The Book of Love

It has been 148 days since I found out I was pregnant.

It has been 131 days since I was told I had a miscarriage.

It has been 127 days since I saw Mira's heartbeating on an ultrasound.

It has been 119 days since doctors assured me that Mira was healthy and we celebrated a miracle. 

It has been 85 days since I cried and asked an ultrasound tech "Is it really bad?"

It has been 45 days since it was confirmed that Mira could not survive after birth.

It has been 148 days since I fell in love with my daughter.

Time feels so important right now.  148 days ago I didn't think I could stand waiting 9 months to meet my child.  Now, I want to slow time down.  45 days ago feels like years ago, and yet like it was yesterday.  Joe and I are doing our best to spend every minute we can focusing on Mira and creating enough memories in these next couple months to make up for the decades we are losing.  I struggle with feeling guilty when I focus on anything except Mira.  If I miss reading to her and talking with her one night, I feel horribly anxious and like I have failed.  The truth is though, no matter what I do now, I can't make up for the lifetime that I am going to miss with my daughter.  I can fill her life with nothing but love.  That is what I am doing and what I will continue to do.  I will ensure her life is respected and honored.  I will have to count on God to show her all the things I cannot.

Such a short time,

Such a long road

All this madness

But I know

That the silence

Has brought me to His voice

And He says,

"I've shown her photographs of time beginning

Walked her through the parted seas

Angel lullabies, no more teary eyes

Who could love her like this?"

(I Will Carry You, Selah)

Yesterday, Joe and I returned to CHOP for our follow up visit.  I had an ultrasound to check on Mira, met with an OB and midwife to officially transfer my care to CHOP, and met with a psychologist and neonatologist.  It was a long day, but much shorter than the last visit.  This time we were there about 4 hours.  We expected this to be a very depressing and horrible day.  We expected to spend the four hours talking about the death of our daughter.  Instead, the amazing staff at CHOP made it a day about us as parents and making us feel as in control as possible.  They made it a day about Mira's life.

The ultrasound went as expected, no shocking information.  I have little to no amniotic fluid at this point, due to Mira's inability to swallow and her kidney/bladder concerns.  Mira's lungs are also not developing properly due to the lack of amniotic fluid.  Her head is currently measuring at 30 weeks, though I am 24 weeks (and her body measures 24 weeks as well).  At our 18 week ultrasound, her head measured 20 weeks, so it continues to grow at a faster rate due to the hydrocephalus.  Mira's heartbeat is still strong at 143 beats per minute.  I saw her wiggle/kick as the tech pushed on her and felt it as I saw it.  It is so strange to see something on a TV screen and feel it inside you at the same time!  I'm sure all the other Moms can relate!  

The OB and midwife went over my medical history and gave a basic physical.  Both were wonderful and kind.  Next we met with the psychologist and neonatologist, both part of the palliative care team.  I asked the neonatologist to bluntly and specifically tell us exactly what would happen to Mira if we asked them to do everything medically possible to help her survive (rather than using palliative care).  I explained that Joe and I were not considering this, but I needed to hear exactly how bad things would be, so I could remind myself of this if I had doubts about our decision, either now or in the years to come.  Our human minds are so good at playing tricks on us and making us think we could have done more.  I would like to share these details with all of you, in case you have wondered why we are not choosing "heroic" measures for Mira.  If you do not want to know these details, skip over this next paragraph.

If we chose NICU treatment for Mira, I would still have a c-section.  As soon as she was delivered she would be taken to a warmer, suctioned and intubated.  Even with a ventilator her undeveloped lungs would struggle to get enough oxygen to her body.  She likely would need to be resuscitated a number of times.  The doctor said they are very good at this and would most likely get her to the NICU alive.  During this time, we would not be able to be with her, she would be with medical staff only, as I would be in the OR still and Joe would not be able to be there until she was stable.  If Mira survived all this, she would need an IV to sustain her.  The doctor believes that most likely even with all these interventions she would not survive more than a few hours, or maybe a day or two.  If he is wrong and she did survive, she would be looking at several surgeries on her brain, heart, bowel, and bladder.  Likely a catheter and dialysis.  If she managed to survive all that, which is nearly impossible, she would not have any quality of life.  She would be unable to talk, walk, express her needs in anyway, and live much like a coma patient but aware and very possibly in pain.  We will not put Mira though this pain and suffering just so we can try to keep her longer.  

If we chose palliative care (like we have), Mira will be born via c-section (due to her head size).  She will quickly be suctioned and cleaned and handed to Joe within minutes or even less.  If I feel capable during the surgery, I can hold her as well.  At the very least Joe can hold her next to my face.  Mira will never leave our side.  The psychologist will be present to support us and ensure our wishes are followed.  She will also take lots of pictures.  Once I am closed up, we will go back to our room and have Mira with us without any medical equipment.  Medical staff will monitor closely to watch for signs of distress that could indicate she is experiencing pain.  If she is, she will be given a sedative that will prevent her from feeling discomfort.  We can be with her, take pictures, give her a bath, etc for as long as we want, no matter how soon she passes.  

Originally, Joe and I believed that we would have only minutes with Mira alive.  The neonatologist, said this is still possible, but it is also possible we could have hours or even a day with her.  He seemed to feel most likely we would get around an hour.  An hour seems wonderful when you thought you had no chance at more than 2 minutes.  He was very clear that it is impossible to accurately guess this though, and we should be prepared for anything.  

The psychologist then went over what we wanted and what support we had/needed.  She was wonderful.  All the things we already planned (a bath with special soap, a special dress, her blanket and stuffed fox, NILMTS photographer) were all okay with her and she had other ideas as well.  She wrote everything down and will type up a plan that we can continue to add to over the next visits.  This plan will be shared with everyone to ensure our wishes are followed.  Next time we will also meet with a Child Life Specialist, who will help us plan memory making options. 

We still do not have a date for the c-section, in fact, we were given a broader range of dates.  At this time they are thinking 32-36 weeks, which would be early December to early January.  We go back in three weeks to check on Mira's head size.  They believe they will be able to give us a date at the following visit (so maybe the end of November).

Thank you to everyone who has been praying, texting, reaching out, sending gifts/cards, reading this blog and commenting on it, and supporting us in any way.  It means so much to both of us.  This journey has been such a roller-coaster of feeling blessed to carry Mira, and feeling terrified and angry to lose her.  I know that these feelings will continue for years to come.  Support from others is what gets us through, so we thank you.  

Reading to Mira about her namesake-
such a beautiful gift, thank you! 

The book of love is long and boring

No one can lift the damn thing

It's full of charts and facts and figures 

And instructions for dancing

But I, I love it when you read to me.

And you, You can read me anything.

The book of love has music in it,

In fact that's where music comes from.

Some of it is just transcendental,

Some of it is just really dumb.

But I, I love it when you sing to me.

And you, You can sing me anything.

(The Book of Love, Peter Gabriel)