May 22 Public update about our twins that I posted to Facebook

 On May 22nd I posted:

"We received good news and bad news at our appointment today. Baby B is healthy and shows no complications. Baby A appears to have Limb body wall complex, which our doctor indicated is terminal. Upon some further research, there seem to be some extremely rare cases where a baby survives it, but they are essentially anecdotal in frequency. There is a strong potential that we will have to make some very hard decisions later on as one identical twin doing poorly or dying in utero can have a heavy effect on the other. There is a rather awful-to-consider but sometimes necessary procedure where they cauterize one umbilical cord to starve and kill the one doing poorly to save the other lest both die. There are also questions about whether hospice for a baby who will be suffering for up to 36 hours before dying is the most merciful choice. There is also an astronomically tiny grain of hope for two live girls who make it. Either way, we will be the best parents we can be for each of them for however long we are their parents. Nonetheless I would request prayers for both of them and for us. While I appreciate people sharing support on here, I don't wish to share further details about this situation in facebook comments, so if you want to engage in a discussion with me about it please wait a few days for me to process through some of this and then private message me or call me. Thank you sincerely for your thoughts and prayers."

This visit had been tough, because we were told (somewhat incorrectly) that we did not have ectopia cordis or an omphalocele (which are 10% lethal) but that we did have limb body wall complex, which was terminal.  I may post about this day later as it is fairly strong in my memory, but we will see.

Comments

Post a Comment

Popular posts from this blog

Induction, Waiting, Induction?

Right before our induction here in Hays on Tuesday afternoon, I accidentally opened a can of worms by asking our OB if there was any reason to be concerned by the suspected uterine attachments mentioned in our ultrasound notes in relation to the induction.  He was fairly concerned since he was totally unaware of them and immediately recommended that we not go into the induction until he'd researched it more.  While this is good and was the right call, it was also very hard for Tella and I in a unique way.  While both of us are confident that delivering our girls' bodies will be very hard for us emotionally and psychologically, we also had both geared ourselves up for it and were prepared to take that step Tuesday night.  To suddenly not be taking that initial, hard step towards some semblances of closure left us both feeling a bit like we were in limbo. Today (Wednesday), we had to bounce back and forth between several parties, but ultimately it is deemed safest that...
Read more

Delivery

Image
We arrived in Wichita on Thursday, July 20th in the afternoon to begin our induction.  I knew what I'd seen in Philadelphia and that babies don't come back from the dead like that, but I still asked if we could verify with an ultrasound before we started for peace of mind.  That ultrasound was very brief in Philadelphia, God is capable of anything, and unexplained medical phenomena do (extremely rarely) occur; I wanted to make absolutely certain before we stepped into something we couldn't step back from.  The resident on staff was fine with that request and also thought it would be useful to see how the babies were positioned.   Having gotten quite used to seeing Grace and Abigail alive and moving in ultrasounds and quickly identifying their parts and positions, this ultrasound was very clearly an image of death.  It was emotionally difficult to watch, but it gave me total peace of mind going into an induction.  Without a cycling bladder, the girls' f...
Read more

I Miss My Girls

Most days are pretty normal, but sometimes something clicks that makes me want to physically cradle my girls in my arms and comfort them, even though I suppose it's really to comfort me since they aren't here.  These moments frequently bring some heartache and tears, and sometimes I will even physically do the motion of cradling them, like I cradled Simon in my arms when he was tiny.  I realized today in one of those moments that I really just miss them, deeply.  They were only here for a little while--I only felt their kicks through their mom's belly and only really saw them alive through ultrasounds, but every time we looked in on them and and watched them interact with each other and with the ultrasound probe, we got to know them a bit more.  The emotion I am really feeling now is that I want to see them and be with them more.  I miss them.  I think that's why the ultrasounds after they'd died felt so empty and barren and why they hurt my heart so much w...
Read more