route through Chicago as their hub.  Even if we drove to Kansas City, Oklahoma City, Dallas, or Denver, we would face the same trouble.  Since they could only use United options and seemed unable to get us there even when I mentioned that we were going for an urgent medical visit, I stepped out of line and started looking at rough options with Tella.  Our original flight should have departed around 1PM, but it was already about 5:30PM and there were very few redeye flights that would make it to Philadelphia even from distant airports.  Since our appointment was at 6:30AM the next day, things were looking pretty bad.  There was a redeye in Denver, but I didn't know if I could stay awake for a seven and a half hour drive that would arrive around midnight with the time zone change.  We also determined that the flight would board 20 minutes before we arrived at the parking lot, so that one got ruled out.  I jumped back in line while Tella and I both continued to look for options.  This time I got the other agent and asked about private charter flights in the area, if they could look up other airports even further out for departure, and if they could fly us in to New York or somewhere somewhat close to Philadelphia such that we could get a rental car and drive a couple hours if we had to.  When she heard how desperately I was looking and that it was an urgent medical appointment about our twins, she asked her fellow agent permission to do something and got an affirmative.  They then had a discussion between themselves about the American Airlines flight two counters down from us and one asked the other if it had seats.  She ran over to the American Airlines counter and talked with a senior person there, and then she ran back and said it did have two available to her co-worker.  At that point, they did something that I think they typically aren't allowed to do and printed us a very strange looking voucher and/or ticket that they told us to hurry and run over to the American Airlines desk.  I thanked them both and Tella and I got their names, then we ran over to the American Airlines booth.  We had to wait a few minutes, but when the person in charge there came over, he took the voucher and printed us two tickets that got us to Dallas and then to Philadelphia.  Instead of a 9PM arrival, we were now looking at a 1AM arrival, but at least we would make it there.

Grateful and exhausted, we boarded ten minutes later and flew to Dallas in a bit of a daze.  It felt a bit like that last bit of stress after everything leading up to the trip was almost too much, but we were truly thankful that we had made it when it looked like we shouldn't have, and I directly considered it answers to prayers for the many people that had been praying for us.  By all of our options and all of our searching, we couldn't have gotten this or any other flight on our own power even spending thousands of dollars.  It was just too late in the day and too many airports didn't have flights that could connect.  Without this over-the-top effort from these agents, we would not have made it.

Once in Dallas, we got a bit of food and headed to our new terminal.  This flight was also delayed, but only by 30 minutes.  With a 1:30AM arrival now, I called the hotel to make sure they wouldn't cancel our reservation, and they said as long as we made it by 3AM, we would be fine; if we did not make it by then, they said they would auto-cancel it, even if we still wanted it.  While I didn't love that policy, it was what it was, so I told them we were still on the way and hung up.  As we were boarding, I saw some brown stains and napkins on the right side of the jetway, and I wondered if someone had spilled something or if someone had gotten ill.  I also wondered if someone getting ill was related to the delay.  On the way to the back of the plane, we passed a gal who was violently vomiting while her husband held paper towels up near her mouth to catch it.  The man in front of us pointed to an airsickness bag and passed it to them.  I tried to wait until there was a gap in the line so we could move past quickly as I didn't want to risk Tella getting sick with everything else.  Once we were in our seats, we saw a variety of people over the next 45 minutes walk up to the couple and talk to the couple.  I also saw a firetruck pull up near our plane.  Eventually, they escorted the gal and her husband off the plane and apologized for a further delay.  They explained a passenger had taken ill, and we would now arrive at 2AM.  I found myself wondering how many more little challenges we'd be able to handle, but I also hoped this would be the last one.

We slept and/or attempted to sleep on the flight, because it was obvious we wouldn't sleep much at the hotel.  As soon as we landed, I asked our attendant how long of a walk it was to Terminal B's ground transportation zone, and they said it was just a few minutes.  I then compared Uber and Lyft and set up a Lyft ride to pick us up at Terminal B arrivals.  Once we were off the plane and walking, I told the app to find a driver.  Unfortunately, when we got to the exit to ground transportation, we found it locked shut with an employee cleaning it.  He said we all had to walk to a different terminal for ground transportation.  I once again wondered just how many little things could go wrong and also wondered if this was a sign, a trial, or something else; nonetheless, I called the Lyft driver while we headed that way, and with his limited English and my explanations we eventually got him to meet us at the other terminal's pickup zone.  

Our new arrival based on Lyft was at 2:35AM, but that was still before our hotel would cancel.  About three blocks from the hotel, we saw police lights and heavy construction equipment, and we found out the road was totally closed.  Our driver was confused but said they would likely start moving in the next half hour or so.  Again, wondering how many things could go wrong but also being impressed how many things were still working out despite that, I explained that we had to get to our hotel by 3AM or they'd cancel our reservation.  He initially couldn't find a way around the construction, but when he heard that he looked at his app and drove us through some apartment's parking lots to get us closer.  He then may have driven through a closed portion of the construction zone or it may have been open--none of us were sure, but he dropped us off at the hotel.

Inside the hotel lobby, we realized that I'd navigated us to the wrong hotel in my sleepy daze, so I got another Lyft to get us the last half mile to our hotel.  It was an estimated 20 minute walk or a 7 minute Lyft, and it was 2:40AM.  Just to be safe, I did call the hotel, and this hotel employee was dramatically more helpful.  He said he could just check us in over the phone, which we did.  We arrived at the hotel, totally spent, at 3AM.  I scheduled a Lyft to pick us up at 5:40AM, and then Tella took a shower and I went to bed.

The morning of the appointment, I got up at 5:09AM and showered, drank water, and headed downstairs.  The little coffee maker in our hotel was too slow to get me coffee before we left the room, so I bought some for $2 in the hotel lobby, and it finished pouring right as our driver pulled up.  This was already a better start than much of how the day before had been.  The ride to the hospital went fine.  Our driver and I chatted about her job and her spiritual counseling business, and she got us to the hospital a bit earlier than anticipated.  Check in at security went smooth, and we followed the directions we'd received to get to the main elevators.  We were a little bit startled and amused by the elevator, which has children's voices animatedly announcing which floor we are on and where we are going, but we rode up to the 7the floor.

Once there, we got a strange announcement to internal staff across the PA system about a Code Red on floor one, and all the fire alarm lights started strobing and there was a buzzing alarm that started repeating.  The fire doors were also all shut, so it was hard to figure out how to get to the fetal medicine center.  The one or two nurses I passed were totally unconcerned and going about their business, but they also did not interact with us.  We got into the office where we were supposed to check in, but no one was there.  I poked around a bit since I wanted to find out about the alarm and our check in was in ten minutes, and finally a lady saw me and asked if she could help me.  She explained that the alarm was likely just a drill and that the secretary would be in at 6:30 to check us in.  

Our secretary actually ran late, but when she got there at 6:40 and finished getting herself and her computers set up, we were able to start checking in.  Eventually, after filling out some extra paperwork, we were taken back for our first long set of ultrasounds.

The ultrasound technician was very friendly and helpful.  Since we already knew about the limb body wall complex diagnosis, she was able to talk about some of what she saw.  Tella and I have named Baby A Grace, because she is a grace to us as long as we are blessed to be her parents, and she is a grace to her sister.  We are still settling on a name for Baby B; she is lively and mobile in all of her ultrasounds.  She is also constantly in the ultrasound pictures with Grace and interacts frequently with Grace in both a playful and comforting way.  Both babies are able to hear sounds and likely can differentiate my wife's voice and my voice.  Both also respond to stimuli, so they do smack each other's hands and feet frequently.  

One of the hardest parts about our decisions and this diagnosis is that Grace's brain development and upper body are totally normal.  She can hear and feel as much as her sister, and she is at this moment that I write actively alive and moving in her mother.  It was only a week and a few days ago that I was actually able to feel both babies kicking, but Tella has felt them both for quite some time.  It's not that Grace is real to us, it's that Grace is objectively real and is alive right now inside of her mother.

Going into this appointment, we knew that Grace had a large opening from partway down her chest to her lower abdomen; we also knew that her spine was bent and/or twisted.  We were told that all of her organs were normal and inside of her but that she was extremely growth restricted.  Based on our information at that time, it looked like she had an extremely low probability of life, but still an extremely small potential.  We had connected with one family whose child had survived limb body wall complex and had connected with a group that claimed to contain a few other survivors.  I'd also found a few in other countries who had survived.  The family in Canada had been told their son had a 5% chance survival rate, but most doctors I've spoken to just call limb body wall complex terminal, and it appeared that the rate was much lower than 1%.  In general, we were told limb body wall babies have a 60% chance of live birth and a 40% chance of still birth.  In live birth, virtually all die within minutes or hours.  In cases like ours where the twins are monochorionic and share a placenta, if one baby dies the other has a 20% chance of dying and a 30% chance of suffering minor to life-altering brain and kidney damage.  For us, that meant you multiply 40% by 20% to get a death risk of 8% and 40% by 30% to get a disability risk of 12%.  The Radio Frequency Ablation procedure that our doctors and Philadelphia wanted us to consider that would terminate Grace to protect Baby B has a 15% death risk to Baby B.  As such, the procedure was slightly riskier than not doing it (as far as death goes); if disability is included, doing the procedure was slightly better for Baby B, but that was obviously terminal to Grace.

Now at the appointment, however, we were expecting to get updated information.  As the ultrasound technician moved around, we asked some questions that she could answer and talked about various things she could see.  Grace's spine appeared to bend at greater than a 90 degree angle making what was steeper than a sudden T turn.  It was unclear if this was actually a straight bend or if there was a rotation and we were looking at a spiral in 3D space from an angle that made it look like a bend.  As we continued and approached the end, the ultrasound technician noticed Grace and Baby B facing each other and cuddling.  She chose to take a 3D image at this time and clean it up.  I had a premonition at this moment.  I felt like she had seen some things that were much worse than we had been told and was leaving us a memento.  It felt like a rock in my heart and my gut, but I chose to disregard the premonition and not tell Tella.  A friend who had been praying for me told me that he had perceived in prayer that I should watch my breath and speak life.  At this point, it was just a feeling that could be wrong, and there was no point in further stressing my wife.

After this, the radiology doctor came in and did further imaging with the ultrasound technician, then he had her leave and took more angles himself.  He was required to type notes on these additional images for the other doctors who were viewing them live in the other room and for records, and as he started typing, a weight hit my heart and I began to feel a constant sinking.  Each thing he typed was a bit of my hope dying.  Each thing he type made me want to weep for my poor little girl as I better and better understood her state.  External Liver.  External Stomach.  External Intestines.  Partially External Heart.  Liver Cysts.  It took all of my mental control to not start audibly crying for Grace.  Even though he was clear that he couldn't talk much and was very brusque, I actually interrupted him when he typed UA to Aorta.  I asked--"there's actually a uterine attachment to the aorta?"  He said that he'd never seen anything like it before.  This is from a man at Children's Hospital of Philadelphia, who sees multiple sets of twins in dire straights each day and who has likely seen dozens of limb body wall babies this year despite its relative rarity since almost everyone with this condition goes there.  My heart sank further.  I wondered for real if they could even do a C-section on our girls, or if that procedure would rip our little Grace apart.  I didn't know the nature of the uterine attachment at the time, but based on what he'd typed there were several other attachment points, as well.  I remembered my friend saying I should speak life, but I wondered in my head, "how can I speak life, when all I see is death?"  We went out to the waiting room, and they rapidly called Tella back for her echo-cardiograms of the babies; this procedure did not allow me to be present due to the size of the room.  I was left to get food for us and wait.

Initially, I moved to the far corner of the waiting room from other people, tilted my head so no one could see, and I just cried.  I cried so deeply that I don't have words to explain it.  As I tried to keep my physical weeping quiet and soft to not disturb others, it felt like my heart and my spirit were screaming as they cried so loudly inside of myself that I couldn't hear any thoughts for the volume.  This continued for quite some time in intermittent bursts.  Eventually I calmed down enough to respond to a text from someone who was praying for us and to head downstairs to get food for us.

Back in the waiting room, I ate my food and waited for Tella.  Her exam took longer than expected, but she eventually came out.  At this point we were able to discuss a little of what we had seen and what we expected, but we still hadn't met our doctor or our nurse coordinator, yet.  Eventually, our nurse coordinator showed up and took us back to a conference room.  She shared some info with us and explained that we first have to see a genetic counselor, since that is part of every visit, even though our condition is not genetic.  We also knew it was not genetic, so I didn't see the point of this visit, but it was required so we went into the room and chatted further with our nurse coordinator.  We were able to find out a little information from her to confirm my suspicions, but not too much.  We then met with a genetic counselor and went over family history and such.

After she left, we talked more and cried a bit.  Then we were met by a gal running a twin study who wanted to ask us if we'd agree to share medical records.  Upon asking details and finding out that they were just collecting statistical data that could help others in boats similar to ours in future, we agreed to join the study.  We still had not seen the doctor, so when she left we talked more and waited, with nervous energy, sadness, and exhaustion.

Eventually the doctor, a fellow of theirs, and the nurse coordinator came in.  She sat down and went through the highlights of what they'd found while we asked many questions.  She did give a more up-to-date and thorough explanation of current understandings of limb body wall complex's formation, so I will share that here in case it is helpful to anyone who may find this on the web.  My understanding despite reading many papers on the subject was still insufficient since there are three main competing hypotheses as to the cause of limb body wall complex and several differing thoughts.

First our doctor brushed us up on twins.  In cases of identical twins, one zygote (a fertilized egg) splits into two different, identical twins.  If this separation happens very early, it is possible even for identical twins to have two placentas (these would be dichorionic twins, which are usually only fraternal, but can also be identical in this type of case).  If the separation happens later, they are monochorionic twins (one placenta), but they each have their own amniotic sac (this is how Grace and Baby B are).  If it happens later, they are monochorionic but share an amniotic sac, and if it happens later than that, they become conjoined twins.  As far as limb body wall complex goes, as the babies develop, they fold multiple times, and each fold 'seals' part of the body.  Among these folds, there is a forward fold that would seal the chest and abdomen, but it is interrupted (likely by an amniotic band), so much of the connective tissue that should be on the front of the body and the abdominal lining are totally missing, leaving the organs exposed.  This is coupled with a short umbilical cord, so there is pulling pressure near the umbilical cord pulling on the unsealed organs.  This pressure and pull also affects spinal formation, which results in the severe spinal bends/scoliosis associated with limb body wall babies.  Other folds may also be interrupted, which is why some have open heads, open neural tubes, and/or exposed brains.

She then explained that this limb body wall was, however, not even her current primary concern.  Grace has a two vessel umbilical cord, which happens sometimes, but there is no ductus venosus for it to connect to.  Instead, it goes directly into the atrium.  She indicated that the ductus venosus is necessary to regulate the pressure from the placenta and decrease it to tolerable levels for the baby.  Without that, it is too much pressure for Grace's heart to handle.  Her heart is also showing signs of thickening to handle it in the short term, which our doctor feels will likely lead to heart failure in utero within two months.  The even bigger concern to our doctor was that the Dopplers of Grace's blood vessels were showing signs of imminent (within 7-10 days) fetal death.  Apparently the waveforms have a few different degrees of failure, the third of which is extremely imminent.  Though there is no way to tell for sure, the current Dopplers seem to indicate that Grace is actively dying but in the next couple of weeks instead of in the next couple of days.  Our doctor did indicate that it is possible to get poor reads like this from strange conditions at the time of testing, but she also said that getting better reads is extremely rare.  Since we were only seeing the initial signs of failure, she felt we could probably head back for the weekend to discuss things but that we would need to do a Radio Frequency Ablation procedure soon to protect baby B if we wanted to do one.  At the time of the procedure, they will do Dopplers to verify what they saw before.

This was a lot of new information to take in, so we asked more questions.  At times I would need to pause due to starting to cry, and I noticed the fellow was occasionally close to crying with me, but we managed to exchange further information.  The team was very sympathetic to how hard this was for us, but it was nonetheless still challenging to come up with all of our questions and have this discussion as emotional as everything was.

I asked about the rest of the limb body wall diagnosis, and our doctor said she'd never heard of one surviving long-term at all.  I shared the data I had from Oakley's case with her, and she was quite interested to read about a surviving limb body wall baby.  As she read it, she clarified that Oakley's paper indicated he still had his organ lining, which would correlate more with an omphalocele, whereas ours had no organ lining, which would be more similar to a ruptured omphalocele.  She said they frequently operate on and save babies with omphaloceles but that the survival rate for ruptured omphalocele is zero.  This helped clarify to me in that moment that Grace had no survival chance after birth, which was different from my original understanding.  It was a hard hit, but that understanding did make me ask other follow up questions.  I verified that her liver, stomach, intestines, and part of her heart were all outside of her body.  Besides her not having a ductus venosus, we found out the umbilical artery connects directly to her aorta, which they have never seen before.  There are also other attachments between Grace and the uterine wall.

One of the tougher questions that I asked was about fetal pain--starting this question caused me to cry, so it took a moment to get it cleared up and get the question out.  My understanding was that experts debate greatly about whether fetuses feel pain.  They clearly hear sound and feel pressure, but pain is not so clear.  Some experts say fetuses feel pain at 12 weeks, and others say not until after birth.  Due to the highly political nature of this debate, experts tend to be split to extreme time frames.  That said, the American Academy of Pediatrics tends to recommend analgesics to babies and fetuses around 20 weeks.  Though our doctor slightly contradicted herself in her explanation, she indicated that baby A shows no signs of active distress or pain at the moment, and would likely not feel pain during the procedure.  I asked how long death from the procedure was--apparently the initial lack of blood lasts 30 seconds followed by two 60 second cycles and then the heart stops beating.  Hearing it then and even typing it now caused me to cry again.  

Our doctor said in general that Grace has no chance of living more than a few seconds to maybe minutes.  She did say that she cannot give an estimate of what our new stillbirth odds would be, as this affects the risks to Baby B, but if she had to go by feel for a number it would be something like 99.95% likely that Grace will die in utero.  This changes our risk numbers to Baby B substantially--we are now looking at 20% death risk and 30% risk for brain damage or kidney damage with no procedure along with 15% or slightly less risk of death with the procedure.  Apparently 85-88% of the procedures yield good outcomes for Baby Bs.

We were too tired and emotional to form final questions, so they stepped out for a few minutes to give us time to talk and come up with anything else we wanted to ask.  At this point, Tella burst into tears, and we both got up and held each other and cried, fairly extensively.  I held her and both of my girls and comforted her as best as I could.  It was hard.  It was very hard.  

They came back in and we asked what questions we could muster; they gave us contact info if we had further questions, and though the coordinator was pushing us to schedule an RFA procedure Monday, the doctor felt we likely had time to return home to think it through more, which we decided to do.  We were then dismissed.  

Our way out felt kind of like we'd been through a war.  It was something I could process mentally, but catastrophic to process emotionally.  I felt like my heart and my head were immediately at war.  If it was only Grace, I'd never even consider a procedure like this.  That said, it was truly not only Grace.  Also the risks to Baby B just became much more evident and also much higher while Grace's survival odds past birth dropped to nonexistent.  

We both talked about all of these things on our way out.  I actually asked that we pass the elevator with the chipper child's voice so I could calm down a bit before taking it down.  I wasn't in a mood for that level of cheeriness.  After that, we continued to talk through things at the food court and also on our way back to the hotel, and then in the hotel.  There was a lot to discuss and process.  I called a friend who had asked how things were going and had a tough chat with him about when he'd had to make the call to pull the plug for his father.  We also ate and went up to our room.

In our room, I asked Tella if she'd mind if I talked to the girls since they could hear me.  She said it was fine and laid down to where I could put my head right near and speak.  I don't remember everything that I told them, but I assured them both that their mommy and their daddy love them SO much.  I assured them that they are both treasured and valued, and that we want to best for them.  I also cried violently as did Tella, but I continued to let them hear my voice, even knowing they can't understand the words.  I pray they can understand the tones and the sentiment behind them.  It was so awfully painful.  This was possibly my only time with both of them again if Grace passed on our way home to deliberate; the doctor said it was likely she'd last longer, but she couldn't be sure.  After some more exhaustion, I responded to some texts of people who were praying for us, and then I showered while Tella went to sleep.  Eventually, I joined her.

2:30AM came early, but our return flight to Wichita had also been delayed (I forgot to mention that--they'd texted me during our morning ultrasounds, and some of our discussion that day had been whether to go with their automatic reschedule that they'd given us for terribly early the next morning or whether to try and still get home on another airline that night--we'd opted to get at least a bit more sleep and eat at the hotel so to return the next morning).

Our return flights were uneventful except that we occasionally cried at random intervals.  At one of the intervals on the flight home, though, I had a thought that made me cry for awhile that I later shared with Tella on our drive home.  I do not deny that God has the ability to perform a literal miracle and knit Grace back together before our next ultrasound.  I also do not deny that if He does not perform a literal miracle, that my baby girl is dying and will fall asleep next to her sister, most likely due to congestive heart failure within two weeks.  If she does, she may take her sister with her.  If we do this procedure, she'll also fall asleep next to her sister.  It's just that her odds of taking her sister with her are a lot less.  I cannot *think* for Grace, because she wouldn't even think in communicable words until she was older than our 16 month old, but while I was wondering how Grace would answer this dilemma, I felt like I heard her voice saying that she wouldn't want to take her sister with her.  I know this may not truly make rationale sense, but I couldn't 'put' the burden of her sister's death on her.  If she had a choice, I feel like it would be to sleep earlier and save her sister.  This again caused much tears.

Though I may hop on here again to share some of the various thoughts I've had about this as we work through this terribly painful decision, the truth is that we don't have much time to make it.  Baby A could go at any time, and if we wait past Friday it is illegal to do the RFA procedure, so I likely will not have time to post much more here.  Nonetheless, I wanted to give a true and thorough update to the many of you whom have prayed for us and supported us over these harrowing months.  It is truly, and deeply appreciated.  Thank you from the bottom of my heart.

--Brandon